I urge anyone with a single brain meningioma to research Proton Beam Radiation. One of the Mayo Clinics has that treatment. I had it in Bloomington, Indiana 6 years ago with absolutely clear followup MRI's every year since. When you research, pay attention to the Bragg Peak phenomenon - the radiation goes no further than the tumor (unlike the Cyber and Gamma Knife treatments) I am on Medicare with Anthem BC BS supplement and it was totally covered. My tumor was up against the brain stem. The linear accelerator in Bloomington was aging and that facility was closed. My husband and I refer to our time as "one of our best vacations". I felt good the entire time.
Is anyone on this site who is 5-10 years past Gamma Knife or Cyber Knife radiation for meningiomas? Does anyone know anything about Dr Al Mefty's research on long term effects of radiation
Thank You
Is anyone on this site who is 5-10 years past Gamma Knife or Cyber Knife radiation for meningiomas? Does anyone know anything about Dr Al Mefty's research on long term effects of radiation
Thank You
Hi, @nancye3 - I moved your post here to this thread where you were talking with members previously about meningioma and gamma or cyber knife so they can respond to your question about whether anyone might be 5-10 years out from this treatment. @tumorcyberknife may have information on how they are doing now and perhaps @fiddlemama can speak to years out from proton beam.
My spouse was diagnosed with a non-cancerous meningioma behind his left eye in 2018. He was having some vision issues in that eye, and a droopy eyelid. Quickly after being diagnosed he has surgery a Thomas Jefferson U/ Wills Eye in Philadelphia.... by which the team went up his nose, thru his sinus, to remove the vast majority of the tumor, followed by radiation.
All was good until mid 2023, when this tumor began growing quickly. Had a 2nd surgery, much larger and longer, left eye removed, flap from leg put in place where eye was, opened up skull, had clipped his carotid artery earlier... and removed the vast majority again of tumor. Could not follow this surgery with Radiation, due to the close proximity of critical brain areas... those mainly being brain stem and optic nerve... i think... He also had a stroke post the 2nd surgery.. which has/had left him with some deficits...over which he has made much progress... language is not back to where it was, some cognitive deficits... and some personality tweaks...along with some compulsiveness... but nothing we couldn't live with. He is 45 years old and healthy otherwise.
After this last surgery he was in NICU for 30+days... due to a fever.... they never figured that out. in patient rehab 30 days, outpatient rehab followed.
4 month post 2nd surgery MRI, all looks good and stable, 7 month after surgery MRI scan.... the tumor is growing significantly, and is expected to double in size every 3 months, and in 6 months we can anticipate symptoms to start giving him problems.
His team tells me Radiation it out, more surgery is out, we will try a VASTIN IV treatment... with what i understand it a 50/50 shot at extending his life by 6-18 month. This tumor is not acting like most meningioma's, that it is fast growing and aggressive. We had the tumor sequenced twice... the second time via CARIS, all with no hits.
I wanted to get another opinion... met with Dr's at Stamford U... so far there appears to be no solution.
Naturally I am overwhelmed, yet trying to remain as present as possible... It is difficult trying to see I we have a reasonable option which has been overlooked. I am assuming the Gamma Knife is out because it uses radiation... Im not sure about the cyber knife. And im not sure how reasonable these options are ... if they do not prevent regrowth... considering the behavior of this tumor.
To begin with, I'm not that knowledgeable about these issues. I do believe that Gamma & Cyberknife are "brand names" and both will radiate a tumor with X-rays.
I have heard of Proton Beam therapy treatments that radiates using Proton particles instead of X-rays. This treatment is suppose to stop tumor growth but, does not destroy the tumor. Also, Proton Beam therapy is suppose to cause the least amount of damage to surrounding tissue. I hope this may be of some help.
Hi Everyone, I had Gamma Knife surgery in 2019 and have had no problems. I have an MRI of my meningioma every year and now will progress to every 2 years. My neuro-surgeon is Dr. Fields here in Fl. and he is the nicest man. He calls me after the MRI to give me the results. So far the surgery worked and I had no side effects. Plus, it stopped the meningioma from growing.
Take care and have a great day,
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Thank you for sharing. This could be an option for me if mine starts to grow.
Hi...what "effects" did you experience? Thanks! I have a family member going under the gamma knife next week in Rochester.
Is anyone on this site who is 5-10 years past Gamma Knife or Cyber Knife radiation for meningiomas? Does anyone know anything about Dr Al Mefty's research on long term effects of radiation
Thank You
Hi, @nancye3 - I moved your post here to this thread where you were talking with members previously about meningioma and gamma or cyber knife so they can respond to your question about whether anyone might be 5-10 years out from this treatment. @tumorcyberknife may have information on how they are doing now and perhaps @fiddlemama can speak to years out from proton beam.
How are things going with your sister, nancye3?
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1 ReactionMy spouse was diagnosed with a non-cancerous meningioma behind his left eye in 2018. He was having some vision issues in that eye, and a droopy eyelid. Quickly after being diagnosed he has surgery a Thomas Jefferson U/ Wills Eye in Philadelphia.... by which the team went up his nose, thru his sinus, to remove the vast majority of the tumor, followed by radiation.
All was good until mid 2023, when this tumor began growing quickly. Had a 2nd surgery, much larger and longer, left eye removed, flap from leg put in place where eye was, opened up skull, had clipped his carotid artery earlier... and removed the vast majority again of tumor. Could not follow this surgery with Radiation, due to the close proximity of critical brain areas... those mainly being brain stem and optic nerve... i think... He also had a stroke post the 2nd surgery.. which has/had left him with some deficits...over which he has made much progress... language is not back to where it was, some cognitive deficits... and some personality tweaks...along with some compulsiveness... but nothing we couldn't live with. He is 45 years old and healthy otherwise.
After this last surgery he was in NICU for 30+days... due to a fever.... they never figured that out. in patient rehab 30 days, outpatient rehab followed.
4 month post 2nd surgery MRI, all looks good and stable, 7 month after surgery MRI scan.... the tumor is growing significantly, and is expected to double in size every 3 months, and in 6 months we can anticipate symptoms to start giving him problems.
His team tells me Radiation it out, more surgery is out, we will try a VASTIN IV treatment... with what i understand it a 50/50 shot at extending his life by 6-18 month. This tumor is not acting like most meningioma's, that it is fast growing and aggressive. We had the tumor sequenced twice... the second time via CARIS, all with no hits.
I wanted to get another opinion... met with Dr's at Stamford U... so far there appears to be no solution.
Naturally I am overwhelmed, yet trying to remain as present as possible... It is difficult trying to see I we have a reasonable option which has been overlooked. I am assuming the Gamma Knife is out because it uses radiation... Im not sure about the cyber knife. And im not sure how reasonable these options are ... if they do not prevent regrowth... considering the behavior of this tumor.
Thanks for your ears
mike
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2 ReactionsTo begin with, I'm not that knowledgeable about these issues. I do believe that Gamma & Cyberknife are "brand names" and both will radiate a tumor with X-rays.
I have heard of Proton Beam therapy treatments that radiates using Proton particles instead of X-rays. This treatment is suppose to stop tumor growth but, does not destroy the tumor. Also, Proton Beam therapy is suppose to cause the least amount of damage to surrounding tissue. I hope this may be of some help.
Hi Everyone, I had Gamma Knife surgery in 2019 and have had no problems. I have an MRI of my meningioma every year and now will progress to every 2 years. My neuro-surgeon is Dr. Fields here in Fl. and he is the nicest man. He calls me after the MRI to give me the results. So far the surgery worked and I had no side effects. Plus, it stopped the meningioma from growing.
Take care and have a great day,