I recently got a new Doc who specializes in Back, Spine and pain management. Upon doing a nerve test, he saw an abnormally high level in my lower spine. He ordered an MRI to see the severity of the L5 and scheduled an epidural nerve block. Explaining that the nerve block very well could take care of most if not all of the EM pain!
I will keep you all posted.
Please post any input you have, questions or concerns.
Thanks for reading
Novi
Hello again novi. I am sorry to say I have no experience with this procedure so I can't help you out there but I believe there have been discussions on this before I just am not sure where. If you go to the search link here and put in Spinal nerve block you should find some past discussions on the subject and hopefully someone with some knowledge on the subject will respond here too.
I hope it goes well and does the job. Please do keep us posted.
Take care,
Alina
Dear novi,
I found an article describing a similar treatment (as far as I understand) and attached it below. In the case described all EM symptoms decreased along with the pain, The authors also mention less successful reports on similar kinds of treatment. Could you post more details on the intended epidural nerve block?
Thanks and Good luck!
Ben
203-StrickerGreenresolutionofrefractorysymptomsofsecondEMwithintermittentepiduralbupivacaine.pdf (40.5 KB)Dear Novi,
We have just spoken, but to reiterate, there are so many understandings of 'blocks' .
Spinal cord stimulator - I know of one person who affirms spinal cord stimulator helped the management of EM.
Epidurals - research shows some success with symptomatic relief in paediatrics.
Sympathetic blocks - limited success treating certain cases of EM (usually secondary).
One member Mick has had some experience with 'blocks' so we will contact him to hopefully join the discussion and offer his insight.
Here are the links to past discussions on this topic- sympathetic block, total spinal block (TSB), epidurals(infusions/injection) and non invasive neuromodulation options Scrambler/TENS etc....
http://forum.livingwitherythromelalgia.org/forum/topics/em-s-relation...
http://forum.livingwitherythromelalgia.org/forum/topics/scrambler-ten...
Attached couple of good articles you might like to read.
Management of EM is so individualised. Sadly, its like finding a needle in a haystack !. Please let us know how you get on and if this treatment option brings some relief.
Fingers crossed :-)
Big hug
mads
PS:Thank you Ben for generously sharing that article with the community :-)
Has anyone used acupuncture
I have used radiofrequency ablation several times and it has been very helpful and long acting in reducing my EM pain.
Fixme--
On what part of your body did you have the radio frequency ablation? On your feet? and/or elsewhere and what kind of a doctor did it? So glad you found this to be helpful!
Thanks,
Serena
Dear Fixme,
Would you mind explaining the process of radiofrequency ablation for other members. 'Radiofrequency ablation (or RFA) is a procedure used to reduce pain. An electrical current produced by a radio wave is used to heat up a small area of nerve tissue, thereby decreasing pain signals from that specific area'. This is a topic that has not arisen before. We would all be very interested to hear more about your experience with this.
So pleased to hear that something is helping you better manage your pain- bless you!
God bless
mads
I have erythromelalgia and fibromyalgia with small fiber neuropathy’s. I was experiencing extreme pain in the lumbar and cervical region along with major muscle spasms. These pains were frequently associated with flareups in my feet And at some point I started to get epidurals in my lower back and neck. The epidurals very frequently effective if the injection hit the proper nerve bundle. But the wonderful effects were fairly short-lived. Usually relief was only for a few weeks at best a couple months. With radiofrequency ablation the use of needles with electrical current are used to disrupt the functioning of the ends of the nerves which provided terrific pain relief for those areas. They say the treatment lasts for nine months to a year and a half. I found that to be true for me. Although the treatments did not directly affect the Erythromelalgia burning in my feet and hands and face it did provide me terrific relief. The relief was most dramatic and my neck and lower spine but it helped generally for all the other pains I was going through when there was a reduction of stress. Because I was doing with much less pain in general. I am no longer bedridden as I frequently was before I started the treatments. I am at a point where I no longer get radiofrequency ablation because it has basically become unnecessary…you can get the treatment under general or local anesthesia. I had it done under local and I have to say it was very painful but that only lasted for a few seconds. Please feel free to ask me any questions you might have about the procedure.
Hi Novi,
the end of November this engagement in the University Hospital of Frankfurt with me is done. I had had a few weeks ago for testing purposes only and right side numb with local anesthesia the nerve. A significant change was found not true by both sides but I will let me now the nerves for the autonomic nervous system deserted to the feet. I want to take every opportunity to achieve an improvement. A deterioration is not expected. But ask yourself one that the intervention is not exactly painless.
Greatings Winni
Dearest Fixme,
Thank you so much for elaborating on your experience of radiofrequency ablation . Would you mind the mod team reposting this as a new thread?. This is not a topic we have ever discussed before and an option that some members might like to investigate further.
We are thrilled that you have found something that works for you. You are 'comfortable' - thats fabulous, fabulous news.
Big hug my friend
God bless
mads x
I tried acupuncture while I had symptoms in the feet only, although I thought the issues were coming from the mortons neuroma. At best I had temporary relief for a couple hours. However I remember prior to my first appt my toes would go numb after just 2 minutes of elevating. After, it took 30 minutes up the wall before the numbness set in. This was however at the very beginning of my neuropathy. I would like to give it another shot but I’ve sunk so much money in to this ailment already.
I've been back yesterday from the hospital. Me the sympathetic nerve was initially only right desolate with alcohol. Previously, the nerve was a few weeks ago as a test also temporarily numbed with local anesthesia only right. I'm going to watch about 2 weeks, what impact this has on my right foot. Then I have a follow-up appointment at the clinic to discuss whether the nerve for the left foot is deserted. A deterioration has not occurred. Last night was my right foot without pain and irritation while the left foot hurt like every night. Keep your fingers crossed that this will continue over the next few days. I will report here on the development.
On the second day, and the second night after the obliteration of the nerve on the right is the right foot with no problems - no irritation, no redness, no pain. The left foot was irritated but again at night and hurt. Hopefully it all goes on like that. But it is still too early to say definitively, that it was a help.
Did they put needle in foot!!? & how long will it work
Penultimate night I woke up because my feet were uncomfortably cold. Then I had taken her under the covers. That was then but apparently for both feet to warm, so they were red and hot and ached (including the right foot). Around midday, both feet calmed down. The right foot has since again without pain and irritation. The left foot did hurt again this morning and was irritated. My conclusion: As long as the feet are kept cool and not too stressed, has the obliteration of the nerve definitely helped, but not solved the whole problem.
Only flip flops said:
Did they needle in foot!!? & how long will it work
The needle is inserted at the lumbar spine under CT, not on the feet. This is done with local anesthesia, but is quite painful.
It takes about 1 hour and is forever