I had a craniotomy for a craniopharyngioma in 1992. The tumor was pretty much 100% removed but I wanted to be sure so I had radiation afterwards.
Since then (until April 2011) I was diagnosed and treated for panhypopituitarism so I had been taking DDAVP for 19 years.
In April 2011 I got really, really sick while I was traveling and I was hypervolemic (low sodium) and was holding on to water big time. Long story short the doctor suspected that (after 19 years) I was producing ADH. I thought he was crazy and I called my endocrinologist and he said when you are sick it is possible that you are and that the hypothalamus (not the pituitary - news to me) produces ADH, the pituitary stores it (also news to me). It would be nice if they told is before 19 years into the process. Just for clarification the back (anterior) of the pituitary actually comes from the hypothalamus. He also said that it is possible that my body won't produce ADH once I'm over being sick.
I left the hospital 5 days later (20 pounds lighter) praying that it was really true, that I was producing my own ADH and that it would continue once I was well again. I got up to pee about 8 times that night but it slowed as the night went on which gave me hope. Almost a year later I get up between 1 and 4 times a night, barely pee at all in the morning (presumably dehydrated and don't really start peeing much until late afternoon or evening).
I had always been "puffy faced" since the surgery (I blamed that on hydrocortisone) and gained tons of weight but apparently some of that was water and I've now settled to 208 vs. 216 which was my normal weight before I went to the hospital (I was 223 when I got into the hospital).
The interesting thing is that every time I've gotten majorly sick (the flu for example) my body has held on to water and I got into the habit of weighing myself daily to prevent getting "overloaded" (hypovolemic) sooo I wonder if I could have gotten OFF of ADH sooner?
I'm curious if anyone else has had this experience of getting off of ADH even thought they have no pituitary function at all or if you have had your body hold on to water when you get really sick which begs the question... Is your body producing ADH after all?
My son also has a craniopharyngioma and your topic caught my attention. I am a part of a few support and information groups for cranio patients on facebook. Recently this topic has been discussed and I know a few members of these groups have regained some pituitary function. Although I can't personally answer your question I thought you may be interested in going these groups and posting the question there. I'm including the direct links to 2 pages below. I feel you may be able to benefit from their experiences and knowledge. I hope you are able to find some answers.
You can call me Frank (I hope I can call you Amy). Thanks for the links I've requested to join these groups. I appreciate your concern - should be interesting. I hope your son is OK, for me the surgery was 20 years ago this month, I have to get an MRI to double check everything, I'm sure all is well. Is your son having surgery? Radiation?
Of course you can call me Amy. My son, Tyler, is 9 now and was diagnosed at the age of 6. He's had 2 transsphenoidal surgeries and 6 weeks of radiation. He has panhypopituitarism as a result. He's developed some anxiety and social issues that may or may not be tumor related. All in all he's doing great. We do 6 month MRIs and the last showed nothing that is definitely tumor. There's some tissue there which could be residual tumor, scar tissue or fat from the fat pack used during the first surgery. He finished 3rd grade yesterday with very good grades.
Have you had any complications or recurrences?
Radiation should ensure that he never has (the same kind of) tumor again. I had MAJOR anxiety for 10 years but that was because the Radiation burnt the cilia in my sinuses so I always had a stuffed nose. I freaked out when a nasty small slug sized bloody thing came out of my nose and went to an ENT doc. He said use a neti pot to rinse my nose. I use it 2 x a day (morning and night) and 4 - 6 x a day when I am sick. Silver lining is that colds go away in 4 days or so instead of 2 weeks. I had the same thing (some tissue that could be residual tumor). Another silver lining is that during the anxiety over the stuffed nose at night especially I got pretty good at calming my mind so I could sleep. Not perfect but better than if I hadn't gotten the experience. His anxiety may be other things. Don't know. Ask a lot of questions and give him security where you can. Could his anxiety be from that? Or from not being "normal". Has he had some counseling (good idea if you can afford it).
No complications aside from my body producing ADH when I'm sick. I got in habit of weighing myself daily so I didn't get hypervolemic. I take 4 hormones (was 5 before I stopped DDAVP) Hydrocortisone, Levothyroxine, Testosterone and Growth Hormone.