Successful Sympathectomy for EM

To anyone who has had endoscopic thoracic sympathectomy for erythromelalgia and had success, could you please share the details of your story? Did your redness and swelling go down along with the pain? Did the redness and swelling go down immediately, or did it take up to a week to fully work? (Notes: Please do not link or reference any patient studies, I have seen all of those and I’m looking for personal experiences. I am also not interested in any negative stories / fear tactics advising against the surgery. I’ve already had the surgery and now I’m looking for some good news. Thank you.)

I’m not a doctor so you can take my thoughts on this with a grain of salt. However being a caretaker for my mother who has severe EM which is chronic and has been keeping her from a normal life for almost 20 years now. . . well we’ve looked at a lot of things for EM relief. I can’t tell you with you’re situation or the “cause” of you’re EM if a cutting of nerves can help or hurt you’re condition, but generally speaking it’s not a good idea. . . so this response is NOT to the person who had it done. This is in general to those who are looking at treatment options and I encourage you to talk to many physicians and see what they think, not just one. I’ll give you some general information in our thoughts about “nerve blocks” and what in general our neurologist told us regarding that and an MD confirmed this as well. But first let me state if you are in a state where there is no relief of a problem, people can get desperate and try almost anything. One has to weigh the risks and side effects. We also had more than one doctor weigh in but one did say the “nerve death” route to numb the nerves was a “HAIL MARY” pass kind of rare possible cure but would give one a side effect of having damaged feet from nerves that cannot function. But this is for sensing nerves, NOT SYMPATHETIC nerve blocks which may have been used in the past for RSD type symptoms or diagnosis. Sympathetic nerve disorder formerly called RSD used to be thought of as a problem where the pain signals are being transmitted through the nerves which are not designed to receive pain signals but to send nerve signals to help regulate the body. And if somehow a short kind of activity was happening, my layman’s understanding of it, the nerve signals for pain were being transmitted up those nerves and causing RSD. Reflex Sympathetic Dystrophy. Which is a terrible disease but now called CRPS Type 2 I believe. It turned out there is nothing wrong with the actual nerve fibers for those patients, what happened is doctors discovered their nerves are fine, but overactivated by GLIAL cells. But that is a different topic. Many thing may cause Burning Foot syndrome and some things are still unknown, but often it caused by a damged to the small or large nerve fibers, or entrapment or some reaction from a drug or some other damage. Even alcoholism can cause peole to develop EM. Also the body’s own defenses may develope it with autoimmune kind of responses. In some ways it’s related or one of a few diseases that can be proven to have pain in one location when damage is in another location. EM is one of those rare diseases that shows you can have pain in a part of the body but the damage was in another part of the body triggering that pain. That damage was in the brain cells or nerve pathways in some way. So Neuropathies can cause nerve damage of some kind or the death of the nerves and depending on how those nerves die the reaction can be quite a bit different. That was Neurologists are for. They are the experts in nerve related diseases and you’d be far better off getting their advice than mine. But I’ll share the thought process in our search for a “nerve” like solution and what we gathered from our doctors. Our condition or my mom’s is different than yours so what I say may not have any bearing on you’re particular condition. With my mom we had a foot surgeon who was a friend visit our house and he looked at her feet along with another MD who was also a friend. We met during the course of other hobbies I’m involved in and that led me to meet these gentlemen and other doctors from other realms of science, but this doctor who suggested we might try something regarding a pain block was a foot surgeon and he worked in a hospital under contract and did surgery with people who had suffered foot injuries.

He saw my mom’s condition and said if it was him, and he was in her shoes he might try a diagnostic nerve block of sensory nerves, not sympathetic nerves, as he was only concerned with getting rid of the pain. He said he saw patients who had horrible foot problems, but that was due to diabetic nerve conditions and their nerves were so far gone they had no sensation left and their feet were numb. He said you might want to try diagnostic nerve blocks and if they gave a great deal of relief and you could live with that you could try a more permanent nerve block which would kill about 1/3 to 1/2 of the nerves via ALCOHOL injections to nerves like the TIBIAL NERVE fibers for my mom’s particular case. And this would allow her to be diagnosed at first as to the efficacy of having numb feet. She’d have the same problems as far as swelling and redness, but would feel nothing. Because she’d be given basically a diabetic foot condition from the killing of the nerves so she would have numb feet.

