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jmb73
@jmb73

Posts: 15
Joined: Jan 08, 2018

Gamma Knife Radio Surgery for Meningioma

Posted by @jmb73, Sat, Jan 5 5:14am

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?

REPLY

@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.

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.

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

@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

@tarat

Hi I have recently been diagnosed with a schwannoma on my hypoglossal nerve, I am in search for a surgeon with experience working with this nerve to preserve as much tongue function as possible after surgery, I am lost on how to find the right doctor and the best care. Most ENT surgeons I read about are more focused on thyroid tumors and other skull based procedures. no one with direct experience with the hypoglossal nerve.

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@Jamie Olson. Hello I was diagnosed with a hypoglossal Schwannoma location is the right side pushing against my brain stem. I was diagnosed September 2017 but looking back at an MRI from 2012 I believe, the neurologist who I was referred to missed it. My migraines improved with medications and then in 2017 they changed for the worse. I started experiencing difficulties with swallowing, my voice started getting hoarse, the headaches were severe with lightning bolt like pain usually sharp pain in my right eye. Finally I was sent to get an MRI in September. I discussed surgery with my neurosurgeon, I asked about Gamma Knife because the surgery just sounded too risky. The team approved and November 2, 2017 I went in for the GM procedure. I might add that a very small meningioma was also found, it is located at the top of my head. Might also add the MRI from 2012 compared to the 2017 did show enough growth that contributed to my symptoms. The neurologist from 2012 noted chiari 1 malformation, this is what he discussed with me back then, he just told me not to worry about it as they were harmless. I am a call center RN, i did a lot of case management type of nursing over the phone full time. I stayed home for 3 days after my GK procedure. I did experience some migraines right after, nausea and just generalized malaise. In early January I started experiencing swallowing issues again along with migraines, I started losing my voice and for two weeks called my Neurosurgen and was told that it could not be side effects from GK. It got worse and my voice was pretty much a whisper. At the end of two weeks I called my Neurosurgen again but it was a Saturday so the oncall doctor said it sounded like side effects from the GK and started me on a steroid dose pack. He said most likely it was inflammation from GK (on the area treated ) and instructed me to call my Neurosurgen on Monday. I did, I was told an MRI was scheduled for a few weeks later and it could not be related to GK, the even though the on call doctor had told me it was most likely that. I was miserable with the migraines and and everything else going on. I was told to not go to the ED but I need d to go to urgent care and have them check me out for strep throat….. I knew it was not that but went anyway to appease them. After a 4 hour wait in urgent care the doctor said there is nothing i can do for you. I don’t need to get a strep throat swab done because we both know you don’t have strep. Go to the ED now! I spent 3 weeks in the hospital. Found out my right vocal cord had collapsed and had video swallow study, some abnormal findings there. I was taken off all my meds I was on due to a work related back injury and failed fusion in 2010. One of those meds was Lyrica. Everything abruptly stopped, by dayb2-3 I experienced the worst pain I’ve ever felt on the right side of my face. I was diagnosed with Trigeminal neuralgia. Lyrica was treating the pain so I didn’t know I had it. By the time I left the hospital I felt like I had suffered a stroke. I exhibited the classic symptoms. Right sided weakness, droopy eye and mouth. I checked out fine for stroke but something definitely was wrong..I had no issues with ambulation when admitted. When I left I had to use a walker. I couldn’t walk unassisted. I had neuropathy both legs and feet, arms and hands. Nauseous and choking on my own saliva when I laid down to sleep. MRI showed a large area around the tumor that they believed was inflammation, from GK. Over 5 weeks on steroids did not help, 4 infusions of Avastin and the neuropathy improved everywhere but my left leg, worse on the foot and my right arm being the worst on the hand. All of these symptoms persist and actually became worse about 2 months ago. New symptoms include severe pain with a burning sensation in EVERY single joint and what feels like fibromyalgia. started experiencing hormone issues in 2016 I believe, I was started on bioidenticals. They did not help the symptoms so after a year of being on them I asked if we could stop them. Hormones were checked and they were normal, I am sure it was because I was tested right before I stopped so of course they were normal. That was put aside when I was diagnosed with the two brain tumors. Currently they are once again abnormal and I had started on Estradiol about 6 months ago rechecked a month ago and they are worse. My PCA wanted to put me back on bio identicals but i declined and stopped the Estradiol because a doctor i had spoken to mentioned a correlation between meningioma sand hormones. Which my neurologist and Radiation Oncologist did not think were the cause of new symptoms that started two months ago. Leg weakness (bilateral); knee pain, trouble swallowing has returned and extreme fatigue. I met with the Radiation oncologist to review an MRI from December 2018 and was told that the tumor was basically unchanged from the original size, maybe a mm or so smaller. The area that the other hospital I was admitted to was mostly likely tissue damage, healthy tissue. He said Radiation was not an option due to my symptoms from GK. Surgery was not, he said he didn’t think anyone would want to touch that. He took my case to their Monday morning meeting and I was called to inform me that the Neurosurgen that did the GK with the radiation oncologist wanted to discuss surgery with me. I am not sure if I want that based on risks involved and the fact the radiation oncologist agreed it was very risky and doubted any Neurosurgen would want to do it. I’ve been off work over a year, lost my job when I had to go on long term disability. My vocal cord is still collapsed but function has improved. Probably the best it will ever be according to my ENT. I can’t work due to collapsed vocal cord and all my symptoms especially the right hand pain, I cannot type for long.
I feel hopeless, I don’t know that I feel that I can trust the neurosurgeon that wants to discuss it after all the awful experiences I’ve had and ending up in the hospital for 3=weeks. I felt like they ignored my symptoms and they insulted me with the strep test instruction. I would like to know if indeed surgery would be safe. If there is anything else out there for this awful tumor. If I need to worry about the meningioma and hormones plus this chiari 1 malformation. I know this is a lot but i am feeling so lost. Thank you in advance. Juana

