Diagnosed with a Rare Disease: My Cushing's Story Part 3 - Surgery
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- Опубліковано 21 січ 2023
- I still can't believe they didn't mention any of that to me before the surgery... CRAZY!
Hi everyone!! I missed you on this long break but I am back and ready to post consistently for 2023.
If you're new to this channel and you haven't heard of Cushing's before make sure you check out parts 1 and part 2 before watching this video!! Here's the link to part 1: • Diagnosed with a Rare ...
In this video, I'm giving the insider scope on what it's really like to go through a pituitary adenoma surgery. The surgery is minimally invasive but what happens during the hours following the surgery is wild and I wasn't expecting it at all. So I'm here to make sure my fellow cushies are ready to get that tumor out and are prepared for the events that follow.
I hope you enjoy this video and please leave comments down below with your questions, I'd love to chat (: Thank you for watching and supporting this new journey on UA-cam!
Love you all,
Alli
Follow me on Instagram: ThatsRightUpMyAlli
THANKYOU so much dear one for your sweetness and your story! I just found out high cortisol levels and they saying possible cushings! I have all the top 50 plus symptoms! I had pituitary tumor at 19; I’m now 62, but I was just told to take a pill and that’s that! So now I’m returning back to pituitary issues! Starting from the beginning again I guess! Please pray that I get cushings diagnosis and full treatment! I’m praying for all of us on this forum! Keep the faith in God! He is our hope!🥰🌻🙏
What a terrible experience. I swear it sounds like medical neglect. I am so sorry to hear this. Glad you're ok.
I definitely agree, I’m not sure how any of that happened and it was certainly not okay!! Thank you for watching 💗
@@ThatsRightUpMyAlli Alli :) what was your cortisol level before surgery with a unit of measurement? Mine is 226 µg/l. My doctor is tellg me its only slightly higher than normal. All the people my cushing Group who uderwet surgery did have lower levels.This Doctor..idk Hope to read from you. Your symptoms blew me away.
*MR OBALAR* ON UA-cam CURE ME TOTALLY ❤
I had it for about 10 years before I was diagnosed. The doctors did not believe there was anything wrong with me. It was the most difficult decade of my life. I still have PTSD. I can not handle stress at all anymore. I’m tapped out. Everyone thinks I am aloof, but it’s only because I still struggle with depression.
*MR OBALAR* ON UA-cam CURE ME TOTALLY ❤
I’m so sorry you went through all of that. Especially being in the hospital by yourself with no family support. At least they got all of the tumor and you didn’t have to have a second surgery. Hopefully, it will never com back!!💕🙏
*MR OBALAR* ON UA-cam CURE ME TOTALLY ❤
My 19yr old daughter is going through this right now! She is currently in the hospital ahead of her planned surgery. Her Cortisol levels are off the chart. We are blessed that we have moved the diagnoses and treatment phases along, but It’s been a super scary process thus far. Thank you for your videos.
I’m sorry your family is going through this right now, but I’m thankful she is being fast tracked! I pray for a quick and successful surgery, and a speedy recovery. Thank you for watching
Please keep us posted. Prayers for your daughter. My daughter is also 19 with cushings. Took YEARS to diagnose. Good luck and good health!
I was 19 when it hit. I was 30 by the time I got to surgery. The pituitary tumor was so invasive they couldn't get it all at MD Anderson. Instead I had my adrenals removed. Adrenal insufficiency wasn't a big deal until I developed stage 4 nasopharyngeal cancer. After that Adrenal crisis comes much easier and I'm constantly adjusting my dose. Good luck to your daughter.
*MR OBALAR* ON UA-cam CURE ME TOTALLY ❤
Oh my gosh!! I just found out about 1 week or so I have cushings myself. I get an mri on the 18th of April to see how big or how many tumors on my pituitary. I’m so glad I found your videos. Thanks
hey how did the MRI go 🩻
Thank you for your videos. They have helped with my experience since I had no idea I had it and just an unexpected surgery two weeks ago to remove a tumor. I can’t say I had and of the symptoms you mentioned after surgery. My dr’s biggest concern was that my kidneys were functioning normally after the tumor was removed, my sugar levels, and blood pressure.
