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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Joan, try to relax tonight. Your doctor and nurses will take it from here. All you need to do is show up! I agree with your nurse. The only pain I felt was from the numbing injections and it was very brief (just a matter of seconds per injection) because the numbing starts almost instantly. One of the nurses was holding my hand for support while the doctor was putting the frame on me. I was nervous so I was squeezing her hand so tightly I think it was worse for her than for me. Once the frame is on, it just felt tight but no pain. I'll be sending you positive thoughts and energy tomorrow.
Jill

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Hi Jill, It's over and you were so right about everything. The "darth vadar" cover for the frame was only for the MRI. I will say the MRI was very noisy and I couldn't have ear plugs. That was about 20 minutes and the Gamma machine was 32 minutes. Everyone was super nice. My radiologist wants to see me in 6 weeks to discuss any side effects-headaches, hearing loss etc. If I am fine, I don't have to see him. My neuro surgeon put the frame on and you were right as that being the most uncomfortable. I am on eloquis- a blood thinner- and I really bled when the IV was put in. The nurse said it looked like a "crime scene"! She was great and stayed with me the whole time. This dept. has a small monitor that you keep beside you on your bed while you are not in the MRI or Gamma laser machine. It keeps taking your blood pressure, heart rate, oxygen level-everything. Of course mine kept going off because of the AFIB but she got the results on her computer so I could press the button to shut it off. My neuro-surgeon spoke to me before the Gamma surgery and the tumor had only grown a little. He said it was the perfect size for this treatment. The physicist put me in the Gamma machine and attached everything. They strapped my arms down so I wouldn't touch my face. That was a little scary but the rest was just long but not as long as you had it. I have another MRI in 6 months and will meet with my neuro surgeon to review it and hopefully it will have stopped growing. He said he is hoping the laser killed it and if so it will have a black spot showing it is dying or dead. He originally said it would only kill cancerous tumors and this was benign-he thought. He said this treatment only stopped meningioma's from growing and didn't kill it. I figure I will worry about that in 6 months. Right now I am so happy it is over and so grateful to have been able to talk to someone as nice as you. Thank you again and I hope you have a healthy 2019!
Joan

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@jmb73

Hi Jill, It's over and you were so right about everything. The "darth vadar" cover for the frame was only for the MRI. I will say the MRI was very noisy and I couldn't have ear plugs. That was about 20 minutes and the Gamma machine was 32 minutes. Everyone was super nice. My radiologist wants to see me in 6 weeks to discuss any side effects-headaches, hearing loss etc. If I am fine, I don't have to see him. My neuro surgeon put the frame on and you were right as that being the most uncomfortable. I am on eloquis- a blood thinner- and I really bled when the IV was put in. The nurse said it looked like a "crime scene"! She was great and stayed with me the whole time. This dept. has a small monitor that you keep beside you on your bed while you are not in the MRI or Gamma laser machine. It keeps taking your blood pressure, heart rate, oxygen level-everything. Of course mine kept going off because of the AFIB but she got the results on her computer so I could press the button to shut it off. My neuro-surgeon spoke to me before the Gamma surgery and the tumor had only grown a little. He said it was the perfect size for this treatment. The physicist put me in the Gamma machine and attached everything. They strapped my arms down so I wouldn't touch my face. That was a little scary but the rest was just long but not as long as you had it. I have another MRI in 6 months and will meet with my neuro surgeon to review it and hopefully it will have stopped growing. He said he is hoping the laser killed it and if so it will have a black spot showing it is dying or dead. He originally said it would only kill cancerous tumors and this was benign-he thought. He said this treatment only stopped meningioma's from growing and didn't kill it. I figure I will worry about that in 6 months. Right now I am so happy it is over and so grateful to have been able to talk to someone as nice as you. Thank you again and I hope you have a healthy 2019!
Joan

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Joan, I am so happy for you that you were able to have the gamma treatment and that it's behind you now. I was out of the town for the weekend and didn't have my password with me or I would have responded sooner. I'm sorry I did not think to tell you that I had an IV for the MRI contrast. I hope you weren't taken aback when they put it in. My next mri is in August 2020 unless I experience any symptoms of another meningioma. I'm with you - I'm not going to worry about it now or even think about it until next year. I have a new problem to focus on now. I found out last week the results of a biopsy I recently had on a nodule on my thyroid. The results came back "suspicious, at risk, 50% chance of cancer'. I'm meeting with my endocrinologist tomorrow as I have a million questions. She's already told me by phone she thinks I should have all or at least part of my thyroid removed surgically. Ugh. I feel I've had enough surgery for a lifetime already. But fortunately, thyroid cancer is very treatable. Usually, a thyroidectomy is all that is needed. I'll get more info tomorrow. I hope you have a healthy and happy 2019 also! Jill

