I've had so much anxiety on this. So scary. I just found out I most likely have this and I'm waiting on a specialist to get back to me. Your video helps me feel a bit less scared. I found out because I had a panic attack and they tested me for this.
i was diagnosed in 2018, now in 2020 i’m still having inconsistent complications such as headaches, lower left side cramps, and irregular cycles. praying that when the time comes, it’ll go smoothly! keep your heads up ladies, we will get through this💕
I'm so thankful i found your page. I am 32. I have the same issue. Irregular periods, headaches, nasal issues, weakness, fatigue all the time and mood swings. I cry and am angry more than I am happy. Went to doc n found out I have a 2.5 cm tumor. My endocrinologist says I just need to take 💊 and it is possible tumor will shrink and prolactin level may decrease also. I start my meds next week but first I have to take this injection. Forgot what it's called. I really hope this all works out for good as I am suffering horribly from more constant daily headaches and weakness. My life is just declining when I can't do the things I love at a normal level any more. 😢😢😢 pls pray for me bcs I am very nervous. Also, thank God you are now better. Thanks again for sharing your story. Much 💜 and aloha from Hawaii!
I also have a pituitary tumor, I'm 31 and I'm presently on medication. I'm been on medication for 5 years now, I still have headaches but not often. I used to have milk coming out of my breast it has stopped now with the medication. I been trying to get pregnant and it has been very hard. I will keep you in my prayers
Hello Linda, How are you feeling these days ? I just had surgery for the second time. I first had this surgery in 6/2014 and had to have it again is past JAN 10th, 2019. The first time I went bind in my left eye it was the size of a golf ball and I always had bad headaches and the second time. I had very bad fatigue and mood swings, sick at the stomach all the time too.. It's been two weeks ago, and still get these bad headaches. When will they stop this time, last time it took about 6 weeks
Linda dont worry God will bless upon you and you will be come better after treatment,now a days very good treatment are available ,so dont feel scary, you msut be fine.God bless you
I thank God for your life and for the courage of sharing your experience. May God Jehovah, the God of Abraham protect your life and your family in Jesus Christ name!
Probably a bit late to comment but I am soon my have my third pituitary tumor operation due to it regrowing twice in 18 years. For anyone that is worried, don’t be, it will all be fine. 👍
I just read my mri that said I have a 10mm x 9mm tumor. I cried my eyes out. When my doctor called me and told me my abnormal prolactin levels could mean I have a tumor on my pituitary gland I didnt think anything of it. I knew that couldn’t be something I’d have to deal with. Here I am today dealing with this shock. I havent talked to my doctor yet. I’ll see the endocrinologist Jan 30th. The wait is agonizing. Would surgery be something I need since it isn’t bigger than 10mm in size? What’s it like taking the meds if that is my treatment of choice ?What are side effects that some of you all are dealing with? I’m so thankful to you for making this video. It’s so comforting, you have no idea! I know I was not but you feel so alone and scare after learning you have a brain tumor! God bless you and hope that you and your family are doing well!Sincerely So scared in California
Similar size to mine, went on medication and I felt normal again. FYI do the yearly check up. I didn't, I guarantee mine is back. My quality of life has dropped off a cliff. So I'll say I know how you feel, but it gets better alot
I'm 41 and just had a baby. I came out of anesthesia to a blinding headache I thought I was leaking spinal fluid from a failed spinal block but the hospital assured me I wasn't. However I was going blind and the headache was intolerable. 2.5 weeks in the hospital and I finally have a diagnosis. A one inch pituitary tumor. Thank you for the information. Prayers to all suffering as well.
My husband had the same thing and it was a nonfunctioning tumor slow growing. He experienced severe headaches, always had sinus congestion, fatigue, double vision, ED, weight gain and extremely high blood pressure. He often told me he felt he had water in his head and could hear whooshing sounds. His tumor was as large as a man's thumb and he had it a long time but with no symptoms.... until the last few months before his diagnose. The doctor operated on him for 8 hours and found it very difficult to remove and caused the tumor to become angry. In recovery My husband fell into a coma only hours after his surgery due to swelling around the tumor, which they did not remove. He never regained consciousness and died 4 months later. You are truly blessed to have found this in time along with a knowledgeable medical staff. These tumors are very serious and if a tumor is large then in my opinion should really be removed by opening the skull. That may have saved my husband's life had the doctor chosen that procedure and not the nasal cavity.
Debbie M. I am sooo sorry for your loss! And thank you for sharing your husbands story. It is very unfortunate that he had a very different experience and outcome than I did. But I agree with the part about the medical team. It is very important to go with a doctor that is truly experienced because this is a serious tumor. How old was he when he found out and did the surgery?
Bettie J My husband was 53 years old at the time of surgery. Your video was the closest description of the tumor being difficult as my husband's that I've run across. Surgery was done at USC in Los Angeles. I was praying for a bed to open at UCLA but that never happened and wonder if the outcome wpuld have been different at UCLA. Please keep us all posted on your recovery and thank you for sharing your journey.
windeecity I just uploaded my 3 month post surgery update and I for sure will be keeping everybody posted on my progress. Thank you again for commenting and sharing your husbands story and sorry for your loss!
Debbie M. This is so saddening I’m holding my self for crying . I am sorry for your loss. I can’t image my life without my husband... ask Jesus to heal your heart please, he cares for you deeply
debbie your are very right, patients are afraid to go for skull open operation, but my opinion its best for pateint to go through proper operation and dont chose nasal opreation if tumor is big.
Thanks for sharing your story. Guess what? That was my story last year, pituitary tumor. The Tumor pushed the right optic nerve to the corner and compressed my pituitary gland without reason. I didn't ask for it. All hormones got messed up. I was tired, 😢My right eye was messed up. My neurosurgeon said the only viable option out there was surgery. Her claim was backup by the MRI and scanner. I was devastated and scared. My son was just 16. I worried for him if something happened to me, he might end of being orphan. Luckily, Jacobi Hospital, in the Bronx, New York, got my back, they stood by me, and did a great job. My brain surgeon and team of ENT and endocrinologist were amazing 👏. My brain surgery was done by the nose (endoscopy). They beat the crap out of my tumors, smack him to the ground. I spent only two days at the hospital then discharged. All my hormones recovered from weird 😢 numbers to normal. After 7 months, my hormones level are still normal. Believe it or not, I got my young age energy strength back. I am dead serious. I am feeling great. My right oeil is back to normal, no more double vision, no more tiredness, blurred vision, etc... Anybody on the fence, try it and be strong 💪. It's worked for me it's might work for you too.
Thank you for sharing your story Bettie! My surgery is scheduled this week. Your story helped me understand and calm me down a whole lot . Best wishes to you and stay safe!
Bettie J Hi Bettie! Thanks for replying! I made it thru!🖐 Still recovering in hospital now, shall be allowed home in a few days. It was surreal when I was woken up by the staff.... i am so thankful I pulled thru. Best wishes to you and your family! Keep safe!
@@sherilpatient742 I’m so sorry about that. Please pay attention to your mental health. It’s really important when you are going through something like this. Try to stay present and in the NOW. Don’t think about the future or what could happen, you cannot control that. Good luck to you!
Thank you so much for posting your journey! I just got my diagnosis and being a nurse I just scare myself with what can go wrong. Thank you for calming my fears. Good luck to you.
Hi Monica68 and Bettie! I am also a nurse. This condition scares me a lot. My neurosurgeon recommends me to undergo the same procedure. Hearing all the testimonies here help me to stay calm and just think of the positive outcome. However, I am still not decided to go through knife. I am still in the process of collecting more successful stories to boost me. This has been in me for so many years and I really want to get rid of it. I pray that we all gain back our normal health. I just hope I could be more than brave to push through with the surgery. Hugs to everyone here.
@@cristelamariedingil3338 just an update for you. I had endoscopic surgery through my nose 2 years ago. They could only remove 25% and on biopsy it turned out to be a Rathke’s Cleft Cyst. So it’s still there and needs to be monitored every year. Pros of my surgery: no more vertigo, vision got better, headaches aren’t 24/7 anymore but could be because I’m on Verapamil to control the headaches which they still claim aren’t part of the tumor. Lies! Cons: I now have a perforated septum after surgery and it’s hard to breathe right sometimes or blow my nose well. Plastic surgery is in the future to fix that. My hormones were all normal before surgery but since the pituitary stalk was manipulated trying to get the tumor out from behind it made my prolactin a bit elevated. Being out of work for almost 4 months after surgery was hard and I gained 20 lbs since I had restrictions. Being a trauma nurse I couldn’t work. No bending or lifting. They had to pull off pieces of glue and scabs through my nose every couple of weeks after surgery that wasn’t pleasant. I had to flush my nose for 6 months after surgery twice a day because I kept getting pockets of infection. But after those first 6 months everything is back to normal. Everyone is different and my recovery was a bit rough. Would I do it again? Yes! I couldn’t live with how bad the headaches and vertigo were before surgery. Definitely do your research and good luck!
Thank you so much for sharing this. I recently lost my peripheral vision and just found out I have a 3.7 cm mass. I will have my first appointment with my neurosurgeon in two days. Wish me luck! It is just nice to hear your story and know someone else made it through this OK.
Mark Liu I wish you the best of luck! You will do great! 💪🏻There is down time but it’s not that bad... very tolerable. Let me know what your neurologist says!!
Hey Bettie... so I made it out alive but it was not nearly as simple as I hoped. I'll give you the short version and I plan on making a UA-cam video with more details later on. First surgery went well with 5 days of recovery in the ICU. Home for 3 days with increasing headaches and loss of vision. Send to hospital for emergency MRI and they discovered a large brain bleed. Second surgery 4 days in ICU but much better results. On day 9 post- release from hospital and everything is going great. Vision almost back to 100%. It was scary and at some points awful but I made it. Thank you again for posting this video as it really made a difference before my surgery. Returning to work tomorrow and when I get time to make the UA-cam video I'll make sure to share it with you. Thanks again and take care!
So happy u are feeling much better, u look great! Actually I had mine done in 2015. Sometimes they said it can reoccur, I hope not... Can't go through that again, I stayed at the hospital for almost a month doing alot of testing. I pray for everyone who has done the surgery and recovered and those now going through it.. Be strong, it was hard for me to be away from my kids, especially my son at that time he was 10 years old and hard for him to concentrate in school. Good luck, be safe and if u start getting symptoms as being fatique, eyesight blurry, extensive headaches, menstrual changes. Pls have yourself checked out and request an MRI. It was not until after I was sent home, after 2 days I was called back to the emergency room after seeing the MRI. The rest is history..take care of yourselves, there's no specific reason for this tumor....
Thank you for posting this. I’m in the middle of figuring out what is next for me. My pituitary Adenoma is 3.5 cm which is about 2 inches. Good luck with your recovery.
I hope you're on the road to recovery ❤️❤️❤️ I have one too, I'm 33, and tumor is 3 cm but it's pressing on my optic nerves, I lost 60% of my peripheral vision in left eye and 50% in the right eye, I'm seeing through prisms and unable to read numbers as they merge, I've been living in constant stress as all the docs and eye 'specialists' were telling me I'm making this up. Until I ended in the ER and got an MRI. I've had visual issues for 7 months now and only hoping to recover my eyesight but I understand it can be so late into the tumor the optic nerve might be damaged permanently. 🙁 I've started seeing a black ball when I rub my eyes it's always on the opposite of where I press, I wonder can I somehow see it lol. Other symptoms I have is complete lack of sexdrive, no period, irritability, anxiety, feeling forever tired, sleepy. Brittle nails, completely hairless arms, my headaches were mild to none until around a month ago, now its awful, its a travelling headache that starts on top and moves to behind my ears. A lot of tension in my eyes.. Like they are ready to pop. I'm schedules a consultation with the neurosurgeon this week and a surgery hopefully next, ❤️Good luck everyone suffering, I hope you are on the way to full recovery ❤️
@@bekind3050 hello, thanks for asking 😊 He just had surgery yesterday, right now he is recovering, the surgery went well and they were able to remove the complete tumor, he is feeling pressure on the nose and a mild headache. He didn't need to be put on ICU. His tumor was pushing an optic nerve but it didn't get any damage. He is going to stay In the hospital until Monday because they are monitoring his hormones levels ❤️❤️
@@teresalopez4431 Good news. Mine is 2.1cm from CT scan. Ill have MRI next Wed. I'm kinda nervous but it is what it is. I have to be strong. Thank you for your reply.
