Acromegaly Support Group

I put a comment on the other one and then see this one lol.Oh this conditon puts us through it so big hug Shelley I totally understand thats why its not easy on my Encros meetings hes got the emotional vs logical patient in the world in fact its making me laugh between almost clicking his dictaphone on sharply hes having more people sit in on the meetings ROFLMAO None of the options are 100 per cent but with anything they will get more advanced.

I am so very much better for having had the surgery. I would never question having had it. I really resent that I was not diagnosed sooner and did not have it sooner. I also regret that the endocrinologist I had who diagnosed me was so ingnorant she refused to treat me with octreotide or something else prior to the surgery and confessed to me later that it was because she "didn't know what to do about it." i'm completely disgusted by that because I now see someone whose office is less than a mile from hers who has informed himself about what to do and has printed the documents for me from a web site that was surely just as available to her or any other endocrinologist. At this point, 13 months post surgery, I am not cured, but I am infinitely better than I was before. I had been undiagnosed for many decades so I think my chances for a complete cure were slimmer than some others would have been. As for the risk of damages during surgery, I think you will reduce them by carefully choosing the surgeon who performs the surgery. I did that and feel with great certainty that I am more whole and more alive because of that choice since my tumor was wrapped around the carotid artery. That is also why I still have to deal with issues post-surgery because there are some remnants that have to be controlled by the drugs. Another option would be to go after them with radiation, but I do not like that option as long as I can avoid it.

There are people who have that surgery and move on and do very well afterward.

We are here for you. Best wishes and big gentle hugs,

Rose

Shelley, I responded in the other thread, but echo what Rose says. I do not regret it. Go for belt (surgery) and you can worry about braces (drugs) later on if you need it.

I feel so much better that I almost wonder why they even bothered telling me about the theoretical statistical risks! Over and done with in less than two hours, up and eating lunch an hour later. Walking circuits of the ward as soon as my lunch had gone down.

John

My surgical recovery was not as simple as John makes it sound, but I certainly didn't regret going for it. The risks from not having the surgery seem far more significant than the risks of having the surgery.

there are risks there is no denying it.....Ihad surgery..I researched carefully I checked the surgeons credentials...I took octeotride prior to surgery...I am doing much better...docs are all happy...I have gained 45 pounds which I am not happy about...not sur eif something got messed up or not but I am medication free...at this point...myunderstanding is that htere can be siginfcant side effects with long term use of any of the meds...has anyone heard of a tumor disappearing completely..without surgery... the risk of growth around the artery is concerning...in general i agree with rose and john..although we have one friend who had a very poor surgeon...everthything tells us it's the quality of the surgeon...rambling thoughts

Food for thought for anyone as they say which came first chicken or the egg lol.

Shelley I had my surgery in December 2004, when I was told I had a tumour even though my Neurosurgeon said it would more than likely be benign, I said please just get it out.
Like Rose my Dr. thought he had it all only to find out after an MRI that I had some residual tumour that was wrapped around the carotid artery, so I'm on Lanreotide injections- last September my latest MRI showed no evidence of any residual tumour so the Lanreotide must've shrunk the remainder.
I was 45 when I was diagnosed and still having Lanreotide injections they were monthly but because my levels have been normal my Endo has started me on 6 weekly, I don't regret my surgery for a minute and I had complete faith in my Neurosurgeon, in hindsight I might've been a little naive back then, but what choice do you have, you need complete confidence in your chosen team of specialists.
I don't know of the long term effects the drugs might have if any, hopefully none. follow your instinct Shelley, ask lots more questions if you still are having doubts.

I don't think we can say enough ask questions ask questions....you will know when the time is right for your journey...your smart...you've researched...you know your resources...you know your complete health .... all of us can only speak to our own journey...but it is in the sharing that we get clarity...great discussions lately..:)

Well, Shelly, just when I thought I had determined my plans... You raised a very interesting question that I had not previously considered- what, if any, are the risks of medication in the long term?! Till now, I had the impression that the majority of folks who've had the surgery end up worse than previously- with headaches and eventually, a return of the darn tumor. Now I'm going to have to question my endo. about this and weigh the risks all over again! Like a few of the responders, I also have it wrapped around the carotid, so I know going into it, there wiould be some tumor remaining (although after my 2nd/last MRI, it shrunk ever so slightly, that it was considered to have not changed at all). And of course, as we get older, surgery is less an option.
I guess I'm nearly back to square one! Hope you benefit from the surgery, if you have it.
Susan

Thanks everyone for responding, I've emailed my endo and he's agreed to see me (again) for another talk on the benefits of surgery v staying on long term medication instead of surgery.

Everytime I think of it, I just can't seem to see the benefits of surgery. My growth is located near/around my cartoid artery and both surgeons have said that the MRI's cannot show exactly it's proximity, and it really only becomes clear when they go in with the endoscope.

Maybe I'm a pessimist or just a realist, but I don't have complete confidence that they'll get all the tumour out, which seems to be the case for the vast majority with macroadenomas. I'm saying this, not because I don't have confidence in the surgeons, because I do, but having read people's cases on this site and others, it's made me realise it's just not a straight forward disease, even if they take out the ofending part, you're not guaranteed a cure, like a lot of other surgical procedures.

Having seen the surgery live on TV, I also saw how difficult it is for the surgeon, who is operating in a tiny space with limited visibility. It also showed the amount of invasiveness your pituitary gland suffers, whilst they're removing the tumour and possibly some healthy pituitary gland. Luckily the tumour is yellowy in colour so it is pretty distinction. But the surgeon said, he would always go in agressively to try to ensure complete removal.

I've found it very interesting reading the comments, but would ask, if you thought you were going to end up back on the very same drug that you're on now, would you still have surgery?

As we've been told before, the size of the tumour does not reflect the amount of GH that is produced. So if they debulk and it leaves even a small amount of tumour, which was inaccessible due to the promimity of it to the cartoid artery, the GH levels could still be in the same range as before surgery. Which would then need radiotherapy (don't even want to consider that) or be managed for the rest of your with medication.

My tumour has slightly reduced and is not invading the cavernous sinus or the optic nerves - if it is being stabilised with the Octreotide, why not just stay on it, as there's a very good chance I'd be back on it again anyway.

Does anyone agree with my way of thinking, or am I being irrational?