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I have a lump where the screw was put in for my gamma surgery. It has become painful and I am not sure if I should see my PC or neuro surgeon or just leave it alone. I had my Gamma surgery on Jan 11. Has anyone had this problem?
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
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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?
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
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 Joan, Glad the infection has cleared up! You may already know about wide bore MRI's, but if not, ask for one whenever you need an MRI. I am very claustrophobic and I always request a wide boar machine. It is a little wider on the sides, so you don't feel as closed in. Also, a mirror helps a lot. The mirror enables you to look in the mirror above your face and see out of the machine. You can see your legs and feet and you can see through to the glass and see the tech who sits behind the glass during the MRI.
I've been having headaches also for the last few months, but not my usual migraines. These headaches are very sudden onset, severe throbbing all of a sudden and always in my right temple. I had an MRI and MRA (to check for aneurysm) – fortunately, both were normal. I also have neck pain. I thought the headaches were causing the neck pain. You made a great point – maybe it's the other way round and could be my neck pain is causing these headaches. I'm going to look into that … Best wishes and please keep us informed on how you are doing, 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?
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.
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