@@bekind3050 I am sorry to hear that, MY husband tumor was 3.2 centimeters. Hope the best for you, it is normal to be nervous, we are humans, but you are going to be ok🙂
I'm a 38 yo male, and was diagnosed with the same thing two days ago, about a month after noticing vision blurriness. It's been a frightening journey, and listening to your story makes me feel slightly less anxious. I don't know if there are support groups for this, but there should be. Thank you.
Thank you for your comment and I am sorry you have to go through this. I agree there should be online support groups. I haven't been able to find one. If you come across one, let me know. Keep me posted please and good luck with everything!
Bettie, if you're interested, perhaps we could start a support group on Facebook and invite people from here that are interested. I've seen some, but they are filled with lots of medical stuff, etc. It would be nice to have some simple casual talk with those who have been through this. If you have the time and desire, let me know and we can collaborate on this :)
Mark Liu I am so so glad that you are doing better. I think it’s a wonderful idea to partner up and get a Facebook group going. You can email me at Bettiekk@gmail.com and let’s gameplay how we can do this.
I too was 38 years old when I was diagnosed with a non malignant pituitary adenoma. I had double vision and was near death on a Friday in Tucson, AZ, stabilized with steroids, operation the following Tuesday. The golf ball sized tumor and pituitary gland were removed trans-sphenoidal resection by Dr. David Greenburg at Northwest Hospital. My main nurse was Bea Blackburn. Since then I have taken Synthroid, Hydrocortisone, Testosterone and recently Human Growth Hormone as replacement therapy. I am almost 68 years old today. Glad to correspond with anyone to help walk you through this diagnosis. Grace and peace to you.
Hello. I had a pit tumor that caused me to have type 2 diabetes. I had a really bad headache and an endocrinologist found out my tumor was in the same area. I had mine removed at SHANDS UF hospital in 2005. No residual problems and type 2 diabetes was cured...subbed...
I’m trying medication for a month to see if my prolactin level goes down, otherwise my doctor suggested surgery. Every case is different, my prolactin level was 367.9 on September, and now is 519. I’m so scared but for some reason your story calms me down 💜💕 (Edit: I just started the treatment today, & it took months before I got to see a specialist)
Patty Viviendo I had pituitary surgery 16 yrs ago - I was scared too - but can say looking back - I’m glad there was a surgery to correct my problem. Ask your specialist endocrinologist all the questions you have. The very best to your relief.
One's should go for surgery only if the medication is not working and prolactin level and tumour size keep increasing otherwise cabergolin is best option until unless there is no side effects as there is always a risk with surgery with high prolectinoma
I was just diagnosed w/ the same, pituitary macroadenoma. Curious to know how recovery was? TIA, glad it worked out for you so well. Thanks for the video!
Thank you so much. I've just been diagnosed with a functioning microadenoma. I'm worried. I'm seeing my neurologist and endocrinologist tomorrow 😭 the NHS missed this and put my hormone disruption down to PCOS and stress and its neither! So glad I went private for a second opinion and an MRI x
Thank you for sharing your story. My husband went through the same procedure three weeks ago . He had slight headache . That is common due to inflammation inside. He is doing fine . We have to follow endocrinologist for hormones . Wishing you all the best for future.
Pramod Dave is he still taking hydrocortisone I’m asking because I still am and I’ve been out from surgery 7 months ago and how long did he feel pressure on nose and forehead after surgery thanks
OMG thx so much for sharing. I was diagnosed yesterday with a 2.5 cmx 2.5 cm micro-adenoma. My pituitary & pituitary stalk is slightly inflamed. I am soooo severely fatigued and drained! No amount of sleep helps, high anxiety, missed period, mood changes, all kinds if things! I hope with the surgery helps with my symptoms especially the fatigue it’s exhausting
Sitting Pretty Slayed by Doll thank you for your comment. I hope my video helped you. I have other videos on my channel regarding my journey. So if you wan to check those out, it might help you. I wish you the best of luck and speedy recovery! 🙏🏻
I also had same procedure done at UCLA because of peripheral vision loss. I'm now OK but, I had terrible headaches for a couple of days after surgery and developed diabetes insipidus for about 5 years (excessive urination and a severe thirst). Despite all those problems, such procedure was worth it. Your experience with such surgery makes it look like a simple and uncomplicated procedure.
Hi, were you also given any hormones injections after 6 months. Mu father has gone through the surgery and now after 6 months and another MrI, doctors are recommending hotmones injections. What to know if this is normal
Its crazy i had this same surgery done and when they told me i had it i felt like my heart dropped and because i thought i just needed glasses lol i was losing my Peripheral vision so i was in the hospital like a month but long story short i got like 90 to 95% of my eye sight back.
Thank you; I am in the position where they suggested the craniotomy and I want the endoscopic nasal approach . This really helped me a lot in coping and building my confidence for success. Sending love!
HI Bettie, Thank you for sharing your story! I live in Arizona as well. I am currently an occupational therapy student in Peoria. I was assigned a paper on pituitary adenomas, this video helped me understand the topic more. Would you be open to answering more questions on how it effected your daily activities ?
I had my pituitary tumor removed on April 1, 2019 ... no joke. They went through my nose. I found it because it was adversely impacting my testosterone levels. My general doctor sent me to the see an endocrinologist. He ordered an MRI and the 3 cm tumor was found. It was not impacting my sight. It was soft and was removed easily. I used to do eye exercises to strengthen my optical muscles. This may have helped to soften it up as I had been doing it for years not realizing why I had some resistance in moving my eyes. Now that the tumor is gone, I can easily move my eyes and they are no longer as dry as they had been. Good luck to anyone/everyone who goes through this. You should recover fine with the right surgeon and medical team. I had my surgery at NYU Langone in NYC.
@@natty34305 no dear i asked many times to d doctor whether i have pitutary tumor or not, he says no. My worry is i have low testosterone n i dnt know the reason.
I have a pituitary tumor. What caused me to go to the doctor was I lost my peripheral vision and the color in my right eye. That was an experience. No peripheral vision and seeing color out of one eye and black and white out of other eye at the same time. I went to my eye doctor and he referred me to an in endocrinologist. They call the tumor a prolactinoma tumor. I found out that I had the tumor 7 years ago. It was the size of a golf ball. Located right above the pituitary gland. They wanted to do surgery on it. But. They found out but there was a cyst connected to it. In layman's terms I couldn't have surgery on it. So they started me on Bromocriptine. Dosage made me extremely sick and extremely dizzy most of the time. But after taking the medicine for three months. My eyesight came back to normal . But the side effects lingard. After taking the bromo for 3 years. They switched me to a drug called cabergoline which I've been for the past 4 years and am presently on. The in chronologist said the tumor should shrink to the point where it's small enough that my body should exorbitant back in. But for the rest of my life every six months I'll have to have a MRI done to make sure that it's not growing or turning into cancer. Life goes on.
I found out on Saturday that I have a 5mm microadenoma. My Neurologist didn’t even know what it was and referred me to a Endo. From the looks of it (as a medical student) it’s pointing to Cushing’s. I am devastated but determined to fight!!
Whatever happened? I am going through the same thing! 5mm!! But I have an appointment like 20 days from now with an Endocrinologist...I know this was two years ago. Please update me
You poor thing. I am worried between this and adrenal tumor. I have anxiety, heart palpitations, never had normal periods, and often just dont feel right . Glad youre ok.
I found out I had a pituitary tumor once I realized I was losing vision in my left eye.. you’re right it’s scary to have surgery on your brain.. I feel much better.. I had my surgery on the 30th of September.. my hormones are very low.. also I mine was a mass as well.. 3.6 centimeters.. they removed the whole entire tumor..
Thanks for sharing your story. I just had my surgery 3 wks ago and it was very scary. I wish I had seen this before. My recovery has been a little difficult because I think I returned to work too soon. I'm really interested in how you are doing now, and if there is anything you could recommend I should do to feel better sooner. Take care.
Thank you for sharing your story I'm going through this now it's just round here it's hard to find a good doctor I've had this I found out like 6 months ago 7 months ago I've had headaches I vision problems. where I live I was trying to get into a Pittsburgh hospital but they will not accept my insurance. And I was at that point to where I was upset scared didn't know what to do and then I seen your story it gives me a little hope also will my sister from the church God bless her she young refer me to a local doctor I haven't been to her yet but that's exactly how they found out my tumor my paroxetine level was high and I just want to say thank you for sharing your story and please keep me updated on how you're doing how you're feeling. I'll keep you in my prayers
Glad everything went well. I had a pit tumor 3 years ago as well so I can totally relate. Mine was very large also, about golfball size. I had no symptoms. I had woke up one day with a headache that got worse through out the day. Finally went to the hosp. Thought it was a migraine... they ended up doing a CAT scan and found it. Sent me to Ohio State University. Just as I arrived at OSU ER, my tumor had a stroke. Thank goodness I was at the ER. Stroke hit the tumor only thank goodness. It is a scary situation, they cant tell if it cancerous until they remove it because there is no way to do a biopsy. Mine was benign thankfully. Im doing well with a few minor problems. I go next month for my 3 yr MRI. My Dr said if they return it is usually the 3 to 5 yr range. Wish me luck.
Also was very lucky to have one of the top 3 nuerosurgeons in the world. My Dr helped invent the tools they do this surgery with and does seminars all over the world on this surgery. Im very lucky he was my Dr and was there when the stroke hit.
Tom Laird wow! That’s crazy! I’m so glad you are ok. It’s definitely very very scary and the fact that you walk away from this with minor problems is a miracle. Best of luck to you🙏🏻
Hi! Could you share your dr's name? My son decided to have his pit tumor removed. It's also very large, but is not an emergency, so we are taking our time finding the "right" doctor team.
Im diagnosed with pituitary lesion but not adenoma... The diagnose is named as RADHKE CLEFT CYST. Im 25. I found out it accidently during an mri of my spine. I dont have any severe symptoms other than headaches. pituitory hormone levels are normal. My Doctor told me for every 6 month checkups.
Hi Bettie, my tumour was much like yours - size of a golf ball and silent, and finding it started with an eye exam for new glasses. I was lucky in that a bunch of people didn't like what they saw and referred me on until I was given a field of vision test on an ophthalmologist's hunch and that led to an MRI. Two years later my tumour is gone but in my case there are side effects. When the ENT was doing his thing, the blood flow was intense and the surgeons had to stop and try again 3 days later. When I came to after that first op, I had lost half the vision in my left eye and by half I mean the bottom half. Top half above the focus point I can see forms, patterns and colours and the bottom half is blank. It doesn't work - the eye doctor says it's vascular and that makes sense. How is your nose? Mine will not stop producing mucous, it's like I have a permanent head cold and blow my nose out so many times a day. Really annoying. But, I am not blind, did not have a stroke and am not dead - my tumour was really close to the carotid, the neurosurgeon was very worried about that. I guess I skipped a bunch of bullets, hey?