But all the negatives of a diabetics life for their feet would be also present and those side effects, for example injury and chance of infection without knowing you were infected and maybe losing her feet as a result would be present. It was a “HAIL MARY” football kind of pass thing, with only a 5 percent chance of being successful - the foot surgeons guess. When I asked him who tried this for BURNING FOOT SYNDROME. Who had thought this up and tried this before he replied, “NOONE” this was his own new suggestion.

But he had done some stuff like that with people who had gate disturbances from foot injury and saw some real improvement. He had one patient that could not walk before the treatment was done and afterwards they could actually walk.

Anyway the challenge was to find someone who would even try the temporary nerve block which involved at first the use of lidocaine injections or something like that as if the foot was going to be numbed to be operated on. This was for sensory nerves not sympathetic nerves. I chatted with some other doctors as this friend was not in a career path that allowed him to work as our doctor, he was just throwing out this idea, but he could not legally do this procedure himself.

It took some time before I could get a doctor to agree and I used the following line of logic. I stated I didn’t think the diagnostic nerve block would be dangerous although we all know any injection can cause tissue break down or has slight infection risks, but it was reversible as a diagnostic block test and the kicker to my logic was this. A nerve block numbs you’re feet and essentially early EM suffering patients in the first year are DOING that but not with a block they are numbing their feet almost to the point of frostbite with cold water immersion baths for their feet and ankles. This of course is looked down on by the meidcal profession, but EM patients still do it.

So I said to our MD, it’s not like patients are doing this by themselves but without drugs, simply using ice to numb their feet for up to a year when they first get the disease. That logic seemed to make sense and the MD authorized the nerve block diagnostic nerve block. But our MD would not do it, he wanted a foot doctor to do it. So we got a foot doctor to do it and it gave mom relief but she ironically slept more when her feet were numbed and didn’t really get active. She had flares still but the recovery period for flares was far faster. She also tried KETAMINE cream like the MAYO CLINIC study with 1 percent AMIT and 1/2 percent ketamine in the cream and tried that for three days and also tried KETAMINE without the AMITRIPTYLINE component for another three days. The Ketamine cream gave as much relief as the nerve block, but she was still taking opioids and pain patch being a part of that during those cream tests. So the additive effects of the opioids could also be causing her some pain relief. When we were through with the diagnostic block tests, it was difficult to say if those would help her or not. Now this is in respect to the sensory nerves that sense pain, not the sympathetic nerves that send signals to regulate the body, those are two different nerve pathways.

In any case, the tests showed some relief although I expected her to be more active. She was more active with the Ketamine than with the nerve blocks. So it was time to decide if we should go for the hail mary pass. What would the doctors think? Well two MD’s were against the nerve block. One was her home MD who was an Anesthesiologists and also worked in a pain clinic. That doctor said if we did decide to do it do NOT sever the nerve physically with a cutting of the nerve which is exactly what you’ve done for you’re process. Because once you have cut those nerves there is no turning back.

But the FOOT DOCTOR/Surgeon said it was possible that a minor injection of a minor alcohol solution would only partially dumb the feet and they might experience some relief and not be completely numb. The foot surgeon also didn’t suggest CUTTIG the nerves, but killing them via injections.

But the other MD also said it was a bad idea to permanently numb those nerves. The Neurologist told me that if we did that the feet would turn black and die and she would end up having to have them amputated. And the MD agreed with that risk fear. So we didn’t do a permanent nerve block. Keep in mind neuropathy means nerves are damaged in some way. If some nerves are damaged and others are overly working or out of balance, I suppose you might be able to target in theory the nerves that are overactive and perhaps kill them off.
Only rarely do doctors give drugs to "try to repair’ the nerves in some way and some doctors don’t think you can repair them easily especially once they’ve been damaged.

