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.

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Endocrine System
/ Acromegaly Support Group

Questions to ask at appointment

Ngarcia
Ngarcia
Hi all. Finally getting to see my neuro this week. I have not had a follow up appointment since 3 months after surgery. Turns out my blood counts are high. Had MRI a couple of weeks ago, that we are going to discuss. I need your help coming up with questions to ask during my visit. I am the type of person that will sit and listen and then leave and start thinking of things I should have asked. Help! I live 4 hours away and frequent visits are not easy. Thanks to all suggestions.
J0KEYJ
J0KEYJ
Im in a team of four..the most important person in the team is myself.people can give advice but what works for one may not for another and we certainly do not follow whats in a medical persons book..I learnt from this one when my levels came back erractic..I found that my tumour had shrunk..I was the one to ask for an Mri and glad I didnt believe in the levels alone..I like to get the whole picture of how my thryoid my sugar levels..prolactin... blood pressure so one question I would ask is what time length after surgery should the pituitary gland start funtioning..is my counts high due to something else..if they say they are going for the next form of attack why have they decided on that approach.for myself they wanted to switch my drug to another..I decided after alot of thought that Im tolerating well and the worse of my unbearable symptoms were under control.so refused..for each of us we are very different.
JohnD1
JohnD1
Yes, it is useful to have an after-surgery MRI before working out further treatment. Most endocrinologists like to wait six months after surgery for your levels to settle.

Standard treatment if surgery has not treated you fully is Somatuline LAR or Sandostatin Autogel (you probably know this). I don't know where you are in the world but if cost is an issue, these are expensive (around 750 or $1000 per shot here in the UK for the middle dose). You should ask about these; seeing a nurse once a month for a shot is relatively painless. My endocrine department prefers Somatuline as it is easier to administer.

There are options beyond these two drugs if you cannot tolerate them or in the rare situation where you do not respond to them at all.

Are you seeing an endocrinologist or just a neurosurgeon? After surgery (assuming he does not want to operate again), it is usual here to be passed to an endocrinologist (and one that has had enough experience in this area).

John