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@jill333

Joan, I am so happy for you that you were able to have the gamma treatment and that it's behind you now. I was out of the town for the weekend and didn't have my password with me or I would have responded sooner. I'm sorry I did not think to tell you that I had an IV for the MRI contrast. I hope you weren't taken aback when they put it in. My next mri is in August 2020 unless I experience any symptoms of another meningioma. I'm with you - I'm not going to worry about it now or even think about it until next year. I have a new problem to focus on now. I found out last week the results of a biopsy I recently had on a nodule on my thyroid. The results came back "suspicious, at risk, 50% chance of cancer'. I'm meeting with my endocrinologist tomorrow as I have a million questions. She's already told me by phone she thinks I should have all or at least part of my thyroid removed surgically. Ugh. I feel I've had enough surgery for a lifetime already. But fortunately, thyroid cancer is very treatable. Usually, a thyroidectomy is all that is needed. I'll get more info tomorrow. I hope you have a healthy and happy 2019 also! Jill

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Hi Jill, That's awful about the thyroid but you are right as it is very treatable. I also have a nodule in my thyroid that is being watched. My sister has been on thyroid replacement medicine for 40 years and is fine. Are we twins? Good luck with your endocrinologist. Please keep me informed.

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Hi Jill. Have you or any of the members had problems driving at night after Gamma knife surgery? I was the passenger but the glare was horrific. I had laser cataract surgery 2 years ago and have had no problems. It's only been 5 days since the surgery. It was so bad that if I was driving, I would have had to pull over. I have an appointment with the radiologist in 5 weeks.

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I've had problems driving at night because of glare for years, but it started years before I had gamma knife, so I know it is not the reason for me. Sometimes after gamma knife there is slight swelling of the brain. I was given a steroid the day I had gamma knife to help control that. I wonder if swelling could be a factor causing glare for you? Jill

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@jill333

I've had problems driving at night because of glare for years, but it started years before I had gamma knife, so I know it is not the reason for me. Sometimes after gamma knife there is slight swelling of the brain. I was given a steroid the day I had gamma knife to help control that. I wonder if swelling could be a factor causing glare for you? Jill

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My eye started swelling once the headgear was removed and they gave me a steroid IV. I will wait until the week is over and then see if it's still really bad at night. Because of my Sjogrens and low IgG, I heal much slower than a "normal" person. So it might be that. I haven't been feeling well -headache, queasy and dizzy plus really bad fatigue. I get that with Sjogrens so who knows if it's the gamma surgery or just me. Joan

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Hi , I had a very large meningioma and surgery for it in June of 2016. I suspected I had a brain tumor because I had headaches and dizziness for two years prior . My insurance at the time refused to do a CT of my brain. I ended up in the ER at the university of Iowa hospital where I had emergency surgery. It was huge and caused a midline shift in my brain of 8mm It was benign. I later discovered a resident did my surgery and apparently their was not an attending staff Dr. at my surgery. Long story short , Six months after surgery I had terrible headaches along the incision line on my head and discovered some of the screws and plates on my skull were moving. I was told nothing was wrong so I referred myself to Mayo this fall. Mayo did surgery to remove all of the plates and screws that were put on my skull. Many plates and screws that were used were loose and hanging out!!! Long story short I highly recommend Mayo. If they can do gamma knife surgery for you I would do it! It's less invasive and you would be less likely to have the issues I did! Meningioma s can come back but I believe if they are benign it's less likely !! Good luck with your upcoming surgery!

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@kkimmers007

Hi , I had a very large meningioma and surgery for it in June of 2016. I suspected I had a brain tumor because I had headaches and dizziness for two years prior . My insurance at the time refused to do a CT of my brain. I ended up in the ER at the university of Iowa hospital where I had emergency surgery. It was huge and caused a midline shift in my brain of 8mm It was benign. I later discovered a resident did my surgery and apparently their was not an attending staff Dr. at my surgery. Long story short , Six months after surgery I had terrible headaches along the incision line on my head and discovered some of the screws and plates on my skull were moving. I was told nothing was wrong so I referred myself to Mayo this fall. Mayo did surgery to remove all of the plates and screws that were put on my skull. Many plates and screws that were used were loose and hanging out!!! Long story short I highly recommend Mayo. If they can do gamma knife surgery for you I would do it! It's less invasive and you would be less likely to have the issues I did! Meningioma s can come back but I believe if they are benign it's less likely !! Good luck with your upcoming surgery!

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Also, I have Sjogrens as well. I would be interested in hearing the link between that and meningiomas ! Thank you!

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In 2009 I learned by accident that I had a large meningioma with numerous tentacles attached. Surgery was done but not all of the tentacles could be removed. In yearly MRI follow ups a smaller meningioma was found in the frontal lobe area of my brain. The new tumor appears to be very slow growing as it has not changed over the last 9 years. I do not have Sjogrens and had no symptoms prior to finding the first tumor. Had I not fallen and hit my face against a heavy cabinet I would not have known about the tumor. The surgeon told me that had I not fallen I would have likely had a stroke in the near future. I would be interested in how your gamma knife surgery goes and your recovery time. Good luck.

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