I've never had nerve blocks done, and just stuck to medication and classical treatment for RSD in Belgium (calcitonin, bisphosphonates). As far as the blocks are concerned, none of the pain management doctors I went too wanted to give me a guarantee that the blocks would make me better. And I certainly didn't want to get worse. Blocks are INVASIVE procedures! I had read Dr. Hooshmand's take on the nerve blocks, if they work, then they work, if they don't, they'll make it worse. I didn't want to get worse and there was no guarantee. I wasn't about to become a guinea pig! No way.

my doc will only do blocks under floro period. there is no other way to do them period .. and micheal is right it is to see if you pain is SMP or not. like me they only last a couple hours but that is worth it to me to have diminished pain for the couple of hours. its a personal choice i think

carrie

My insurance company would only approve (pay for) one block, for diagnostic purposes only. The medical reviewer said that any treatment would be so short it would not be worth the cost, pain effort and time.

On the other hand, the people at the pain managagement company (clinc?) said that if you do a series of blocks in short order, and in early stages, there was a possibility of improvement. My first block was 16 years after onset - not exactly early.

Anyway, I had only one block and the fact that it relieved the pain for 12 hours was a clue that I might be a candidate for a spinal cord stimulater trial.

Mike

Ok for me the nerve block made me worse but for others what I have heard is that it can get you to a point to be able to physical therapy which is very key to recovery of rsd. Then as you gradually are able to do more you become less senstive and stronger.

I have had 7 blocks. They make me feel better. They have never made me feel worse.

I go to a small, highly regarded hospital in Boston that is a teaching facility associated with Tufts. My doc, Joseph Reyes, trained with Daniel Carr, who retired to work in RSD research full time. I trust him and his team very much or I wouldn't go through the trouble of commuting from RI to Boston to see them. I found Reyes through a co-coworker, whose son is unfortunately extremely sick with RSD (6 yrs now) and has been to Germany for the ketamine coma (he's a former patient of Reyes and a current patient of Schwartzman in Philly). I consider myself incredibly lucky to have found such good medical care, especially since my RSD spread full body in less than 6 months. I know that the level of care I am getting is likely only available at the better teaching hospitals and larger medical facilities. There is a HUGE difference between the docs I see in RI and the ones I see in Boston, I just wish I had gotten to Boston earlier than I did.

Before I started getting blocks my RSD felt like it was spiraling out of control. I was a mess. I got my first block last Christmas Eve. I had my 7th a week ago today.

I have had blocks and they helped and I have seen what they did for people around me.

As far as block happy, what about the PM Drs. that are pill pushers and SCS pushers? More money in their pockets for kickbacks and surgeries.

I believe that this is the reason they donot want to do blocks. I believe Anesteologist can do better blocks.

I know some of you have good PM Drs. but I have seen several and donot want one for my care.

I see them pushing SCS's as soon as some people get RSD. Instead of trying less invasive things.

I totally disagree with the blocks not helping an awlfully lot of people. One is for diagnoses but they usually do series of thems to help put the RSD into remission.

Ada

There are people getting better from blocks and equally there are people getting worse from blocks. So it's a 50/50 chance. I'd need better odds, or at least reports on the fact that THAT IS THE treatment for RSD, which it isn't. We're all different and we all react to things differently. We can't start comparing. What worked for one person, might not work for someone else. Blocks being so invasive, I'd not want to recommend them to anyone else on the chance that it might turn out to be a disaster. It's much worse than pills, pills aren't invasive. Calcitonin treatment isn't invasive, neither is bisphosphonate treatment.

I'm surprised there's not more research in the US about Calcitonin or bisphosphonates in the treatment of RSD.

i think that there is no guarantee for any treatment that we do be it blocks SCS pumps or what not .. everyone acts differenly and heck for that fact your RSD can change at any time any not respond to any of the treatments.

i think that its best for each to do what works best
and people are right i have seen in the last couple of years that more SCS are being used very early on and i think that those and pump should be last resort type things

carrie

Hi Ada,

I agree with you completely about what you are saying about some Pain Management Doctors wanting to push an SCS and go down that route straight away after diagnosis, even if ones RSD is only minor.

It seems that a lot of doctors want to do the SCS just to get some money and dont actually think about what risks are involved to their patients. I know that the SCS works for some but for others, it doesn't and spreads their RSD.

Over here in the UK, they will only implant an SCS as a last resort due to the NHS (National Health Service). You have to have tried all of the pain medications, PT etc before they even consider an SCS.

We spoke to my PM Dr about an SCS for me and he said that in my case, he doesn't think it will work as my pain is SMP. He also said that he doesn't do SCS' in patients under the age of 16 as they are too risky.

I don't paticulary agree in blocks but then again, when I had the epidural, I had good relief from it. My pain wasn't gone completely but was more tolerable. I think it just depends on the indiviual and how they react. I was really unfortunate to have a severe reaction from my block.

If someone was considering a block though, I would seriously tell them NOT to inject into an RSD area as it just isn't worth the risk and can make things worse as it did for me. My Doctor and us didn't know at the time of my block that you should never inject into an RSD limb and that was why I had the severe complications I did.

Like with everything with RSD, everyone reacts differently and therefore we cant determine what will work and what wont. I've seen and heard from people that have had good results from the blocks whilst others like me, got much worse from them. I guess it's one of those risks that you have to take to know how you will respond!

Take care of yourself.

It's the exact same with our health care system. Even worse. A SCS is approved only as a last resort (refunded through the health care system) for CRPS type 2, or Causalgia, but not for CRPS type 1, RSD and we are talking about something that costs about 10.000 euro which not all of us can afford. I don't understand why they would make that distinction. CRPS = CRPS whatever type. I guess it's because in Causalgia we are talking nerve damage, maybe that's why they'll refund it in that case. I think it's unfair.

Not that I'd consider it an option, it is an implant, and one that goes straight to your spine. There are risks in that too, risks that some are willing to take, others not. Sometimes I'm in doubt over it, though.

I am sorry about the bad reaction to the block, Ali. Stick with what works for you. But how do you know, right?

I myself went through the typical treatment stages here even though they didn't think it would do any good anymore. At the time I didn't know that much about RSD. I first had calcitonin injections (treatment usually lasts for 3 months), then went on with bisphosphonates. I was also on Tramadol by then. Because it was so bad, they switched me to the heavier treatment with IV bisphosphonates (used in the treatment of recalcitrant RSD) after 2 months. After that it was oral bisphosphonates for months and after that tougher pain treatment.

If only... If only we had THE magical pill that would fix it all.