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Posts (22)

Fri, May 15 10:16am · Lump by screw from gamma knife surgery, anyone else? in Brain Tumor

Thank you, Joan. So helpful! Jill

Thu, May 14 2:57pm · Lump by screw from gamma knife surgery, anyone else? in Brain Tumor

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

Tue, Apr 21 9:44am · Lump by screw from gamma knife surgery, anyone else? in Brain Tumor

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?

Mon, Apr 20 4:22pm · Lump by screw from gamma knife surgery, anyone else? in Brain Tumor

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.

Thu, Feb 6 9:07am · Lump by screw from gamma knife surgery, anyone else? in Brain Tumor

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

Wed, Feb 5 9:34am · Lump by screw from gamma knife surgery, anyone else? in Brain Tumor

Hi Peg, I've had 3 craniotomies and I was more nervous for the 2nd and 3rd than I was for the 1st because I felt I was pushing my "luck". My first craniotomy was in 2001 to resect a 5 cm frontal lobe meningioma. I had it done where I live, in Altanta. My neurosurgeon felt I would be in the hospital for a few days and then recuperate at home. I ended up in the hospital for 3 weeks with fever and mind numbing headaches. Turned out that I had contracted an infection in the hospital in my cranial bone. I had another craniotomy to remove my cranial bone and then a 3rd one about 4 months later to put in a cranial plate. I've always felt so fortunate that other than losing my sense of smell and a few grand mal seizures from the meningioma, I made a complete recovery. An MRI in 2017 showed that I had two small recurrences. I had consults with two neurosurgeons in Atlanta, both with excellent reputations, but they each recommended a different treatment. That's when I self referred myself to Mayo in Rochester. The doctors I saw there were excellent and the neurosurgeon recommended gamma knife radiation. He said I could do a watch and wait but my husband and I felt more comfortable being more proactive. I've had mri's each year since then and they have not gotten any bigger, one is actually a tiny bit smaller.
Are you seeing a neurosurgeon at Mayo about what to do now? You most likely have already mentioned to your doctor about the smoky smells. Sometimes they don't mean anything at all and they just go away after some time but sometimes they are from focal seizures, tumors, chemo – all kinds of reasons for them. My neurologist felt I should have an EEG because I have a history of seizures. So there are many causes of phantom smells, but definitely worth consulting with your doctors.
I hope you will let me know your decision about your tumor. Please let me know if I can help by sharing any info about my own experiences. Best wishes, Jill

Wed, Feb 5 8:50am · Lump by screw from gamma knife surgery, anyone else? in Brain Tumor

Hi Joan, I take 900 mg of Carbatrol, which is the brand for Carbamazapine, for seizures. It has kept me seizure free since 2002, unless it turns out the phantom smells mean I'm having break-through seizures. I still won't know for sure until I get the EEG results in about a week. I also take 900 mg of Neurontin. I take it for hot flashes and to help sleep, but as you said, it used to be commonly used as a seizure drug so I feel like I'm getting a little extra protection by taking it.
I'd like to ask you about your experience with CBD, not for me, but for my sister. She has severe pain in her arm and lower back from degenerative disc, spinal stenosis and arthritis. She has tried various pain meds but they haven't helped and she is in too much pain to start PT. She wants to try CBD oil. Have you had a good experience with it? What form is it – a pill? or is it oil that you apply where it hurts? She is having a hard time finding a place in Atlanta to get it and she is a little concerned about ordering online from a place she knows nothing about. Are you able to buy it in Orlando?
Thanks. Jill

Tue, Feb 4 10:01am · Lump by screw from gamma knife surgery, anyone else? in Brain Tumor

Joan, How distressing to hear of your consult with a neurologist! Not only did he ignore your reason for the consult, but to say come back in two years? TWO YEARS?! Please don't give up on neurologists. Unfortunately, you and I know all too well at this point there are great doctors and there are definitely some not so great doctors out there. Try the doc your neurosurgeon suggested. Is he local (I have no idea where you live) or a Mayo doc? I know you want to first know the cause of your headaches – then treatment for them. When you get to the treatment, have you ever considered something like acupuncture for pain? I have no idea if it's effective for headaches, but I do believe in combining traditional western treatment with proven treatments that have been around for many years, like acupuncture.
I've been having some strange symptoms – phantom smells that smell like smoke. It's especially strange for me because I lost my sense of smell in 2001 from surgery to remove my meningioma. I literally haven't had any sense of smell for 19 years and all of a sudden in November last year I started smelling smoke off and on throughout each day. I just completed a 3 day ambulatory EEG because sometimes phantom smells mean you are having focal (partial) seizures, I have no other symptoms and I'm completely alert but it the results show focal seizures, I'll have to increase or change my seizure med. The one I'm on has kept me seizure free since 2002, so I hate the thought of making changes. I will have the results in about a week. My neurosurgeon was the first doc I contacted when the smells started and he said it wasn't from the meningiomas I had gamma knife for. My MRI's have been stable. My neurologist is treating me for the phantom smells. Best wishes, please keep me up to date on your headaches, Jill