I thought that too!!!

Bram.

Thanks Renee,

I would really care to know how your experience is if you follow through! Please do keep us posted. I am finding that those of us with RSD/CRPS that has gone on for "years" do have many autoimmune issues. I did also post that I have tested positive for some genetic mutations that tie into neuro and vascular disease... and I'm following up with extensive autoimmune testing. No one has a road map yet for what to do, but we are providing a great start. Bravo Renee and all of you who push through the barriers to understanding and treatment. May we all keep each other informed. So far, my biggest marker is MTHFR in relation... it is common in the population and strongly affects the ANS. While perhaps not curable,it can be treatable!

Best for all,

Hana

I had a closed reduction on my right wrist, after breaking it in several places, after slipping and falling on the ice. One of the bones was almost poking through my skin on the top of my hand. There still is apparantly a floating fragment in my wrist, which cause sharp pains sometimes, but apparantly the dr who did the closed reduction thought this was okay. I have a crooked wrist, because it is malaligned and is immobile. I cannot bend it at all. And I cannot bend my fingers all the way. I was diagnosed with CRPS I by a pm dr about four months after the closed reduction. It's been a nightmare ever since. They think my rsd was triggered by the closed reduction on my wrist.

Thanks for the heads up. I just got an email from them today to call them to set up a consult. My husband is going to help me with the call because I have trouble comprehending things with all the pain meds I'm taking. I don't understand insurance either. Even without pain meds.lol. My husband does though and will talk to them. I'll let him know what you said. I don't want anyone touching my spine. I'm not as brave as Tessa with that Epidural procedure that she did. I have scoliosis and am too afraid of complications. But if they want me to try an infusion in my good arm with an IV, or try a new drug like neurondrate (sp?) I think I will let them. I'll keep you all posted. And thanks again everyone for caring so much.
PS: Welcome GotNerve! I like your name too. Cool Man.lol.

Will do! Im hoping to go to PA and try the IVIG aswell, as they also have the trials going on. If im not a candidate then I want to look at all options, which would of course include ketamine and I def want to talk to them about what Tessa is trying. Im not looking for a "temporary" solution, im looking for a more "permanent" one and Tessa so far has that down! I know all of this is experimental, but gotta try something and im looking for the something that's gonna last longer. Ive been in pain long enough and im tired of suffering. There more humane to animals then they are to people.

Thanks Tos. And thanks for letting me know about this institute. I will pray that you have success with your dr appts too! I think there is hope for all of us as long as we keep trying to find a cure. It's when we stay stagnant and let our fears stop us from trying that we don't move forward. My thoughts and prayers are always with all of you. WE CAN DO THIS!!!!! With love, Renee.

Good luck!

Let us know how the consultation goes

I have had RSD or whatever name they want to call it for almost 30 years now. RSD was the new name when I started out with it.
There were 2 types then with different names, plus different stages.

All these years and no progress..

I don't want to pour cold water on anyone's interest in this pain centre but it came up ages ago on these boards when it was first opened and I researched the doctors they have. I can't find my post so I will just very quickly say that I don't think this place really has anything like the specialist CRPS experience it claims.

The lead doctor's key clinical specialism is implanting spinal cord stimulators and spinal pain. That should tell you what the general "tone" of their treatment approach is likely to be. There is one doc who claims to have specialist CRPS knowledge but he isn't one of the regular names that appears on the quality research or clinical papers. The others doesn't seem to have any particular CRPS experience.

Don't let the fact it's called an "Institute"lead you to think it is necessarily anything special. It is a pain clinic but I don't see evidence of any true specialist CRPS expertise. There are specialist centres in the US but this isn't one of them.

Before spending a lot of money and energy, I think it would be wise to do plenty of research on the clinic and its doctors. If you want to see CRPS specialists, I think there are other places you could look at in the US. You need to think really hard about what exactly you are wanting/expecting to get out of going to see these or any other doctors at this stage in your CRPS journey. Be honest with yourself about that and search to see whether there is somewhere else that could suit your particular needs and goals better.

You can check the inclusion criteria for these trials online. This lets you check all of the specific criteria that you must meet in order to qualify for potential entry into any given trial. You will also find a list of all of the factors that would specifically exclude you from participating. These are listed on the database. It may save you some time and effort later.

Make sure that if you are considering involvement in a clinical trial, it is officially listed and regulated.

By all means take up the offer of a free initial consultation and find out about this clinic but remember there is no such thing as a free lunch!!! If it looks and sounds too good to be true then it will be too good to be true. Don't be pushed into anything. Too often places will promise miracles to get you hooked in but then the reality is something else entirely.