1. < Brain Tumor

Looking for Others with Brain Tumors

Posted by Buffy1 @buffy1, Jul 7, 2011

Brain tumors? Is there anyone out there that is dealing with a brain tumor?

Interested in more discussions like this? Go to the Brain Tumor Support Group.

PJohnson | @pjohnson | Jul 16, 2011

Yes, I have a rare benign brain tumor - a trigeminal schwannoma. Though it is not cancerous as it does not eat through good tissues/structures; it is completely filling up spaces that are supposed to be empty - Meckel's Cave, for ex. so that it can't get any bigger without causing worse trouble. I had gamma knife stereotactic radiosurgery (concentrated radiation) at Mayo in July 2008. Good news - so far no further growth! 2nd opinion at Johns Hopkins, MD; neurosurgeon & radiation oncologist concurred with Mayo doctors. I am working with Mayo neurologist to comat constant pain/headaches. Very grateful to have been able to work with best in the world and hope to have possible involution (collapsing in on itself) in not too distant future. Good luck with your situation. If you can , go to the Mayo in MN.

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6 replies
Buffy1 | @buffy1 | Jul 25, 2011
In reply to @pjohnson "Yes, I have a rare benign brain tumor - a trigeminal schwannoma. Though it is not..." + (show)
@pjohnson

Yes, I have a rare benign brain tumor - a trigeminal schwannoma. Though it is not cancerous as it does not eat through good tissues/structures; it is completely filling up spaces that are supposed to be empty - Meckel's Cave, for ex. so that it can't get any bigger without causing worse trouble. I had gamma knife stereotactic radiosurgery (concentrated radiation) at Mayo in July 2008. Good news - so far no further growth! 2nd opinion at Johns Hopkins, MD; neurosurgeon & radiation oncologist concurred with Mayo doctors. I am working with Mayo neurologist to comat constant pain/headaches. Very grateful to have been able to work with best in the world and hope to have possible involution (collapsing in on itself) in not too distant future. Good luck with your situation. If you can , go to the Mayo in MN.

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Thank you so much for responding! We have been going to Mayo for the past 6 years it is a wonderful place! who is your doctor at Mayo? we have been going since Oct. 2005!! that place is awesome!! Take career and good luck!!!

REPLY
PJohnson | @pjohnson | Jul 25, 2011
In reply to @pjohnson "Yes, I have a rare benign brain tumor - a trigeminal schwannoma. Though it is not..." + (show)
@pjohnson

Yes, I have a rare benign brain tumor - a trigeminal schwannoma. Though it is not cancerous as it does not eat through good tissues/structures; it is completely filling up spaces that are supposed to be empty - Meckel's Cave, for ex. so that it can't get any bigger without causing worse trouble. I had gamma knife stereotactic radiosurgery (concentrated radiation) at Mayo in July 2008. Good news - so far no further growth! 2nd opinion at Johns Hopkins, MD; neurosurgeon & radiation oncologist concurred with Mayo doctors. I am working with Mayo neurologist to comat constant pain/headaches. Very grateful to have been able to work with best in the world and hope to have possible involution (collapsing in on itself) in not too distant future. Good luck with your situation. If you can , go to the Mayo in MN.

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My neurologist is Dr. Fred Cutrer - he specializes in headaches. He is very wonderful. I am glad to hear you have been going there as well. It is an incredible place and I really do feel fortunate to have had the opportunity to go there.

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Dorisraye | @dorisraye | Aug 26, 2011
In reply to @pjohnson "Yes, I have a rare benign brain tumor - a trigeminal schwannoma. Though it is not..." + (show)
@pjohnson

Yes, I have a rare benign brain tumor - a trigeminal schwannoma. Though it is not cancerous as it does not eat through good tissues/structures; it is completely filling up spaces that are supposed to be empty - Meckel's Cave, for ex. so that it can't get any bigger without causing worse trouble. I had gamma knife stereotactic radiosurgery (concentrated radiation) at Mayo in July 2008. Good news - so far no further growth! 2nd opinion at Johns Hopkins, MD; neurosurgeon & radiation oncologist concurred with Mayo doctors. I am working with Mayo neurologist to comat constant pain/headaches. Very grateful to have been able to work with best in the world and hope to have possible involution (collapsing in on itself) in not too distant future. Good luck with your situation. If you can , go to the Mayo in MN.

