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Non-functioning
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From:
![]() ![]() Tobetty2
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Hi Oldmanfore,
Thank you for your post - it was very clarifying. My friend has a macro tumour and is about to have his third surgery. Eight years ago he had vision problems leading to a transphenoidal [via the nose and then, we think, breaking into the skull] and a month later cranial surgery because they couldn't do what they wanted to do transpenhnoidaly. I didn't know him then but he says he had a very long and difficult recovery and was "crazy" at times. His surgery was done by a neurosurgeon at a large trauma hospital here in Toronto. My feeling is the neurosurgeon should have sent him to a pituitary specialist but that was not done and it is now water under the bridge. He was given a "choice" of "conservative surgery or maybe going blind" and "chose" conservative since he is an artist! He lost 50% or his pituitary function and some of his periphial vision. He has never seen the surgeon since the operation but was followed annually by an endrocrinologist [who specializes in diabetes!] and a radiooncologist [who specializes in cancer!]. In Dec/04 the radiooncolgist told him the tumour was growing at a rate of 1 mm per year. He had never been told that it was growing but learned later that it had been growing for the past 3 years! The radiooncologist wanted him to start fractionated radiation more or less immediately. My friend said "wait a minute"......... we did some research on the internet including sending his MRI to cyberknife support.org in the States. They said he should have transphenoidal surgery asap. and possibly radiation after the surgery. They don't charge to read the MRI which is a wonderful service. More research [thanks Minnie - what a gem she is!] brought us to a very well known pituitary Toronto neurosurgeon who saw my friend a week after seeing his MRI - he will do transphenoidal endscopic surgery [we aren't sure if he still has to break through the skull or not - do you happen to know? - it sounded like they could get there directly via one nostril?] in less than 8 weeks and sooner if there are problems with his eyesight. The tumour is "resting on the optic nerve". BTW he too said radiation should not be used on this tumour and certainly not before surgery.
I say all this to tell others to get second and third opinions and get them from pituitary specialists. You are right Oldmanfore - it is a bad situation but it could be so much worse.
I will be helping my friend after his surgery. If anyone has any tips re how to be helpful I will be very glad to hear them. We are hoping the surgery will be a breeze but will it? In any case we have complete confidence in the surgeon and that is the best one can do.
take care everyone,
Betty
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