Praying for a speedy recovery. I was just diagnosed with this problem. Still trying to wrap my mind around it. I have a few more test to take before a treatment will be suggested. 😢
I was diagnosed in 2007. I was seeing Doctors at Intermountain Medical in Utah. I saw a Neurologist and he told me it was too big to remove surgically, The prescribed a medication that was supposed to shrink the tumor but It didnt work. I am 71 now, still living with it. I have blinding headaches, My peripheral vision has diminished, I weigh nearly 300 lbs due to the complete imbalance of my hormonal system. I have very low testosterone. Not fun.
@@abdelfattah337 you sound like you know alot about this type of tumor. I just got diagnosed with a 3x2mm size. I'm still waiting on my appointment to see a endocrinologist. What type of medication do they use for this size? Mine is a functional, messing me all up 🥴
Day 2 from surgery 2.5 cm. God is amazing!!!!! PRAY and seek God during this time of adversity. I stressed the tumor and the process so much until I Gave my life and tumor to God. The surgery took me 1:00 hr. 1:30 TOPS! Dr Jonas Sheehan did amazing 👏.. I have my eye sight back and IM Still recovering but BLESS BEYOND MEASURE 🙏 ♥ HEADACHES BUT MOST OF THE PAIN WAS OUT OF SURGERY Mucinex to keep nasal clear chest clear ...cough drops.. apple juice&milk for throat pain spit out any linking blood from nasal drip.. dap your nose from blood consistently to keep clear. But giving my life to God was the key part! I hived my doctors off the operation table and was ready for life after surgery !
Thank you to everyone for sharing your stories!!! I also had surgery July 2022; mine was 2 cm and was a cortisol secreting tumor. Thank God for the doctors and surgeons that can so “easily” treat this condition. The sad part is that people seem to live with these things so long before they’re discovered. Also highly recommend Mayo Clinic in Florida for endocrinology/ pituitary disorders. They offer telehealth and have helped me a lot Post-op. Good luck to all who have and are going through this ❤
Рік тому
did it get better with cortisol after removing. i slso have ectrem low acth but no help do you want to pm me
@ Hi - yes better but not 100% because my adrenal glands have not yet "caught up" and able to function on their own. I still take 20mg of hydrocortisone daily (it has been a year) so I can have energy to get through the day. Best of luck to you.
Hello I just had brain surgery 4weeks ago with dr. Little here in Arizona too! He was amazing:) I did not have the same tumor you had mine is called a Craniophrygionma and mine was growing in my pituitary stalk. I will be doing radiation next month to get the rest of mine out cause he was able to remove 95% of my tumor out. How are you doing now with recovery ???
d2espitia oh wow! That a small world!! I am doing great! I just went to see him for my 3 month check up and he said everything is looking great. How are you feeling after your surgery?
d2espitia I am hoping to get in with dr little for my pituitary tumor! I’m just starting the process of getting it taken care. I did some research on neurosurgeons, and he was one of my two options. I’m happy to hear your surgery went well! How are you feeling now?
Bettie J hi! How are you liking Dr. Little? I ended up choosing him to help with my pituitary tumor! I sone research, but would like to hear some more! Thanks
Korina Nunez Dr. Little is amazing. He is the best at what he does. You don’t need to look at any other neurologist. He is the reason why I recovered so well from the surgery. He is very helpful and he will answer all of your questions. I have had my surgery for 6 months now and I feel amazing! Good luck with everything and keep me posted!
Thank you for sharing your experience... My daughter is only 15yr old and we’ve been dealing with this since she was only 2yrs old. Now thinking about surgery for her. Blessings 😷
In my personal experience, I was diagnosed with a Macroadenoma in 2017 when I was 18-19yo. I was having fainting spells. They said it was not related. But its now 2020 and its almost going to be 4 years since I haven't had insurance and wasn't able to get it checked again. I feel like my vision is getting more and more blurry. I'm getting bad headaches, migraines. My peripheral vision is starting to get wonky. I feel pressure in my sinuses A LOT. Now to add on top of it, I'm not sure if its related or not. I've been having super major anxiety. I've always struggled with anxiety, but NEVER like this. I just finally got my insurance back. I'm trying to get everything checked as fast as I can. Its been really stressful and just makes one feel very isolated. God will help us get through it. We just have to stay positive. We can do it. Things just take time. Much love and positive thoughts for anyone else who is going through this.
Hi thanks for sharing this video, it’s very helpful. How often were you having headache and were your headaches in different locations or always in the same location?
It ws scary for me too to knw abt my pituitary macroadenoma !! It’s been a year... I ws daigonised in August 2016 and operated in November 2016 ... and yours is succha similar story ... cn totally understand d trauma ..bt we r al gud and healthy now 😊😊... all the best for your future👍 .. stay blessed stay healthy ..🙏
@@afsheenimran4c515 I m good now, regained my peripheral vision after surgery which is very surprising... still have mild high prolactin , so have to take cabergoline once a week, stil have ammonorhea and also secondary infertility.... bt I m healthy otherwise ... no headaches or other probs
I am 65 and found out through Ophthapamology clinic because for I kept complaining and they kept checking so one of eye Dr's said I'm sending you for MRI and I went and thats when they saw the tumor. I got appt with Neurologist and was set for surgery and yes very scary, a lot of praying but just had first ENT appt and next with Neurologist to go over what happen. In get well mode, appts to get too. Great Drs Care Team and Nursing Staff at Ochsner Health in Shreveport, LA.🙏
I found out I have a 1.5. cm pituitary tumor. Surgery scheduled in a few weeks. Thanks for sharing your story got more information here than with the doctors... Scar.y stuff
Bettie J this is Raj Chavan’s son Neil Chavan and my father just went into surgery and the family is all waiting in the family waiting room. Your video really helped my dad go through with this surgery, he was even cracking jokes as he was wheeled away on the bed, thank you for this video.
My prolactin levels came out at 640.6 and I had an MRI a couple weeks ago. Will find out the results this Friday. I’m anxious to know how big my prolactinoma is...
I am a 34 year old male, diagnosed last month with a pituitary adenoma, very small but causing IGF-1 high levels. Possibly acromegaly disease. For a year and a half muscle aches, joint poping, headaches, sweating and numbness. July 6th 2023 tumor comes out with the help of PNI. Dr kelly is doing my surgery and I'm hoping symptoms go away. Anybody else experiencing the same thing of so please reply me. Thanks.
This Is Chrissy me too, there isn’t that many people around here who even know what I’m talking about, I also have chiari malformation type 1. I found this video so interesting I subscribed did you? Hope all goes well for you Chrissy x🙏🏼👍🏻😁
Thanks for posting this! I’m meeting with the surgery team next week, 2.5 cm also with a cyst. Found it when I started losing my vision. Not that long ago this would have been so much worse, good times!
I am so elated to have come across this group. I was diagnosed of the same pituitary tumor recently after i have lost 60% of my left eye sight. I have seen the Neurosurgeon and i am about to have the surgery. I could ready that probability of getting the vision restored is high . I pray i get mine restored fully too. I will keep you guys updated with my experience after the surgery. Please pray for me. Gog bless and one love.
Hi, I'm 35, female, I was 145 pounds, active and healthy, but I suffered a concussion on my left side of my head about a year ago, that may have nothing to do with this now but I feel it should be noted, because shortly after I would get severely dizzy, but that subsided greatly, but still have dizzy spells laying down, sitting up, turning my head, etc, then I started having blurred and doubled vision, regular headaches 2-3 times a week compared to maybe 1 a week before normally, then I started gaining so much weight no matter what I do, im now at 300 lbs and climbing and eating very very very little( I'm freaking starving😭) because everyone even strangers tell me how fat I am and need to exercise, I clean 3 houses twice a week, I have to care for my grandmother, grandfather, mother and an aunt with copd, and run a farm, I have to do EVERYTHING for them, I have 3 children to care for as well, so I'm not lazy by no means, but I'm so fatigued and depressed, my periods are way heavier than ever and slightly irregular by a few days every month and ( sorry in advance) the clotting is constant and slightly bigger than I have ever had , I went to a gynecologist and my prolactin levels were at a 25.5, no cysts on my ovaries or anything, not pregnant, not breastfeeding, so is/ could this be a hormone secreting pituitary tumor???
@@jfregia8070 awwww I'm sorry! Did you find out what it was? I have an appointment with my ent tomorrow because I have a cyst or polyp in my sphenoid sinus cavity and that is right under my pituitary gland and I'm obviously not happy im scared and wondering if I have a pituitary tumor too.... cause my periods have been weird
@@jayalexander9033 I did find out it's a pituitary tumor and it is causing hormonal disruptions BUT it's not large enough to operate on and my endocrinologist won't give anything to help the hormones balance back out AND basically said everything is "all in my head" like I'm crazy or just a fatso so I'm not worth her time basically...but she takes my money just fine😒
I found out I had a pituitary tumor at the age of 25, i was very devastated. Prior to not knowing that I have the tumor, I had severe headaches everyday and milk coming out of my breast even though I wasn't pregnant. I'm on medication, but I want to get surgery. Whenever my endocrinologist tells me to stop taking my medication my prolactin level would go up and milk would start coming from my breast. I been trying to get pregnant being on the medication but it's been unsuccessful. 😭😭
Yaa Fosuah I’m sorry you have to go through this. It’s hard especially when you are trying to get pregnant. I wish you the best of luck with your journey. And please keep me posted! 🙏🏻
Hi there! Can I ask who your Gynecologist here in Arizona is? I’ve had the same symptoms, inability to conceive and headaches for years and would like to start with Gyn with determining what’s going on. It sounds like your Dr really cared to get to the root of the cause and I got so excited when I heard you’re from AZ!
heyleegee his name is dr. Eric Reuss in Scottsdale. He is amazing at what he does and a very caring doctor. Good luck with everything and please keep me posted
Thank you so much for sharing your story I am also from Arizona I also ended up getting a 74 value for prolactin in my blood work with only two symptoms one being irregular periods. I was sent to have an MRI done today and I wont be receiving my results until Friday so im feeling extremely nervous and quite scared.. I was wondering how old you were when they found it for you and if you had any other advice you could give? Im 19 and I don’t know anyone who has gone through this before.. Thank you
Brandy XO thank you for your comment. I found out I have it 5 months ago so I was 32 years old. I had my surgery 2 months after I found out. Don’t be nervous or anything! If you have it (I pray you don’t) but if you do, make sure you get the best neurologist. My doctors name is Dr. Andrew Little from the Barrow institute. He is in St. Joseph’s Hospital. I know it’s scary but be positive about it. We are lucky we live in a time that they have such good technology to make things easier. I made this video 3 weeks after my surgery and as you can see, I was fine. Be strong and good luck! Come back and let me know what the results were. I will be thinking of you 😊
Thank you so much for replying I would have never guessed you are 32 you look so young! :) and thank you very much for all your kind words and positivity it truly means so much! 🙏🏽 I just got my results today I dont remember an exact measurement that i was given but I was refered to a neurologist and endocrinologist for consultations, my doctor said that the neurologist could possibly just zap it away with a laser or another option would be to take medication to try and keep it from getting bigger.. ill be seeing the neurologist in about a week but the endocrinologist i wont be seeing until July
girl relax, my prolactine level was 950 in the beginning, with meds it's getting higher i dn't beven know how s that possible but it s what s happening, so 74 means it's a microadenoma you'll be put to dostinex 0.5 mg one pill per week and that's it.
I'm about to have this surgery, first week in july. Now I suspect my 32 year old daughter has the same problem, she has been unable to have children and has had several miscarriages.
My prolactin levels are high and waiting for the MRI , having visual disturbances, Is the loss of vision reversible or is it permament?Please let me know.
Wishfultask I’m sorry you have to go through this. I actually did not experience any change in my vision so I can’t accurately answer that question. My guess is it depends on how much damage the tumor has caused to the optic nerve. Good luck with everything and please keep me posted.
