Hello! I'm new to the board and I have to say that I have learned so much from you all. I have had RSD in my right foot/ankle for about a year, brought on from a fall down the stairs in which I rolled my ankle and tore a ligament and nerves. I was fortunate enough to have an orthopedist who recognized the signs of RSD and put me on Lyrica right away. He tried to send me to a specialist, but after waiting three months to see the specialist I found out that he no longer saw patients for this! I am now seeing a PM at the Cleveland Clinic.
I have gone through physical therapy, nerve blocks, and my new PM doctor thinks that I will benefit most from the Tunneled Epidural Catheter. I saw there was a post from last June about it, but was hoping for updates from anyone who has had one.
I've been told that I will be admitted to the hospital for several days, and then go home with it. I can not take a shower for the 4-8 weeks that I have it in. I've been told that I will have NO activity while this is in.
I plan on seeing the doctor before I proceed for I do have many questions. He is seeing this as a possible way to put me in remission and I have to say that I am very hopeful.
Last edited by djmcmullen; 02-16-2007 at 04:50 PM.
Welcome to the board. I've had a couple epidurals that were in for one week and then I had one that was tunneled under my skin from my back and out the front/side. I'm trying to remember how long that was in...about a couple of weeks, I think. I know it was supposed to be in longer, but I had some signs of infection and it had to be removed. I don't remember having any restrictions in activity when I had it. I know I had a home-care nurse come a couple of times per week. This was about 14 years ago or so...so I don't remember everything, but that's what I do remember . Good luck with it. I hope it helps you!
Hi Sharon -- The one you had tunneled under your skin sounds pretty similar. I dont think I get a home health nurse, but instead have to go back to have the medication filled. I guess there is possiblities of infection, so its something to watch for. I am just hoping it helps....if it doesnt the next thing he would like to try is the nerve block with alcohol to try to kill the nerves? I dont know the name of that one. My foot could go numb with that one, but that has to be better then the nerve pain and medications that have taken away my life. (maybe?)
The nerve block thing sounds like it could be a chemical sympathectomy. I had a surgical sympathectomy around 1992 and it was a very bad decision on my part so do your research on that if it comes to that (hopefully it won't). It didn't help my pain AT ALL and it left me with side-effects like a very hot foot and a foot that doesn't sweat which causes it to be very dry. I also had temperature-regulation problems after.
Anyway, good luck with the epidural and keep us posted on how you do.
I don't know much about the tunneled epidural catheter, but I am getting very interested. When I get Lumbar Sympathetic Blocks, the bupivicaine seems to help me more than anything else...maybe this would be another avenue.
Also, I totally agree with Sharon on the sympathectomy. Not only can it cause the problems she is describing, but RSD can jump from sympathetically maintained pain to non-sympathetically maintained. Once it has jumped, it can be more difficult to treat (as if it is not already).
Questions regarding the tunneled epidural catheter:
1) This does not seem to be a trial for a pump. Am I correct in assuming that?
2) What are the benefits to having a tunneled epidural catheter? I see a high-risk of infection with this...but it does seem to have some great benefits.
3) Does this work significantly better and/or longer than blocks/single injections?
I would be very wary about killing the nerves with alcohol. My husband and his present doctor are convinced that is what triggered his full-blown RSD. He had an auto accident and many surgeries and was in some pain for 10 years, but was pretty functional. Suddenly about a month after the alcohol injections, he had RSD in the area of the injections, and then it jumped to the other foot two months later. So I wouldn't recomment alcohol injections at all.
txmom, as to your questions...the time I had my tunnelled epidural...it was not a trial for the pump. My trial for the pump was a one-shot deal. I just went into the hospital, got an injection around my spine and waited there for hours, but that was it. I have heard of others having longer trials...maybe something similar to this tunnelled thing, but I'm not sure.
I think the only reason they tunnel it is because the plan is to leave it in there for a month or longer and they don't want the tubing hanging out. That's all I can think of anyway. Yes, there is a chance of infection, but I was on oral antibiotics the entire time the epidural was in.
The effects are longer than an injection because the epidural is connected to a pump (outside your body) that continuously pumps meds into the epidural space so there's no wearing off.
I've also done very well with bupivacaine. I have it in my pump and think that helps me more than the morphine.
Thanks Sharon! I have a SCS that is helping some and I was able to get off all of my meds for a time. However, is seems now that my pain is increasing again (probably due to the fact that for the first 3 months post-implant I was not as active because I wanted the leads to stay in place). I know I can only get so many sympathetic blocks due to the steroids. I would absolutely love to have a pump with bupivacaine in it...it is amazing what that does when they use it in my blocks.
I really appreciate your information!!! I have an appointment with my PMD in a couple of weeks and am going to discuss where to go from here.