Mayo Clinic Connect
Has anyone had either at Mayo Clinic or Johns Hopkins?
Anybody have an ogliodendroglioma?? If so could use some support!
Jump to this post
My wife’s was diffusely infused in her right frontal cortex.
To those of you who have been following my sister Jill’s journey, I have a question about Gamma Knife Radiation. Jill had all 3 tumors radiated at Mayo last Wednesday. One side of her head is still numb and she has been having headaches. She is also extremely fatigued. Has anyone else experienced these after effects and if so how long did they last.
Thanks again for all your support!
After sizeable meningioma discovered, craniotomy was performed September 2014. Pathology report came back as a Grade 2 (atypical). Since the tumor was located on the right side of my saggital sinus, it affected the left side of my body (happy to say that I’m probably 97% back to normal today) Unfortunately, MRI, January 2017, detected tumor growing back. Nueurosurgeon did not want to operate again. Recommended cyberknife treatment/surgery. Had treatment 22-25 May. Since then, I lost hair, only in the area of the treatment, but I had another seizure . Energy level is very low, bad mood changes due to seizure medication, I believe. Still haven’t recouped 100% usage of my left foot since the operation in 2014, but for the most part, I do very well. Has anyone experienced what I did? I’m still determined to “beat” this, but just curious whether this treatment improved anyone’s same condition and what symptoms did/have you experienced?
Hi Nici @tumorcyberknife,
Welcome to Connect. I moved your message to this discussion in the Brain Tumor group where members are talking about cyberknife vs gamma knife for meningiomas. Please meet @frit5 @nancye3 @fiddlemama @trudig and others. I’d also like to bring @pegorr and @lindajean into this discussion.
I think you’ll also be interested in reading these discussions as well:
– multiple meningioma brain tumors https://connect.mayoclinic.org/discussion/brain-tumors/
– Multiple Meningiomas https://connect.mayoclinic.org/discussion/multiple-meningiomas/
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.
Liked by Colleen Young, Connect Director, EES1
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
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?
Liked by Kanaaz Pereira, Connect Moderator
version 18.104.22.168.3.2Page loaded in 10.544 seconds