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New Message on Pituitary Chat

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From: PT3688041
Message 2 in Discussion

I have acromegaly. I had transspenoidal surgery in December 2004. 
Unfortunately, my tumor had grown into the cavernous sinus and they were unable 
to remove all of it. initially, they were unable to visualize the tumor on MRI 
but as my IGF-1 continued to be elevated it was obvious that  tumor cells was 
still there and active. I was unable tolerate sandostatin but controlled my 
levels with somavert. The plan was to have cyberknife when the tumor grew 
enough to be visible on the MRI and provide a target for the radiation. It 
fiinally showed up last year (NOTE: The local neuroradiologist misread the 
MRIand the tumor had actually be visible on the MRI for 6 months!!!! The 
neuroendocrinologist and neurosurgeon at the pituitary center caught the error. 
Make sure that whoever is interpreting your test results know what they are 
doing) I had cyberknife last August. My IGF-1 levels (which are a reflection of 
GH production) have been decreasing. It was my understanding that if you zap 
the tumor it will decrease production of growth hormone. This is apparently 
happening in my case. It does take time. I have been able to reduce my somavert 
from 30 mg daily to 20 mg every 3rd day so something is happening.

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