Hi: You mentioned what your endo said, but have you consulted with the neurosurgeon? The initial news can be quite overwhelming and I would advise you to have more than one opinion. There are so many variables involved when deciding on what type of procedure is warranted. I had transphenoidal performed twice and am now tumor free, but on medication due to gh levels not being lowered to the normal range. Best of luck to you! Mish

Hi Acrobully

Welcome to the site and well done for finding us here so soon after diagnosis. You are facing the same dilemma as most of us did here. You will find many postings about this subject in the history, so it may be worthwhile doing a search for them.

I had my surgery nearly 2 years ago and had the opinion of 2 top class surgeons before deciding. One did endoscopic surgery and the other microscopic - the micro surgeon was definitely the most experienced and purely specialised in pituitary tumours, the endoscopic did not have as many years experience and interestingly was trained by the micro surgeon many years previously.
The decision for me was difficult, do I go with the more experienced surgeon using the older technique, or the younger less experienced surgeon using the more modern method of surgery.
In the end I took the decision to go with the endoscopic surgeon, upon the advice of my endocrinologist and others on this site. The main difference between the 2 surgeries is pretty significant, with an endoscope the surgeon can move the scope round corners and can see much more clearly, which should hopefully give you a much better chance of success. When working in such a tiny confined space this flexibility of the scope is so important.

I am forever grateful for listening to the advice of everyoe and deciding to go with this surgeon. I am in remission and luckily do not have to take any medication to control my IGF-1 levels and am bang in the middle of the optimum range for my age. Even though there is no residual evidence of the tumor, there are some cells remaining, but luckily not raising my levels.

I have stayed in contact with this site, as I struggled to contact anyone that had been 'cured' of this disease, most especially anyone with a macro tumor. A lot of people tended to report that they'd had the surgery, but unfortunately still had to be controlled with medication afterwards.

I hope this gives you hope and my advice would be to research as much as you can, become informed and challenge things that you are not comfortable with. Research the surgeons and choose the best one that you possibly can to do your surgery, even if that means travelling to have your operation. It is good that your endo is starting you on Sandostatin before surgery, that way it will hopefully shrink your tumor and make it more accessible.

Above everything, don't rush into things, give the drugs some time to work (most shrinkage takes place within 3-6 months), during this time you can research Acro and also what surgeons are within a reasonable distance to you. You may be offered an experienced neuro surgeon, but are they experienced in pituitary surgery?

I wish you the very best of luck
Shelley

I thought about this before my surgery too. It was quite simple in the end. You are better with a surgeon who has carried out hundreds of ops the old way than with one who is inexperienced the new way. I had the microscopic surgery last year and although you do get the nose packing etc it wasnt too bad. I am now on no meds whatsoever and my levels are all normal.
Good luck whichever way you go :-)

Thnx for ur advice shelley it really helps me going forward, the surgeon tht my endo has suggested currently does 100 ops a year and uses the micro method. However i am still being drawn towards the endoscopic method, it is very early days so thankfully i have time to research more. I would be prepared to travel just about anywhere for the right person and was wondering where would i find the most experienced endoscopic surgeons?
Im assuming theres geographical differences in the type of methods used?

I asked people on the site here and was given a couple of names., |I think I read that you are in Birmingham - maybe someone here will be able to point you in the right direction.

Failing that maybe you could google neurosurgeon - Birmingham or something similar, see what you come up with and then research each one individually. You could then try to find out which method they use.

I would normally agree with Colinmac, but in my case I went for the less experienced surgeon as I felt this endoscope mehtod would hopefully give me a better outcome and luckily it did. But having said that, the surgeon I chose was still very experienced in pituitary surgery, so the decision was necessarily a really difficult one to make.

I hope you'll be able to find the right surgeon and if London was an option for you to travel to, would definitely recommend my surgeon.

Maybe the surgeon who operated on Trys woud be nearer to you, as he's also now in remission the same as me, with no medication and I know his tumor was a macro, but not sure if it was quite as large as yours.

Thanx shelley,

Im actually getting my treatment in london, i mentioned to my endo today the 2 diff types and how i was looking into them both. He was pretty dismissve and said look if he was havin this opp he would go to my same surgeon! He then followed on to say he is the most experienced surgeon in the country in pit tumours.
There wasnt much i could say to that!

Also I had my first shot of sando lar yesterday, i feel ok, can u tell me after how long the soft tissue swelling kicks in?

Sorry for the delay in responding to your question - don't feel pressurised or intimidated by your endo. I'm sure they feel that as patients we should just accept what they say and not question them. Luckily now that we have the internet, we have access to lots more information and can become well informed and take an active part in the decision making process.

I personally would recommend you carry on your with your research and go to see at least 1 surgeon for both different procedure methods.

if you are having your surgery in London and are supposedly seeing the best there is, I'm pretty confident I know who it is as I also went to see him. But I would be interested to know who it is, as these surgeons are generally well known within this community.

If you are coming in to London, I would happily recommend my surgeon as he is highly experienced and sees some very complex cases.

With regards to the soft tissue swelling, the drugs slightly reduces the soft tissue swelling to your features, not increases them. I noticed a difference mainly in my nose, lips and hands. They definitely reduced quite soon after my first injection. But the extra width of my hands and feet have not changed and still look very broad but not quite so puffy.

I hope this encourages you to carry on with your research and decide for yourself which surgeon you feel will give you the best possible chance of a cure.

One thing I was concerned about, was if I went against my endo's advice and chose and different surgeon, would it go against me afterwards and would I not receive the required after care. I needn't have worried as once I was out of hospital I saw my endo as before and he continued to monitor me in exactly the same fashion. If anything, he encouraged me to do my own research, challenge anything I didn't agree with and also make sure I get a 2nd opinion from the surgeons.

Every endo is different and I have previous experience of being treated by an endo who did not appreciate me questioning him or challenging him by my research. Had he been more approachable maybe my Acromegaly would have been picked up 5 years+ earlier, whilst I was under his care. Instead I was diagnosed 2 years afterwards by a much more junior consultant!

Hi Shelley,

Your post are very informative and thank you for that. I have recently been diagnosed with Acromegaly and planning to have my surgery in UK and would appreciate more details about your neurosurgeon.

best wishes

Just wanted to make sure people aren't getting confused by the terms. Neither endoscopic or microscopic should be more invasive than the other. Endonasal (through the nose) is less invasive and easier to recover from than sublabial (under the upper lip).

Microscopic usually involves the lip and Endoscopic the nose, endoscopic is less invasive and I would think endoscopic is more up-to-date given the endoscope is flexible and the microscope is rigid.

When my husband was diagnosed he was sent to a clinic in Toronto where he met with the endochronologist and surgeon together. They outlined all his options and let him decide the route he wanted to take.
We were never pressured and they were open to all our questions.