Thank you for the information you’re so brave🙏🏻
hi, allie - for some reason i couldn’t post on your #4 video - probably my crazy computer. anyway, so here you go: i’ve gone through much of the same with different chronic illnesses. very sadly, when a woman walks through a doctor’s door, they’re sent away unsatisfied, and feel that they have to live struggling forever. so watching your videos was wonderful. to see a strong, smart woman is just life affirming. i know you’ll be an example for other young women. my very best wishes to you for a full and happy life ☀️
Hmmm, very good to know! Thanks for sharing!
Of course! Thank you for watching!!
I had same surgery on April '24. Non of the side effects that you have described happened to me. After surgery I woke up, nurse checked whether I have control of my limbs and I spent few hours on post op block. I was not given any drink, only some ice cubes suck on.
After I left post op block I spent another 4 days in hospital and was discharged. On last day they removed a big bloody tampon from my nose.
My cortisol level were also at 0, but my body did not go through shock as yours did. I guess this differs from case to case.
Yes! That happened to me as well. It was so scary. I thought I was going to die. But...in my case I ended up getting PE and DVT. So...idk🤷🏽♀️
I was told that the PE was causing me to not be able to breathe. But in any case, I ended up staying longer in the hospital than expected. I had my surgery on 11/16/21 and ended up going home on Thanksgiving day, which was 11/25/21. I really appreciate you sharing your story. Thank you ❤
Wow what a long stay, I’m glad you’re okay though thank you for sharing! 💗
First thank you so much for your videos!
How long was your hospital stay, I feel like I am finally on the path to being diagnosed I’ve had all the same symptoms you described in part 1 plus others that point to Cushing. I am the head of household and am worried this may take me out longer then needed.
Of course! I was in the hospital for three days if I can remember correctly. But my stay was extended due to my doctor being too busy to clear me. I would expect 2-3 days ! After being home I needed 3 weeks - month to really function normally. But everyone is different!! I’ve heard a lot of different recovery times so it really comes down to you and your body
But I am so happy that you’re finally getting answers! I wish you and your family the best of luck! Thank you for watching!!
I’m so sorry to hear your surgery was so hard. I had a totally different experience with my surgery which was about seven weeks ago. I was a little anxious but knew I was in great hands. I was wheeled into the operating room around noon I woke up around 330. I did not have any stents or bandages on my nose which was great ! I felt really great after the surgery like I almost thought they really didn’t do anything. I was in the hospital overnight for one night. I was dismissed the next day at noon and my husband and I walked from the hospital to our hotel. My recovery has been going pretty well I’m on prednisone. Some days are tough though because I am so stiff all my joints and muscles are just so sore I feel like I’m 105. Also the lack of energy isn’t there like it used to be. I’m anxious to hear how your recovery went ! I am still early on but from what I hear it gets better. Have a great day!
Wow what a blessing Erika that you are feeling so good! Did they give you hydrocortisone / prednisone right when you woke up from surgery??
I’ll have my recovery video up by Sunday this week, keep an eye out for it (: have a great day 💗
@@ThatsRightUpMyAlli I started with Dex. I was on that for about 2 weeks. Where was your surgery ? I was at Boston Mass General.
@@erikaalexa8979 interesting! Mine was hoag Newport Beach california
Waiting for results from my suppression test. It’s been a long journey so hopefully this will help give me some answers to continue forward.
@@lenacordes5175 I remember having a weird feeling having tests results leaning towards cushings but that meant I had a tumor, it’s strange to be happy for a tumor but I was so excited to have an answer to the chaos. I wish you all the best Lena!
Lol, i called that cortizol withdrawl 😂 it was the absolute worst part of recovery !! I was almost begging for the tumors back for a hot min just to get relief from the pain and discomfort ! Its REAL 😢😢
When did you loose waight?
