Hi

I was "officially" diagnosed on Thursday. I have done 3 nerve blocks already and chose to do 3 more. After that, I am unsure how to proceed. The PM talked about a radio frequency ablation. I have done some reading on those and I am not so sure I am ok with it. I just don't know. I am scared about the future, though I am trying to be positive and strong for my family.

Anyway, what pathways has everyone else taken? What things have you tried? I am still in the 6 month window (though that is closing in). I know I am lucky...diagnosed relatively early, good insurance, family support, etc. It is just so much to digest. I knew the diagnosis was probably coming, but actually hearing it...that was another story. =(

thanks
J

Hi. It is overhwelming I know. I think to take 1 day at a time is very important. I know it is best to get treatment as soon as possible. I do know people though who have had rsd for years and finally found a treatment that worked for them and have gotten relief and a better quality of life.
How do you feel about your pain doctor? I think having one that deals with RSD a lot is very key.
Have you gotten relief from the blocks? Usually I thought they were taken 1 at a time and to see how you do so I am wondering why 3 are already set for the future? Unless you have been getting a lot of relief then it is different I guess. Are you doing PT?
It is hard to lay out a course of treatment because it will depend on how lets say the blocks do? If you have other symptoms or changes. It is important to start with least invasive and then go from there.
I have never heard of the frequency you are talking. The few pain doctors I have seen I have been suggested many different procedures. Some that were not in my best interest and would of caused a lot of problems. I am not saying with the procedure you were suggested this would be the case. I don't know about that treatment but just in general to be careful.
Hang in there and I hope you get relief asap.

It is very hard since each doctor has their own method of treatment and rationale behind it. My PM doctor chooses injections in a series of 6 and here is why it is so aggressive:
"If we do 1 injection and wait 3 weeks to see if there are any long term positive effects, the nerves have had time to get angry again. So I do the injections closer together so the nerves do not have time to get angry and flared up again with more chance of longer relief."
I have to say from my own experience with the injections it is hard to tell right after each one what I felt, but as time passed I definitely noticed the burning, raging fire was no where near as intense. My series went as follows week one and two, 2 injections each week, week three and four, one injection each week. By week four is when I noticed the improvement. I was amazed. I was terrified to have them done from the beginning, but did them anyways. I did have PT after the injections along with my medications regularly. I have not had any injections since the end of April and I am starting to feel the burn get a bit more intense again....so I will monitor the level and talk to my PM Dr. because I still do not want the injections unless I have to have them. As I was going through them I though OMG, these injections are on top of each other, but...it helped.

Again every Dr. is different and has their own method of treatment, so it is hard to say what is right, wrong, good, bad etc. Plus, we all respond differently to everything and our pain is different etc.

I wish you luck!

Sorry, but nerve ablation is just bad news. And any doc that recommends it likely doesn't know what he's doing.

There are many that have had their RSD become much worse after one of these procedures. I would run, not walk, to another practictioner's office.

The best of luck to you....

BTW - ketamine is your best bet these days. See the ketamine doc list that has been posted and bumped up several times.

Sandy

sandy i think i have to agree with you i did have the rhizotomy dont by one pain doctor and I dont know if it was that that made the crps spread down my leg but i have since had a scs put in in december and that does help with back pain but the crps is busy spreading to my right leg now so really would like to know if the rhizotomy helped with the spread of this nasty condition!!

J

Ablation according to my research has no success record. Everything that exposes the area to cold isn't beneficial. Just my humble opinion.

I agree with Sandy in regards to the radio frequency nerve abluviation. Two years ago I had the RF ablation procedure and it was by far the worse treatment I have done. The procedure itself was extremely painful and you have to be awake through the whole process to make sure they are burning the right nerve. The pain would have been worth it if the procedure actually helped but in my case it caused the disease to spread. It made the existing areas that already had the CRPS a million times worse (my legs) and also caused the disease to spread into my back.
The procedure is pointless as the nerve regenerate after 6 months and in my case it came back with a vengeance. If my horrible experience helps others to not make the same mistake then at least it was good for something. Definitly look into other treatments that are not invasive (ketamine has worked miracles for many fellow CRPS patients.
Sarah