Hello, I have had RSD when I was younger for 5 years and than in remission completely with no pain, medication or treatment for 8 years until a car accident caused it to come back again. Treatment has changes a bit.since I was younger and sympathetic blocks never really gave relief for me. So, I'm worried that 1.it wont work at all or it will only partial relief of pain or full relief for only an hour.or two. 2. If no relief the dr will say its in my head because the block went good. I'm soooo worried about it not working because it never worked well before and my dr is telling.me if these don't go well its a SCS. Just need to vent and get reassurance. My leg from knee down is twice as big as otber one, 10 degrees colder and major color changes along with other typical things. I haven't walked in a month now. I want this to work, but am trying to be realistic to what may happen if it doesn't. Sorry for the pity party. how have other responded to their lumbar sympathetic blocks?

Hi Mandi. Sorry your RSD came back and that you haven't been able to walk, but welcome to this board.

I am also relatively new here. I had four lumbar sympathetic blocks earlier this year. They didn't work completely, but I did get some improvement. I have had relatively mild RSD in my left foot since march last year, undiagnosed until feb this year.

The first block I had only gave me total pain relief for the short time that my foot was hot immediately after the block. The pain relief was gone by the time I got home. But I started to have less pain at night during that week. My foot also was a lot less cold and less swollen which I think helped with the pain at night. I had a little improvement with each one, but less and less, so I decided to stop them. My perception of the pain is that it went from averaging about a six to down to 3 or 4. I'm now on neurontin which helps even more. I have almost no swelling (on NSAIDs for that anyway) and very little temp difference, and much less pain when I am resting compared to before the blocks.

Hope this helps.

Hi Mandi and Welcome!
Sorry your RSD did not stay in remission. Sorry you had to find this group, but it's great. I'm somewhat of a newcomer myself.
My RSD is left hand/arm so my nerve blocks are given in the neck area.
With me they have tried different drugs in the injection. Clonidine(sp) has helped a lot.
I just finished a SCS trial which at one time I swore I would never do. I really have to think a lot more on whether I ever want a permanent SCS. I'm going to look into "Calmare" or laser therapy in the meantime because they are less invasive.
Treatment decisions are so difficult because there are no definative treatments for us.
Hoping you find some relief

Hello and welcome. I have CRPS started in my left ankle and now is in both legs. I had blocks for the left and at first they worked great. I had to get them in a series. The first one worked for a week then the next like 3 weeks then like 6 months. They didn't take my pain totally away but help a ton. Just remember to stay relaxed during it! You will do great. I hope they help you.

Thanks everyone! It's nice to haven people who understand. I hqd my first block and I was more nervous about it not working and being told it was all my head. When I was first diagnosed 12 yeqrs ago it wasn't an uncommon thing for drs to say or miss the diagnoses. Then again they understand better SMP vs SIP. My block helped with circulation and my.color got better. Not 100% but it looked better. Swelling is extreme still and pain went down from a 9 to 7 or 8 but only lasted a few hours at most. Seeing dr tomorrow and block scheduled for Tuesday. I'm not to optimistic for the second to.work better but I'm not sure if he only did one level or multiple which may make a difference. Thank you all for the warm welcome and support. Mandi

Mandi they should really be done in a series. I had one a week for 5 weeks, unfurtnatley the one give tome had been deckared useless for RSD sufferers 17 years earlier and 7 subsequnet stuides before 2000 had confirmed it.

Hi Mandi, I also have RSD. I am unable to have a block done because of a blood clotting disorder I have, I also have quite a battle with MRSA. The doctors are afraid of the blocks because of that. They are telling me that there is another method besides the blocks. I am told that they can do some type of IV infusion treatment of ketamine. I was unable to go this either because they were afraid the port would cause a MRSA infection because I am so active with MRSA. But this would be my first choice because I am scared to death to have something stuck in my spine.

The doctors did however order a special lotion for me. It is formulated with different medications from your doctor and then made in a special pharmacy lab. I have 5 different medications in mine. It has Ketamine, lidocane and 3 other medications in it. If you are afraid of the blocks maybe you can do these treatments. Just a suggestion, Good luck!

If a doctor told me it's either this block, which will work, or else you'll have to submit to a SCS I would have doubts about this doctor. Since when have blocks been a solution to RSD? By and large they are only temporary. If the only treatment is for this doctor to make $60,000-70,000 off of a stimulator, plug and play and he walks away, I'd find another doctor. You've been into remission before so to me I would hope that you can find it again, but a SCS maybe a permanent solution to a temporary problem. Those SCS do help many but also hurt many and can and does cause spread for several.

One US paper I read said the SCS's cause RSD at the incision sites in 60% of cases

I remember reading this as well but.. I have also read that RSD/CRPS will spread regardless.

When making my decision to go forward with the SCS, the things I considered were: (I know we are all different and I'm not saying this thought process is for everyone but, I wanted to share it anyways.)

1. Without something like the SCS that will allow me to be mobile the disease will cause further problems more rapidly due to disuse.

2. Would spread to the incision sites be worse than not walking?

3. If there was spread to the incision sites would those areas be more effectively treated through topical analgesics like lidoderm patches, voltaren?

4. I could live in fear of spread through a simple injury of daily life and through the normal course of the disease process. If the SCS works for my worst pain in my legs (with or without spread) then I may well benefit and live more actively in all aspects of life for a number of years.. or more.

In the end the benefits of the SCS far outweighed the risk. I went forward with the trial and it was a huge improvement.. no not 100% but at least 50 and often up to 70% relief all depending on what I am doing. I am now on day 10 post op from the permanent and unlike the initial surgery that caused CRPS II literally as soon as I woke up on the recovery table, so far I have not had any signs of spread. Since day 3 of the permanent I have been walking up to a mile 3xper day and also riding my recumbent bike to help control pain without the use of pain meds. Prior to the SCS I could barely walk 15 steps and pain was so high tears welled up several times a day. I have turned it off a couple of times only to have the pain come back in an instant.. it blows my mind how much it masks, I am so thankful for this technology. I know it may not work forever... but I will take FULL advantage of each and every day it may offer me now matter how long. I will not let the fear of spread prevent me from living because as I have been told and have read it WILL spread no matter what at some point.

I might also add for those considering this technology - The implant (battery and leads) are not causing me any issues that I can't deal with. My waistband does still bother the battery site but, I am only 10 days out so maybe that will settle, if not I will adjust or go shopping for things that fit differently. I can sleep on either side as long as I gently lay on the op side. I lean back into a chair but, sometimes add a little cushion for comfort. For me - the adjustments to living with the SCS are small in comparison to the adjustments I made trying to deal with the pain and limitations of CRPS!!! Without a doubt I would do it all over again.

God bless,
Tessa