Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
Wow.....i guess i jinxed my outcome a little by announcing to all how well i was doing....i am back at the hospital since friday....in intensive care. Turns out i was doing better till wednesday and then started feeling bad....mostly dizziness, gas, agitation, and confused thinking; didnt sleep at all wednesday night, i kept thinking it was because of the steroids and i can just walk this stuff off....thursday was worse and thursday nite i paced the entire nite, feeling the worst dizziness i ever felt, agitation, racing thoughts, bloated feeling. Called the doctor friday no answer. Finally called the nurse and said i am coming back to the hospital........
Went to emergency friday and admitted. Diagnosis: pretty extreme sodium deficiency....scores had dropped to 120 (i later heard that i was pretty close to going into seizures!) Since then its been rough.... a cocktail of drugs, feeling awful at nite, etc, etcetera.
Well, sunday was better sodium back up to 130, symptoms improved, just overall feeling a lot better....should be out of here by tuesday evening.
I am writing this to emphasize the point that was made by all to me. This is major surgery and a lot can go wrong. You need to listen to your body and respond and get help immediately if you are not feeling
a little better each day. A lot can happen when you scrape away at the pituitary gland! It is definitely going to want to shut down for awhile!
Best wishes to all, Ledgy
Went to emergency friday and admitted. Diagnosis: pretty extreme sodium deficiency....scores had dropped to 120 (i later heard that i was pretty close to going into seizures!) Since then its been rough.... a cocktail of drugs, feeling awful at nite, etc, etcetera.
Well, sunday was better sodium back up to 130, symptoms improved, just overall feeling a lot better....should be out of here by tuesday evening.
I am writing this to emphasize the point that was made by all to me. This is major surgery and a lot can go wrong. You need to listen to your body and respond and get help immediately if you are not feeling
a little better each day. A lot can happen when you scrape away at the pituitary gland! It is definitely going to want to shut down for awhile!
Best wishes to all, Ledgy
I also had very low sodium after surgery. I have sent you private message and if you have any questionst don't hesitate to ask me.
I wish you all the best,
Harmony
US hospitals do tend to send people home quiker than here in the UK -- I recovered well so was allowed home on the Friday after an early Monday surgery. I was sent home with an emergency number at teh endocrine department to call for any queries (and had my GP happy to help out by phone too, which was nice).
Yes, this is major surgery. Do take it easy!
John
yes, it is very serious health risk. In my case was like in yours: I felt fine after surgery and then suddenly I felt realy miserable. I guess that sodium levels can change very fast. My biggest problems were nausea and that I vomited several times and I felt very sleepy and tired, weak and had bad headache. My levels were even lower then yours and I needed several infusions before sodium was in normal range again.
I had problems with sodium next five months, so I guess very frequent check-ups is best what you can do.
Take care,
Harmony
Thanks for sharing your experience and I hope you are on the road to recovery again in a hurry.
i think testing should be daily because when the sodium decides to drop it goes very quickly. I have heard that there are labs now that can give you immediate test results. I am going to find one and test mine daily for the next week and then drop off to a few times a week.
The docs think that because there is ony a 10 to 15 per cent chance of this, their approach is enough. Well, those odds mean nothing if you are going through this....trust me, it is awful and very dangerous to experience.
Best Wishes To All,
Ledgy
Once again, thanks for your thoughts and support. You and this website are all very special and amazing!
Ledgy
I hope you are feeling even better today. What you went through is so scary and not something I was told could happen after pit surgery. If I had your symptoms I wouldn't have known what was wrong. Thanks for sharing.
People do need to be aware of this - and know that pituitary surgery is a major surgery as you stated~! My endo repeated over and over that this was TRIVIAL brain surgery. Trivial. I'm shaking my head as I am typing this. At any rate, post surgery, post CSF leak, post lumbar drain, and post blood patch - I can attest that this is most certainly not trivial surgery nor an option to be taken lightly.
I believe also, as mentioned, we are discharged FAR to early after surgery. I had surgery around 10 am and was discharged about the same time the next day. I was re-admitted 1 day later for the CSF leak. I believe that if I had had rested in the hospital for several days I would have never had the CSF leak.
Thanks for listening. I'll keep you in my thoughts.
However, I can't complain about the excellent medical attention that I have received. from the Acro team
Thank you so much for sharing though. I am actually finally scheduled for surgery. I will be having it next Friday and feel the same way. My Neurosugeon has repeated that this is brain surgery and should not be taken lightly but everyone else keeps talking about that fact that since they are going through my nose it is not a big deal and I could be back to work in a week or 2.
I am glad you shared this info so atleast I have some idea what I should be looking out for.
Good luck with your surgery!!! Please have them test you daily for sodium levels and if you are at home have the lab do it STAT so it will get sent to your doctor within four hours!!!!
We will all be praying for a great outcome!!!
Ledgy