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!

@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!

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.

Liked by mrector

Hi I have recently been diagnosed with a schwannoma on my hypoglossal nerve, I am in search for a surgeon with experience working with this nerve to preserve as much tongue function as possible after surgery, I am lost on how to find the right doctor and the best care. Most ENT surgeons I read about are more focused on thyroid tumors and other skull based procedures. no one with direct experience with the hypoglossal nerve.

@jcciam2000

@Jamie Olson. Hello I was diagnosed with a hypoglossal Schwannoma location is the right side pushing against my brain stem. I was diagnosed September 2017 but looking back at an MRI from 2012 I believe, the neurologist who I was referred to missed it. My migraines improved with medications and then in 2017 they changed for the worse. I started experiencing difficulties with swallowing, my voice started getting hoarse, the headaches were severe with lightning bolt like pain usually sharp pain in my right eye. Finally I was sent to get an MRI in September. I discussed surgery with my neurosurgeon, I asked about Gamma Knife because the surgery just sounded too risky. The team approved and November 2, 2017 I went in for the GM procedure. I might add that a very small meningioma was also found, it is located at the top of my head. Might also add the MRI from 2012 compared to the 2017 did show enough growth that contributed to my symptoms. The neurologist from 2012 noted chiari 1 malformation, this is what he discussed with me back then, he just told me not to worry about it as they were harmless. I am a call center RN, i did a lot of case management type of nursing over the phone full time. I stayed home for 3 days after my GK procedure. I did experience some migraines right after, nausea and just generalized malaise. In early January I started experiencing swallowing issues again along with migraines, I started losing my voice and for two weeks called my Neurosurgen and was told that it could not be side effects from GK. It got worse and my voice was pretty much a whisper. At the end of two weeks I called my Neurosurgen again but it was a Saturday so the oncall doctor said it sounded like side effects from the GK and started me on a steroid dose pack. He said most likely it was inflammation from GK (on the area treated ) and instructed me to call my Neurosurgen on Monday. I did, I was told an MRI was scheduled for a few weeks later and it could not be related to GK, the even though the on call doctor had told me it was most likely that. I was miserable with the migraines and and everything else going on. I was told to not go to the ED but I need d to go to urgent care and have them check me out for strep throat….. I knew it was not that but went anyway to appease them. After a 4 hour wait in urgent care the doctor said there is nothing i can do for you. I don’t need to get a strep throat swab done because we both know you don’t have strep. Go to the ED now! I spent 3 weeks in the hospital. Found out my right vocal cord had collapsed and had video swallow study, some abnormal findings there. I was taken off all my meds I was on due to a work related back injury and failed fusion in 2010. One of those meds was Lyrica. Everything abruptly stopped, by dayb2-3 I experienced the worst pain I’ve ever felt on the right side of my face. I was diagnosed with Trigeminal neuralgia. Lyrica was treating the pain so I didn’t know I had it. By the time I left the hospital I felt like I had suffered a stroke. I exhibited the classic symptoms. Right sided weakness, droopy eye and mouth. I checked out fine for stroke but something definitely was wrong..I had no issues with ambulation when admitted. When I left I had to use a walker. I couldn’t walk unassisted. I had neuropathy both legs and feet, arms and hands. Nauseous and choking on my own saliva when I laid down to sleep. MRI showed a large area around the tumor that they believed was inflammation, from GK. Over 5 weeks on steroids did not help, 4 