Hello Everyone, I am new to this site and hope that I have something to contribute as well as learn from being here. I have had RSD for 4 years now and and in the beginning stages of making the decision of wether to amputate my leg from the knee down or try and continue to deal with the pain, medication, open wounds and constant Dr. visits. So far I have had 24 surguries on my ankle since 2003. I fractured my ankle in multiple places and felt blessed just to have it pieced back together again. Now, I'm not so sure. My last surgery was to place what is called a "Matristem" graft on both of my wounds ( on either side of my ankle). Both wounds have been non healing now for over 2 years. The Matristem graft is the bladder of a pig, yep, not kidding, and also has stem cells. So far I have had small improvement but this graft is the Dr.'s last choice as we have tried everything else and there is nothing left to try. If this does not work, and heal the wounds I don't think I can continue to deal with my leg as is. I have had every other type of graft, including my own skin, HBO for 45 days, all sorts of medication, gels, you name it we have tried it, I think. Please let me know if you think that you have had sucess with something. I would love to hear from you.
Thanks,
joannemc

Hi Joan, I am so very very sorry about your wound that won't heal. I have heard of the graft from the pig. Was the gel a compounding gel? When I had a couple lesions that wouldn't heal, my Dr. had me sit a few minutes in warm water and towel dry. Put nothing else on it, as moisture keeps from healing. Mine did heal. This was like 10 years into my RSD. I know you have to be careful of sepsis and infections. Do you have Dr. experienced in RSD>
If you look at the last couple of pages on neurotalk, there have been discussions about amputation.
We welcome you to NT and will be' here' for you in any way we can. Sounds like you have been thru a lifetime of pain.I hope we can help in some way. What state do you live in.? I live in Arizona-15 years of RSD-full body or generalized now and also internal. I'm 62 married 43 years-one daughter 31 and son in law-we love like a son. I'm grateful for their support and support of friends inside and outside of RSD. Am careful with those outside of RSD, as it is a difficult thing to understand. Have a wonderful Dr for the last 6 years neuro, psych, pharmacologist, and internist all in one. He has HBOT in new clinic he has just built, but have tried it yet. Did you benefit from HBOT? He has had some amazing results. I got RSD following surgery, but wasn't diagnosed for 4 years. The internal is pretty rough, now researching compounding meds for the hot spots, what feels like 105 degree heat in various parts of body.
RSDSA is a great site for information. Also rsdrx.com puzzles list is a great site-Dr. Hooshmand from Florida practiced RSD for 40 years-retired now, but website still up and great information. The puzzles are actually questions-150 some of them with his answers. Puzzle 127 discusses internal RSD. There is another Dr. in Florida that has taken many of his patients.
The Trial study for Ketamine was done here in Scottsdale, near my house. I had a girlfriend that assisted the 5 Drs. Dr. Swartzman, Dr. Harbut, Dr. Correll and couple others. I believe ketamine is in the coctail of meds for the compounding med, that I want to try.
I take Vicodin for pain, Lorazepam for anti-anxiety, which helps with pain, 2 high blood pressure meds, seroquel xr 150 mg for sleep. My ambien quit working and my Dr. was iin charge of a 200 person trial study for seroquel for fibromyalgia and it worked well for sleep with some people. I was on 300 mg during the study and slept 10 hrs. straight. I didn't need that strong, so cut in half under my Drs. direction. Also take cymbalta for anti-depressant, which also helps with nerve pain and sleep.
I used to take 3200 mg of neurotin and it stopped my electric jolts, jerks, and spasms. Changed to lyrica and it worked a little better. Then gradually went off and the spasms, jerks, jolts, gradually went away for the most part.
The weather 9 months out of the year is great for RSD. 3 summer months are just too hot. It's 109 mid September right now, which is unusual. and doesn't rain much.
Physical Therapy, Massage Therapy, Desensitization, Swimming, Visualization, Meditation, Positive Thinking, Various distractions, like tv, comdedy, journaling, counseling, all have helped me to be grateful for where I am in life. I'm grateful I'm mobile, with exception of one hand, partially paralyzed-late diagnosis. Learning to be our own advocate saved me-I was misdiagnosed and knew it-traveled to a good Doc and diagnosed in one minute with RSD> So important to be our own advocate. I've written Dr. Oz, about having show on RSD. A support group can be of great help. Going to RSDSA you can put your zip code in and receive the closest support group address and phone number of leader. We have had so many great people speak to us.
Well, sweetie, please stay with us. We'll looking forward to hearing from you, One of your new friends, loretta with soft hugs

The pig bladder just might work. My friend has had over 80 surgeries to hold his guts in after getting his arm ripped off and his guts ripped out. After all else failed they did it with pig guts. I saw a picture of him on my facebook today and he looks good. I think it might be working for him so I am thinking it might help you. Let's hope anyway.
As far as amputation, the symptoms are still there. I don't think that is the answer. I know you hope it would be but I doubt it.
Keep trying new things. Hopefully there will be an improvement as time goes on.
The weather has changed here and my RSD is doing it's thing and boy is it hard to keep my mind off of it and how to get it to calm down.
There is no easy answer. I was doing ok all summer except for my CFS from the heat and now I am in a total flare.
Glad you found this group. You will get some new ideals from here.

Ada

Hi Ada, just want to say how sorry I am you are in a flare. It's tough I know. It's still 109 degrees here in Arizona. As I have full body and internal, have hot spots like 105 degree skin temp. I'm working on a compounding pharmacy cream between my Dr. and a Florida pharmacy.
Please know I'm thinking of you and hope it's a short one! your bud, loretta