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Stereotactic Radiosurgery Surgery (Gamma or Cyberknife) for Meningioma

Posted by jmb73 @jmb73, Jan 5, 2019

I will be having Gamma Knife Radio Surgery for a meningioma that is growing. Have any of you had this procedure and does it work? I am having only minors symptoms- headache, motion sickness, dropping things, memory issues vertical double vision at night. I don't know if these are related and will go away. I have Sjogrens and my -surgeon thinks it is causing the tumor. If you have one meningioma, can you get more?

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jmb73 | @jmb73 | Apr 29, 2019
In reply to @lisalucier "Hello, @jmb73 - just wanted to let you know I moved your post to this discussion..." + (show)
@lisalucier

Hello, @jmb73 - just wanted to let you know I moved your post to this discussion in which you've participated before, so that members with whom you've discussed the meningioma previously can hear about what is currently happening and weigh in on the numbness and headaches on the opposite side of the meningioma treated by gamma knife.

Hoping that @intheyear2525 @cindyt63 @kkimmers007 @jill333 and others who've talked about meningioma and gamma knife treatment can chime in on whether they've experienced symptoms like this post-procedure.

Have you had the chance to mention these symptoms to your treating physician, @jmb73? If so, are you looking at a follow-up appointment, or what did he or she suggest?

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I had a six week follow-up with the radiologist and since the gamma surgery was on the left side, he didn't think it was related. I have my next MRI in June and then will see my neurosurgeon in July. I also see my PC in July. I just wondered if anyone else had these symptoms. It's weird.

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jmb73 | @jmb73 | May 13, 2019
In reply to @lisalucier "Hello, @jmb73 - just wanted to let you know I moved your post to this discussion..." + (show)
@lisalucier

Hello, @jmb73 - just wanted to let you know I moved your post to this discussion in which you've participated before, so that members with whom you've discussed the meningioma previously can hear about what is currently happening and weigh in on the numbness and headaches on the opposite side of the meningioma treated by gamma knife.

Hoping that @intheyear2525 @cindyt63 @kkimmers007 @jill333 and others who've talked about meningioma and gamma knife treatment can chime in on whether they've experienced symptoms like this post-procedure.

Have you had the chance to mention these symptoms to your treating physician, @jmb73? If so, are you looking at a follow-up appointment, or what did he or she suggest?

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I called the neuro-surgeon because I had numbness now on the left side of my face and my heart rate was 104 most of the time. It fluctuates. The PA called back and said it wasn't related to the brain. She said to call my cardiologist. I got an appointment with the PA and she felt the heart rate was my AFIB but since I am on Eloquis she said the numbness was the brain. I told her that I get very weak after eating and feel like I am going to pass out. She said they were AFIB attacks. She doubled my metopropol and it made me feel awful. My heart rate is now in the 50's and 60's but I am very dizzy which the cardiologist thinks is related to my tumor. It seems like cardiology and neurology don't agree on anything. I am going to put up with everything for a few more weeks and then have my MRI. If anyone has any ideas, I would really appreciate it.

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nanatessie | @nanatessie | Aug 13, 2020
In reply to @jill333 "Hi jmb73, I had gamma knife surgery in Aug 2017 at Mayo in Rochester, MN. I..." + (show)
@jill333

Hi jmb73, I had gamma knife surgery in Aug 2017 at Mayo in Rochester, MN. I had 2 recurrent meningioma tumors from one that I originally had in 2001. I had the original one in 2001 removed surgically by a neurosurgeon in Atlanta, which is where I live. When I had an mri in June 2017 due to vertigo, it showed that I had 2 meningiomas, both were much smaller than my original one. I went to Mayo clinic and met with Dr. Terry Burns (neurosurgeon). He recommended I have gamma knife radio surgery. I had it done at Mayo with Dr. Burns and Dr. Brown. Both of the 2 recurrent meningiomas were treated in one gamma knife procedure. It was done in one day as outpatient surgery. I stayed in my hotel that night and stayed in Rochester for two more days and then flew home to Atlanta with no problems. The only side effect from gamma knife that I experienced was that starting the next day, under my eyes got puffy for a few days. Dr. Burns said that is fairly common. I went back to Mayo in Aug 2018 for my one year follow up MRI and appointment with Dr. Burns. The meningiomas were stable. They had not gotten any bigger, which was the goal of gamma knife - to stop them from growing. The MRI showed they actually may have been very slightly smaller. So I consider it very successful for me and much easier and safer than traditional brain surgery. And yes, it is possible to have additional meningiomas either from recurrences or new ones. If I can answer any questions for you, let me know.
Jill

