My Pituitary Tumor Story
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- Опубліковано 29 вер 2024
- I hope you find this video helpful. 3 months ago I was diagnosed with Pituitary MacroAdenoma. I wanted to share my experience in hopes that it will help someone going through this. If you have any questions, please leave a comment below and I will be more than happy to answer your question.
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Instagram: BettieKK
Email: Bjanesian@gmail.com
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?
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
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🙂
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?
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.
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
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
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?
wish you the best, wish you are healthy, happy and well. take care the sun heat. be safe.
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 ..
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.
Thank you so much. This was very helpful. I wish you good health, always.
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.
Thanks for sharing my daughter has a pituitary tumor due to NF1 🙏🤲🇿🇦
Thank you for sharing your story I was just told by my MD that I need an mri due to prolactin levels being elevated. The reason for my concern was an odd symptom, breast pain severe pain and sensitivity in both breast. I was like oh wow it almost prob feels like what pregnancy feels when lactating. My mammogram came out good so now due to these levels being elevated. I need to get an mri scheduled. I kind get where this can be heading. Thank you for sharing your story. I hope that you are well.
On December 8th I got my MRI results on the 14th of December that I have a pituitary tumor. Still getting the labs done just got the lab work ordered.
Prayers, God heals.
Thankyou for sharing, puts my nerves at ease a little💗
Madeline Shea do you have a tumor too? How big?
Idk, I’m getting tested soon but I have symptoms like you and my hormone are around 100 somthin’ .. my doc just told my that this is very possible the reason. Hearing your story has helped for sure!
Good work wish you well👍
John Smooth thank you!
Glad you came out ok Bettie. I just found out that I probably have a pituitary tumor can you tell me the name of that doctor and the institute? Because I live in Arizona too. In the video it sounds like you said Dr. Little and the Barro institute.
Gregg Gamble hi Gregg sorry to hear that. Yes Dr. Andrew Little is the best in the industry for this type of tumor. He is part of the Barrow institute at st. Joseph hospital in Phoenix. Best of luck to you and please keep me posted.
Hi there, I've been feeling completely exhausted all the time drowsiness alot during the day ,I dont feel weak at all so I had bloodwork done to check my prolactin levels and all 3 times came back at 21 , my endcroligist is recommending me have a mri , I'm just very scared , is 21 high I think for my self being a male normal is 18
What are the criterias to get rid of it by surgery? I have an MRI scheduled and I’m pretty sure it’s a tumor since I have amenorrhea and high prolactin... If I really have it, I would prefer to get surgery instead of having to take pills for years🙃
Méli-Mélo I think it depends on the size and how much it is messing with your hormones. Mine was big so medication was not an option.
Thanks for sharing!!!
My mother has tumor on hypothalamus pituitary doctors say its hard to operate there a slim chance patient will survive. Is there any medicine that will shrink tumor?
How was your recovery? And we’re you able to have kids after? Did your symptoms go away? I’ve been having symptoms and miscarriages for 8 years and asking for an MRI because this was my fear. They kept telling me it’s so rare of a tumour. I have symptoms of liver disease, kidney problems, thyroid problems, diabetes and cardiac problems from the Cushings that’s been untreated. I’m terrified of surgery but I’ve been sick and unable to have kids for so long. If surgery works to reverse the symptoms that would be amazing!
My recovery was pretty smooth but I can’t say that about the majority of the people that have had the surgery. I did end up getting pregnant 3 years after my surgery (I had other issues too other than the pituitary stuff) my baby is 7 months now.
I Don't have much facial hair. I think this is due to pituitary disease. Though I tell my doctor and he shrugs and says no you don't. What if I did? I'm 42 yo
Did you have any post operation pain or discomfort? I need to get mine removed and I'm scared to death :( mine is 4 cm in diameter and I'm freaking out. Thanks for posting this video!
Bunny Leigh I did have a mild headache right after the surgery but they had be on consistent medication. So it wasn’t anything I couldn’t tolerate. Don’t be scared it’s really not that bad. As long as you have a good doctor, you should be fine. Good luck with everything and keep me posted!
Hey Bettie have been diagnosed of high prolactin 929 and recommending for surgery have u been been able to conceive after the operation and was all your hair shaved out when you wanted to do the surgery
Samuel Onwuchekwa first, I’m sorry you have to go through this, but I’m glad you have a plan in place and your getting treatment. I have not been able to conceive. I have been trying for 2.5 years and we are now on the ivf journey. Regarding the surgery, I didn’t have to shave my hair because they went through my nose not my skull. What type of surgery r u doing?
Same problem 😞
Hi I’ve gone through surgery already 7 months ago from a pituitary tumor I wanted to know if you were prescribed hydrocortisone and how long you took for and for how much time did you feel pressure on your nose and forehead after surgery I would really like to hear from you thanks
Hi, I hope you are recovering well. I was not prescribed that medication after my surgery so I am not sure what that one is for. They gave me mild pain killers like Tylenol and Ibuprofen after my surgery. There was a great amount of pressure that I felt when I was waking up from my surgery. It felt like my head was sooo heavy. I also had a headache when I woke up which is pretty normal for having brain surgery. I hope this is helpful for you. Let me know if you have any other questions.
