Gamma Knife Radio Surgery for Meningioma

Posted by jmb73 @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?

@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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Hello @tarat and Welcome to Mayo Clinic Connect!

Thank you for posting your question here. One of the best advantages in our community is that we are able to learn from others posts, comments and conversations. Right now we don’t have any community members here discussing your type of schwannoma. However, when we do have that new member join that is looking for someone with a hypoglossal schwannoma diagnosis, I will be sure to connect them with you.

@tarat, if you don’t mind sharing, what symptoms were you experiencing when you consulted your physician? How have you been managing symptoms and diagnosis thus far?

Here is a link to make an appointment with one of our Head and Neck ENT surgeons. This appointment link will be a good place for you to call and inquire about surgeon specialties.
http://mayocl.in/1mtmR63 Please keep us updated with how you are doing!

Liked by jcciam2000

Hello @jmb73. I would like to start by inviting some members who have talked about having a meningioma. Please meet @pranas, @robinem, @lindajean, @wkindel. I would also like to invite @nancye3 to this conversation as she had a sibling who had gamma knife treatment for a meningioma.

@jmb73, while we wait for others to join in, if you are comfortable sharing, what are your questions about gamma knife surgery?

Luky06.So if you want more information i may not be able to answer your guestion because This issus is very hard.

@JustinMcClanahan

Hello @jmb73. I would like to start by inviting some members who have talked about having a meningioma. Please meet @pranas, @robinem, @lindajean, @wkindel. I would also like to invite @nancye3 to this conversation as she had a sibling who had gamma knife treatment for a meningioma.

@jmb73, while we wait for others to join in, if you are comfortable sharing, what are your questions about gamma knife surgery?

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Does gamma knife surgery work, will you get more meningiomas, what are the side effects and what is the life expectency? Thanks

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

@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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Hi Jill, I am glad to hear that the procedure worked! What type of antibacterial shampoo did you use the night before? Also, did you wear a head cover/hat on your way into the hospital? I will be having medicine to relax me in the MRI but have been told that I won't need it for the actual Gamma procedure. However, I am very claustaphobic. Is your head fully in the Gamma machine? I will have the helmet and another head covering that the nurse said resembles a Darth vada mask. Did you have both? The radiologist said he wants to see me 8 weeks later and at 3 months I will have another MRI. How big were your meningiomas? Thank you for your help.
Joan

Hi Joan, I don't think I was told to use any kind of special shampoo the night before and I didn't cover my hair going to the hospital. My husband and I were staying in a hotel directly across the street from the hospital and we just walked to it the morning of the procedure. I had to be there at 5am and we were there until around 7pm in the evening. Four other patients were having gamma knife the same day and I was the last one to get in the machine. Because of the unusual shape of one of my tumors, I had to be in the machine for about 2 1/2 hours. When it was all over that evening, other than a headache, I felt fine so we just walked back to the hotel. I am very claustrophobic also. I have found when I have an mri, it is extremely helpful when they put a mirror above my head that is angled so you can see out through the end of the machine where your feet are. The mri I had the morning of gamma knife was only about 15 minutes. It was much faster than the usual brain mri. One of the first things the nurse did when I got there was give me a very mild sedative. It did not make me feel sleepy at all but maybe a little more relaxed. I did not wear the mask; just a head frame that was attached with 4 tiny pins. Two in my forehead and 2 in the back of my head. They gave me an injection first in each pin site to numb my head that was uncomfortable but the discomfort literally only lasted a few seconds. The numbing starts right away so then I didn't feel them putting the frame on at all. It fit very tight, so it just felt tight and like pressure on my head throughout the day. I did not feel claustrophobic in the gamma knife machine, even though I couldn't move my head because the frame on your head is attached to the machine. The gamma knife machine is taller than an mri machine and other than the frame on my head, there was nothing over my face so I didn't feel closed in. Actually, I remember just feeling bored because I had to lie there wide awake for 2 1/2 hours. When you are in the machine, you don't feel anything at all and it's very quiet. There is no clanging that you hear when having an mri. They played music but it still seemed like a long time and I couldn't tell how much time had gone by. If I ever need gamma knife again for such a long time, I will ask to be sedated so I can doze during it. My first meningioma in 2001 was rather large. It was 5 cm which is about the size of a small orange. The two tumors I had gamma knife on were small. One was fairly round, about 8mm. The left one was very elongated, not round, 5.5 x 10 x 11mm. It went from behind my eye to behind the top of my nose.
Please feel free to respond if you have more questions. If not, please let me know how you are doing after you have the procedure. My Best, Jill

@JustinMcClanahan

Hello @jmb73. I would like to start by inviting some members who have talked about having a meningioma. Please meet @pranas, @robinem, @lindajean, @wkindel. I would also like to invite @nancye3 to this conversation as she had a sibling who had gamma knife treatment for a meningioma.

@jmb73, while we wait for others to join in, if you are comfortable sharing, what are your questions about gamma knife surgery?