I was recently diagnosed with hyperprolactinemia after doing a fertility panel. It was 52 or 1100. They didn't see a tumor on my MRI so if it was there it was very very small. I am on cabergoline right now and hoping it works - I've noticed some improvements and only just took one pill as I am in my first week (take twice a week) but am waiting for my menstrual cycle to return which I missed for the first time in 16 years last month. I am 29. I am hoping the missed period is from this prolactin and nothing else. It's really stressful
Hi, I got my brain tumor removed through medication. After 5 years at present experiencing same headaches again, and I suspect that my testosterone levels are at bottom, whom should I visit, endocrinologist or neurologist.
sandeep reddy thank you for your comment. I think you should visit both but I think neurologist is first so they can do an MRI and figure out what’s wrong. Good luck and keep me posted!
What they’re saying is that it’s not considered a brain tumor because the pituitary gland isn’t in the brain. Therefore it isn’t a brain tumor. The pituitary gland sits below the brain and is attached to it. So for one to say it’s a brain tumor and that they had brain surgery because of this is inaccurate. They’re not saying they aren’t tumors. They are, wherever benign or malignant. This chick didn’t have brain surgery. Her headline needs to be edited to what it actually is, which ISN’T brain surgery. It bugs me when people call it this when it’s so minimally invasive.
I have the same thing I have lived with my for 2 years. I have lost some vision. I have been diagnosed with Addisons disease due to thus tumor. I saw a surgeon 2 years ago they would not touch it. Now it has grown very large and has grown into my eye nerves. I am seeing the surgeon again soon to see if they can remove it.
To everyone reading this please turn to Jesus He loves you and wants to save you from what you are going through, Only Jesus can truly heal He is the God of miracles, The bible tells us in Romans 10:13 For whosoever shall call upon the name of the Lord shall be saved, I seen God do amazing things in my life and in the lifes of people I know, God saved someone I love from illness leading to death, There is nothing impossible to God, Its as simple as asking Him to show you He is there and if you want to know He will answer you, I know this because it happened to me when I called out to God
A few years ago I had a massive headache at work that blurred my vision and almost made me pass out. After work I went to the ER and they found a large mass in my brain. After an MRI it was found the be a 5.1cm pituitary tumor. It was pushing on my optic nerves as well as it had encased my carotid artery and was putting pressure back towards my brain stem. My headache was caused by a pituitary apoplexy which they said can be life threatening. I was lucky enough to be able to be treated with medicine (cabergoline...and a lot if it lol). Now it is less than 1cm. They said to remove the last of it they may do surgery which I was very nervous about until hearing your story. Thank you for sharing!
Hi, I have the exact same tumor that u had and I also live in AZ...but after my diagnosis I was terrified at the thought of having surgery and refuse to deal with it. I know that's not the right approach but I'm struggling to cope with this. Any advice or words of wisdom would be extremely helpful. Thanks for sharing💜
Reena Danielle first, sorry you have to go through this. I think what really helped me through the process is accepting that I have the tumor and really believing that everything will work out for the best. Having a positive attitude towards is very important. Also if you take steps to treat it, you will feel better because then you will doing everything in your control to get better. I wish you the best of luck and keep in touch!
Reena. Be stronger. It’s a fairly low risk surgery. My wif is from Arizona. We live in Jacksonville florida. Anyways she just went through this. Hers was 2.3 cm. She is 55 yrs old. Good shape. But started having symptoms. They finally figured it out. Had surgery on Friday and was out of the hospital 4 days later. She is back to normal after only 9 days. They did hers endoscopically. Don’t be afraid. She is so happy she did it. There is another great Neuro surgeon in Jacksonville if your looking for another possible surgeon. Dr. Hanel. Baptist health. Anyways. Thinking of you. May god bless you. Sincerely. Mike and Tami.
I was diagnosed 3 years ago. Was been followed by Dr. William White @ Barrows. Now I'm been follow by Dr. Little. My tumor is 1.4 x 1.4 x 1.6. I did get another tumor removed by craniotomy. The hospital was amazing
@@BettieJanesian I am planning to. But I really don't think it is possible due to the pandemic. The hospitals are too crowded. Thank you so much ❤️ you gave me hope. New subbie here 🥰
I’m having an MRI next week because they suspect I have a pituitary adenoma. I also went to the doctor for abnormal periods and had a pelvic ultrasound which diagnosed me with PCOS. They checked my hormones because PCOS usually causes high testosterone and androgen but those were all normal and my prolactin was high. I’m very scared and overwhelmed. I don’t want to have surgery. Sorry to vent but thank you for your video it helped.❤️
@@gurleenkaur9799 My results were sort of weird. They told me that they couldn’t see a tumor but it may be because it’s too small to be detected. They told me to come back in a year to see if it grows or not but I haven’t been back yet.
I found out yesterday I had this. I been suffering seizures and severe headaches for 7 years. I have been very neglectful with my health over the years. 3 weeks ago was the first time I got treatment for my seizures I was up to 2-3 seizures a week. Doctor ordered a MRI and I got the MRI results back yesterday it was a Pituitary Tumor. I meet with my neurologist on Nov. 27 nervous. He wants to do another MRI. Nervous and scared. I been on seizure meds and my vision is very blurred. The thought of surgery on my head is scary to me.
Sara Chai I’m so sorry you have to go through this! I know surgery is scary, I was so scared too but everything turned out well. I wish you the best of luck with everything!! Keep me posted please on what happens.
Hi and thanks for sharing your story my sister she is 38 now and she lost her right side vision due to this tumor. She was diagnosed with the tumor 3 years ago but she only takes Bromocriptin a medication which helps to control hormone growth. She hadn't had a surgery because there isn't one where we live which is Africa(Ethiopia). She is now experiencing a great pain around her hills and ankles Please help us if you can by providing information on how much the surgery cost there in Arizona, how we can communicate your doctors. Please help!!!
Solomon Wasihun I am so sorry your sister had to go through that! My doctors name is Dr. Andrew little. His office number is 602-406-3181. I have health insurance so my surgery only cost me $3400.00 but I’m actually not even sure how much it will cost without insurance. I hope this helped and good luck with everything! Please keep me posted!
Thanks for the inspiration. I had no sex drive. I couldn’t maintain erection. My wife and i were worried. She asked i quickly go see a Dr. We did and they took blood samples. The test came back that my Prolactin is scaringly high: 66,683 mu/L. This is way out of range. My testetorone level is 6.8nmol/L. Also low. Now i have been scheduled for MRI scan to rule out or confirm size of any tumor. That being mentioned, 10 months ago i had a small cyst in my breast and the GP ruled out any cancer and put me on antibiotics. I didnt know that it was as a result of hormonal changes due to Pituitary. My life has turned upside down. But i will fight whatever happens.
I've had so much anxiety on this. So scary. I just found out I most likely have this and I'm waiting on a specialist to get back to me. Your video helps me feel a bit less scared. I found out because I had a panic attack and they tested me for this.
i was diagnosed in 2018, now in 2020 i’m still having inconsistent complications such as headaches, lower left side cramps, and irregular cycles. praying that when the time comes, it’ll go smoothly! keep your heads up ladies, we will get through this💕
I am recently diagnosed........ And scared...
I also diagnosed in 2018 and the doctor have not operate yet and I have lost one eye vision
@@naominurin9027 .
Me in same condition doctor said take only medicine
Yeah I got a same almost yours , so I am in very scary till this date . Just on hoping it’ll go smoothly
I'm so thankful i found your page. I am 32. I have the same issue. Irregular periods, headaches, nasal issues, weakness, fatigue all the time and mood swings. I cry and am angry more than I am happy. Went to doc n found out I have a 2.5 cm tumor. My endocrinologist says I just need to take 💊 and it is possible tumor will shrink and prolactin level may decrease also. I start my meds next week but first I have to take this injection. Forgot what it's called. I really hope this all works out for good as I am suffering horribly from more constant daily headaches and weakness. My life is just declining when I can't do the things I love at a normal level any more. 😢😢😢 pls pray for me bcs I am very nervous. Also, thank God you are now better. Thanks again for sharing your story. Much 💜 and aloha from Hawaii!
Linda Lihpai I wish you the best of luck and I am sooo sorry you had to go through this
I also have a pituitary tumor, I'm 31 and I'm presently on medication. I'm been on medication for 5 years now, I still have headaches but not often. I used to have milk coming out of my breast it has stopped now with the medication. I been trying to get pregnant and it has been very hard. I will keep you in my prayers
Hello Linda, How are you feeling these days ? I just had surgery for the second time. I first had this surgery in 6/2014 and had to have it again is past JAN 10th, 2019. The first time I went bind in my left eye it was the size of a golf ball and I always had bad headaches and the second time. I had very bad fatigue and mood swings, sick at the stomach all the time too.. It's been two weeks ago, and still get these bad headaches. When will they stop this time, last time it took about 6 weeks
Linda dont worry God will bless upon you and you will be come better after treatment,now a days very good treatment are available ,so dont feel scary, you msut be fine.God bless you
Dr. Lenora Wimberly-Peterson How have you been since you’re surgery?
I thank God for your life and for the courage of sharing your experience. May God Jehovah, the God of Abraham protect your life and your family in Jesus Christ name!
Probably a bit late to comment but I am soon my have my third pituitary tumor operation due to it regrowing twice in 18 years. For anyone that is worried, don’t be, it will all be fine. 👍
I just read my mri that said I have a 10mm x 9mm tumor. I cried my eyes out. When my doctor called me and told me my abnormal prolactin levels could mean I have a tumor on my pituitary gland I didnt think anything of it. I knew that couldn’t be something I’d have to deal with. Here I am today dealing with this shock. I havent talked to my doctor yet. I’ll see the endocrinologist Jan 30th. The wait is agonizing. Would surgery be something I need since it isn’t bigger than 10mm in size? What’s it like taking the meds if that is my treatment of choice ?What are side effects that some of you all are dealing with? I’m so thankful to you for making this video. It’s so comforting, you have no idea! I know I was not but you feel so alone and scare after learning you have a brain tumor! God bless you and hope that you and your family are doing well!Sincerely So scared in California
Similar size to mine, went on medication and I felt normal again. FYI do the yearly check up. I didn't, I guarantee mine is back. My quality of life has dropped off a cliff. So I'll say I know how you feel, but it gets better alot
I'm 41 and just had a baby. I came out of anesthesia to a blinding headache I thought I was leaking spinal fluid from a failed spinal block but the hospital assured me I wasn't. However I was going blind and the headache was intolerable. 2.5 weeks in the hospital and I finally have a diagnosis. A one inch pituitary tumor. Thank you for the information. Prayers to all suffering as well.
How are you doing now. Was your your vision restored
I just found out my 18 year old son has a pituitary tumor and finding your video has given me hope and eased my mind a bit thank you so much
My son just did the surgery. He’s 18 😢
My husband had the same thing and it was a nonfunctioning tumor slow growing. He experienced severe headaches, always had sinus congestion, fatigue, double vision, ED, weight gain and extremely high blood pressure. He often told me he felt he had water in his head and could hear whooshing sounds. His tumor was as large as a man's thumb and he had it a long time but with no symptoms.... until the last few months before his diagnose. The doctor operated on him for 8 hours and found it very difficult to remove and caused the tumor to become angry. In recovery My husband fell into a coma only hours after his surgery due to swelling around the tumor, which they did not remove. He never regained consciousness and died 4 months later. You are truly blessed to have found this in time along with a knowledgeable medical staff. These tumors are very serious and if a tumor is large then in my opinion should really be removed by opening the skull. That may have saved my husband's life had the doctor chosen that procedure and not the nasal cavity.
Debbie M. I am sooo sorry for your loss! And thank you for sharing your husbands story. It is very unfortunate that he had a very different experience and outcome than I did. But I agree with the part about the medical team. It is very important to go with a doctor that is truly experienced because this is a serious tumor. How old was he when he found out and did the surgery?
