i'm glad u had a good experience with dr k. i saw him in may because i had pretty much run out of all treatment options and me and my pm thought i'd be a good candidate for the coma he does in germany... although i am not stuck in bed or a wheelchair- i refuse to let that happen... i did spend a lot of time in bed or on the couch, he said i wasn't a candidate for the coma and that i should just try water therapy.... which i was crushed with that that was the only option i was given when i had had nerve blocks, bier blocks, a scs, laser light therapy, evey med under the sun, pt, biofeedback, and was already taking ketamine as my pain med.... needless to say when i got back home to cali i started looking for another pm that would be willing to do the shorter ketamine infusions and thank god i found dr leverone in la because the 4 hr ketamine infusion has put me in remission, which i've shared. and he's an amazing doc. i had heard good things about dr k and was let down when he said i had to reach the point of being bed ridden before i'd be a candidate and that until then he reccommended water therapy for i was so far past that point and had tried literally everything else that i could or that would be done to me because of my age (a pain pump was out of the question because of the long term damage it could cause my liver).

i'm glad u were able to get such good relief from the nerve blocks. i wish all of us could have gotten that kind of relief from them since that seems to be the first treatment we're all told we should try.

msdrea83;

Could you please send me an pm regarding your dr you found in LA? I live in Seattle and am looking for a pain management dr that will discuss Ketamine - mine won't discuss it. I too have tried numerous blocks, PT, surgeries, etc but not making any progress. I would really appreciate - thanks. I have not found any specialist in the NW so far.

RSDer - Thanks for sharing the good news. Progress like yours gives us that are "dog paddling" hope!

I called pain clinic today to tell them I had taken myself off of the effexor...was ok and not withdrawing... also would they give me a trial of the ketamine ointment..KET..and would just limp along till I could get the low dose ketamine infusion or coma treatment. She about fainted on the phone and said "THERE IS NO SUCH THING AS KETIMINE INFUSION" and what do you mean COMA? I said apparently I knew more about it than she did. She said I was WRONG and she was RIGHT..and there WAS no such thing. I told her to google it and get back with me. HA.. I am done with that place.. they are so far behind the curve they are in the dark ages with CRPS. Just push pills ... it is a PILL MILL ! Can't wait for her to get "enlightened"...
I WILL call Kirkpatrick. I have read about his work for some time. I had connections with Dr. Harbut who pretty much brought the treatment to this country, but his clinic is not operating currently. I think Kirkpatrick is a good bet . I will be at one year in February or early March. Still in the left foot and hasn't spread except up the outside of the leg a bit. The dumb surgeon removed the sural nerve. He was also a really ignorant and ego busting guy.
Thanks for your posting. Keep letting me know how you do.

Best wishes,

Sherrie

RSDer,
I am so happy for you. I have had to deal with RSD since the spring of 2003. It started in both feet & my PM Dr feels it is due to the mess to my back/spine.

I am curious if your insurance would have paid for the ketamine infusion treatment or if it would have been out of your own pocket?

Again, good luck with it all. And I hope you just continue to get better but watch out so you do not get hurt again anywhere. I have heard that RSD can come back with a vengence if you are injured again, anywhere.

msdrea,
Congrats to you also. Again is your treatment from the doctor in LA paid for by your insurance or out of pocket??

Either way I am happy for you. My PM doc over there in Mill Valley suggested one in the Bay area for Ketamine infusions, but he had to be paid out of my own pocket. I just don't have money like that at all. We get by on Jack's SS & my disability payments from SS & CIGNA. Believe neither one is all that much. CIGNA subtracts what SSD pays me out of the total amount they owe me. Thankfully SSD doesn't do the same or we would be screwed. I loose the CIGNA payment when I turn 62 as it is. That is too soon as it is. *sighing*

Good luck & I hope you continue to get better.

DebbyV

Hi RSDer,
I'm new to this site and saw your post from 2008. I was just wondering how you've been doing and if you are still pain free. I'm desparately praying that there is still hope for all of us suffering! I am thinking of calling the clinic in Tampa...

Wonderful news!! I hope it lasts for you. I have been dealing with rsd for about 20 years and I went into remission about 10 years ago, it came out of remission 3 years ago and it is worse now than before. More area is affected. I like you started out with rsd in knee, it has now spread to both lower extremities, feet, hips and spine. I didn't think it could come back either but there is a good chance it will so please be careful. I wish you all the best!!

hijaking this post for LindKaye. I live in the Seattle area and see Core Injury Management. They respect RSD and understand it. I felt like I was so being heard with Dr. Hayes and wonderful women Dr. She has a PA now and he is just as great. The PA just gave me a referral to Rehab for RSD it is located on Aurora Ave. North and work with Virginia Mason anestethioligist group. It is an intensive 4 week Rehab program. You go everday for the first two weeks. They hook you up to a pain pump and your have pain meds while you are doing OT and PT. They have a psych that works with you and they have mirror therapy. After the initial work out you continue to go. I have to put this on the back burner because of my job but plan on calling them. If you are looking for a good pain Dr. Core Injury is located near IKEA in Renton.

Maybe there is hope for me then!

thanks for sharing your success.

JMA...
Just wanted to let you know that RSDer has not posted here since 12-31-08...so you may not get a response.

You can tell when the last time someone was here by looking at their profile. It will say... Last Activity....

Hopefully others who have been to the clinic in Tampa or similar places will post with their outcomes.

I sincerely wish you the best.

Abbie

So happy for you RSDer!!! Congratulations. I live about an hour and 45 minute from Tampa and was going to go to the RSD clinic but my Dr got me an appt to Mayo Clinic on Dec. 28th instead. Glad to know that you have had so much success incase Mayo has no options for me.

Enjoy your life!!!

Renee'