Hello all. This is my first post, and first time really on this board. I apologize in advice for this very long post right now...but I need to set some background.

My fiancée has had RSD for many years, in 2008 she went to Germany for the coma treatment and it worked wonderfully! She was completely fine, no pain at all, back to everyday living for her.

Earlier this year (around April) she had a lumbar puncture done at Hahnemann, at Dr. Schwartzman's recommendation, for suspected meningitis. She did not have meningitis; however, the RSD came back immediately in her left leg with tingling and numbness during the puncture. She told the doctor immediately about the loss of feeling in her leg and he shrugged it off with "Oh it'll come back, don't worry." Needless to say that after the procedure it did not come back. She could not move her left leg at all. Dr. S admitted her into NICU for 2 1/2 days of inpatient ketamine. She was able to walk when she left the hospital and she was feeling alright. Not completely better, but better than before.

By the end of May, however, the RSD was back in her left leg. Even though she went for outpatient ketamine infusions in June, July and August for 4 hours per day for 3 days each month, the RSD has continued to spread.

Dr. S recommended inpatient ketamine for a period of 5 days, 24 hours per day. That was in October. After fighting with the insurance company and appealing their initial denial she was approved and set to get the treatment this week (on Monday).

Hahnemann called on Monday to tell her to come in for the treatment. She was taken in right away, blood work was done quickly, the IV port was done easily and all seemed to be going well. Right after the port was installed they told her "We don't have a bed ready, so you'll need to wait in a room."

They told us that a bed could open in a few hours or in the early morning. We really didn't want to wait in the hospital, but they insisted it wouldn't be long.

During the wait a neuro resident came in and started to touch her foot and leg and basically causing a great amount of pain! We told her she needed to stop and not to touch her. After this ordeal she was in so much pain (worse than when she arrived!!). After a few more hours of sitting on the most uncomfortable bed she couldn't take it anymore. Her back, legs, neck, everything just started hurting more and more. She said her pain went from a 6 to a 9 in those short hours. After asking for a bed pad or a float and being DENIED one, we immediately asked for a discharge. After waiting an hour for them to find a doctor to sign off on the discharge we left.

She can't walk, she can barely move..she cant sleep..it's horrible. She's now in constant pain again. I asked her if the hospital calls with a bed open if she was going... she said no. She's terrified that they will end up paralyzing her again or killing her. She has a very close friend with RSD who had a heart attack and had to be paddled back because the staff messed up the procedure. Her last 2 visits she's ended up leaving the hospital in far worse condition than she started...

We've been attempting to contact Dr Rohr in Germany again to see if we can get treatment scheduled outside of the US but he has yet to respond to us (we mailed him in the beginning of November), plus the costs of the treatment of course. I will be mailing him again tonight with hopes that he responds soon.

Sorry for ranting so long, I'm very frustrated and worried and I feel so damn helpless...but what I need advice with is what can we do now?

She does not want to go back to Hahnemann (even though we do live in Philly) unless someone (me) can be there for the entire time to make sure the staff doesn't muck anything up (which most likely will not be possible), and we don't have the funds right away for an overseas trip (we do have a good amount, but not enough yet). Is there anywhere else in the states that does the inpatient? I'm very new to this whole thing, so I'm very scared for her...

Please help...I cannot stand to see her this way..

Thank you everyone!

Very Sorry about the mess you guys are going through. Maybe you can give Tampa, Fla a call. Check the link below. I hope this works out for the both of you!!

http://www.rsdhealthcare.org/

Germany banned the Ketamine Coma in 2009 after at least one death, I tried e-mailing the clinic where it used to be done and never got a reply as far as I Know it's only done at Hospital san jose tec de monterrey Mexico on a trial basis I think the cost was around$75000

Have you contacted Dr. S and/or his staff to complain about the treatment she received? From the reading i have done, it is not unusual for a flare up to come on after a remission and that a series of nerve blocks, or as Dr. S suggested, a repeat of the ketamine treatment could put her back in remission.

If it were me, I'd start with Dr. S's department, explain the anxiety your fiance is experiencing and see if she can talk to someone to get her the care she needs. it sounds like she is having a really hard time with this ~ fear, anxiety etc!

Wishing you all the best and hoping that you can reach a caring soul at the hospital who can ease her fears and pave the way for a better coordinated treatment schedule for her.

Love,
Jenny

We know that the coma treatment is banned in Germany but we know they still do higher doses there..

Do you know where I contacted the german embassy who gave me details fo the clinic who used to do the coma. I e-mailed them to find out if they did anything else and they never replied