[Ccm47]

Hello. I've come upon your forum a few times since being diagnosed a few months ago, and figured it was time to join and introduce myself. I've had rsd in my left foot for a litle over a year, but was only diagnosed in February. Having read some of the posts here, I know I have been very fortunate because my rsd appears to be more mild than some. This is probably part of why it took almost a year to be diagnosed. My foot was cold, and would swell every day, and hurt when I walk and by mid morning would start to hurt constantly until after I fell asleep at night. But I don't have any problems with pain from things touching it, and it doesn't hurt in the middle of the night or when I woke up - just when I start walking. I have had to cut back on my walking and don't exercise any more, but am still able to work and grocery shop and stuff - just painfully. And the pain has never been really horrible - again, I've been lucky.

I've had 4 sympathetic nerve blocks. They have helped with some of the persistent pain, especially at night. And the swelling and coldness are a lot better. My foot still hurts when I walk, however. I am scheduled for a radio frequency abelation (sp?) next week. I have read some bad things about it, so I'm wondering what I should do. My pain md is confident that it won't make it worse. What do you think?

Ask if he is so confidant will he put it in writing and accept responsibility if things go wrong

[birchlake]

Really, really do your research before you agree to RF ablation. And that means MULTIPLE OPINIONS, especially for a procedure like this. My personal belief is that RF ablation doesn't pass the "risk vs rewards" question.

It sounds like you are doing relatively well. I didn't see anything in your post about physical therapy and medications. That can be the cornerstone for making your situation better. Ablation has the potential to take it the other direction IMHO.

Good luck to you!

[Brambledog]

Hi and welcome!

Ah the foot CRPS, I've got that and it's a bag of fun I hope today is a good day and you are getting on well generally.

I would echo what's been said and apply it to ANY new treatment! There are some very good doctors, an awful lot of so-so doctors, and some very bad doctors. You can have a doc who is wonderfully supportive, but not that we'll informed about treatment, a brusque doc who makes you feel six inches tall but is damn hot on his CRPS research and knowledge, and any other variation. Few deserve complete blind faith.

Research any treatment you are recommended, and see what the general feeling is. You will come across extremes of view in both directions, but if you keep going and try to stick to well known sites you can generally build up a feeling about things. if you have concerns, ask questions of your doc until you are satisfied one way or another. Always check before a new treatment - CRPS is not something to take any chances with, and there are treatments than can make it worse....not something any of us want! I agree with the physio thing, it's definitely something that helps (as long as the physio has sense lol).

Good luck and I hope things work out for you.

Bram

[Ccm47]

Thanks everyone for your feedback. In terms of research, I didn't find any peer reviewed publications about rfa, but I did see that it is being done at an number of pain intervention clinics. Does anyone know of studies that report on it?

In terms of making it worse, all I saw was comments from people who that happened to. I appreciate the disappointment and sense of betrayal that would lead to. I wonder if those people had more severe disease then me. Dos anyone know if those same risks occur for more mild disease? Also, I wonder what proportion of patients have an adverse outcome (which is why I am looking for studies on it). I'm sure most of you have been as disappointed as me at the lack of research out there, however.

[ginnie]

Welcome to Neuro Talk. Glad you have been reading the posts. I have PN or RSD in left foot and ankle as well. My doctors have tried pain patches, mild pain medicaiton, and basically to leave it alone unless it gets alot worse. Mine has not spread. I agree with the other post, don't do the invasive treatment, unless your pain is such it warrents that. I was to have surgery again on the ankle, docs said No to anything that cuts or stabs including shots into the ankle at this point. Get it in writing that he would accept responsibility for the proceedure if it didn't work. I would also seek another opinion before doing that particular proceedure. I play it safe at this point. I hope what ever you decide to do, is right for you and that it works. ginnie

[AZ-Di]

Welcome!
Everyone here is good about sharing their experiences, and there's lots of support too! I found some good research at RSDHope.org. and they promote awareness. I think that's important because especially in the medical profession we need to be taken more seriously for treatment.