Sorry you are having a bad day. Been there, done that. RSD can be really tough.

You don't say why you are afraid of the ketamine? Any particular reason? I've have 25 low dose infusions since April 19th and I'm in remission (but not perfect). I was able to return to work FT after a one year LOA because of my RSD in June. I hurt myself in 11/2006 and was diagnosed in 6/2008.

Dr. Philip Getson started me on the 10 day out patient protocol and will always be special in my heart - he is just awesome. Getson is located in Marlton, NJ, only 15 minutes outside of Philly and worked with Schwartzman for many years. It is a MUCH shorter wait to get into his clinic than into Philly; however, he only offers low dose outpatient infusions, not the 5 day inpatient treatments.

In my quest for treatment, I also met Dr. Ronny Hertz at St. Luke's in NYC. He is truly a very nice doc and seemed very knowledgeable. And I tried to get an appt with Richman or his partner - they are reputed to be EXCELLENT. They wouldn't accept my insurance so I couldn't get into the Hospital for Special Surgery in NYC even for a consult.

I would encourage you to try to get yourself in front of the best of the best ASAP. The sooner you are treated the better your chances for remission.

Any questions, please let me know, the best of luck to you, Sandy

Thanks Sandy. I guess the reason I'm afraid of Ketamine is my somewhat lack of knowledge of the drug. I don't like the fact that it is abused as a street drug called, "Special K." I realize that I shouldn't feeel that way, as all of the perscription drugs I am currently taking are indeed, "abused on the street."
I am also afraid of potential hallucinations and other adverse reactions to the drug. You have to remember that I wouldn't take anything for pain for 15 months after I developed RSD. I think that confirms my reluctance to even accept the diagnosis and the changes and losses it has forced upon the lives of me and my family. Nurses sure are bad patients!
I am also concerned about the financial aspect of seeing these Drs.. I am hearing that insurance won't pay for Ketamine infusions. I know I shouldn't worry about these things before I know for sure what will be covered and what won't. I have not worked since my surgery in January of 2009 and feel tremendous guilt about that. I honestly have not even attempted to return to work, as trying to take care of myself and family is impossible many days. I have been a nurse for 28 years and have never been let go of a job. I loved my career and loved my job. Nursing is a big part of me and it is who I am! I know that I am not reliable, as doing anything for more than 2-2 1/2 hours sets me into a pain flare. I also wouldn't want a nurse on narcotics caring for me. I seem to have more bad days then good. Trust me, I live my life and don't stay holed up unless I absolutely have too, but I am feeling so discouraged with this monster of a condition. I hate the emotional rollercoaster it plays. For instance, I may have a few good days and think to myself, "Wow, this may be going away" and then BAM! It's back and full blown!
So sorry to rant and I'm sure most RSD sufferers can relate to what I'm saying, but I am just reluctant to trust anyone new with my care. I have seen so many Dr's that just care about lining their pockets and I feel very comfortable with my present Dr's. I'm just anxious about the whole thing!

Dear D~

And you have every right to be anixous about 'new' Dr.s..As our RSD condition is not black and white and at times..it is not easy to accept new care..but if you can look at it as just enhancing your current care, new set of eyes to join the RSD party..Just allow it to blend cuz when the day is done and the race is over, you still have the ultiamte choice on how things should and will go...

As I read your response to my note..it made me smile as once again something else we have in commom is the lack of meds we use ..I am cold turkey..notta, med for my RSD.. Some call me strong..I say crazy but I have a terrible tummy and I just hate look at things a second time..so I opt out of meds..tryed em all..

I so aggree with Sandy and see if you can get an appt with her grpou of Dr.s also..I know Sandy has been an awesome sport, our true warrior with her treatment..and again time is of the essence in treatment of your RSD...

Hugz, Kathy

So sorry about your job. Most of us have suffered similar losses and can really relate. With nursing there is no room for error, unlike so many other professions.

I haven't hallucinated yet, or had any problems subsequent to my infusion -ever. The better docs mix meds in with the ketamine to offset the side effects of it. I'm also on a fairly low dose - 200 mg - every 3 or 4 weeks. I do get sick to my stomach and suffer from headaches occasionally while the infusions run at times, I have scripts for meds for that, too.

My parents guaranteed payment of my account so I could get on the waiting list for Dr. Getson's clinic. Then just before I started the 10 day outpatient treatments I got approval from United Healthcare (after numerous appeals). But United NEVER remitted what they promised they would. My injury was a WC injury. After many months a RI judge ordered my WC company to pay Getson's bill in full, and ordered that my treatments be continued here in RI with a doctor that had started to perform them. I was his 2nd ketamine infusion patient.

I had lidocaine infusions - 8 of them - before I tried ketamine. Lidocaine worked to some extent for me, but the impact was nowhere near as profound as ketamine. Each lidocaine infusion I received cost as much as a ketamine infusion and was readily approved by both insurance companies. Go figure....

Jim Broatch at the RSDSA can provide you with an updated list of the ketamine providers. It's also online at FB on "Ketamine Klub." I contacted a number of them and made appointments where I could. The docs' offices will tell you what types of insurance they accept.

Hopefully don't have to give up your favorite doc in exchange for your ketamine doc. One would think that they would be able to work together.

If I can provide you with any info, let me know. XOXOX Sandy