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.
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.
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!!!
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.
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.
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.
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
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.
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.
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?
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.
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?
Yes, I just had a hemangioma the size of a grapefruit removed last November. It was benign, thank goodness, but it did leave me with some deficits. Unfortunately, I still have two smaller tumors in my skull that they’re monitoring, probably for the rest of my life. My deficits are permanent hearing loss, I’ll never be able to smell or taste food again and because they left some of the large tumor in my head, I have peripheral vision loss in my right eye. My recovery was rough, I had to go PT, OT, speech therapy, etc to get back on my feet. But all in all I’m doing very well. How are you doing overall?
Yes, I just had a hemangioma the size of a grapefruit removed last November. It was benign, thank goodness, but it did leave me with some deficits. Unfortunately, I still have two smaller tumors in my skull that they’re monitoring, probably for the rest of my life. My deficits are permanent hearing loss, I’ll never be able to smell or taste food again and because they left some of the large tumor in my head, I have peripheral vision loss in my right eye. My recovery was rough, I had to go PT, OT, speech therapy, etc to get back on my feet. But all in all I’m doing very well. How are you doing overall?
My husband had two brain tumors. Removed the larger one and small one inoperable. Surgery was 9/20/25. Biopsy came back as Glioblastoma. Also discovered two liver tumors. Biopsy was inconclusive as
to type of cancer. After tumor board studies it appears to be Glioblastoma which is extremely rare for it to metastasize to liver. Has just completed 6 weeks of daily radiation on brain and daily temolozide. Next is y 90 treatment for liver. In 3 weeks a MRI on brain. He has been very positive on this and no ill effects at all. Prayers to all.
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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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1 ReactionThank 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!!!
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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1 ReactionI 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
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1 ReactionWow sorry to hear that are you on meds for the swelling? After my surgery i had no pain or soreness
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1 ReactionI 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?
buffy...how are you doing now???
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?
Yes, I just had a hemangioma the size of a grapefruit removed last November. It was benign, thank goodness, but it did leave me with some deficits. Unfortunately, I still have two smaller tumors in my skull that they’re monitoring, probably for the rest of my life. My deficits are permanent hearing loss, I’ll never be able to smell or taste food again and because they left some of the large tumor in my head, I have peripheral vision loss in my right eye. My recovery was rough, I had to go PT, OT, speech therapy, etc to get back on my feet. But all in all I’m doing very well. How are you doing overall?
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2 ReactionsMy husband had two brain tumors. Removed the larger one and small one inoperable. Surgery was 9/20/25. Biopsy came back as Glioblastoma. Also discovered two liver tumors. Biopsy was inconclusive as
to type of cancer. After tumor board studies it appears to be Glioblastoma which is extremely rare for it to metastasize to liver. Has just completed 6 weeks of daily radiation on brain and daily temolozide. Next is y 90 treatment for liver. In 3 weeks a MRI on brain. He has been very positive on this and no ill effects at all. Prayers to all.
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