Has anyone had a lumbar sympathetic block done? Pros? Cons?
Hi jenn. Just had my 4th one last week in (2 in each foot now). Pretty unpleasant experience if you don’t like needles like me. It seems to make a bit of improvement for me after a month or so. I’ve noticed a receding of the red blanching after showering, so seems to be improving heat tolerance. I can now for instance stand to make dinner without flareups generally. When I exert myself, walking for more than 30 mins, that still causes the worse flareups. It’s a risky proceedure with only anecdotal evidence for improvement of symptoms. However in my case my improvements could be attributed to them so I’m pencilled in for two more. Makes you feel a bit odd when the cuff comes down as a bit of the drugs leak back to the rest of the system. None of the medical staff have seen or done them before at my hospital, so its always a novelty for them when I go in. I also heard you usually need a few to see any improvement. Takes 6 days or so after for feet at least to settle back down. Sorry if I make it sound grim, but the small benefits I’m seeing make it worthwhile. Hope that helps!
I went for a temporary one, the kind they do before they would attempt a permenant one. It made my EM much worse, as it opens up the blood vessels. Those who have the sub-type of EM that is caused by the blood vessels closing down first of all and then flaring wide open would probably find it helpful. Just make sure that your doctor is fully aware of EM and its various sub-types before you agree to it, and always have a temporary one done first.
Like mnp, I hate needles, so ask for a higher dose of the sedative if you're like us!
I am not sure what type of EM I have. The doctor that suggested doing them has diagnosed me with CRPS but is aware that my rheumy has diagnosed me as having EM. All of my symptoms have come on after having taken the antibiotic avelox last November. Now that the summer heat has started I am miserable as it is in my feet and hands and is sometimes in my legs and face. I have been taking some meds that help slightly but it is not enough.
Do any of you remember the cost of the procedure? Has anyone done a block for upper extremeties?
By the way, I am very thankful to all of you that have replied... it makes me feel like I am a little less in the dark on this whole issue.
My son Drew also tried the temporary block almost one year ago. I was very excited about the possibility of him being in less pain. However, immediately upon waking from the sedative he told us he was in pain. The anesthesiologist didn't believe him and thought he was still groggy. After 45 minutes the leg they did the block on was very bright red, hot to the touch, and Drew continued to insist he was in pain especially in that leg. The benefit I was hoping for never appeared. We kept a chart of how his right leg (with the block) was feeling compared to the left leg (without the block). In the end we decided it was not worth it to do the procedure again. Our insurance covered the entire procedure. It was done in an out patient surgery center. I wish I had better news to share. As with every other treatment and medication used to help the symptoms of EM, results will vary for each individual. You may have great success with a temporary block. I hope you do experience pain relief with whatever option you choose!
yes, had two, made me flare up LIKE CRAZY, couldnt walk, had no relief even after the flares went down, horrible experince...
That was my experience Will, a total nightmare!
Will Prowse said:
yes, had two, made me flare up LIKE CRAZY, couldnt walk, had no relief even after the flares went down, horrible experince...
That sounds awful Jenn, I'm really sorry.
I don't know the cost of the procedure, thanks to the UK's wonderful National Health Service. I am so sorry that you even have to factor that into your decision. It would be a good idea if they could work out what type of EM and which of the three sub-types you have, as that decides the course of treatment rather than trying out treatments that would never work and could make your pain worse as well as costing lots of money.
I'm having success with lidocaine infusions. They need to be at the right dose, as there is no standard dose. As it is helpful to many different types of pain, it could be useful as something to try while you wait to find out which type of EM and which subtype you have.
I really hope things work out for you.
joyfuljenn said:
I am not sure what type of EM I have. The doctor that suggested doing them has diagnosed me with CRPS but is aware that my rheumy has diagnosed me as having EM. All of my symptoms have come on after having taken the antibiotic avelox last November. Now that the summer heat has started I am miserable as it is in my feet and hands and is sometimes in my legs and face. I have been taking some meds that help slightly but it is not enough.
How are you finding Tegretol? It worked wonders for me and gave me a full nights sleep… But within a month I took life threatening allergic reaction to it - steven Johnson syndrome, was really gutted as how it helped! Glad your having no problems with it!
lizzi said:
I had one last October. In my case, it neither helped nor made my EM worse. I believe the block wasn’t properly done. To be considered successful, the limb should show signs of warmth and redness immediately following the block. (They only did my R side.) We couldn’t see any difference between my R and L, in color or temperature. At the time, the dr was adamant that he got the injection in the right place. But then why didn’t I show any changes? I may consider having another one someday, but for now I’m doing a trial of tegretol and clonidine (which seems to be helping). Btw with the lumbar block, they have to weave the needle through the psoas muscle to get to the anterior part of the spine. The muscle was so sore afterward I couldn’t lift my leg for the rest of the day and it took 2 weeks to go away.
I am about three weeks into Tegretol. Started with 600mg at night and just four days ago added 600 mg in the morning for 1200mg total per day. The burning in my feet was gone after 6 days and I am sleeping in my own bed again. Before this I slept sitting in a chair with my feet soaking in water. So, I am hopefully optimistic about the Tegretol although it is certainly too early for me to give you a long-term report. My neurologist says he has had very good results with a number of patients on this medication, so I hope it works for me.
