Recent adrenalectomy - problems with recovery
Posted , 11 users are following.
Hi...my name is Karen...
I am 3 weeks post op from adrenal surgery. - having problems with pain and not feeling well. I’m hoping to connect with other’s through this forum who might have gone through a similar experience. ..
To condense my story, after many months of symptoms and testing, I was finally diagnosed with Cushings Syndrome last February. I had a 4cm adenoma on my right adrenal gland that was producing excess cortisol. My surgery was done laparoscopically at the Mayo Clinic in Jacksonville on 3/30. I was only in the hospital a couple of nights and have been back since home Easter Sunday. The first 2 weeks were OK - I was a sore , but had pain medication, took it easy, and rested. They put me on Hydrocorisone with a taper schedule : 25mg 2 x day for 1st 2 weeks, and then 20mg 2x day for another 2 weeks , then down to 10mg, etc.
I started feeling unwell (more tired, achy and emotional) - and having more pain on my right side around to my back at about the 2 weeks ...I was out of the pain medication- which they said I should no longer need at the this point. I was feeling so poorly last week that I went to the ER on Tuesday (it was too long of a drive to go back to Mayo). They did some tests, gave me a 100 mg shot of steroids and 3 day rx for more pain medication.
This helped... and I felt a better until Friday. Once again out of pain medication. I tried to rest, take Advil , Tylenol & hot showers. By 2a.m. On Saturday, I was so miserable that I went back to the ER. They did some lab work , CT scan and everything came back “normal”. So home again with another 3 day rx of pain medication. Then last night , I took a pain pill at about 11:30 and went to bed. Woke up at 3a.m feeling awful. Pain on my side and mid-back, flushed, headache, nauseous, chills and felt very weak and lightheaded. I live by myself so this was kind of scary ... I tried to calm myself down and took another pain pill. Laid back down until 6:30-7 - when I woke up feeling even worse. I called 911 and was taken to the ER by ambulance. They gave me IV fluids , medication for nausea, more pain medication, labs and another CT scan. Once again, everything was “normal”.
I asked for another shot of cortisol since that seemed to help so much last time ...
I’m back home now and feeling better - just very tired. It is hard to tell - but it seems to me like I’m having a hard time with cortisol withdrawal ... and maybe need a slower taper ? Unfortunately the doctors at the ER know very little about Cushings or adrenal insufficiency - and could really only rule out a major problem with my organs or an infection (and treat my symptoms).
I’m calling my Endo at Mayo tomorrow to ask for some help ... I don’t think it’s normal to feel so sick - but can’t keep going to the ER every few days!!
So I guess my questions would be:
1) has anyone else experienced post op pain or problems with cortisol levels?
2) how can you tell between the difference between normal cortisol withdrawal and a “crisis”? (and what kinds of things can cause a crisis)? Thank you so much for taking the time to read my post... I didn’t mean to go on for so long!!
0 likes, 25 replies
pam41781 KD003
Posted
irene64333 KD003
Posted
Hey Karen. The same here. I had surgery on 03,/28. Almost a month ago at rwj nj. I still feel awful. They gave me 25 mg a day in four days after surgery. Honestly I thought I would not survive. My BP dropped to 80/60. Then they doubled the dose to 50 mg a day. I still feel very weak with lots of joint and muscle pain. I think its either cortisol withdrawal or side effects of hydrocortisone. I'm going to see endocrinologist this week. Can't wait to go off steroids. I think that's what make me sick. By the way I think 10 mg is too low. Physiologic dosage is between 15 and 20. You should ask endo. Please let me know . I'm really interested in your situation because I have the same. I'm 4 weeks post op. Right adrenal gland out, feeling terrible. I tapered myself to 40mg a day and feel bad anyway. So plese keep us updated.
