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I just found out i have "lesions consistent with peripheral nerve sheath tumors on the L5-S1 foramen" as well as one
" within the proximal cauda equina nerve roots".
I suppose that explains my recent increase in lumbar pain. I thought it was just exercise or garden strain. Does anyone out there have this too and what, if anything, have you chosen to do about it? I'm inclined to MRI monitor them as long as they arent exceedingly bothersome. However, I read unnerving things (ooh, a pun! 🤪, still… read more
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Members rallied around a community member sharing their recent discovery of peripheral nerve sheath tumors, offering emotional support and... Read more
@A MySpondylitisTeam Member. Knowledge is more than power, it is regaining a healthy life enjoyable to live in again. Take advantage of that device in your hand at your fingertips. Google query everything. Go to your search engine, whatever it is that you use and start with "what is...." Then look at the source of information you choose to read. If it says "sponsored", pass it by, they want to sell you something. I have found the best sources of info are the published papers at National Institute of Health, Science Direct, and Cleveland Clinic. Sometimes i have to use a second device to look up some terminology in what i read, but thats okay. The best part, when we learn something new by asking questions, we grow new connections in our brain, decrease inflammation in our brain and ward off dementia that is brain fog. Yours in better health P 😌🙏
@A MySpondylitisTeam Member. Thank you for reaching out Lisa, Im not in a horrible condition even though it sounds horrible, i mean, not pleasant, but not completely incapable of basic bodily functions. I'll get on top of it, eventually, that's how i roll you know. 😏
@A MySpondylitisTeam Member. Thank you Irish Lass😘. My body is something I can kind of sort of control in a way. Your challenge involves another person outside of your control. In my past experience that is extremely mind and body debilitating. I deeply hope that you are finding professional help in moving through and managing that "walking cancer exterior beast". If not, let me know, I may just have to start working on my bucket list early and come hunting in the Old Country. An outlet for my own frustration would do me good. 😁🤜
@A MySpondylitisTeam Member. Yes, it was on 6 month follow up for the hip stem cell transplant I had last Oct that my ortho surgeon found it, ordered a closer look MRI and now it's all going over to my Neurologist who is following a "brain cloud" (Tom Hanks movie reference 😁 that keeps my sense of humor on that up).
I'm not devastated my dear fellow sisters in Spondyland. Most of all i feel deep warm gratitude to you all for reaching out. Thank you so much for your concern. No, im not complacent either, just keeping with my perspective and staying my current course of PT and diet. I slept deeply last night actually for the first time in a couple of months.
Mostly im curious if anyone on this site who may have had these, if they have done anything about them and what, if anything, that may be. But, if no one else has, you know me, I'll be sharing what I do for others to know should they get these too.
Your favorite Spondy lab rat, Pitac😸
@A MySpondylitisTeam Member, you are the first person that has communicated to me about the pain behind the ear. Thank you for telling me that I am not alone in this. I did some research on this issue and found that it likely is Occipital Neuralgia, caused by compression of a nerve in the neck. (at least, that is my understanding of it.) The article mentioned Botox injections as being a treatment for it, but not a cure. I constantly do exercises and apply heat to my neck, hoping that it will relieve the pain. For lumbar pain while cooking, the heel to butt kicks sounds like a good idea. I will try that this afternoon.
Thank you again, Pitac for your input. You are always so helpful! Talk to you later!😘💓🙏🏻
@A MySpondylitisTeam Member. Let us know how it goes for you Vicki, what you find and what you do about it. The more of us who share, the better decisions we all make for ourselves. Just keep in mind, most of it all sounds scarier than it is, worrying without calm perspective exacerbates inflammation and makes things worse overall. It's hard sometimes to keep calm and a cool head. Reach out anytime. We're all in it together. We all get through it together, even though we're far apart, sharing the stress and the info keeps us close in heart. 💞
I have experienced the headache you describe. Mine is not related to the brain spots. It's from cervical spine conditions, reverse curve, multiple levels of stenosis from degenerate discs that cause muscle spasms. Several years ago i tried botox injections in the area behind my ear on the side of my head. Sometimes it worked, sometimes it didnt. I quit that after 4 or 5 injections and the ladt one left me unable to feel that side of my mouth eating. Then i switched to Physical therapy. I had an awesome Dr of PT who made me a huge believer proponent for that. It took months, but my entire face, skull, neck spasms disappeared and haven't been back. 8 years +/-. On MRI my neck looks horrifying, the worst of my conditions, and has the fewest symptoms. It's incredible what we can actually live with without much difficulty. But it does require commitment on our part.
The lumbar pain you describe is familiar too. Unable to stand in the kitchen. I have found it helpful to use station floor mats of memory foam material in cooking locations, wear crocs for the thick rubbery cushion, and move my legs doing heel to butt kicks while stationary. Sometimes i do chopping while sitting at the table. Again, since 2012 until recently i have kept lumbar pain at bay, straightened curvature by 20 degrees, and increased disc space by consistent physical therapy exercises i learned in 2012. This latest bit though, I don't know, it may finally get me to Mayo in Jax, something drs around here have been suggesting for about 10 years or more.
Yours in better health P 😌🙏
Good morning Pitac! I am so sorry to hear about the pain and nerve sheath tumors you are experiencing. I will pray they are benign. It seems this disease is the "gift" that keeps "giving.". 😒
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