Acromegaly waiting for transphenodial ? op

interested to see your post - I was diagnosed only 3 days ago and waiting for MRI appt. I just want to get things moving but seems that it will take a while. Hope your scan goes ahead OK and you can get a plan of treatment sorted without delay. Im not due back to see consultant till 6th August which seems a lifetime to wait.

I had my transsphenoidal surgery in March 2009, and yes it does seem like an age from diagnosis to treatment, but I lost count of the tests I had before they decided to operate. The tumour doesn't grow fast, so what appears to be a bit of a delay doesn't matter a whole lot.

The day of the op itself was not unpleasant and I was eating lunch a couple of hours after coming out of the operating theatre.

Check out the pituitarychat website for loads of info on this.

John

[u:4b85f50b72][b:4b85f50b72]Life after the operation[/b:4b85f50b72][/u:4b85f50b72]

I thought I would log on to see if I can add some experience to this thread. I was diagnosed with acromegaly in 2001 and had my operation to remove the tumour in 2002. The operation went well, but because my tumour was so close to the corroted artery it was not completely removed. This is fairly common and is the main reason that most post operation acromegalics are persuaded to undergo radiotherapy treatment. As my operation was a few years ago I have had to live with the consequences for a good few years now. I would be very interested to hear from other long term acromegalics to see if they have the same experience.

I felt good after the operation, I had suffered 2 years of bad headaches and eye pain as the tumour had grown upwards and was pressing on my optic nerves. So after the operation I was elated, so relieved of my symptoms and relieved that the tumour was gone. It may be different now, but radiotherapy was almost a definite secondary procedure, just to make sure the tumour would not regrow and my issue is with the radiotherapy. The pituitry gland seems to control so much of us and our bodily functions. I would definitely NOT take the radiotherapy.

Why ? the tumour is a very long term growth, it is benign and other than effecting the hormones produced by the pituitary in acromegaly by increasing the production of growth hormone is never going to be an urgent problem. The chance of a tumour regrowing after surgery is virtually nil, and the operation is an example of perfect surgery, a hole is chiselled through the back of your nose which gives access to the underside of the pituitary gland, this has a hard cup like structure which is punctured and the flacid tumour is removed, the gland tissue is much more rigid than the tumour and is usually left untroubled by the operation.

The chance of after effects after this operation is usually small as your pituitary gland returns to its normal function within a year.

However, in contrast to the precision of the operation , the radiotherapy is a blunt blunderbuss of a tool, 3 rays of radiation are targeted at the pituitary, each ray is destructive to your brain tissue, but only upon the concentration of all three is the radiation strong enough to cause tissue destruction, which is targeted at the pituitary. It cannot be solely aimed at the remenants of the tumour, but at the whole gland, and despite the fact that the radiation is most harmful to tumour tissue, it does also affect normal tissue. In a tumour in a breast, or lungs it probably doesn't matter if there is a slight effect on surrounding tissue. But with acromegaly this is your pituitary gland, which controls testosterone (so forget a sex life afterwards) also your cortizole levels, so any subsequant problems your recovery is long and debilitating, it covers many functions of the hyperthalmus so you can't cope with stress (at all) in fact these problems multiply to a point that sometimes I wish I was back to my headaches and growing too much.

So what are your options, you could say well if my sex drive dissappears, so what, I will be alive but I have had real marital problems as my wife (despite knowing my problem) feels unloved and uncherished as I just don't have any interest. There are hormone replacements, but they don;t work. I have tried them all,testosterone patches, cream, tablets, injections, nebido seems to be the best it is a 3 monthly injection.

I felt good after the operation, but have felt tired, not just tired but really really tired all the time after the radiotherapy, it really messes up your head. Don't think that 3 rays of radiation surging through your brain every day for 6 weeks will not effect your brain. I guarantee it will, it will effect your brain, the way you think, feel, everything will never be the same.

I suppose all I am saying is that you need the operation, but think twice, thr