Anyone else read anything about the surgery that cuts/destroys certain nerves in the thoracic area of spine, to end EM? The dr. I learned about is in San Antonio, Texas (USA). Among the problems and concerns is that it's a 50/50 proposition: could make worse, could improve/end EM.
I'm not inclined to have surgical procedure, but I have started tracking when my flares are worse ... and they are almost always concurrent when my cervical and thoracic areas are giving me problems. I have cervical stenosis (narrowing of spinal canal which presses on nerves, causing pain as well as numbness that often migrates down arm(s) into hand(s) ... and can lead to permanent nerve damage and loss of hand/arm/shoulder use) ... along with some upper thoracic spinal and muscle issues due to a long-ago car accident.
When I've lifted something heavy, or my purse gets overloaded (and I wear up on shoulder despite my problems), or if I've done anything that sets off pain and restricts movement, my flushing is usually much more frequent. It's not always super-hot and painful, but can last for hours upon hours, over the course of days.
Other times, my ears light up and are bright red, even if my face isn't.
P.S. Sometimes aspirin helps, other times, not at all. Ditto with antihistamines and just about anything else I've tried. Gabapentin never did a thing for me.
Hi Lynne. I don’t know about that surgery but as you mentioned I have read that it does make some peopl worse. That is a pretty scary proposition! my doctor has recommended a neuro spinal stimulator implant to mask the pain. It is a surgery but a trial version is available to test if it will even help before the permanent surgery is done.after the test if I don’t get relief or it gets worse they just take it out. The nerves stay intact but the stimulator masks the pain signals in the nerves with other stimulation that isn’t painful. I really don’t want to because it’s terrifying! This might be another option to look into. I am going to get the trial done in February or march. I will be sure to post if I have any success. Take care
Alina
Usually just grab a couple of regular strength, enteric-coated tablets (325 mg?), but there probably have been times I've taken just one. Honestly never gave it much thought until I read the postings here! It was more a case of "maybe this will help."
Thanks for bringing this up! I am very intrigued by your post Craig, since I, too, have multi-level cervical stenosis (C3-4 to C6-7) and EM in my feet and occasionally in my hands. I wonder if you could post the name of your Dr. that told you about the surgical procedure and the correlation between EM and spinal stenosis? I am not interested in the surgery but would like to look into this avenue for other possible treatments. Thank you again and my best wishes for your pain relief
I also have spinal stenosis, and a reverse crook in my neck from a bad fall as a kid. Then, about 8 years ago my feet and legs began going numb (not totally, but a fair amount), till now I'm numb(ish) to the tops of my legs. Then the EM began. I have to wonder if the pinching, numbed spinal nerves of stenosis are then responsible for misfiring of micro nerves in extremities, like may be with EM.
Besides being a wreck at the moment due to a stressful family situation I was seeing clear improvements with my EM. Now my feet and hands have gone haywire to the extreme.(I stopped the treatment a week ago also not helping) My son was a victim of a group attack and he is still in some danger. A week ago I finally found a doctor taking an interest in my EM only to see that it was really on the mend.
However before that I saw great gains, my plan:
a) I am taking neurological natural vitamins in large doses: Ergybiol, Biortho, vecti-seryl, and two others made by a french laboritory, NUTERGIA. You may order them or get an american equivalent from a naturopath.
b) Yoga breathing: at the moment i am only doing it one or two tims a week but am reading up on the benfits can be extraordinary.
These improvements are making me really think hard that somehow the EM is because of our nerve endings to either be pinched (carpul tunnel, rheunods syndrome) or lack vital oxygen (try Oogie breathing) and/or cell nutrition due to a poor diet or in my case severe stress using up all the cal mag supply premturly in the body.
Seriously the Yoga breathing has the advantage to be efficient, requires only 7 minutes per day to have amazing effect. Look on line or ask for a private yoga consultation from a Raga Yoga or Pranayama expect or else just any great yoga teacher. I of corse am better at giving the advice than following so please be patient with oneself and Try Try again.
PLEASE try not to do anything too irreversible with these operations. I am sorry that your pain would bring you to these extremes. Bless you all, Lorna
I tend to agree. What about a great chiropractor, an alignment problem is pinching the nerve. Unfortunately you would need a year long adjustment program to get it back in alignment which is expensive and time consuming but may work!!
I had a back and shoulder issue sometime back and he (the chiropractor) needed 2 months as the muscles have settled into place and will pop your alignment back to the bad position, hence the need to keep adjusting until the muscles stretch and reshape. of course a good one is required, get references. Also that must be why yoga is so good for un-curable illnesses as it works the spinal cord and gets everything flowing well over time. WOW I think I am having a break through! I hope this helps
Jane said:
I also have spinal stenosis, and a reverse crook in my neck from a bad fall as a kid. Then, about 8 years ago my feet and legs began going numb (not totally, but a fair amount), till now I'm numb(ish) to the tops of my legs. Then the EM began. I have to wonder if the pinching, numbed spinal nerves of stenosis are then responsible for misfiring of micro nerves in extremities, like may be with EM.