Bettie J Thanks a lot for the information you shared with me
Bettie J How long did it took for you to fully recover?
@@hectorgarcia7138 I would say I was fully back to normal at 4 months after my surgery.
Bettie J thanks
Hi how r u doing??i just recently had my surgery done on the 26th of jan last month...so its almost a month now...the thing is i still cant breathe properly...especially at night times...they did give me saline to put in my nose...but the crusts dont come out...can u plz guide me in this? ...
Hi huma. I think you need to go back to ENT. Im learning about process as I will need this in the future. ENT doctor cleans nose. There is also pituitary support group on FB, very resourceful. Many people with that experience surgery. Hope you continue to do well
Exhaustion, fatique, insomnia, blurred vision that comes & goes, hot flashes, no sex drive, memory problems, confusion, brain fog, depression, no appetite, never thirsty, or hungry, heat & cold intolerance, high prolactin levels, intolerance to stress, severe anhedonia severe constipation, headaches that come & go, personality changes. All of this for almost 5 years. Severe anhedonia - inability to feel pleasure, happiness, or emotions. Need a good doctor to do the necessary tests, not an NP like I went to a year and a half ago. No life for almost 5 yrs. Also, I run into people at the grocery store, bc apparently my peripheal vision isn't working. i have been doing CBD oil for the last year and a half.. if I have a tumor, maybe the cbd oil is keeping it from growing, so that is why one test showed high prolactin, and the other one didn't, so she did no further testing.
Jen Stewart I’m sorry your going through all of this. I wish you the best of luck!
Thanks.
Thanks for your video :)
Hi Jen, I had many of the same issues you mentioned and now post-surgery, many of the symptoms have disappeared or have been minimized. I found my tumor after losing my peripheral vision and that is one of the major indicators that there is a pituitary tumor. I'm not a doctor, but would suggest you find one that will get you an MRI. Not to scare you, but continued pressure on the optic nerve can result in permanent damage or worse. I went to an eye doctor, who in turn sent me for an MRI and then a neurosurgeon. Please get this checked sooner than later. If I can be of any help, please email me at markliu1717@gmail.com. Take care!
Mark Liu Thanks, Mark. Maybe there is hope. Life has been turned upside-down for so long. Will email you. Glad you got help. Thanks. Jen
After sargery any other treatment required?
Hi my prolactin levels is 600 it's dangerous plz reply me I very scared about this
anju d what did your doctor say?
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 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.
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
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 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?
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!
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!
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
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!
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!
I’m so scared. I’m going to a neurosurgeon next month. I can’t wait.
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
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 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.
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.
Oh my god. I just ended up clicking this as you look so much like my sister. lol
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
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.
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'll keep you in my prayers.
Explore With Rick thank you
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.
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!
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 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 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
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.
Thanks for taking your time to share your testimony.
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.
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.
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.
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.
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.
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.🙏
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!
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!
Me also operated by pituitary macro adenocarcinoma tumor by endonasal way 3years back . Now iam fine . I don't have any health issue now.
Bt one fear always scared me that is it came back again .??? Please reply madam.
My features same as urs features.
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
So I am 20 years old I have hypertension and I’m on 3 blood pressure medications. I am healthy weight. I was diagnosed with Liddle syndrome which is kinda of a rare syndrome I’m not 100% convinced because it is genetic and I don’t have a family history of this! I have missed two periods And I have never missed a cycle. I have super high BP, low renin Low aldosterone, low thyroid, low t4, low potassium, frequent peeing, Charlie horses. I also get very cold feet and hands that turn very blue and purple. When I stand my Bp can shoot up super high and my feet turn blue. I have horrible headaches and I have never experienced headaches before like I do now. Anyone else ever experience this????? No doctors can really give me answers. I never had High bp until suddenly last February. High bp as in 185/100, 170/110, 164/112. I am starting to think this could be pituitary related. Can anyone else relate?
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
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.
well I'm a bit scared now
Me too
Don’t be scared... we all go at some point..
Hello dear,
Thanku for sharing your story,
I am a astrologer and counselor,I try to help my clients to know the exact cause of their health issue.Taking your example I will try to dig the planets behind that.can you share your birth details with me plz .if you don't mind., 🙏
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 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
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
Thank you very much for sharing.....my sister is alone and just found out that has a tumor in her pituitary about 1.4 cm consider macroadenoma. In her case it compromise here vision so after to weeks since that she started feeling her face and leg kind of numb...as I write she is hospitalized. Drs are running tests so they can operating on her through her nose. Se is in the USA alone....so my question is about the recovery. Do you think is possible to help yourself withou the help of anybody? ...We are in a country where we have tight mesures for COVID 19 so we can not go help her. We are devastated. Could you breathe through your nose after the surgery?....the sad part is the she is having issue with her vision... :(
thanks for your vid! very informative!
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.
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
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
😷
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 .
I'm for surgery soon and I'm so so so scared
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.
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.
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 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?
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
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.
My brother has a tumor in his pituitary gland. They are going through his nose. Im so worried about him!
i had MRI for brain last week. today it came negative. i am so relieved.
What was your prolactin level
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.
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 ?
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. 😢