Lump by screw from gamma knife surgery, anyone else?

Wow Jill, you have had quite a rough time! I love my neuro but he only deals with surgery stuff, all he other, he basically does not have time for. Our town did have a neurologist but he retired so need to find another and talk about the smoke, etc. I am seeing my neuro on the 18th so will post what he thinks Ishould do, and then post what I'm going to do:-) All my best to you. peg

Joan, thank you so much for reply. I will be seeing my neuro on the 18th so will see what he recommends, and then decide what I think is best for me:-) Wishing you all the best. peg

Hi Jill, I have found medical marijuana to help me a lot. In Florida, you have to go to a Dr. who is approved by the State. You have to bring all your medical records and he reviews them to see if you qualify for medical marijuana. It sounds like she would get approved. Here's the bad stuff- the Dr. visit is not covered by ins and the first one is $240. You have to see him/her every 7 months in order to keep your license which is renewed yearly for $80. The Dr. will write out all the CBD & THC that he/she thinks you should use. I was so lucky and when I went to a State approved dispensary, I requested a consultation as I felt the Dr. had ordered too much of THC and the doc said I should vape even though I have COPD, asthma and interstitionial lung disease. The 23 yr old consult had been on medical marijuana for 8 years- it's only been legal for 1 year! He really knew his stuff and said to "go low and slow". So I took his advice and it has been wonderful. I take .5cc of CBD that has a very small amount of THC in it. The doc had said to take 20cc of CBD & THC! I would not have been able to function. I take my dose as needed which is daily. It does not make me high and takes the pain away. The neurosurgeon who did my gamma surgery told me to bring it with me to the surgery. I had just started on it and the nurse said you cannot "OD on CBD". I took it before the gamma surgery as my lung doc said I couldn't take versed to relax while in the machine. It relaxed me and I even dozed off! Then when they took the helmet off, they had me take 2cc of it to take away the nausea and headache and it did! It takes about 20 minutes to start feeling the effects so if I am having a really painful day, I will take .5cc every 4 hours or earlier if necessary. I have never taken "drugs/pot" in my life but it has made my life so much better. My husband has really bad neuropathy in his feet and nothing has worked so I convinced him to try my CBD and he takes .3cc at night and sleeps pain free. I am his supplier!!! I really think it's worth trying. If medical marijuana isn't legal in Georgia, my niece uses Charlottes Web which you can purchase on line. She uses the capsules and says it works. My "consult James" said the small amount of THC makes the CBD work better. Yesterday, I had PT for my head and back and I took CBD at 8am, 12pm & 3 pm and other than tired, I had only mild pain. She said I would have pain has she massaged/dug into my back and shoulder and it hurt. She is trying to get some blood flowing in those areas. Of course my fibro was flaring and with storms coming tonight, I would have been unable to do anything and would have been in really bad pain. It costs $90 for 600cc's and that will last me about 6 weeks. I have had some days when I don't need it and I have not have any withdrawal symptoms. I also have rubbed it into my arm where the fibro acts up- especially when I am on the computer. It takes the pain away. I also have degenerative discs, sciatica, spinal stenosis etc. so it should help her. I hope you sister can get it. I hope I didn't write too much and confuse you. Take care Joan

Joan, this is so helpful! Thank you for taking the time to explain in detail. I am passing this on to my sister. Take care, Jill

Hi Jill, How are you doing? My headache is back. I am hoping it's from the neck but I have been going to physical therapy for the neck and it seemed to be working. I do the exercises at home as Covid 19 has stopped me from going to PT. I would say it's from the neck or stress but I am having pain where I had the screw infection. It's very sore to the touch. It's weird . I am due for an MRI of the brain in June. With this virus I am wondering how they clean the MRI machine. I hope you are feeling better. Have you tried physical therapy for your neck?

Hi Joan,
I can't believe you're still having sensitivity where you had the screw infection; it's been quite a while, hasn't it? And I'm sorry your headaches have restarted. Do the exercises help? I didn't try PT for mine. I'm still getting sudden onset headaches but fortunately, not nearly as often. I never was able to find out what causes them. Earlier this year I started having daily phantom smells, mostly smoky smells, that didn't really exist. I completely lost my sense of smell almost 20 years ago from my original meningioma surgery so it was really a weird sensation to smell anything at all, even a smell that doesn't really exist. My neurologist was concerned it could be from partial seizures where you are completely alert, but having a focal seizure. So I had a 4 day EEG. I was hooked up to a small portable machine and had electrobes all over my head for 4 days at home. There was a button I pushed every time I had the phantom smell. The results did not indicate any seizure activity but my doctor said I still could be having very small ones. He said if I am having them that my seizure med should prevent me from having a grand mal seizure. Makes me nervous to think about it. I haven't had a grand mal seizure since 2002. The smells come and go now so hopefully they are tapering off. I'm due for my annual MRI in August but I'm worried as you are about having it with Covid still so prevalent. I think we should both ask how are the machines cleaned and what other precautions does the imaging center take. Do you want to consider postponing yours for several months?
It was so good to hear from you. Be safe.
Jill

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.

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

Hi Jill, You are so wonderful! When my neurosurgeon told me last year, that I needed surgery for my tumor, he said there were only 3 options- wait and see if it grows, regular surgery or Gamma. He didn't recommend to wait as it was growing and I opted for the Gamma. But he said he couldn't do the Gamma if it was 3cm or bigger. Now, thanks to you there is another option. Just in case I will check to see where the nearest Mayo clinic is located. I am not a good candidate for regular surgery with my low immune system and my interstitial lung disease. I hope it hasn't grown. On the "smelling smoke", the neurologist that I saw said it was nothing. I didn't like him and won't go back to him as he said to only come back when my tremors got worse and he said that would happen within 2 years. I went to him for my headache not my mild tremors. I did ask my PC about the smoke smell and she didn't know what would cause it. I really think the Gabapentin has helped as I rarely smell it now. I hope you are safe and staying home. Thanks for your help. Joan

Hi Joan, I'm trying to get some more info on cbd for my sister. She's tried 2 epidurals for her back pain, but she's still in pretty severe pain. Do you think she should see a doctor to know how much to start with or do they have knowledgeable people working at the cbd stores? When it's used in oil form, do you rub it on where your feel pain? Does it also come in pill or liquid form? Which is best? Thanks! Keep me updated after your mri. Jill