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Hi Justin, I am nancye3's sister. I had gamma knife treatment in Aug 2017 so I responded directly to jmb73. Jill

@jill333

Hi Joan, I don't think I was told to use any kind of special shampoo the night before and I didn't cover my hair going to the hospital. My husband and I were staying in a hotel directly across the street from the hospital and we just walked to it the morning of the procedure. I had to be there at 5am and we were there until around 7pm in the evening. Four other patients were having gamma knife the same day and I was the last one to get in the machine. Because of the unusual shape of one of my tumors, I had to be in the machine for about 2 1/2 hours. When it was all over that evening, other than a headache, I felt fine so we just walked back to the hotel. I am very claustrophobic also. I have found when I have an mri, it is extremely helpful when they put a mirror above my head that is angled so you can see out through the end of the machine where your feet are. The mri I had the morning of gamma knife was only about 15 minutes. It was much faster than the usual brain mri. One of the first things the nurse did when I got there was give me a very mild sedative. It did not make me feel sleepy at all but maybe a little more relaxed. I did not wear the mask; just a head frame that was attached with 4 tiny pins. Two in my forehead and 2 in the back of my head. They gave me an injection first in each pin site to numb my head that was uncomfortable but the discomfort literally only lasted a few seconds. The numbing starts right away so then I didn't feel them putting the frame on at all. It fit very tight, so it just felt tight and like pressure on my head throughout the day. I did not feel claustrophobic in the gamma knife machine, even though I couldn't move my head because the frame on your head is attached to the machine. The gamma knife machine is taller than an mri machine and other than the frame on my head, there was nothing over my face so I didn't feel closed in. Actually, I remember just feeling bored because I had to lie there wide awake for 2 1/2 hours. When you are in the machine, you don't feel anything at all and it's very quiet. There is no clanging that you hear when having an mri. They played music but it still seemed like a long time and I couldn't tell how much time had gone by. If I ever need gamma knife again for such a long time, I will ask to be sedated so I can doze during it. My first meningioma in 2001 was rather large. It was 5 cm which is about the size of a small orange. The two tumors I had gamma knife on were small. One was fairly round, about 8mm. The left one was very elongated, not round, 5.5 x 10 x 11mm. It went from behind my eye to behind the top of my nose.
Please feel free to respond if you have more questions. If not, please let me know how you are doing after you have the procedure. My Best, Jill

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Hi Jill, Thank you for explaining what happened during your Gamma surgery. It makes me feel calmer knowing exactly what is done. It sounds like a procedure that I will be able to handle. I have asked for sedation during the gamma procedure but the nurse said I probably won't be able to have anything. Knowing you are claustrophobic too and was able to handle the gamma machine really helps me. My meningioma is 2cm and has a tail but I don't know exactly how long. I saw my cardiologist yesterday and he is surprised that I am to take my blood thinner- eloquis the morning of the procedure. I am newly diagnosed with AFIB. Did you have much bleeding at the sites of the pins? I have a low IgG and IgM-low immune- system and they will be giving me antibiotics. I guess because of the pins. I see my lung Dr. today and will ask him about sedation as I have sleep apnea and I won't have my CPAC. I probably shouldn't worry but anything with the brain is scary. The nurse is supposed to call today to review the procedure but hearing from someone who has been through it, really helps. Thank you so much.

Hi Joan, I did not have much bleeding at all. Right after they took me out of the gamma machine, the nurses took the head frame off and wrapped a bandage around my head. I was told to wear the bandage for a few hours. When I took it off, there was no bleeding. The next morning, I saw a small spot of blood on my pillow. I called Dr. Burns' nurse and she told my husband to look at the pin sites behind my head to see if they were closed up. They both were closed up and no bleeding, so she said it was fine. She said probably from moving around in my sleep made one of the pin sites bleed a little. My understanding is that the pins they use for the head frame have very fine points so they don't cause much bleeding. I know this is a lot for you to go through. I felt the same way. I was very anxious before I went to Mayo because I was worried Dr. Burns would say I needed another craniotomy as I had with the first tumor. When he recommended Gamma Knife, I was relieved but anxious also because of the idea of getting radiation on my brain. I have a history of seizures so I was very worried it would bring one on but Dr. Burns said there was virtually no risk of that. It's all upsetting, isn't it? I know it will all go very smoothly for you. I was amazed that other than a headache from wearing the frame all day, I felt fine afterwards. Gamma Knife is an amazing technology. I am curious. I had to wear the head frame but not a mask also. Do you know why you will also be wearing a mask? Or do you think the nurse was referring to the head frame when she called it a darth vader mask? When are you having gamma knife? Jill

Once again "thank you" for your information. I talked to the nurse yesterday and she said I will have the head frame and a mask. I said I wanted a picture and we will take a selfie! Tomorrow, I have to be at the Gamma center at 5:30. This week I had my regular appointments with my cardiologist and pulmonologist and both are interested in the procedure. My lung Dr. is concerned about the sedation as I have sleep apnea and wants me to take my medical marijuana before the gamma laser as it doesn't lower your respiration and just relaxes you. Have your tried it for your seizures? I have osteo-arthritis, being tested for RA, sciatica, fibromalagia, Sjogren's, need a hip replacement and the arthritis have caused my thumbs to collapse so my pain levels were 7-8. I have a low immune system and AFIB so I can only take Tylenol. Medical marijuana is now legal in Florida and I got approved by the state and started the CBD drops last week. My pain is now a 2! It might help you. I won't be taking my blood thinner before the procedure but the nurse said I can take it afterwards. She did say that the worse part are the injections to numb the areas where the screws are put. I like your term better-pins. I hope my meningioma is still only 2cm as my neuro Doc said they won't do the procedure if it's 3cm. I agree that it's an amazing procedure but I admit that I am worried. I will let you know how it went. Tomorrow will be an "interesting" day. Hopefully, a good day. Thanks and you have a great day!

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

@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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@tarat I’m on a similar case. Did you make any progress?

Liked by Jamie Olson

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

@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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