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I had surgery at Mayo Clinic, Rochester , in Jan. of 2011, it has been seven months, and I`m still having issues with swelling and soreness in my head. Don`t know if this is normal or not, I had a check up in April, and at that time is was not unusual, but it is ongoing. I had a wonderful surgeon Dr. Lanzino, and feel so fortune to have been able to go to Mayo for the surgery. Thanks, in advance for any feedback.
Dorisraye

REPLY
MomofThree | @momofthree | Nov 8, 2011
In reply to @pjohnson "Yes, I have a rare benign brain tumor - a trigeminal schwannoma. Though it is not..." + (show)
@pjohnson

Yes, I have a rare benign brain tumor - a trigeminal schwannoma. Though it is not cancerous as it does not eat through good tissues/structures; it is completely filling up spaces that are supposed to be empty - Meckel's Cave, for ex. so that it can't get any bigger without causing worse trouble. I had gamma knife stereotactic radiosurgery (concentrated radiation) at Mayo in July 2008. Good news - so far no further growth! 2nd opinion at Johns Hopkins, MD; neurosurgeon & radiation oncologist concurred with Mayo doctors. I am working with Mayo neurologist to comat constant pain/headaches. Very grateful to have been able to work with best in the world and hope to have possible involution (collapsing in on itself) in not too distant future. Good luck with your situation. If you can , go to the Mayo in MN.

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Wow sorry to hear that are you on meds for the swelling? After my surgery i had no pain or soreness

REPLY
kathig1 | @kathig1 | Nov 9, 2011
In reply to @pjohnson "Yes, I have a rare benign brain tumor - a trigeminal schwannoma. Though it is not..." + (show)
@pjohnson

Yes, I have a rare benign brain tumor - a trigeminal schwannoma. Though it is not cancerous as it does not eat through good tissues/structures; it is completely filling up spaces that are supposed to be empty - Meckel's Cave, for ex. so that it can't get any bigger without causing worse trouble. I had gamma knife stereotactic radiosurgery (concentrated radiation) at Mayo in July 2008. Good news - so far no further growth! 2nd opinion at Johns Hopkins, MD; neurosurgeon & radiation oncologist concurred with Mayo doctors. I am working with Mayo neurologist to comat constant pain/headaches. Very grateful to have been able to work with best in the world and hope to have possible involution (collapsing in on itself) in not too distant future. Good luck with your situation. If you can , go to the Mayo in MN.

Jump to this post

I had surgery on November 5th, 2010 and radiation for 28 days in jan 2011....I still have a little soreness on that location and am on my 3rd follow up appt. I have been told it is normal as well... did you have a tumor removed?

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kathig1 | @kathig1 | Nov 9, 2011

buffy...how are you doing now???

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jenkinsltam7 | @jenkinsltam7 | Jul 14, 2023
In reply to @pjohnson "Yes, I have a rare benign brain tumor - a trigeminal schwannoma. Though it is not..." + (show)
@pjohnson

Yes, I have a rare benign brain tumor - a trigeminal schwannoma. Though it is not cancerous as it does not eat through good tissues/structures; it is completely filling up spaces that are supposed to be empty - Meckel's Cave, for ex. so that it can't get any bigger without causing worse trouble. I had gamma knife stereotactic radiosurgery (concentrated radiation) at Mayo in July 2008. Good news - so far no further growth! 2nd opinion at Johns Hopkins, MD; neurosurgeon & radiation oncologist concurred with Mayo doctors. I am working with Mayo neurologist to comat constant pain/headaches. Very grateful to have been able to work with best in the world and hope to have possible involution (collapsing in on itself) in not too distant future. Good luck with your situation. If you can , go to the Mayo in MN.

Jump to this post

I was recently diagnosed with a benign Meckel Sheath Tumor on the right side of my brain. My Neurologist referred me to a ENT doctor, which has me in question, because I truly feel this is a Neuro matter...I have Trigeminal Neuralgia, but I'm being referred to ENT??? Would you feel as I do?

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