It would seem like some kind of rebalancing of the nerves could work, but how can we do that? Some try. How technically difficult would that be and who is to say that will work, it’s more like experimenting and that is what much of medical science is.

The doctor can “practice” on their patience and do almost anything if they think it will help. And some do this. The neurologist told me that our AUTONOMIC nerves are setup to act in a certain way in nature when nerves are severed or damaged the body will automatically GUESS some terrible injury happened and by default the bodies own immune system will “SEND BLOOD” to the affected limb. This means if you numb the feet or nerves the body should by default say, there’s an injury and I need to send more blood to heal it. So vascular dilating will occur. Now this is for severed nerves. Or some major trauma. From the nerve perspective the body often by default will send my blood, not less.

And the bodies only default response is “SEND MORE BLOOD”. Since EM has the problem of there being feet that are to hot and swollen, you don’t want more blood being sent to you’re feet and hands by default, so cutting the nerves will not be giving you the response you are seeking in most cases. That being said I’m not a doctor and this is from my limited experience and interaction with these doctors for my mom’s condition. The cutting of nerves may not allow them to be healed back again. But in some cases they will try to grow back and in some cases body fat from the stomach is used in an operation as a barrier between the two parts of the nerves so the nerves can’t grow back together. That is pretty serious business.

The sympathetic nerves are perhaps operating very differently as I’m taking about nerves sending messages to the brain which reacts when it can’t sense those signals. If you short circuit the signals being sent to the body by attacking or cutting the sympathetic nerves, well that could be causing other reactions and “might be” less dangerous. As some doctor has allowed this to happen, hopefully they know the risks and explained them to you. The body is a wonderful machine, but in some cases when nerve signals get messed up a lot of weird things can happen as most people in these forums with neuropathy can tell us. All kinds of odd things can happen with nerve damage.

My mom’s condition may be very different than yours and in some cases it seems in some past posts nerve medications are tried to alter the nerves and how they work and cause perhaps a side effect which is the reverse of the problem you are having. In the case of some drugs people may be pushed towards a numbing and lack of blood flow by altering nerve activity with some drug interactions. Causing Raynaud’s with numb and cold feet symptoms pushing their nerves toward this other condition to try to even things out and reduce the HOT FLARES of EM. If you have more than one type of nerve damage it can be POLYNEUROPATHY. The thing that is terrible about getting old is side effects from one drug can be treated with another drug which has it’s own side effects and it can become a massive number of drugs each one causing a good and bad side effect and our bodies may not take those as well as we get older. When we were younger and stronger we could put up with more at least some of us could. As we get older all these side effects seem to conspire and try to take us down. Hopefully the nerve blocks you’ve done will help you’re particular condition in a positive way. I’m hoping you find relief, but as is the case with many EM cases, there is no sure fire cure for everyone, because the causes are often unknown and the treatments that work will for one may not work at all for another person.

We still due diagnostic nerve blocks for temporary relief, but ironically when they are done mom rarely changes her routine. She often still stays fairly inactive, but also at times becomes very frustrated and ignores the pain and gets into an almost obsessive manic state, trying to get some work done, ignoring her own feet pain and standing on her feet for long periods at a time, and then reaping the reward with more painful flares, and not understanding that her long period of standing caused the flare to happen. Such is the case with some who have severe EM, we seek relief from pain and agony. There are of course other problems that can cause swelling and pain and edema. I’ve seen my dad experience this from sleeping in a lazyboy for a few nights without going to bed an elevating his feet at night. He had some pretty serious edema which could also relate to a heart not pumping efficiently. So I’ve seen swelling in feet in more than just my mom. And I’ve even injured and had my own feet swell or hurt, often from some abuse they went through, like heavy stand up and shocks on the feet or not getting enough sleep. So edema is also a big concern but that can be related to heart and other age related issues or other injury as well. The body is an amazing machine and it’s hard to appreciate all it can do so well, until perhaps we get old and start to see it fail. Then we get a much clearer understanding just how wonderful and complex that old body is.