Thanks again everyone. Keep me updated on what is working for your treatment.
I had two done but I did not get any relief what so every.But every one I believe is different
I have had several sympathetic nerve blocks though the pain clinic in the US. My doctor is wonderful. He uses a short term sedative while doing the procedure on both feet at one time. He also uses cortisone in the space he is blocking which makes a huge difference. He gives me one a week for 4 weeks in a row. We have learned to only do this every six months. I have had luck with this helping me with small tasks and short trips. Which for me has been huge because before I could not leave my chair.
Hope this was some help.
Toll
I just had the test done last friday, so I'm only 4 days out. I had the heat difference right afterwards so we know it went to the right place. So far, no relief, but from what I'm reading it takes a bit to "kick in". I'll try to keep you posted as to whether it works. I'm curious as to how you find out what sub-type you have. Anyone have any info on that. I've never heard of the sub-types and would like more info. to pass on to my doctor.
Hi Lizzi thanks for this info, most relevant. I'm confused about magnesium though. I have a form of vasodilation dysfunction and have heard that magnesium is supposed to help this, but you mention it may make symptoms worse? I'm am getting an appointment with an EM specialist in London soon and will ask about beta blockers to try and promote vasoconstriction in my feet.
Best wishes,
Mike
lizzi said:
There are 4 sub-types according to the literature I've read:
1. Genetic: This can be tested for.
2. Vasodilating: This type is aggravated by dilation, or widening, of blood vessels.
3. Vasoconstricting: This type is aggravated by constriction, or tightening, of blood vessels.
4. Platelet aggregation: There are tests for polycythemia vera, thrombocytopenia, etc. (This is the type that aspirin helps.)
I don't know of any tests specifically for vasodilating and vasoconstricting EM, but there are many clues. I determined that I had the vasodilating type after several things that are clearly vasodilators made my EM worse (ex. magnesium and HBOT). If you try taking a calcium channel blocker and it helps, this would point to the vasoconstricting type which would be helped by the vasodilation of the drug. If it makes it worse, then you have the vasodilating kind of EM. The same would apply in reverse to beta blockers, which are vasoconstrictors. I also think that with secondary EM, one's primary condition would give some clues too. For example, diabetes has the effect of reducing blood supply to the feet; this would point to the vasoconstricting type of EM.
Julie Sheffer said:I just had the test done last friday, so I'm only 4 days out. I had the heat difference right afterwards so we know it went to the right place. So far, no relief, but from what I'm reading it takes a bit to "kick in". I'll try to keep you posted as to whether it works. I'm curious as to how you find out what sub-type you have. Anyone have any info on that. I've never heard of the sub-types and would like more info. to pass on to my doctor.
Genetic EM, or more precisely the SCN9A inherited type, which I am being tested for, is not a seperate sub-type in the treatment sense. You could have the SCN9A mutation and have the vasodilating sub-type for example. Until there is a way to overcome the effect of the genetic mutation, it will be treated as any other type of EM. It is thought that all EM, is caused by similar mutations that affect how we feel pain and how our sympathetic system (which controls things like bloodflow and sweating) reacts to the stimulus of pain. Because of this, people with primary EM are very interesting to drug companies to test the new drugs for nerve pain. The drugs that have been tried so far have shown a pretty good result. As they attack the nerve signalling, they should work on all forms of EM, not just the SCN9A inherited type.
You can tell the difference between the types of vasodialation with a laser doppler scan and with infra-red scans. By using differing room temperature and with different stressors, you can see what the sub-type is. If you can get these tests, you will know what treatments might be effective. As so many of the drugs we take can have unpleasant side-effects or can actually make our EM worse, it's good to be able to rule out a whole bunch and to get down to trying the most effective.
I'm on propranolol and it hasn't really helped apart from making my Raynauds much worse! You have my sympahty lizzi, I always joke that the only way it's helped is by making my hands cold enough to act as ice packs. Could you let me know how you get on with the clonidine?
Mike, is it Prof Chris Denton at the Royal Free you're seeing?
I hope that helps.
I got the sense from what you'd written that you knew, but it's a common idea that things that work for the SCN9A type don't work for the others, just as something that works for the vasodilated form don't work for the vasoconstricted form. I wouldn't want to take away the hope of the new drugs helping. We've all had enough hopes dashed!
Hi Lizzi, Starsmurf, thank you so much for your posts. More relevant information than all the specialists I've seen put together. I stopped taking 300mg Mg two days ago and the next day had dramatic improvements in flare-ups (may also be attributed to just starting and settling in with Lyrica 50mg for 6 days), but none the less thanks for the info. I had misinformation on the effect of Mg and EM. I've seen an improvement in my symptoms now for the first time in 1 year, so am quite happy. Need to do more testing before its any where near conclusive. But hopefully Lyrica and Amitriptylene 10% transdermal gel will give me relief so I can continue about with life. I'm also waiting for AmiKet (Amitriptylene & Ketamine) transdermal gel to finish final stage trials, so I can try that on prescription.
I'm getting booked in with Dr David Bennet at Kings College London hopefully soon in between nerve blocks in alternate feet. There's another member that was due to see him in May and said she would report her findings. I'm keen to find out if its EM I have with some of the tests you mentioned.