Bettie J My husband was 53 years old at the time of surgery. Your video was the closest description of the tumor being difficult as my husband's that I've run across. Surgery was done at USC in Los Angeles. I was praying for a bed to open at UCLA but that never happened and wonder if the outcome wpuld have been different at UCLA. Please keep us all posted on your recovery and thank you for sharing your journey.
windeecity I just uploaded my 3 month post surgery update and I for sure will be keeping everybody posted on my progress. Thank you again for commenting and sharing your husbands story and sorry for your loss!
Debbie M. This is so saddening I’m holding my self for crying . I am sorry for your loss. I can’t image my life without my husband... ask Jesus to heal your heart please, he cares for you deeply
debbie your are very right, patients are afraid to go for skull open operation, but my opinion its best for pateint to go through proper operation and dont chose nasal opreation if tumor is big.
Thanks for sharing your story. Guess what? That was my story last year, pituitary tumor. The Tumor pushed the right optic nerve to the corner and compressed my pituitary gland without reason. I didn't ask for it.
All hormones got messed up. I was tired, 😢My right eye was messed up.
My neurosurgeon said the only viable option out there was surgery. Her claim was backup by the MRI and scanner. I was devastated and scared. My son was just 16. I worried for him if something happened to me, he might end of being orphan. Luckily, Jacobi Hospital, in the Bronx, New York, got my back, they stood by me, and did a great job.
My brain surgeon and team of ENT and endocrinologist were amazing 👏. My brain surgery was done by the nose (endoscopy). They beat the crap out of my tumors, smack him to the ground.
I spent only two days at the hospital then discharged. All my hormones recovered from weird 😢 numbers to normal.
After 7 months, my hormones level are still normal. Believe it or not, I got my young age energy strength back. I am dead serious.
I am feeling great. My right oeil is back to normal, no more double vision, no more tiredness, blurred vision, etc...
Anybody on the fence, try it and be strong 💪. It's worked for me it's might work for you too.
Thank you for sharing your story Bettie! My surgery is scheduled this week. Your story helped me understand and calm me down a whole lot . Best wishes to you and stay safe!
Kay Ho I’m glad I could help. I wish you the best of luck with your recovery!
Bettie J Hi Bettie! Thanks for replying! I made it thru!🖐 Still recovering in hospital now, shall be allowed home in a few days. It was surreal when I was woken up by the staff.... i am so thankful I pulled thru. Best wishes to you and your family! Keep safe!
I had a tumour in my pituitary gland and surgery was done ten years ago.Now l am feeling better.l also wish a better health for you.
Thank you!
Did u also go through radiation therapy after surgery?
@@BettieJanesian I will be doing my surgery soon and because of the symptoms my body is going through a lot and I’m depressed
@@sherilpatient742 I’m so sorry about that. Please pay attention to your mental health. It’s really important when you are going through something like this. Try to stay present and in the NOW. Don’t think about the future or what could happen, you cannot control that. Good luck to you!
i want to ask you something now your vision is blurry or clear? and how many time take to recover vision properly?
Omg! thank you so much for making this video your so brave it really helps to get an insight on the scariest parts of life
Thank you so much for posting your journey! I just got my diagnosis and being a nurse I just scare myself with what can go wrong. Thank you for calming my fears. Good luck to you.
rmonica1980 thank you for your comment! Good luck with everything and keep me posted if you decide to do surgery.
My dad has this and we are sooooo worried. Your story helps to know that this is not a life sentence
Pusha Alexander I wish him the best and speedy recovery! 🙏🏻
Hi Monica68 and Bettie! I am also a nurse. This condition scares me a lot. My neurosurgeon recommends me to undergo the same procedure. Hearing all the testimonies here help me to stay calm and just think of the positive outcome. However, I am still not decided to go through knife. I am still in the process of collecting more successful stories to boost me. This has been in me for so many years and I really want to get rid of it. I pray that we all gain back our normal health. I just hope I could be more than brave to push through with the surgery. Hugs to everyone here.
@@cristelamariedingil3338 just an update for you. I had endoscopic surgery through my nose 2 years ago. They could only remove 25% and on biopsy it turned out to be a Rathke’s Cleft Cyst. So it’s still there and needs to be monitored every year. Pros of my surgery: no more vertigo, vision got better, headaches aren’t 24/7 anymore but could be because I’m on Verapamil to control the headaches which they still claim aren’t part of the tumor. Lies! Cons: I now have a perforated septum after surgery and it’s hard to breathe right sometimes or blow my nose well. Plastic surgery is in the future to fix that. My hormones were all normal before surgery but since the pituitary stalk was manipulated trying to get the tumor out from behind it made my prolactin a bit elevated. Being out of work for almost 4 months after surgery was hard and I gained 20 lbs since I had restrictions. Being a trauma nurse I couldn’t work. No bending or lifting. They had to pull off pieces of glue and scabs through my nose every couple of weeks after surgery that wasn’t pleasant. I had to flush my nose for 6 months after surgery twice a day because I kept getting pockets of infection. But after those first 6 months everything is back to normal. Everyone is different and my recovery was a bit rough. Would I do it again? Yes! I couldn’t live with how bad the headaches and vertigo were before surgery. Definitely do your research and good luck!
Thank you so much for sharing this. I recently lost my peripheral vision and just found out I have a 3.7 cm mass. I will have my first appointment with my neurosurgeon in two days. Wish me luck! It is just nice to hear your story and know someone else made it through this OK.
Mark Liu I wish you the best of luck! You will do great! 💪🏻There is down time but it’s not that bad... very tolerable. Let me know what your neurologist says!!
Surgery through the nose is the plan. Next is the Endocrinologist and ENT. I'll keep you updated as things progress.
Update: Surgery is 1 week away on the 27th. Pre-op testing done and now we wait. Wish me luck!
Mark Liu I wish you the best of luck! You are gonna do great!!! 💪🏻
Hey Bettie... so I made it out alive but it was not nearly as simple as I hoped. I'll give you the short version and I plan on making a UA-cam video with more details later on. First surgery went well with 5 days of recovery in the ICU. Home for 3 days with increasing headaches and loss of vision. Send to hospital for emergency MRI and they discovered a large brain bleed. Second surgery 4 days in ICU but much better results. On day 9 post- release from hospital and everything is going great. Vision almost back to 100%. It was scary and at some points awful but I made it. Thank you again for posting this video as it really made a difference before my surgery. Returning to work tomorrow and when I get time to make the UA-cam video I'll make sure to share it with you. Thanks again and take care!
So happy u are feeling much better, u look great! Actually I had mine done in 2015. Sometimes they said it can reoccur, I hope not... Can't go through that again, I stayed at the hospital for almost a month doing alot of testing. I pray for everyone who has done the surgery and recovered and those now going through it.. Be strong, it was hard for me to be away from my kids, especially my son at that time he was 10 years old and hard for him to concentrate in school. Good luck, be safe and if u start getting symptoms as being fatique, eyesight blurry, extensive headaches, menstrual changes. Pls have yourself checked out and request an MRI. It was not until after I was sent home, after 2 days I was called back to the emergency room after seeing the MRI. The rest is history..take care of yourselves, there's no specific reason for this tumor....
How come you had to stay in the hospital for a month??
Thank you for this video because I'm going through this now. this helped me not to be so nervous about the surgery. thank u
Liza Goudal wish you best of luck!
Same
I hope u are doing well
Thank you for posting this. I’m in the middle of figuring out what is next for me. My pituitary Adenoma is 3.5 cm which is about 2 inches.
Good luck with your recovery.
Hi. Hope all went well. My sis got diagnosed with a similar-sized tumor as well.
I hope you're on the road to recovery ❤️❤️❤️ I have one too, I'm 33, and tumor is 3 cm but it's pressing on my optic nerves, I lost 60% of my peripheral vision in left eye and 50% in the right eye, I'm seeing through prisms and unable to read numbers as they merge, I've been living in constant stress as all the docs and eye 'specialists' were telling me I'm making this up. Until I ended in the ER and got an MRI. I've had visual issues for 7 months now and only hoping to recover my eyesight but I understand it can be so late into the tumor the optic nerve might be damaged permanently. 🙁 I've started seeing a black ball when I rub my eyes it's always on the opposite of where I press, I wonder can I somehow see it lol.
Other symptoms I have is complete lack of sexdrive, no period, irritability, anxiety, feeling forever tired, sleepy. Brittle nails, completely hairless arms, my headaches were mild to none until around a month ago, now its awful, its a travelling headache that starts on top and moves to behind my ears. A lot of tension in my eyes.. Like they are ready to pop.
I'm schedules a consultation with the neurosurgeon this week and a surgery hopefully next,
❤️Good luck everyone suffering, I hope you are on the way to full recovery ❤️
Hello! How was your surgery and the recovery? My husband was diagnosed a few days ago and I am very nervous.
@@teresalopez4431 How's your husband?
@@bekind3050 hello, thanks for asking 😊 He just had surgery yesterday, right now he is recovering, the surgery went well and they were able to remove the complete tumor, he is feeling pressure on the nose and a mild headache. He didn't need to be put on ICU. His tumor was pushing an optic nerve but it didn't get any damage. He is going to stay In the hospital until Monday because they are monitoring his hormones levels ❤️❤️
@@teresalopez4431 Good news. Mine is 2.1cm from CT scan. Ill have MRI next Wed. I'm kinda nervous but it is what it is. I have to be strong. Thank you for your reply.
@@bekind3050 I am sorry to hear that, MY husband tumor was 3.2 centimeters. Hope the best for you, it is normal to be nervous, we are humans, but you are going to be ok🙂
I will say a prayer for your future health. thanks for shearing.
w y thank you very much!
@@BettieJanesian hi are u okay
101sanford I am fully recovered now 😊
@@BettieJanesian im glad ur okay bc i worried about u all last night
So helpful.thank you.
I'm a 38 yo male, and was diagnosed with the same thing two days ago, about a month after noticing vision blurriness. It's been a frightening journey, and listening to your story makes me feel slightly less anxious. I don't know if there are support groups for this, but there should be. Thank you.
Thank you for your comment and I am sorry you have to go through this. I agree there should be online support groups. I haven't been able to find one. If you come across one, let me know. Keep me posted please and good luck with everything!
Bettie, if you're interested, perhaps we could start a support group on Facebook and invite people from here that are interested. I've seen some, but they are filled with lots of medical stuff, etc. It would be nice to have some simple casual talk with those who have been through this. If you have the time and desire, let me know and we can collaborate on this :)
Mark Liu I am so so glad that you are doing better. I think it’s a wonderful idea to partner up and get a Facebook group going. You can email me at Bettiekk@gmail.com and let’s gameplay how we can do this.
Will do! I'm off Mon/Tue, so I'll get in touch with you then :)
I too was 38 years old when I was diagnosed with a non malignant pituitary adenoma. I had double vision and was near death on a Friday in Tucson, AZ, stabilized with steroids, operation the following Tuesday. The golf ball sized tumor and pituitary gland were removed trans-sphenoidal resection by Dr. David Greenburg at Northwest Hospital. My main nurse was Bea Blackburn. Since then I have taken Synthroid, Hydrocortisone, Testosterone and recently Human Growth Hormone as replacement therapy. I am almost 68 years old today. Glad to correspond with anyone to help walk you through this diagnosis. Grace and peace to you.
Hello. I had a pit tumor that caused me to have type 2 diabetes. I had a really bad headache and an endocrinologist found out my tumor was in the same area.
I had mine removed at SHANDS UF hospital in 2005. No residual problems and type 2 diabetes was cured...subbed...
Did you have acromegaly?
God blessed upon you , its very good sign of your health you dont have seriouse problem.
