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#1
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Potentially... it looks like my pit lesion is getting out of control. My ACTH is getting high (all over 1000) and that is an indication of Nelson's syndrome. Has anyone here had radiation such as a gamma knife, photon knife or cyberknife and know the pros and cons, and the side effects?
I have run into someone before who had gamma for a prolactinoma and she has residual memory issues. I worry this and about the tissue that is "in the way" of the ray... I had a transphenoidal craniotomy (sp) before through the nose... but due to my Cushing's, I never healed well. When the ACTH hyperplasia grew back, I was declared inoperable due to the scar tissue and how badly I had healed... so I don't know what options I am going to have now. I looked but there is no section for radiation... or am I losing it already? So sorry if I posted in the wrong place. I have been posting in endocrine but not sure anyone there will know about radiation as this could apply to many types of tumors. Thank you.
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Jennifer - ACTH Secreting Corticotroph Hyperplasia (Cushing's Disease) and Prolactinoma on Pituitary, Growth Hormone Deficient, Total Thyroidectomy (hypo, Hashimoto's, various nodules), PCOS, Meniere's syndrome, Migraines, Bilateral Adrenalectomy (Addison's Disease), Myasthenia Gravis? |
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#2
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Jennifer - I'm so very sorry that you're having problems like these. I had a grade 2 oligodendroglioma removed from my left temporal lobe on Feb. 14 of this year and I'm doing fine. Just yesterday I had my 'every 3 months' MRI check-ups and they were perfect.
For help, information and support I've spent a great deal of time on the Nat'l Brain Tumor Foundation message board. http://www.braintumor.org/ Best wishes and God bless |
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#3
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Thank you. I hope you continue to do well.
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Jennifer - ACTH Secreting Corticotroph Hyperplasia (Cushing's Disease) and Prolactinoma on Pituitary, Growth Hormone Deficient, Total Thyroidectomy (hypo, Hashimoto's, various nodules), PCOS, Meniere's syndrome, Migraines, Bilateral Adrenalectomy (Addison's Disease), Myasthenia Gravis? |
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#4
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rumpled - I hope you get help and information. BOTH offer such good support.
People on the Brain Tumor Forum know and understand radiation while I don't. Also - I just remembered that you can get some gamma knife info on the epilepsy forum too. Good luck. |
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#5
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Thanks. I looked at the posts there and some some others on pituitary lesions as well. I read but have have to ask...
Thanks for the lead on the epilepsy forum, too.
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Jennifer - ACTH Secreting Corticotroph Hyperplasia (Cushing's Disease) and Prolactinoma on Pituitary, Growth Hormone Deficient, Total Thyroidectomy (hypo, Hashimoto's, various nodules), PCOS, Meniere's syndrome, Migraines, Bilateral Adrenalectomy (Addison's Disease), Myasthenia Gravis? |
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