Nope. Didn't happen to me. Everything went pretty smoothly. Of course I had the drop in cortisol and I was really weak. Even my PSS was uneventful, didn't even feel it. I did get a blood clot in my lungs and they gave me blood thinner. I was there for 3 weeks. 1 week prepping and 2 week after surgery. I actually snuck out and left because they wanted me to stay longer because of my high glucose. I didn't like that at all.
Is your body and face going to change now?
At which hospital did you get your surgery and please provide names of Neurosurgeon, ENT that performed your surgery. Thanks
Dr Robert Louis Neuro and Dr Kelly ENT - they work together. Hoag Hospital
i had my first surgery and it didnt happen to me but my surgery also failed to cure my cushings. so thanks for warning me at the second one
Oh no! I have definitely heard of that happening to people due to not getting all the tumor/tumors out. Is that what happened in your case?
@@ThatsRightUpMyAlli the MRI scan only showed a small tumor on top of my pituitarygland and even that one had not the pure characteristics of a acth producing tumor. But without any other lead they just went for that and hoped for the best.
Sadly it was indeed a dormant tumor. My acth and cortisol levels dropped a bit to "normal " levels (actually still above the maximum treshhold but lower than before). So we had still hope right post surgery. But i already felt a log of symptoms coming back after those days and already had a feeling it had failed. Still with hope it would have a delayed effect or something i went on waiting on the next test 3weeks later (3days ago) and indeed all levels where up again. The levels where probably just a little lower in the beginning because of the beating it got and where then even higher than post operation. Which makes me think its growing. They have seen on the MRI some residual tumor they didnt remove indeed but also about that they are not sure its the cause of the cushings.
Now they gave me 2 options
1) do immediately a second operation and let surgeons just see with cameras inside the gland if they can find something odd/tumor like without any foreknowledge where or what to look for.
2) do a PET scan that likely/maybe/probably fond the active place of the tumor and atleast give a proper location of where to look for.
Ofcourse the 2nd sounds better but...
Its not standard protocol and is purely on research basis, so not much preknowledge of how the active place should even act or look on camera or if it will even work.
And second is that i have to wait 3months after the first surgery to get only the scan done. Which means another 2 months to go from today.
I still went with the second option and my docter suggested she could atleast then provide me with meds in the meanwhile so i can preform daily tasks and even maybe become some kind of healed/cured. I see it as an heal trail version i guess.
But this will also be starting 3 weeks from now.
And thats basilcy where i am right now waiting and hoping, and ignoring the possibility that even the PET scan won't give any further help and they will have to go with random removal of tissue anyway and i have wasted 2 months.
In the meanwhile i will just keep fake smiling.
And see i can smile for real after a couple of months. (sorry for the sadness, don't really try to be a bummer)
Hope everyone the best who has this and may you all be cured With a fast recovery.
@@cosmicmutant33 I'm so sorry your first surgery wasn't a success, but from what I heard removing the residual tumor should lead to a cure! I would be hopeful for the PET scan and a second surgery. I know it sucks waiting but keep fighting! I'll be praying for a successful surgery for you. Keep me updated! I am sure it is helpful for people reading the comments as well.
So you had your entire pituitary gland removed? Not just the tumor?
No I just had the tumor removed!
How high was your Cortisol level before surgery. Hormone levels before surgery and after surgery.
Urine test was in the 450 range which is pretty high considering 50 is normal. Cortisol levels after surgery were low initially when my gland wasn't functioning but are now normal after being off meds. It took about 3 months for my pituitary gland to start functioning again
@@ThatsRightUpMyAllido you feel back to normal now? Or have any symptoms come back? I keep hearing about people who feel “normal” for a few months but then the symptoms all come back
They don't tell all these post operation effects because people get scared and choose NOT to undergo surgery.
This sucks can because you were not very well taken care of and I hate that these doctors and nurses didn’t educate you on what the symptoms are, and what you would have to deal with, that’s neglect on their part I think
Why wouldn’t they give you an IV so they could easily draw your blood instead of constantly stabbing you? 🥲😅😅😅 So sorry this all happened to you!