I’m trying medication for a month to see if my prolactin level goes down, otherwise my doctor suggested surgery. Every case is different, my prolactin level was 367.9 on September, and now is 519. I’m so scared but for some reason your story calms me down 💜💕 (Edit: I just started the treatment today, & it took months before I got to see a specialist)
Patty Viviendo I wish you the best of luck with your journey. Keep me posted
Patty Viviendo I had pituitary surgery 16 yrs ago - I was scared too - but can say looking back - I’m glad there was a surgery to correct my problem. Ask your specialist endocrinologist all the questions you have. The very best to your relief.
You should take cabergolin medicine to decrease prolectine level
@@Monika652-e9v why do people go for surgery when the can use carbergoline?pls explain
One's should go for surgery only if the medication is not working and prolactin level and tumour size keep increasing otherwise cabergolin is best option until unless there is no side effects as there is always a risk with surgery with high prolectinoma
I’m so scared. I’m going to a neurosurgeon next month. I can’t wait.
I was just diagnosed w/ the same, pituitary macroadenoma. Curious to know how recovery was? TIA, glad it worked out for you so well. Thanks for the video!
Thank you so much. I've just been diagnosed with a functioning microadenoma. I'm worried. I'm seeing my neurologist and endocrinologist tomorrow 😭 the NHS missed this and put my hormone disruption down to PCOS and stress and its neither! So glad I went private for a second opinion and an MRI x
I’m glad you took charge of your health and investigated more. I’m a huge advocate of being in charge of your health.
Thank you for sharing your story. My husband went through the same procedure three weeks ago . He had slight headache . That is common due to inflammation inside. He is doing fine . We have to follow endocrinologist for hormones . Wishing you all the best for future.
Pramod Dave I wish him a speedy recovery!
Pramod Dave is he still taking hydrocortisone I’m asking because I still am and I’ve been out from surgery 7 months ago and how long did he feel pressure on nose and forehead after surgery thanks
OMG thx so much for sharing. I was diagnosed yesterday with a 2.5 cmx 2.5 cm micro-adenoma. My pituitary & pituitary stalk is slightly inflamed. I am soooo severely fatigued and drained! No amount of sleep helps, high anxiety, missed period, mood changes, all kinds if things! I hope with the surgery helps with my symptoms especially the fatigue it’s exhausting
Sitting Pretty Slayed by Doll thank you for your comment. I hope my video helped you. I have other videos on my channel regarding my journey. So if you wan to check those out, it might help you. I wish you the best of luck and speedy recovery! 🙏🏻
Bettie J Awww thx I will check them out! Thx for the well wishes!
Sitting Pretty Slayed
How you are going now? If you don't mind to share
Hi mam my mother have a pituitary tumer . We are hopeless . Plz help me
I also had same procedure done at UCLA because of peripheral vision loss. I'm now OK but, I had terrible headaches for a couple of days after surgery and developed diabetes insipidus for about 5 years (excessive urination and a severe thirst). Despite all those problems, such procedure was worth it.
Your experience with such surgery makes it look like a simple and uncomplicated procedure.
Hi, were you also given any hormones injections after 6 months. Mu father has gone through the surgery and now after 6 months and another MrI, doctors are recommending hotmones injections. What to know if this is normal
Its crazy i had this same surgery done and when they told me i had it i felt like my heart dropped and because i thought i just needed glasses lol i was losing my Peripheral vision so i was in the hospital like a month but long story short i got like 90 to 95% of my eye sight back.
You are so lucky you should thank that great doctor that discovered it right away that was amazing he saved your life!
Kandice Klein I’m grateful every day for him!
Thank you; I am in the position where they suggested the craniotomy and I want the endoscopic nasal approach . This really helped me a lot in coping and building my confidence for success. Sending love!
Hello, thank you for sharing!
May I ask what size is yours?
HI Bettie, Thank you for sharing your story! I live in Arizona as well. I am currently an occupational therapy student in Peoria. I was assigned a paper on pituitary adenomas, this video helped me understand the topic more. Would you be open to answering more questions on how it effected your daily activities ?
I had my pituitary tumor removed on April 1, 2019 ... no joke. They went through my nose. I found it because it was adversely impacting my testosterone levels. My general doctor sent me to the see an endocrinologist. He ordered an MRI and the 3 cm tumor was found. It was not impacting my sight. It was soft and was removed easily. I used to do eye exercises to strengthen my optical muscles. This may have helped to soften it up as I had been doing it for years not realizing why I had some resistance in moving my eyes. Now that the tumor is gone, I can easily move my eyes and they are no longer as dry as they had been. Good luck to anyone/everyone who goes through this. You should recover fine with the right surgeon and medical team. I had my surgery at NYU Langone in NYC.
C apt ,
could you tell me the symptoms of the tumor
Did the doctor say that the tumor was affecting your eyes?
@@natty34305 no dear i asked many times to d doctor whether i have pitutary tumor or not, he says no.
My worry is i have low testosterone n i dnt know the reason.
@@natty34305 is ur test level increasing? After the surgery
I have a pituitary tumor. What caused me to go to the doctor was I lost my peripheral vision and the color in my right eye. That was an experience. No peripheral vision and seeing color out of one eye and black and white out of other eye at the same time. I went to my eye doctor and he referred me to an in endocrinologist. They call the tumor a prolactinoma tumor. I found out that I had the tumor 7 years ago. It was the size of a golf ball. Located right above the pituitary gland. They wanted to do surgery on it. But. They found out but there was a cyst connected to it. In layman's terms I couldn't have surgery on it. So they started me on Bromocriptine. Dosage made me extremely sick and extremely dizzy most of the time. But after taking the medicine for three months. My eyesight came back to normal . But the side effects lingard. After taking the bromo for 3 years. They switched me to a drug called cabergoline which I've been for the past 4 years and am presently on. The in chronologist said the tumor should shrink to the point where it's small enough that my body should exorbitant back in. But for the rest of my life every six months I'll have to have a MRI done to make sure that it's not growing or turning into cancer. Life goes on.
God bless you.
Well if it shrinks, hopefully they'll remove it, no?
I found out on Saturday that I have a 5mm microadenoma. My Neurologist didn’t even know what it was and referred me to a Endo. From the looks of it (as a medical student) it’s pointing to Cushing’s. I am devastated but determined to fight!!
Yanira Ojeda Im going through the same thing!! With Cushing’s and everything! Cushing’s is extremely annoying and it’s a monster!
Courtney Monceaux I feel your pain hun. We can do this though, we got this!!
Whatever happened? I am going through the same thing! 5mm!! But I have an appointment like 20 days from now with an Endocrinologist...I know this was two years ago. Please update me
@@accountdeleted9845 still dealing with it. Nothing major, no crazy hormones leaking and it’s being washed every year with yearly MRI. Best of luck 🤞🏼
@@Cloudy_mellows thank you and you too.
You poor thing. I am worried between this and adrenal tumor. I have anxiety, heart palpitations, never had normal periods, and often just dont feel right . Glad youre ok.
How are you ? Did you find cause of this ?
@@fancylove9424 hi yes. Mine wasnt this it was early menopause. Im on meds but thank you for asking.
I found out I had a pituitary tumor once I realized I was losing vision in my left eye.. you’re right it’s scary to have surgery on your brain.. I feel much better.. I had my surgery on the 30th of September.. my hormones are very low.. also I mine was a mass as well.. 3.6 centimeters.. they removed the whole entire tumor..
How's your recovery period?
👋 how are you doing now? Hope you are doing great ..
Thanks for sharing your story. I just had my surgery 3 wks ago and it was very scary. I wish I had seen this before. My recovery has been a little difficult because I think I returned to work too soon. I'm really interested in how you are doing now, and if there is anything you could recommend I should do to feel better sooner. Take care.
Thank you for sharing your story I'm going through this now it's just round here it's hard to find a good doctor I've had this I found out like 6 months ago 7 months ago I've had headaches I vision problems. where I live I was trying to get into a Pittsburgh hospital but they will not accept my insurance. And I was at that point to where I was upset scared didn't know what to do and then I seen your story it gives me a little hope also will my sister from the church God bless her she young refer me to a local doctor I haven't been to her yet but that's exactly how they found out my tumor my paroxetine level was high and I just want to say thank you for sharing your story and please keep me updated on how you're doing how you're feeling. I'll keep you in my prayers
Go to NYU Langone in NYC
This video help me so much I was diagnosed this month and I’m gassing my surgeon next week and I’m so scared I’m glad u made a full recovery
Glad everything went well. I had a pit tumor 3 years ago as well so I can totally relate. Mine was very large also, about golfball size. I had no symptoms. I had woke up one day with a headache that got worse through out the day. Finally went to the hosp. Thought it was a migraine... they ended up doing a CAT scan and found it. Sent me to Ohio State University. Just as I arrived at OSU ER, my tumor had a stroke. Thank goodness I was at the ER. Stroke hit the tumor only thank goodness. It is a scary situation, they cant tell if it cancerous until they remove it because there is no way to do a biopsy. Mine was benign thankfully. Im doing well with a few minor problems. I go next month for my 3 yr MRI. My Dr said if they return it is usually the 3 to 5 yr range. Wish me luck.
Also was very lucky to have one of the top 3 nuerosurgeons in the world. My Dr helped invent the tools they do this surgery with and does seminars all over the world on this surgery. Im very lucky he was my Dr and was there when the stroke hit.
Tom Laird wow! That’s crazy! I’m so glad you are ok. It’s definitely very very scary and the fact that you walk away from this with minor problems is a miracle. Best of luck to you🙏🏻
Hi! Could you share your dr's name? My son decided to have his pit tumor removed. It's also very large, but is not an emergency, so we are taking our time finding the "right" doctor team.
@@annaw3130 had your son removed tumour ?? My son has same problem.
Im diagnosed with pituitary lesion but not adenoma... The diagnose is named as RADHKE CLEFT CYST. Im 25. I found out it accidently during an mri of my spine. I dont have any severe symptoms other than headaches. pituitory hormone levels are normal. My Doctor told me for every 6 month checkups.
Hi Bettie, my tumour was much like yours - size of a golf ball and silent, and finding it started with an eye exam for new glasses. I was lucky in that a bunch of people didn't like what they saw and referred me on until I was given a field of vision test on an ophthalmologist's hunch and that led to an MRI.
Two years later my tumour is gone but in my case there are side effects. When the ENT was doing his thing, the blood flow was intense and the surgeons had to stop and try again 3 days later. When I came to after that first op, I had lost half the vision in my left eye and by half I mean the bottom half. Top half above the focus point I can see forms, patterns and colours and the bottom half is blank. It doesn't work - the eye doctor says it's vascular and that makes sense.
How is your nose? Mine will not stop producing mucous, it's like I have a permanent head cold and blow my nose out so many times a day. Really annoying.
But, I am not blind, did not have a stroke and am not dead - my tumour was really close to the carotid, the neurosurgeon was very worried about that. I guess I skipped a bunch of bullets, hey?
Praying for a speedy recovery.
I was just diagnosed with this problem.
Still trying to wrap my mind around it.
I have a few more test to take before a treatment will be suggested. 😢
I was diagnosed in 2007. I was seeing Doctors at Intermountain Medical in Utah. I saw a Neurologist and he told me it was too big to remove surgically, The prescribed a medication that was supposed to shrink the tumor but It didnt work. I am 71 now, still living with it. I have blinding headaches, My peripheral vision has diminished, I weigh nearly 300 lbs due to the complete imbalance of my hormonal system. I have very low testosterone. Not fun.
Did they prescribed anything in 2007?