infusions of Avastin and the neuropathy improved everywhere but my left leg, worse on the foot and my right arm being the worst on the hand. All of these symptoms persist and actually became worse about 2 months ago. New symptoms include severe pain with a burning sensation in EVERY single joint and what feels like fibromyalgia. started experiencing hormone issues in 2016 I believe, I was started on bioidenticals. They did not help the symptoms so after a year of being on them I asked if we could stop them. Hormones were checked and they were normal, I am sure it was because I was tested right before I stopped so of course they were normal. That was put aside when I was diagnosed with the two brain tumors. Currently they are once again abnormal and I had started on Estradiol about 6 months ago rechecked a month ago and they are worse. My PCA wanted to put me back on bio identicals but i declined and stopped the Estradiol because a doctor i had spoken to mentioned a correlation between meningioma sand hormones. Which my neurologist and Radiation Oncologist did not think were the cause of new symptoms that started two months ago. Leg weakness (bilateral); knee pain, trouble swallowing has returned and extreme fatigue. I met with the Radiation oncologist to review an MRI from December 2018 and was told that the tumor was basically unchanged from the original size, maybe a mm or so smaller. The area that the other hospital I was admitted to was mostly likely tissue damage, healthy tissue. He said Radiation was not an option due to my symptoms from GK. Surgery was not, he said he didn’t think anyone would want to touch that. He took my case to their Monday morning meeting and I was called to inform me that the Neurosurgen that did the GK with the radiation oncologist wanted to discuss surgery with me. I am not sure if I want that based on risks involved and the fact the radiation oncologist agreed it was very risky and doubted any Neurosurgen would want to do it. I’ve been off work over a year, lost my job when I had to go on long term disability. My vocal cord is still collapsed but function has improved. Probably the best it will ever be according to my ENT. I can’t work due to collapsed vocal cord and all my symptoms especially the right hand pain, I cannot type for long.
I feel hopeless, I don’t know that I feel that I can trust the neurosurgeon that wants to discuss it after all the awful experiences I’ve had and ending up in the hospital for 3=weeks. I felt like they ignored my symptoms and they insulted me with the strep test instruction. I would like to know if indeed surgery would be safe. If there is anything else out there for this awful tumor. If I need to worry about the meningioma and hormones plus this chiari 1 malformation. I know this is a lot but i am feeling so lost. Thank you in advance. Juana

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@jcciam2000, wow. I'm so sorry you have been through so much in the last year. It sounds like you have been on a really tough journey. I have to say, I am not a medical professional nor am I qualified to give any medical advice. I would like to think If I had a family member going through this, I would be doing major research on surgeons that consult and operate on patients like you every day. Where are you receiving your medical care now?

First I would like to welcome you to Mayo Clinic Connect. Second, I would like to introduce you to some members who also have been through gamma knife and some who have been on a similar journey. You will notice that I moved your post to a thread where members are already discussing gamma knife and meningioma's.

How is your support system at home? Do you have family and friends to help care for you?

Hello my name is Jim I have had two surgery one through my skull and one through left ear .also last year had treatment with cyberknife and now I'm having another fight with cyberknife and just to let u know everything is going pretty good as far as effects I'm 69 and still golf and play poker here and there. So just to give you hope. Have a good day .Jim

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