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I'm wondering is gamma knife auppoaed to make the meningioma shrink or just stop growing? I still have the same symptoms that I was having before the gamma knife-headaches, eye pain and weakness in limbs. I'm waiting to hear about my last mri on tuesday

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1 reply
jmb73 | @jmb73 | Aug 14, 2020
In reply to @nanatessie "I'm wondering is gamma knife auppoaed to make the meningioma shrink or just stop growing? I..." + (show)
@nanatessie

I'm wondering is gamma knife auppoaed to make the meningioma shrink or just stop growing? I still have the same symptoms that I was having before the gamma knife-headaches, eye pain and weakness in limbs. I'm waiting to hear about my last mri on tuesday

Jump to this post

My neuro surgeon said the gamma knife surgery is supposed to just stop the tumor from growing. My surgery was in Jan. of 2019 and so far so good. I have an MRI this month to see if it's the same size. I hope your MRI shows it hasn't grown. You should definitely talk to your doctor about your symptoms. Good luck and please let me know the results of your MRI.

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mmbaluyut | @mmbaluyut | Aug 23, 2020

Hello. Hope everybody's feeling good and hopefully better.

I had 2 surgeries to remove my brain tumor at Torrance Memorial Hospital, California. The first was in Jan 2018, followed with whole brain radiation Apr-June 2018. My 2nd surgery was last Oct 2019, I was 63 years old then. Both biopsies concluded that I have Grade II or Atypical, recurring meningioma. I had been on MRI follow up studies every 3 to 6 months since after my first surgery.

After my 2nd surgery, I saw a different neurosurgeon in San Diego for a second opinion. He recommended Cyberknife Surgery. I've been in touch with him and the Cyberknife Radiology Oncologist since Dec. 2019. I do understand the principles behind cyberknife treatment, its protocol and each step.
My latest MRI last week showed that I have a recurrence on the first resection site, and 2 new tumors, so I now have a total of 3 areas of concern rather than just one.

Since I have more than 1 tumor to remove, I am thinking that each will have to be treated separately, meaning I will have to go to the cyberknife's cycle 3 times. Can there be someone there who can confirm if my hunch is correct?

I am yet to hear from my doctors in the next 2 weeks but I need to know for personal planning. I retired late in late 2018 and had since lived in Guam (US Trust Territory in the Pacific) and will have to fly to San Diego for the treatment.

Thank you very much in advance.

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 23, 2020
In reply to @mmbaluyut "Hello. Hope everybody's feeling good and hopefully better. I had 2 surgeries to remove my brain..." + (show)
@mmbaluyut

Hello. Hope everybody's feeling good and hopefully better.

I had 2 surgeries to remove my brain tumor at Torrance Memorial Hospital, California. The first was in Jan 2018, followed with whole brain radiation Apr-June 2018. My 2nd surgery was last Oct 2019, I was 63 years old then. Both biopsies concluded that I have Grade II or Atypical, recurring meningioma. I had been on MRI follow up studies every 3 to 6 months since after my first surgery.

After my 2nd surgery, I saw a different neurosurgeon in San Diego for a second opinion. He recommended Cyberknife Surgery. I've been in touch with him and the Cyberknife Radiology Oncologist since Dec. 2019. I do understand the principles behind cyberknife treatment, its protocol and each step.
My latest MRI last week showed that I have a recurrence on the first resection site, and 2 new tumors, so I now have a total of 3 areas of concern rather than just one.

Since I have more than 1 tumor to remove, I am thinking that each will have to be treated separately, meaning I will have to go to the cyberknife's cycle 3 times. Can there be someone there who can confirm if my hunch is correct?

I am yet to hear from my doctors in the next 2 weeks but I need to know for personal planning. I retired late in late 2018 and had since lived in Guam (US Trust Territory in the Pacific) and will have to fly to San Diego for the treatment.

Thank you very much in advance.

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Hi @mmbaluyut, welcome to the Brain Tumor group. You'll notice that I moved your message to this discussion about Stereotactic Radiosurgery Surgery (Gamma or Cyberknife) for meningiomas. I did this so you can connect with other members who have had this treatment with multiple meningiomas, like @pegorr @lindajean @cindyt63 @jill333 @07ram @nancirae @jmb73 and others.

While we wait for others to respond to your question about treatment of multiple tumors with SRS, you might also wish to review these related discussions:
- multiple meningioma brain tumors https://connect.mayoclinic.org/discussion/brain-tumors/
- Multiple Meningiomas https://connect.mayoclinic.org/discussion/multiple-meningiomas/
- Meningiomas. Gamma knife or Cyber Knife. Which is more effective? https://connect.mayoclinic.org/discussion/meningeomas-gamma-knife-or-cyber-knife-which-is-more-effective/
- Stereotactic radiosurgery (SRS) for meningioma, right trigeminal nerve https://connect.mayoclinic.org/discussion/meningioma-brain-tumor-on-right-trigeminal-nerve/

Naturally, you'll want to know how long you will need to be at the hospital for treatment to properly plan your travel and accommodation. Can you not call sooner to find out the plan?