KD003 irene64333
Posted
Oh wow - we are on the same timeline with our recoveries! I posted above that my endo has put me on a slow taper schedule. I’m back up to the 50mg day - 25 in the morning and 25 in the afternoon. I’ll stay on this for 3 more weeks and then down to 20mg 2 x day. I think it’s actually the steroid withdrawal that’s causing us to feel so tired and crummy. With Cushings, we got used to having high levels of cortisol in our bodies... now it has to slowly adjust to lower levels. I’m doing my best to take it easy now - not try to do too much. I had the follow up with my surgeon today ... he is at the Mayo Clinic in Jacksonville FL - so about a 2 1/2 hour drive each way from Orlando. Thankfully I had a good friend to take me ...I was tired but OK on the way up ... could barely keep my eyes open on the way back! Came home and took a nap - now feel like I’ve been run over by a truck ... very tired , weak and muscle aches. It is frustrating ... but just have to trust that it will get better with some more time. Take care and please keep in touch!!
Karen
vicky61456 KD003
Posted
\hi \sorry you are feeling so rough still. It is very early days and your body has suffered a major trauma. It needs time to readjust to the new levels of Cortisol. Then your Endo will be able to supplement you with what hormones you need. I have a friend who also had Cushing's and she is not allowed to take steroids, but has Growth Hormone instead. I had a Pituitary tumour and I have to take 10.5.5 Steroids a day probably for the rest of my life, which is OK by me if it helps me feel OK. Please let us what your Endo says and good luck.
KD003 vicky61456
Posted
brandy11861 KD003
Posted
It’s important for you to connect to your body (as your the only one who knows you best)
There isn’t a fine line between Thr normal “I feel terrible” and adrenal crisis. And it can be tricky.
Remember this: your an addict. You are addicted to cortisol. And withdrawals will be painful. But u less your truly going into crisis if you continually give in and up the dosing your not gonna get better, you’ll continue to be addicted.
It was the absolute hardest thing I’ve ever went through. It took some time for me to figure out and know the difference between crisis and a normal withdra l symptom.
Everyone is different in their journeys. And we all go through different obsticals. For me nausea was something I fought daily. I was SO sick and nauseous I couldn’t eat for a year! I lost all my weight plus 20 lbs within 8 mo from the constant nausea.
It does get better, but remember..:you didn’t get sick overnight and you won’t get better overnight either. It’s a journey.
Best of luck!
Traveling-Tech KD003
Posted
I am also 4 weeks post op of having a left adrenalectomy. I am sure I have had the condition for years, however within 2 months when my BP and sugar were uncontrollable and we found a new nodule growing all the parts of the puzzle where finally put together. Long story short, I was accepted to NIH in Bethesda MD. We did 9 days of testing with every test imagined done, they then went ahead and did the surgery, That was 4 weeks ago, I am on 15Mg of HC in the am and 5 in the Pm and I feel just like you. I was seeing pain mgmt even b4 this as I have very bad joint issues and have had many surgeries, now the pain is 4x as bad and we need to adjust the meds to compensate, I am so glad I fount this post and a cushing group on FB as I see there are others just like me, I hate the fact of everyone looking at me saying wow, you look so much better you must feel great and they have no clue. I hope hat my R adrenal wakes up and takes over but it also has nodules so we hope that it does not wake up and go crazy and then have to have that one removed. Everything that you describe I feel almost the same. They tell me it could be months to over a year to feel right... I feel like someone has turned down my voltage or I like to say I used to feel like a car engine doing 25 thousand rpm in neutral and now I feel like 15 thousand rpm in neutral.... I do feel a small difference but now I have no energy to do the simplist things and have no interest in the things that I loved to do along with no appetite and never know how I am going to feel the next day
I hope that you feel better soon
TT In Va
Pathan KD003
Posted
oh no! i'm so sorry to hear this!
I have adrenal tumors on both my glands and i require surgery as well. i have no idea how it will be and all i can do right now is pray for your health and send you positive energy. i really hope you feel better!
please update me on how you're feeling now