Lump by screw from gamma knife surgery, anyone else?

I am sorry to hear that. Just get some rest and good sleep. Best thoughts. Ginette

Hi Jill, Have you had a headache on the opposite side of where the meningioma is located? My neurosurgeon says it's not related and my PC says she thinks it's arthritis on my spinal cord but it's getting worse. My PC has sent me to PT and I just had my evaluation. She said that everything is really tight on the right side where I have my headache. I hate going back to Drs. as they don't seem to have any idea of what is causing this headache. Any ideas? Thanks, Joan

Hi Joan. I'm so glad to hear from you but sorry that you're not getting relief from headaches. I've gotten terrible migraines ever since I had my original meningioma resected in 2001 but they are on the same side. I control them with medication. Last year I started getting a very different type of headache (very sudden onset, very severe, only last a few minutes) and those headaches were the same side as my meningioma but opposite side from where I had a recurrence in 2017. My neurosurgeon did not think my headaches were related to my meningiomas. I also saw my neurologist about the headaches. I would recommend you see a neurologist if you can. They specialize in treating headaches. Mine started me out on Alleve every day which helped but when I stopped the Alleve, the headaches started up again. He ordered an MRA for me (which is similar to an MRI) to rule out an aneurysm. It was normal. Over a period of months, the headaches gradually grew less and less frequent. I don't know if this was a coincidence, but during the time I was having them, I had an appointment with my dentist. I told him about the headaches. He asked if I felt that I ever clinched my teeth or did I grind them, especially during the night while sleeping? He said I should first try to make a conscious effort not to do either of those, and if the headaches persist, to try a bite plate to wear overnight. It's like a retainer just for your top teeth that you sleep in. He said grinding and clinching your teeth can definitely cause headaches and he said a bite plate can be very effective. During the timeframe where the headaches became less frequent and finally stopped, any time during the day when I was stressed or rushing, I could feel that I was clinching my teeth. When I started focusing on not clinching them, that's when the headaches became more and more less frequent and finally stopped. Like I said, it could have been a coincidence, but I think it helped.
You've made a great start by consulting with your neurosurgeon and PC and trying PT. I totally understand about not wanting to see more doctors when they haven't helped so far. But maybe consider a neurologist and perhaps your dentist. Neurologists have all kinds of treatments for headaches. My brother-in-law is a retired neurologist. He sometimes taught patients techniques such as biofeedback to control headaches.
Have you seen a neurologist yet at Mayo or locally where you live? Also, if you can, try PT for a few appointments. I have a physical therapist that I've gone to off and on for years whenever my disc in my lower back acts up and the exercises she gives me to do are much more effective than pain med. Please keep in touch. Jill

Hi Jill, I'm sorry that you are having headaches too. I do think you are right about stress causing some of them. I did ask my dentist and he checked to see if I was grinding my teeth at night and I am not. He didn't think it was related. Mine come on the opposite side of the meningioma and are really sharp and intense for a short time. I have to stop what I am doing and take CBD or a Tylenol and sit down. If possible, I put a heating pad on that side of my head and it helps with the pain. Once the severe pain is gone, I have the headache- only milder. It varies from all day to an hour. I can't take anything like Aleve because I now have AFIB and get lots of PVC's. My PC has sent me to PT and my evaluations showed that I was really tight on that side. My endocrinologist sent me to a neurologist but he was not concerned about the headaches and focused on my middle finger of my left hand that has a slight tremor! He said I would be severely shaking in 2 years and to come back then. I won't be going back to him. My neurosurgeon suggested a neurologist but I didn't know they had treatments for headaches. I hope the PT works and it's good to hear that it works for you. My PC has me down for 9 sessions but the PT said I might need more. If they don't work, I will go to another neurologist. I am having a lung evaluation on Fri as I have asthma, COPD and institional lung disease. I have been having to use my inhaler more often. Maybe that is causing the headaches. Some days, I feel like I have to figure out the diagnosis myself. Thanks for your help.

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

Your post is so interesting because for the last year I have been smelling smoke as well. It's so weird. I just found out my tumor is growing even though I've had cyberknife radiation. It's rather distressing and will have to make a decision as to whether go for more radiation or more surgery. I've already had two craniotomies, and feel that is my limit. I think it's very difficult for docs to understand our symptoms because they have never had brain tumors or symptoms of. Wishing you both the best. love,peg

Hi Jill, I also smell phantom smoke occasionally and all my docs have said they don't know why I smell it. This site is amazing as now we have another person- Peg- with the phantom smoke. I live in Orlando, Fl. I am so sorry that you are having focal seizures and amazed that your neurologist was able to diagnose it. I think I have good Drs. - except for the neurologist. I had my evaluation for PT and today I start the real stuff. My PT said we will go slow and I have to be gentle in my head exercises. She is having me do mild back exercises too. I really hope they work. The main thing that seems to work is Medical CBD. I did try acupuncture many years ago for hip pain and it did help but it was very expensive and I ended up getting a hip replacement. What are you taking for your seizures? I take 900 mg of gabapentin for my nerve pain- fibromyalgia and it really helps. I read that it is also a drug for seizures. I hope your results are good.
Take care Joan

Hi Peg, I totally agree that the docs try but sometimes brush off our concern/symptoms. My neurosurgeon said the Gamma surgery will "hopefully" stop the tumor from growing. I have another MRI in June. If it's growing, he said I may need regular surgery. You are so brave to have had two craniotomies and I don't blame you for not wanting any more. I dread brain surgery or any surgery as I have a compromised immune system. Oh well, we just have to keep going and maybe eat "dark chocolate"! This forum has helped me a lot. Jill walked me through the gamma surgery so I knew what was going to happen and it really helped me. Take care and please keep in touch- Joan

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

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