Thanks for the suggestion. Unfortunately it isn't just an adjustment problem. The normal cervical spine is a slight smooth curve toward the front. Mine is like two 90 degree plumbing joints toward the back. I saw the MRI, and won't let anyone near my neck! I could end up paralyzed.
I see that many of us have spinal stenosis. I would be interested in just what percentage of our support group has SS. I also have it and I have Facet Arthritis. I have also noticed that my lymph node at my right ear gets sore and swells when I have bad flares on my face and ears. Of course the malar rash is permanent on my face now and just gets really bright red and hot when my feet and ears "flame" up.
I also have cervical spinal stenosis. I am seeing a Neuro Surgeon but he didn't think the surgery would help my EM. Since this seems to be common with so many of us perhaps it would help. Just don't know how invasive it will be. Will ask more questions. I just might go to my pain doctor and see what shots he can give me to block the foot pains. I have been pretty immobile since last April. I will keep you posted. The Gabapentin is not helping but it does take the edge off. Myself
Definitely get a thorough description of the surgery first. A neurosurgeon I saw described it and told me I would not be satisfied with the results! In thinking about it, I imagine it's more the backward crooks he was talking about than the stenosis, so find out how others who had similar stenosis surgery responded. I think it will be pretty darn invasive. That doesn't mean it won't be a wonderful success, but ask around outside of the EM sites, too. I ask the best for you.
And I agree, Gaga. It's very interesting how many of us ("US?") have spinal stenosis. I'm trying to learn more about the nervous system so I can maybe begin to remotely (let me qualify that!) understand how a neck pinch of the spinal cord or spinal nerves causes EM in feet. I know it's connected, but HOW? How does the neck bone connect to the blood faucet?
The surgery I mentioned is strictly for getting rid of EM that is on the face, upper chest, ears ... the surgery for spinal stenosis, which I may at some point need, in order to not lose use of my arms/hands (!!! don't ignore numbness, it can become permanent and lead to loss of extremity use) -- even that is no longer as intrusive a procedure as it once was (small incisions) but nonetheless, surgery is surgery, especially in such a sensitive area.
The EM procedure is done via two small incisions, best I recall, in the lower shoulder area. The key to success is that the correct nerve(s) that pass through the specific level of thoracic vertabra are completely and correctly severed, which is indeed quite tricky. Apparently it can be difficult to be certain of this until post-surgery ... which is why some people need a second surgery and/or the EM can be made worse (along with heavy sweating).
So, it's nothing I'm willing to chance ... it just finally sunk in for me that my EM is almost always worse when my neck and shoulders/thoracic spine are bothering me more than usual. I've got a severe whiplash ("military neck") with scoliosis from a car accident 30 years ago, so I'm seldom pain-free, but most of the time, it's just in the background. As I wrote earlier, if I've done something like lift too much weight (especially off-balance), or my purse gets real heavy, or I trip and catch my foot with some force, then everything from mid-back up can crank up the volume for days.
I have found chiropractic helpful, and I do think my EM lessens when I'm able to be consistent with it, along with an occasional massage. However, due to competing financial priorities these days, I have to be content with moist heat and gentle DIY stretching.
It just seemed likely that others would have a similar connection between neck/upper spine issues and EM, given what I'd read about this surgery. Looks like that is the case from the responses so far.
Jane said:
Definitely get a thorough description of the surgery first. A neurosurgeon I saw described it and told me I would not be satisfied with the results! In thinking about it, I imagine it's more the backward crooks he was talking about than the stenosis, so find out how others who had similar stenosis surgery responded. I think it will be pretty darn invasive. That doesn't mean it won't be a wonderful success, but ask around outside of the EM sites, too. I ask the best for you.
And I agree, Gaga. It's very interesting how many of us ("US?") have spinal stenosis. I'm trying to learn more about the nervous system so I can maybe begin to remotely (let me qualify that!) understand how a neck pinch of the spinal cord or spinal nerves causes EM in feet. I know it's connected, but HOW? How does the neck bone connect to the blood faucet?
I remember reading about military neck (pretty much straight cervical spine?). I can sure see why you'd have the surgery you describe - sounds like no bone invasion involved. I'm glad to hear stenosis surgery has improved. I'll definitely read about that! I think EM of face would be the most difficult! I hope it's completely successful, whatever you decide on. Keep us posted, please!