questions about surgery for acromegaly

[Nance31456]

Hi, I was just diagnosed with a 6 mm HGH pituitary tumor and am being scheduled for surgery at Vanderbilt University Medical Center in Tennessee. I have been told that 3 to 4 pit surgeries are performed there per week. Am I with a good hospital for this? I have been reading everything I can get my hands on regarding my condition and am so happy I found this site. I am scared more about hormone recovery than the surgery recovery because I live in KY and have to rely on area hospitals to help with any hormone therapy. I need to know all I can because I can't trust them to get anything right. Mainly, have I chosen a good surgery site, and is recovery terrible? This is really SCARY! Thanks for any help any of you can offer me.

[rumpled]

I have met a lot of people with pituitary issues, and frankly with most of us most family and friends don't really seem to understand. It is really hard to live in a body that changes - seemingly day to day - and it is very confusing and disconcerting.

It should be, ideally, that you get diagnosed before your face and other things change much - so you don't have to live with the permanent not only changes, but the after-effects like the apnea and pain. We pit people often wish we had a wand to wave where we could give our symptoms to the doc or others and say here, ok, now do you see why I am questioning why this is taking months/years/a decade?

Hormones vary (periods, hello?) and so day to day yes, one day is better or worse than another - but oddly that is never seemingly taken into account for all the hormones but it just has to happen. We feel it!

As for upbeat... sometimes. I am just as frustrated as everyone!

[Nance31456]

You seem to be such a caring, upbeat person, and I thank you for that! I have major soft tissue issues with my neck. I have been telling docs this for years and was told it was fat. Some days I can hardly swallow. I have minor facial changes, and my eno said he would have had a hard time diagnosing me from that alone. I recently noticed a bone change in my knees and tried to tell people that something didn't look right. My knee bone sticks out on top. Some days my knees feel fine. Other days I have a hard time walking. It comes and goes. Just a few weeks ago I never knew this condition existed! No one I know knows anyone with it. No one here to talk to for that reason.  Glad there's you!

[rumpled]

I know the physical changes are wild - I used to look in a mirror and think - who is this! I reverted back a bit, but I know with your bone changes, it won't be the same with you.

Some of the issues should resolve quickly like the diabetes and high BP. The apnea may or may not depending on if it is bone or soft tissue. The joints may (or may not) be another ongoing issue - they should not get worse, but many with GH issues have the ongoing one. Hope you are one of the lucky ones!

You are not a freak - just a victim of your pituitary. There are many!

[Nance31456]

Thanks again! I am a very active 57 yr. old retired female teacher. I am worried that I will never get my hormones straightened out after this and that my quality of life will not be good. I love to walk, work with my chainsaw, work with rock building, work as a professional artist, etc. My interests are many! I have evidently had this condition for years and now when I look in the mirror and see the effects this condition has had on me physically as well, it makes me feel sorta like a freak. I am hoping my diabetes, sleep apnea, high blood pressure, painful joints will improve. I haven't been able to wear my wedding ring since I was in my early thirties. I am unusually strong for a female as well. My husband has been there for me as well as my pharmacist and registered nurse daughters.  They are awesome!

[rumpled]

Yeah it can do a lot to the joints.

Odds are even with a great surgeon, you will take thyroid - we all do. Is it 3-4/wk surgeries just for that surgeon? Then that is an experienced surgeon - you want 50 a year, 500 lifetime.

Make sure you keep up with monitoring. Sometimes, but not always, these little things come back. Also hormones change over time. So keep up with regular appointments and scans.

[Nance31456]

Thanks! I have done a lot of research on these meds.  I am lucky to have a smaller HGH tumor and don't want to chance it growing. With an experienced neurosurgeon, I have a very good chance for a full recovery. I have no headaches or eye problems. I just need to know if anyone has had experience  with Vanderbilt for this surgery.  Also, I don't know if 3 to 4 surgeries per week is good or not. I have great family support and a very good endo. I will be working with back home. I love to walk, but some days my knee joints hurt so badly, I have to take a break. My docs thought I had arthritis. Big surprise!!

[rumpled]

I have to wonder why, at this point in time, are they doing surgery first? There is now a medication to use to lower HGH and I thought (I am just a layman) that they tried the medication first, and if the medication did not work, then they went for surgery.

I have had the surgery myself, for Cushing's - and it is good to have a super experienced surgeon. I don't know about the place myself. We do have another lady from KY but I have to say her aftercare and all (you can look up her posts - brainpain is her name) seem to be sadly lacking as well as family support.

Recovery from surgery is typically not so bad - but hormonal recovery is another ball of wax - it can depend on the tumor and surgeon. Most need at least thyroid, and you may need other hormones on a temporary basis like cortisol, and others like DDAVP, and others may be lost long term after a while, or not. So you really need a good neuro-endo to make sure your levels are where they should be (which is typically not at the bottom of the ranges).

There are sites in the health pages that may also assist you.