I was diagnosed with RSD back in Dec 2007 (full body). After much prayer, I found a neurosurgeon who performed surgery in Sept 08 to reconstruct the nerve I cut in my index finger (who knew that a small cut requiring only 4 stitches could cause such intense pain all over the body). I reinjured the nerve in PT and by March 08 pain decreased to half of what it was before surgery (not bad since I reinjured the nerve). Had a second surgery in late June 09 to bury the nerve in a bone in my hand. Still waiting for the outcome. It is a slow and painful process.

The pain after the 1st surgery decreased to about half (4) of what it was before surgery (7). I suspect it would have probably disappear has I not reinjured the nerve. If I kept my hand still the pain would go down to a 1 or 2.

I am not taking any medications as they made me sick or loopy.

There is hope. Do your research, find a good neurosurgeon. Allot of doctors are not aware of nerve pain. 4 doctors told me that the original injury may have caused the symptoms but fixing it would not solve the problem. In my case, trying to fix the problem reduced the pain. I am hoping this second surgery will eliminating the pain.

With God, all things are possible!

You had better luck at Johns Hopkins than I did in 2006. Through a rheumatologist at the Mayo Clinic who had seen me and considered my dad a personal friend, he referred me to a collegue at Hopkins who was doing some really advanced work on inflamatory cytokines. Unfortunately because RSD/CRPS was not a defined rheumatalogical condition, he couldn't see me, so he passed the file on to a gentleman whom I understood was one of the top RSD nuerosurgeons in the world. He too took a pass (possibly the fact that I had sustained bilateral injuries deep in my feet had something to do with it) and sent it over to the head of the neurology dept., who passed it down the line. By the time I showed up from LA for the appointment, it was with a junior "Instructor in Neurology," who specialized in treating MS. When she rhetorically asked "what is it I'm supposed to do with you," I suggested she call the neurosurgeon who had sent the my file to neurology, to which she replied "what makes you think he would return my call."

As it was the only thing she could do was offer a referral to the folks that specialized in palliative care, but reviewing my history and med list, we both agreed that I was already receiving appropriate care in that dept. The end.

ps - Although they aren't that good with CRPS (especially if you are not living in the immediate vacinity of Rochester MN so that you can be followed up on a regular basis) the business of "what makes you think he would return my call" would NEVER happen at the Mayo Clinic.

Congratulations on your partial recovery from this monster, RSD - I am SOO happy for you!!! It must be so great to be able to get on with your life again!!

Thank you for sharing your story of hope with us. I was 12 years old when I got RSD in my left leg and it has since spread to both arms. Your story gives me hope that things can get better. It's really hard at times to keep hope when things are really bad but without it, we have nothing!

I hope things get better for you even more and you are in my thoughts!!

Alison.

I,too, hope you have a full recover. That would be wonderful. Keep us posted as to your recovery. What state do you live in? Welcome to Neurotalk and hope you a steady recovery, loretta

Hi michael, I also have a lot of respect for the Mayo Clinic. My husband, daughter, and I have been to the mayo here is Scottsdale. We have Barrows Neurological Institute here in Phoenix, but their RSD Dr. moved. The RSDSA had their annual meeting that I attended here in Scottsdale North Hospital. They are going to have a DVD made available to all. When my Dr. retires next year, that's where I am going. The Pain Managaement Center was co-founded by Dr. Lynch. Well, I'll at least meet with him. Sorry you had that experiencs at Hopkins. My Dr. speaks highly of John Hopkins.
What are your thought on HBOT? Have you done any research into it? My Dr. just built two clinics here, and has one in each of his clinics. Hope you have a good weekend-We are having 113-115 degree weekend. Take care, loretta

And hi Loretta -

Just time for a quick note. I've always heard the heat was good for RSD, but that must have it's limits. Seriously, it's hot enough here in So Cal. (except along the beaches) that we thought we were going to loose a lot of plantings on a very steep hilside when I realized last night that our spinkler system had been down for several days. I was out last night - which is when I'm typically more comfortable - hose in hand for close to an hour. Managed to get a plumber this morning on very short notice and we're mostly up, and the rest can be easily done with the hose until we bring out an irrigation contractor ($!$!$!).

As to HBOT there is an almost total dearth of information in peer reviewed journals. I think the last thing in print was a single case report done in 1995, which appears under "Treatments" on the RSDSA Medical Article Archieve page at http://www.rsds.org/2/library/articl...ive/index.html. You can link to the case report directly at http://www.rsds.org/2/library/articl...Hyperbaric.pdf

I have no idea why there isn't more out there, but I've looked.

Mike

"with God all things are possible," is scripture,as wll as,,"all things are poosible to those who believe" and" everything is possible with God",,,Great news are the recovery,,,
keep us informed and in prayer,,,,,,,,,,,,,,,,,,bobber

I had surgery to remove a screw that was literally "getting on my nerves." I could feel it scrape every time I bent my toes. I have much improved since my surgery. I am now pain free. I had many other therapies as well, but I think it was very important for me to get the screws out of my foot. I am very happy to put RSD behind me, and I wish recovery for all of you, as well.

Thanks for the welcome. There is such a great group of people here willing to share their experiences.

I live in NC but the surgeon I saw was up in Baltimore.

I am now looking into possibly trying the inpatient ketamine infusions. I am trying to find a pain specialist near by.

I had heard of one woman who had RSD for 20-30 years and it had suddenly went into remission. She and her husband had gone on a little tour of the U.S. on bicycles. I have not been able to find that article again but it gave me great encouragement.

With God, all things are possible.

Yes, you are all in my prayers. May God heal each and every one of us.

There will be a day with no more pain ....