Check the medicine type your adenoma in functional what is tumor size check gamma knife and cyberknife
@@abdelfattah337 you sound like you know alot about this type of tumor. I just got diagnosed with a 3x2mm size. I'm still waiting on my appointment to see a endocrinologist. What type of medication do they use for this size? Mine is a functional, messing me all up 🥴
Day 2 from surgery 2.5 cm. God is amazing!!!!! PRAY and seek God during this time of adversity. I stressed the tumor and the process so much until I Gave my life and tumor to God. The surgery took me 1:00 hr. 1:30 TOPS! Dr Jonas Sheehan did amazing 👏.. I have my eye sight back and IM Still recovering but BLESS BEYOND MEASURE 🙏 ♥ HEADACHES BUT MOST OF THE PAIN WAS OUT OF SURGERY Mucinex to keep nasal clear chest clear ...cough drops.. apple juice&milk for throat pain spit out any linking blood from nasal drip.. dap your nose from blood consistently to keep clear. But giving my life to God was the key part! I hived my doctors off the operation table and was ready for life after surgery !
Thank your doctors not some imaginary puppet master or primitive religion
I have this and am pretty scared about the surgery. Mine is growing quickly and because I have bad health due to Lupus. Thank you for sharing this.
Thanks for taking your time to share your testimony.
Thank you to everyone for sharing your stories!!! I also had surgery July 2022; mine was 2 cm and was a cortisol secreting tumor. Thank God for the doctors and surgeons that can so “easily” treat this condition. The sad part is that people seem to live with these things so long before they’re discovered. Also highly recommend Mayo Clinic in Florida for endocrinology/ pituitary disorders. They offer telehealth and have helped me a lot Post-op. Good luck to all who have and are going through this ❤
did it get better with cortisol after removing. i slso have ectrem low acth but no help
do you want to pm me
@ Hi - yes better but not 100% because my adrenal glands have not yet "caught up" and able to function on their own. I still take 20mg of hydrocortisone daily (it has been a year) so I can have energy to get through the day. Best of luck to you.
Hello I just had brain surgery 4weeks ago with dr. Little here in Arizona too! He was amazing:) I did not have the same tumor you had mine is called a Craniophrygionma and mine was growing in my pituitary stalk. I will be doing radiation next month to get the rest of mine out cause he was able to remove 95% of my tumor out. How are you doing now with recovery ???
d2espitia oh wow! That a small world!! I am doing great! I just went to see him for my 3 month check up and he said everything is looking great. How are you feeling after your surgery?
d2espitia I am hoping to get in with dr little for my pituitary tumor! I’m just starting the process of getting it taken care. I did some research on neurosurgeons, and he was one of my two options. I’m happy to hear your surgery went well! How are you feeling now?
Bettie J hi! How are you liking Dr. Little? I ended up choosing him to help with my pituitary tumor! I sone research, but would like to hear some more! Thanks
Korina Nunez Dr. Little is amazing. He is the best at what he does. You don’t need to look at any other neurologist. He is the reason why I recovered so well from the surgery. He is very helpful and he will answer all of your questions. I have had my surgery for 6 months now and I feel amazing! Good luck with everything and keep me posted!
Thank you for sharing your experience...
My daughter is only 15yr old and we’ve been dealing with this since she was only 2yrs old.
Now thinking about surgery for her.
Blessings
😷
In my personal experience, I was diagnosed with a Macroadenoma in 2017 when I was 18-19yo. I was having fainting spells. They said it was not related.
But its now 2020 and its almost going to be 4 years since I haven't had insurance and wasn't able to get it checked again. I feel like my vision is getting more and more blurry. I'm getting bad headaches, migraines. My peripheral vision is starting to get wonky. I feel pressure in my sinuses A LOT. Now to add on top of it, I'm not sure if its related or not. I've been having super major anxiety. I've always struggled with anxiety, but NEVER like this. I just finally got my insurance back. I'm trying to get everything checked as fast as I can. Its been really stressful and just makes one feel very isolated. God will help us get through it. We just have to stay positive. We can do it. Things just take time. Much love and positive thoughts for anyone else who is going through this.
Good luck with everything, keep me posted
Hi thanks for sharing this video, it’s very helpful. How often were you having headache and were your headaches in different locations or always in the same location?
It ws scary for me too to knw abt my pituitary macroadenoma !! It’s been a year... I ws daigonised in August 2016 and operated in November 2016 ... and yours is succha similar story ... cn totally understand d trauma ..bt we r al gud and healthy now 😊😊... all the best for your future👍 .. stay blessed stay healthy ..🙏
khushbu devda thanks for your comment! I’m so glad you are doing good 😊
khushbu devda how much did it cost u and whr did u go for the surgery...and what are its results after 2 yrs by now
Khushboo how r u now
@@abhinavmishra5463 I got my surgery done in Hinduja hospital n it costed me aroun 1000000 which includes my 20 days stay in a hotel post surgery ....
@@afsheenimran4c515 I m good now, regained my peripheral vision after surgery which is very surprising... still have mild high prolactin , so have to take cabergoline once a week, stil have ammonorhea and also secondary infertility.... bt I m healthy otherwise ... no headaches or other probs
I am 65 and found out through Ophthapamology clinic because for I kept complaining and they kept checking so one of eye Dr's said I'm sending you for MRI and I went and thats when they saw the tumor. I got appt with Neurologist and was set for surgery and yes very scary, a lot of praying but just had first ENT appt and next with Neurologist to go over what happen. In get well mode, appts to get too. Great Drs Care Team and Nursing Staff at Ochsner Health in Shreveport, LA.🙏
I found out I have a 1.5. cm pituitary tumor. Surgery scheduled in a few weeks. Thanks for sharing your story got more information here than with the doctors... Scar.y stuff
Raj Chavan I’m glad you found this video helpful. Please keep me posted on your recovery! I wish you the best of luck!
Bettie J this is Raj Chavan’s son Neil Chavan and my father just went into surgery and the family is all waiting in the family waiting room. Your video really helped my dad go through with this surgery, he was even cracking jokes as he was wheeled away on the bed, thank you for this video.
Raj Chavan Thank means soo much to me! I really wish your dad speedy recovery! Please keep me posted 🙏🏻
you will be fine raj,dont worry God bless upon you.
@@rajchavan7470 how did it go bro
My prolactin levels came out at 640.6 and I had an MRI a couple weeks ago. Will find out the results this Friday. I’m anxious to know how big my prolactinoma is...
Hello how are you;;; my prolactin levels are 830 what happened with you any updates;;;;
Great video, thank you so much for sharing darl
I hope the future is bright for you
God bless 🙏🏼🦋😊xxxx
jen goldfinkle thank you so much! You are very sweet!
I have just found out I have a pituitary tumour after going to A&E with a headache that was constant for 12 weeks
Grateful to you for sharing this.
I am a 34 year old male, diagnosed last month with a pituitary adenoma, very small but causing IGF-1 high levels. Possibly acromegaly disease. For a year and a half muscle aches, joint poping, headaches, sweating and numbness. July 6th 2023 tumor comes out with the help of PNI. Dr kelly is doing my surgery and I'm hoping symptoms go away. Anybody else experiencing the same thing of so please reply me. Thanks.
Hey I have a prolactinoma as well, I see you have had the surgery, I haven’t gotten mine removed, but nice to find someone who knows about it.
This Is Chrissy me too, there isn’t that many people around here who even know what I’m talking about, I also have chiari malformation type 1. I found this video so interesting
I subscribed did you?
Hope all goes well for you Chrissy x🙏🏼👍🏻😁
I'm researching best natural cure for bad eyesight and discovered an awesome resource at Great Gazer Fix (check it out on google)
Many people don't have money for treatment and they do different treatment like reiki medetation by thinking treatment .
Hope you get better and hope you get a baby.. my teacher has died from cancer sadly in 2017
Kristen Fuller thank you! I am actually pregnant now 😬. I am sorry about your teacher.
@@BettieJanesian congratulations 👏
Thanks for posting this! I’m meeting with the surgery team next week, 2.5 cm also with a cyst. Found it when I started losing my vision. Not that long ago this would have been so much worse, good times!
A Phizbot good luck with everything and keep me posted.
I am so elated to have come across this group. I was diagnosed of the same pituitary tumor recently after i have lost 60% of my left eye sight. I have seen the Neurosurgeon and i am about to have the surgery. I could ready that probability of getting the vision restored is high . I pray i get mine restored fully too. I will keep you guys updated with my experience after the surgery. Please pray for me. Gog bless and one love.
m too going to have this we will talk if u can please
@@Powerofshiva8my husband had the same surgery 1 and half year back
Prayers you are doing well!❤
I am 27 years old.
I have little bit ear pain and feeling imbalance and my head feels heavy.
I am very scared i may have brain tumor.
GOD BLESS YOU.
Hi, I'm 35, female, I was 145 pounds, active and healthy, but I suffered a concussion on my left side of my head about a year ago, that may have nothing to do with this now but I feel it should be noted, because shortly after I would get severely dizzy, but that subsided greatly, but still have dizzy spells laying down, sitting up, turning my head, etc, then I started having blurred and doubled vision, regular headaches 2-3 times a week compared to maybe 1 a week before normally, then I started gaining so much weight no matter what I do, im now at 300 lbs and climbing and eating very very very little( I'm freaking starving😭) because everyone even strangers tell me how fat I am and need to exercise, I clean 3 houses twice a week, I have to care for my grandmother, grandfather, mother and an aunt with copd, and run a farm, I have to do EVERYTHING for them, I have 3 children to care for as well, so I'm not lazy by no means, but I'm so fatigued and depressed, my periods are way heavier than ever and slightly irregular by a few days every month and ( sorry in advance) the clotting is constant and slightly bigger than I have ever had , I went to a gynecologist and my prolactin levels were at a 25.5, no cysts on my ovaries or anything, not pregnant, not breastfeeding, so is/ could this be a hormone secreting pituitary tumor???
It's been a year since you posted, how are you today?
@@jayalexander9033 about the same😞
@@jfregia8070 awwww I'm sorry! Did you find out what it was? I have an appointment with my ent tomorrow because I have a cyst or polyp in my sphenoid sinus cavity and that is right under my pituitary gland and I'm obviously not happy im scared and wondering if I have a pituitary tumor too.... cause my periods have been weird
@@jayalexander9033 I did find out it's a pituitary tumor and it is causing hormonal disruptions BUT it's not large enough to operate on and my endocrinologist won't give anything to help the hormones balance back out AND basically said everything is "all in my head" like I'm crazy or just a fatso so I'm not worth her time basically...but she takes my money just fine😒
@@jayalexander9033 I really hope everything turns out ok for you tomorrow and that you have a kind, understanding and compassionate doctor❤
I found out I had a pituitary tumor at the age of 25, i was very devastated. Prior to not knowing that I have the tumor, I had severe headaches everyday and milk coming out of my breast even though I wasn't pregnant. I'm on medication, but I want to get surgery. Whenever my endocrinologist tells me to stop taking my medication my prolactin level would go up and milk would start coming from my breast. I been trying to get pregnant being on the medication but it's been unsuccessful. 😭😭
Yaa Fosuah I’m sorry you have to go through this. It’s hard especially when you are trying to get pregnant. I wish you the best of luck with your journey. And please keep me posted! 🙏🏻
Dear you need surgery , God bless upon you. it must be ok.
Hi I have this. And it scares me. I don't want to go blind
Oh my god. I just ended up clicking this as you look so much like my sister. lol
Hi there! Can I ask who your Gynecologist here in Arizona is? I’ve had the same symptoms, inability to conceive and headaches for years and would like to start with Gyn with determining what’s going on. It sounds like your Dr really cared to get to the root of the cause and I got so excited when I heard you’re from AZ!
heyleegee his name is dr. Eric Reuss in Scottsdale. He is amazing at what he does and a very caring doctor. Good luck with everything and please keep me posted
My doc referred me to an endocrinologist and I’ll be seeing him soon. Wish me luck. I think this could be my problem.
