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Lump by screw from gamma knife surgery, anyone else?

Brain Tumor | Last Active: May 15, 2020 | Replies (42)

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@jmb73

Hi Jill, The PT has really helped. They are very gentle exercises. One time, my Physical therapist had to ask another PT to do some exercises with me. He told me to really pull my head over and I refused to do it. My usual PT said that I should be very careful with the exercises and if I start getting the headache, I should stop them. So if you do decide to go to PT, make sure they listen to you and you listen to your body. I had the Gamma surgery in Jan of 2019. My PC thinks the headache is from the arthritis in my neck that is pressing on the major nerve that runs up the side of my head. I still think it's weird that it is so sore right at the pin site. The CBD and THC really help with the pain. I rarely have the "smoke smells" since I started taking Gabapentin. I never got the connection until you mentioned seizures. I take it for my fibromyalgia but it's a seizure medicine.. I am supposed to have a HRCT of my lungs in May and I am thinking of postponing it. It's to check on my Interstitial lung disease. My MRI is due in June and I don't know if my neuro surgeon will let me postpone it. He has me on a strict schedule but I don't see how they can clean the machines. With my lung problems, I don't think I am a candidate for regular brain surgery. If the meningioma is growing, I want to have Gamma surgery and the tumor has to be small to do it. My neurosurgeon said it has to be less than 3cc. Mine was 2cc+. It may be that is just their limit. Do you know if other neurosurgeons can do the surgery on a larger tumor? It was great to hear from you and you be careful and stay safe too.

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Replies to "Hi Jill, The PT has really helped. They are very gentle exercises. One time, my Physical..."

Joan, If your meningiomas are too large for gamma knife, Mayo in Rochester, MN (maybe their other locations also, I don't know) also offers proton beam radiation for larger tumors. It's very focused radiation, same benefits as gamma knife and very similar risks. The main disadvantage is instead of the treatment being done in one session as with gamma, it is 5 1/2 weeks of every day except weekends but only about 15 minutes each time in the machine. You wear a tight mask they custom make for your head/face instead of using screws. You can read about it on the Mayo website. I have no idea if you are a candidate for proton beam, but worth reading about it so you can ask your doc about it if your tumors get too large for gamma.
You may have told me before, but my brain has turned to mush being home every day for a month. I did not remember that you also experienced smoky smells. What did your doc attribute them to?
Jill