Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
Post Surgeory about 5 months now and I am having headaches return on a nightly basis. I'm not sure, it can be a combination of stress, depression and constant fatigue. I push myself. All of this alone can be the cause I am sure for the headaches at night.
Headaches are mild, compared to the debilitating ones I experienced pre-operation.
Here is the kicker! The headaches are centered right behind my left eye, and or migrate up to my forehead. The standard background dulling ache. Can this be caused by the remaining tumor that is still behind my left eye?
My Endocrinologist thinks I am pushing things to hard and to slow down. I am causing myself alot of stress. I try to de-stress which I think is the problem in the first place that caused me to have a tumor grow (stress).
I have yet to have a long term treatment plan, I will have that worked out for me in October after my IGF-1 levels are decreased with my Sandostatin. Last checked they were at 930. I am on 30 MG of LAR.
I am told I am a great candidate for Gamma Knife, and may need a new surgeory. Dr. Shereen in Toronto stated that my Neurosurgeon in Winnipeg who completed my surgeory, probably left out alot as "A neurosurgeon is like a computer program, if they do not do enough specialized programming in one area, then that computer will not do its best." Talk about BURN!... LOL
I'd appreciate any comments on Headaches Post Op! Thank you..
Headaches are mild, compared to the debilitating ones I experienced pre-operation.
Here is the kicker! The headaches are centered right behind my left eye, and or migrate up to my forehead. The standard background dulling ache. Can this be caused by the remaining tumor that is still behind my left eye?
My Endocrinologist thinks I am pushing things to hard and to slow down. I am causing myself alot of stress. I try to de-stress which I think is the problem in the first place that caused me to have a tumor grow (stress).
I have yet to have a long term treatment plan, I will have that worked out for me in October after my IGF-1 levels are decreased with my Sandostatin. Last checked they were at 930. I am on 30 MG of LAR.
I am told I am a great candidate for Gamma Knife, and may need a new surgeory. Dr. Shereen in Toronto stated that my Neurosurgeon in Winnipeg who completed my surgeory, probably left out alot as "A neurosurgeon is like a computer program, if they do not do enough specialized programming in one area, then that computer will not do its best." Talk about BURN!... LOL
I'd appreciate any comments on Headaches Post Op! Thank you..
I would also appreciate comments on it from others. In addition to headache I also have neorppathy which is increasing (tingling and numbness in plams and feets) and fatigue in lower exterimities.
Thanks!
Are you now living in Ontario or did your medical team in Winnipeg refer you to Dr Shareen Ezzat?
I'm not sure what you mean when you stated: "probably left out alot as "A neurosurgeon is like a computer program, if they do not do enough specialized programming in one area, then that computer will not do its best."
My Endocrinologist is Dr Ezzat, neurosurgeon Dr Zadeh. So far I have not had any headache problems but the Peripheral neuropathy is debilitating & is increasing similar to Shirish .
As for your Neuropathy issues is that tingling in the legs and fingers? I have had some of that occur, but not with frequency and not enough to cause me too much trouble. A telltale sign was my extreme carpel tunnel at work and at night trying to sleep, it was horrible. That has thankfully begun to decrease with my Sandostatin treatments.
VicMarg, I actually work with the Manitoba Government and I am back home at my parents house, on sick leave from my position until I am well enough to return.
Dr. Ezzat stated that comment about a computer program in relation to my Neurosurgeon in Winnipeg, thinking that he may not have had enough experience in dealing with Pituitary Tumors, however my Surgeon in Winnipeg was very good.
How often do you have follow ups with Dr. Ezzat VicMarg? Dr. Ezzat did not want to start with Gamma Knife right away, unlike my Neurosurgeon in Winnipeg recommended that I should. Dr. Ezzat's reasoning was that my Pituitary Gland remaining may become functional in time. He wanted to wait and see, and placed me of course on Sandostatin in July. I return to see what plan he has for me in October.
I lived in both Winnipeg & Brandon when I was a kid. Brandon was my father's hometown.
We are fortunate that we have Dr Ezzat for our endocrinologist. He is highly recommended & very knowledgeable in his field. i saw him in July & I will be seeing him again in March & will also have an MRI & blood work. My surgery was in September 2010. I am currently in remission but Hyperplasic cells in pituitary gland are being caused by an ectopic source in in a GHRH organ which hasn't been found yet.
I have both carpal & tarsal tunnel. Hands & legs are constantly tingling, burning, numb which increases at nighttime when in bed. I am subjected to massive foot & leg cramps. Used to be below the knee but now occurring in upper legs & rib cage. Have tried Lyrica but it made me too drowsy during the day & I really don't want more drugs going into my body. I have found that I can usually get to sleep with a Tylenol for night body pain. About 4 hours later, cramp(s) will screamingly awaken me. It seems to go in cycles. Sometimes I don't have any major cramping for a couple of weeks, then it hits with a vengeance for many nights.
I was on 20mg Sandostatin Lars from March 2010 to September transsphenoidal surgery. I found that the peripheral neuropathy seemed to worsen while I was on the drug & soft tissue started to shrink. Hope you have a good drug plan as that stuff is pricey!!
I, myself, would follow Dr Ezzat's advice. Maybe he could even recommend a surgeon in TO for the gamma knife procedure, if you still have to go that route. Keep everything within the same medical family.
Cheers, Vicki
I was getting similar headaches to what you describe but 6 months ago I was taken off Sandostatin (Endo thought my IGF levels were ok) and I'm not getting headaches now. Whether this is due to being off the Sandostatin or the radiotherapy I had 5 years ago I don't know. I think some of the problems I had pre surgery are coming back so I might be put back on Sandostatin.
Slainte
Jim