tunneled epidural catheter - Reflex Sympathetic Dystrophy Message Board

tootles73 · 09-11-2003, 07:22 PM

Hello All,
Well I heeded all of your advice (thank-you, thank-you)and got in to see my doctor (3 hour drive, one way) today. He read the panic in my e-mail and has now decided to try a tunneled epidural catheter before doing a spinal cord stimulator. This sounds scary too but not as bad as the SCS. Any advice on that? He will not do any more blocks. Thanks for all your support. Cheryl

savysac · 09-11-2003, 10:33 PM

Cheryl,

I am unsure of the actual procedural name, but about 6 months after I was dx'ed with RSD in my left thigh and foot,(which was 10 years ago) I under went epidural thearapy utilizing a catheter.

For 13 days, every 6 hours, an anesthesiologist would administer an anesthetic via the catheter. This left my entire lower body, from about my bellybutton on down, completely numb. It was a wierd sensation but a wonderful one at the same time. For the first time in months, I was pain free. Who cared that my legs were completely numb?

Although it was bliss to have the pain gone for those 13 days, the outcome we were shooting for was an overall reduction in day to day pain. When the treatment was done, and the numbness started to fade away, I and my PM Doc were pleasantly suprised that my pain was reduced dramatically.

Before the procedure, I was at a pain level of 7-8,( I rarely use 9 or 10, 10 is the worst pain you could possibly ever have)after the procedure I was a constant 2-3.

My doctor told me in his experience, if this type of a procedure is done relativy soon after the onset of RSD, it has a high probability of reducing the RSD pain dramatically. He also said that it was a one shot deal because with each subsequent procedure, the probability of dramatic pain reduction was close to zero.

I was able to live relatively good, with the occasional flare up, for 8 years, until I reinjured my foot, at which point my pain level of 2-3 shot back up to 7-8.

The worst part of the procedure was the actual placing of the catheter and all the needles used to find the proper insertion point on my back. I still have a scar from the procedure on my back, a giant X. During the procedure there was some discomfort at the insertion site from time to time, but I managed ok with the catheter in me for 2 weeks.

I hope your procedure is a sucess and yields the kind of results I was so lucky to experience.

Good luck!

peace

terry

tootles73 · 09-12-2003, 06:40 AM

Terry,
Thanks for your detailed reply. What was it like having the catheter in you for 6 weeks? I was told no showers or baths, just sponge baths. How will I wash my hair? My catheter will be inserted at the neck and run to the shoulder. Were you put out for the procedure? Thanks again for putting my mind at ease. Cheryl

savysac · 09-12-2003, 08:09 AM

Cheryl,

I only had the catheter in me for 13 days, and I was hospitalized the entire time. I was awake for everything as well. I had sponge baths, that was my only option since I was completely numb from the waist down the entire period, I could not walk. So I even used bed pans and pee jugs. I dont know how you are going to wash your hair, good question, my was really short at the time so all I had to do was use a wash cloth to get me by.

They used a very powerfull anesthetic and my bp dropped a few times to 50 over 20. I had an iv in the entire time and whenever my bp dropped, they would give me a saline flush and it would go back to normal with in an hour.

My catheter was located in my lower back and it was taped to my side so the doctor could easily administer the anesthetic. It was kind of bothersome at first, having all that tape and tubing on your back, but after a day or so, I was used to it.

I hope you get great results, how long have you had RSD? What other procedures have you had?

Peace

Terry

[This message has been edited by savysac (edited 09-12-2003).]

[This message has been edited by savysac (edited 09-12-2003).]

tootles73 · 09-12-2003, 04:20 PM

Terry,
I have had RSD since I came out of the anaesthetic in the recovery room following hand surgery on Jan. 8. Of course, even though I had all the symptoms my hand surgeon never picked up on the fact that I had RSD. It was not till I saw an Orthopedic doctor for a second opinion on July 30 that I was actually diagnosed. i have since had 2 stellate ganglion blocks which were pretty much unsuccessful. The first lasted several hours, the second did nothing. The doctor wanted to implant a SCS but I was a little hesitant so now he wants to do the tunneled catheter. i am sort of a chicken when it comes to these procedures. My pain is not that severe, its more the loss of my range of motion in my left hand and shoulder. That and the fear of the pain intensifying and the RSD spreading. Cheryl