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New Message on Pituitary Chat

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From: Acro1974
Message 1 in Discussion

  Hi. I am trying to choose between two treatment approaches for acromegaly. 
One treatment approach is staying on meds and wait. Another treatment approach 
is surgery with pituitary transposition followed by gamma knife. During the 
surgery the neurosurgeon (Dr. Couldwell) will clean tumor from the left part of 
pituitary, then transpose pituitary away from the border of the left cavernous 
sinus and stick piece of fat to keep pituitary away. 4-6 weeks later gamma 
knife radiosurgery will aim residual tumor in the area of the left cavernous 
sinus (by the way, many doctors do not see obvious invasion of the left 
cavernous sinus).    This transposition will decrease the likelihood of loosing 
pituitary function (in theory, there is no data on that). Dr. Couldwell 
originally developed pituitary transposition to save fertility in young women 
that have residual tumor in cavernous sinus. Here is the link:
http://www.aans.org/education/journal/neurosurgical/may03/14-5-11.pdf 
Currently all my hormones are normal except for low normal testosterone.   
Gamma knife doctor (Dr.Lunsford) told that in my case the likelihood of IGF-1 
normalization will be 70 %. He also quoted his statistics of 20-30 % of 
hypopituitarism. How valid this statistic is? Can hypopituitarism caused by 
radiosurgery be underreported? For example, my cortisol is 13.5 with AM 
reference range 3.4 to 26.9. If after radiosurgery my cortisol goes down to 6, 
it will still be in the normal range but it will be twice less than my personal 
normal.    Dr.Lunsford said that I don’t need surgery with pituitary 
transposition because gamma knife alone will take care of residual tumor just 
fine. He wrote regarding surgery with pituitary transposition followed by gamma 
knife: “we do not have any practical clinical experience relative to the 
therapeutic benefit of this approach, but it makes intuitive sense for some 
patients.” I wonder what he meant by this “intuitive sence”.   Dr.Lunsford also 
told that for hypopituitarism “you just take couple pills a day”. Is that so 
easy?    So here are my options:   1. Surgery with pituitary transposition 
followed by gamma knife with 70 % likelihood of IGF-1 normalisation, 30 % 
likelihood of loosing some pituitary function, and small likelihood of damage 
to the vision and some other nerves.   2. Staying on medication and waiting.    
I currently use Pegvisomant but I will probably have to switch to Sandostatin 
LAR to prevent tumor growth.    If I stay on medication and wait-what do I wait 
for? New technologies? They talk about new technologies for some time already 
without observable results. How long will I have to wait for those 
technologies? 
I have been on Pegvisomant only several months. Some of my symptoms improved, 
but fatigue, lack of concentration, sleepiness and apathy remained (some days 
are better than others).    If I stay on medication for acromegaly will I ever 
feel normal?    Can I feel normal if I develop hypopituitarism? And I don’t 
even want to think of possibility of developing hypopituitarism AND having 
residual acromegaly.   What it “better”-medically treated hypopituitarism or 
medically controlled acromegaly? 
Any ideas, suggestions?


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