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mmbaluyut | @mmbaluyut | Aug 23, 2020

Thank you for connecting me to the appropriate group discussions. For the meantime, I will review the past discussions as you suggested.
Yes, I did reach out already to the office of my San Diego doctors last week. I even faxed them a copy of my MRI's written report. But was told to wait till the CD is received and reviewed by the doctors.

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1 reply
jmb73 | @jmb73 | Aug 24, 2020
In reply to @mmbaluyut "Thank you for connecting me to the appropriate group discussions. For the meantime, I will review..." + (show)
@mmbaluyut

Thank you for connecting me to the appropriate group discussions. For the meantime, I will review the past discussions as you suggested.
Yes, I did reach out already to the office of my San Diego doctors last week. I even faxed them a copy of my MRI's written report. But was told to wait till the CD is received and reviewed by the doctors.

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Hi when I had my gamma surgery, there was a woman in the same room who had multiple meningiomas. They were able to "zap" them all at the same time. I hope they can do the same for you. Good luck.

REPLY
1 reply
Jill333 | @jill333 | Aug 24, 2020
In reply to @mmbaluyut "Hello. Hope everybody's feeling good and hopefully better. I had 2 surgeries to remove my brain..." + (show)
@mmbaluyut

Hello. Hope everybody's feeling good and hopefully better.

I had 2 surgeries to remove my brain tumor at Torrance Memorial Hospital, California. The first was in Jan 2018, followed with whole brain radiation Apr-June 2018. My 2nd surgery was last Oct 2019, I was 63 years old then. Both biopsies concluded that I have Grade II or Atypical, recurring meningioma. I had been on MRI follow up studies every 3 to 6 months since after my first surgery.

After my 2nd surgery, I saw a different neurosurgeon in San Diego for a second opinion. He recommended Cyberknife Surgery. I've been in touch with him and the Cyberknife Radiology Oncologist since Dec. 2019. I do understand the principles behind cyberknife treatment, its protocol and each step.
My latest MRI last week showed that I have a recurrence on the first resection site, and 2 new tumors, so I now have a total of 3 areas of concern rather than just one.

Since I have more than 1 tumor to remove, I am thinking that each will have to be treated separately, meaning I will have to go to the cyberknife's cycle 3 times. Can there be someone there who can confirm if my hunch is correct?

I am yet to hear from my doctors in the next 2 weeks but I need to know for personal planning. I retired late in late 2018 and had since lived in Guam (US Trust Territory in the Pacific) and will have to fly to San Diego for the treatment.

Thank you very much in advance.

Jump to this post

I haven't had cyber knife radiation, but I had gamma knife radiation in 2017 on 2 meningiomas that were recurrences from a meningioma I had surgically removed in 2001. My original meningioma in 2001 was 5cm, about the size of a small orange. I had the surgery in Atlanta and my neurosurgeon felt he got all of it. The recurrences were actually small tails from the original tumor that were too small to be seen during the surgery.

One of the benefits of gamma knife radiation is that it can treat multiple brain tumors in one session. One of my tumors that recurred was very elongated in shape. It went from behind my eye to behind my nose. Because it was not "round" and compact like the "typical" meningioma, I was in the gamma knife machine for 2 1/2 hours. They programmed slightly overlapping spheres of radiation to treat the elongated shape and also treated the roundish shape meningioma at the same time. I have had follow up MRI's in each year since 2017. In 2018 and 2019, the recurrences were stable. They had not gotten any larger and one was a fraction smaller. I had an MRI last week in Atlanta for my 2020 annual follow up and I've sent the CD to my doctor at Mayo in Rochester and I am waiting for his evaluation.

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1 reply
mmbaluyut | @mmbaluyut | Aug 24, 2020
In reply to @jmb73 "Hi when I had my gamma surgery, there was a woman in the same room who..." + (show)
@jmb73

Hi when I had my gamma surgery, there was a woman in the same room who had multiple meningiomas. They were able to "zap" them all at the same time. I hope they can do the same for you. Good luck.

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Thank you very much for your response and very encouraging reference.
I currently live in Guam and hopefully, I will be able to schedule a Telemed with my doctors this coming Wednesday afternoon, 8/26/2020 (which will be my Thursday morning).

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