Sara P best of luck to you! Keep be posted
Bettie J got all the tests done and my endocrinologist found nothing!
Sara P what are you going to do now?
Bettie J no clue. She seems to think my symptoms are simply from weight gain instead of Cushing’s. Oddly enough, my symptoms seem to be disappearing.
Sara P it’s good that they are disappearing
I just had an MRI tonight to check for this! Thanks for making this video :)
Thank you so much for sharing your story I am also from Arizona I also ended up getting a 74 value for prolactin in my blood work with only two symptoms one being irregular periods. I was sent to have an MRI done today and I wont be receiving my results until Friday so im feeling extremely nervous and quite scared.. I was wondering how old you were when they found it for you and if you had any other advice you could give? Im 19 and I don’t know anyone who has gone through this before.. Thank you
Brandy XO thank you for your comment. I found out I have it 5 months ago so I was 32 years old. I had my surgery 2 months after I found out. Don’t be nervous or anything! If you have it (I pray you don’t) but if you do, make sure you get the best neurologist. My doctors name is Dr. Andrew Little from the Barrow institute. He is in St. Joseph’s Hospital. I know it’s scary but be positive about it. We are lucky we live in a time that they have such good technology to make things easier. I made this video 3 weeks after my surgery and as you can see, I was fine. Be strong and good luck! Come back and let me know what the results were. I will be thinking of you 😊
Thank you so much for replying I would have never guessed you are 32 you look so young! :) and thank you very much for all your kind words and positivity it truly means so much! 🙏🏽 I just got my results today I dont remember an exact measurement that i was given but I was refered to a neurologist and endocrinologist for consultations, my doctor said that the neurologist could possibly just zap it away with a laser or another option would be to take medication to try and keep it from getting bigger.. ill be seeing the neurologist in about a week but the endocrinologist i wont be seeing until July
Brandy XO that’s very sweet! Thanks! I’m glad your taking the right steps toward treatment. You will put this behind you very soon. Keep in touch! 😊
girl relax, my prolactine level was 950 in the beginning, with meds it's getting higher i dn't beven know how s that possible but it s what s happening, so 74 means it's a microadenoma you'll be put to dostinex 0.5 mg one pill per week and that's it.
Lost Potato wow I’m so sorry, but if your levels were so high then why weren’t you offered to have it removed?
I'm about to have this surgery, first week in july. Now I suspect my 32 year old daughter has the same problem, she has been unable to have children and has had several miscarriages.
Good luck with your surgery. I dont know if the tumor was directly related to the infertility that I experienced but I think it contributed.
My prolactin levels are high and waiting for the MRI , having visual disturbances, Is the loss of vision reversible or is it permament?Please let me know.
Wishfultask I’m sorry you have to go through this. I actually did not experience any change in my vision so I can’t accurately answer that question. My guess is it depends on how much damage the tumor has caused to the optic nerve. Good luck with everything and please keep me posted.
Reversible
I was recently diagnosed with hyperprolactinemia after doing a fertility panel. It was 52 or 1100. They didn't see a tumor on my MRI so if it was there it was very very small. I am on cabergoline right now and hoping it works - I've noticed some improvements and only just took one pill as I am in my first week (take twice a week) but am waiting for my menstrual cycle to return which I missed for the first time in 16 years last month. I am 29. I am hoping the missed period is from this prolactin and nothing else. It's really stressful
Hi, I got my brain tumor removed through medication. After 5 years at present experiencing same headaches again, and I suspect that my testosterone levels are at bottom, whom should I visit, endocrinologist or neurologist.
sandeep reddy thank you for your comment. I think you should visit both but I think neurologist is first so they can do an MRI and figure out what’s wrong. Good luck and keep me posted!
was it the same tumor regrowing again? i mean after medication do i still have chances left for it to grow again?
Hi Sandeep, I have headaches everyday but my doctor refuses to give me an MRI. Were headaches your only symptoms?
@@karlhans6678 find a neurologist doctor who will
@@Mr.BigBadWolf hi, I started an anti-cancer diet cause i feared it was a tumor, also i sleep more. My headaches are gone now!
Hello Bettie I hope that you are well and enjoying good health now. What was your prolactin levels when they diagnosed you?
They are not brain tumors! A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin.
Seriously man? How is this helpful: my neurosurgeon calls this a tumour so...
@@musiquefrique he is correct though they are not brain tumors.
But they are a tumour in the Brain so.... yeah.
A benign tumour is a tumour a malignant tumour is a tumour they are called rumours cancerous or not
What they’re saying is that it’s not considered a brain tumor because the pituitary gland isn’t in the brain. Therefore it isn’t a brain tumor. The pituitary gland sits below the brain and is attached to it. So for one to say it’s a brain tumor and that they had brain surgery because of this is inaccurate. They’re not saying they aren’t tumors. They are, wherever benign or malignant. This chick didn’t have brain surgery. Her headline needs to be edited to what it actually is, which ISN’T brain surgery. It bugs me when people call it this when it’s so minimally invasive.
I have the same thing I have lived with my for 2 years. I have lost some vision. I have been diagnosed with Addisons disease due to thus tumor. I saw a surgeon 2 years ago they would not touch it. Now it has grown very large and has grown into my eye nerves. I am seeing the surgeon again soon to see if they can remove it.
Thank you so much. This was very helpful. I wish you good health, always.
wish you the best, wish you are healthy, happy and well. take care the sun heat. be safe.
well I'm a bit scared now
Me too
Don’t be scared... we all go at some point..
Fantastic video Bettie
thanks for your vid! very informative!
i had MRI for brain last week. today it came negative. i am so relieved.
What was your prolactin level
To everyone reading this please turn to Jesus He loves you and wants to save you from what you are going through, Only Jesus can truly heal He is the God of miracles, The bible tells us in Romans 10:13 For whosoever shall call upon the name of the Lord shall be saved, I seen God do amazing things in my life and in the lifes of people I know, God saved someone I love from illness leading to death, There is nothing impossible to God, Its as simple as asking Him to show you He is there and if you want to know He will answer you, I know this because it happened to me when I called out to God
Piss off
do not push your religion on to other people
I had my surgery last week, it was emergency because I lost my vision. Now on the road to recovery ❤
Thank You for sharing. Drs. have been testing me for a year and a half. Finally did an MRI and found a tumor. Talking to the neurologist next week
Good luck
A few years ago I had a massive headache at work that blurred my vision and almost made me pass out. After work I went to the ER and they found a large mass in my brain. After an MRI it was found the be a 5.1cm pituitary tumor. It was pushing on my optic nerves as well as it had encased my carotid artery and was putting pressure back towards my brain stem. My headache was caused by a pituitary apoplexy which they said can be life threatening. I was lucky enough to be able to be treated with medicine (cabergoline...and a lot if it lol). Now it is less than 1cm. They said to remove the last of it they may do surgery which I was very nervous about until hearing your story. Thank you for sharing!
How are you? Side effects of the medicine?
You’re a very beautiful and brave young woman. So glad you came through this OK. Stay well!
Thank you! 😊
@@BettieJanesian pls is surgery a must?can't carbergoline work for it?
Hi, I have the exact same tumor that u had and I also live in AZ...but after my diagnosis I was terrified at the thought of having surgery and refuse to deal with it. I know that's not the right approach but I'm struggling to cope with this. Any advice or words of wisdom would be extremely helpful. Thanks for sharing💜
Reena Danielle first, sorry you have to go through this. I think what really helped me through the process is accepting that I have the tumor and really believing that everything will work out for the best. Having a positive attitude towards is very important. Also if you take steps to treat it, you will feel better because then you will doing everything in your control to get better. I wish you the best of luck and keep in touch!
Reena. Be stronger. It’s a fairly low risk surgery. My wif is from Arizona. We live in Jacksonville florida. Anyways she just went through this. Hers was 2.3 cm. She is 55 yrs old. Good shape. But started having symptoms. They finally figured it out. Had surgery on Friday and was out of the hospital 4 days later. She is back to normal after only 9 days. They did hers endoscopically. Don’t be afraid. She is so happy she did it. There is another great Neuro surgeon in Jacksonville if your looking for another possible surgeon. Dr. Hanel. Baptist health. Anyways. Thinking of you. May god bless you. Sincerely. Mike and Tami.
I was diagnosed 3 years ago. Was been followed by Dr. William White @ Barrows. Now I'm been follow by Dr. Little. My tumor is 1.4 x 1.4 x 1.6. I did get another tumor removed by craniotomy. The hospital was amazing
I have the same, I am really scared. How's your prolactin after the surgery? This video helped me, thank you
Arianne Romasanta my prolactin levels went back to normal after the surgery. Are you getting your tumor removed?
@@BettieJanesian I am planning to. But I really don't think it is possible due to the pandemic. The hospitals are too crowded. Thank you so much ❤️ you gave me hope. New subbie here 🥰
I’m having an MRI next week because they suspect I have a pituitary adenoma. I also went to the doctor for abnormal periods and had a pelvic ultrasound which diagnosed me with PCOS. They checked my hormones because PCOS usually causes high testosterone and androgen but those were all normal and my prolactin was high. I’m very scared and overwhelmed. I don’t want to have surgery.
Sorry to vent but thank you for your video it helped.❤️
Oli Ski did you do your MRI yet?
Bettie J Yes, I had it on Wednesday but I don’t have the results yet. I should get them this upcoming Wednesday.
@@Mahomies17 what was your result
@@gurleenkaur9799 My results were sort of weird. They told me that they couldn’t see a tumor but it may be because it’s too small to be detected. They told me to come back in a year to see if it grows or not but I haven’t been back yet.
@@Mahomies17 what was your prolactin level
I found out yesterday I had this. I been suffering seizures and severe headaches for 7 years. I have been very neglectful with my health over the years. 3 weeks ago was the first time I got treatment for my seizures I was up to 2-3 seizures a week. Doctor ordered a MRI and I got the MRI results back yesterday it was a Pituitary Tumor. I meet with my neurologist on Nov. 27 nervous. He wants to do another MRI. Nervous and scared. I been on seizure meds and my vision is very blurred. The thought of surgery on my head is scary to me.
Sara Chai I’m so sorry you have to go through this! I know surgery is scary, I was so scared too but everything turned out well. I wish you the best of luck with everything!! Keep me posted please on what happens.
Update?
Than you for sharing you experience with us , did u feel any side effects after the surgery?
I would say just feeling really tired and the drainage from the nose was kind of annoying had a light headache for probably around a week after
Hi and thanks for sharing your story my sister she is 38 now and she lost her right side vision due to this tumor. She was diagnosed with the tumor 3 years ago but she only takes Bromocriptin a medication which helps to control hormone growth. She hadn't had a surgery because there isn't one where we live which is Africa(Ethiopia). She is now experiencing a great pain around her hills and ankles Please help us if you can by providing information on how much the surgery cost there in Arizona, how we can communicate your doctors. Please help!!!
Solomon Wasihun I am so sorry your sister had to go through that! My doctors name is Dr. Andrew little. His office number is 602-406-3181. I have health insurance so my surgery only cost me $3400.00 but I’m actually not even sure how much it will cost without insurance. I hope this helped and good luck with everything! Please keep me posted!
Thanks for the inspiration. I had no sex drive. I couldn’t maintain erection. My wife and i were worried. She asked i quickly go see a Dr. We did and they took blood samples. The test came back that my Prolactin is scaringly high: 66,683 mu/L. This is way out of range. My testetorone level is 6.8nmol/L. Also low.
Now i have been scheduled for MRI scan to rule out or confirm size of any tumor. That being mentioned, 10 months ago i had a small cyst in my breast and the GP ruled out any cancer and put me on antibiotics. I didnt know that it was as a result of hormonal changes due to Pituitary.
My life has turned upside down. But i will fight whatever happens.