This question goes out to all, I saw Dr. S. In Philly at Thomas Jefferson Hosp., He was great, I even went back and saw him a couple years later and he was still great. I then heard he was asked to leave Thomas Jefferson because he seemed to somebody that he was testing different treatments on people Trials) Without the patient knowing , some got the real med and some got placibo, I know he told me I was getting the real stuff because I had flown in from Florida. He was great for me at those times, then a couple of years later I was told he was asked to leave, so he went over to Hanneman, does anyone know if this is true? He seems to have changed according to these boards here, and what he's doing is scaring everyone with the rotten care at that Hosp. I don't get it. Any replies?
Your friend Wendy

as this information comes on the heals of my insurance company approving me for the 5 day Ketamine trial..(this past Saturday, I got approval paperwork) with Dr. S @ HH.... I was sick when I got it as Iam not sure what to do now that the ball is in my corner... but now Iam positively going to re-think my approach.. it ain't pretty living and getting worse as I am right now but Iam thinking I have made it these 3 years.. don't want to self distruct myself anymore than mother nature plans to anyway! My decision may not be so hard after all!

So sorry Reddawn as your post began so optimistic and appreciative but I think knowing these things is important and better now than later..See I always see that half empty/half full optimistic stuff! There is a god! Have faith in that things do happen for a reason!!

Love, Kathy

Why not change to the HSS in NYC if you can?

There is another RSDer in RI, who has CPRS II, who had the 5 day with Dr. S in Philly in April, and is going back in Nov. He loves Dr. S and had no problems with his stay at Hahnemann. The 5 day helped him enormously, the change in his condition was so remarkeable. What may have hurt him was the lack of enough boosters, he didn't go back often enough for them. If you send me a PM I can try to get you in touch with him if you'd like to talk to him privately.

Do you know a nurse that could stay with you? And make sure you are cared for properly? The issue with Hahnemann seems to be the nursing care more than anything else. Some of them just don't care. I don't know if I would ever pass up a chance at ketamine to maybe get better. I know what a difference it has made in my life, even at a low dose. You won't know until you try it.

Good luck with whatever decision you make, XOXOX Sandy

It sounds pretty but the insurance gave me minimal approval however..For the Ketamine and only 2 visits for Dr. S... which is way not enough to get me thru the boosters as well so.. they dangled the carrot but short on a line... also..burns me is so many people, RSDers can use this intervention so badly..but I only got this approval from pushing with the right people..back door..I think everyone should be given this opportunity..

Hugz, Kathy

I agree. It stinks. After I had the approval from United Healthcare (they denied it at first and I had to appeal several times), they assigned a nurse case manager to my case. Eventually my case was approved by WC, so United never had to pay in the end. But when they thought they were on the line for the treatments, the nurse called me periodiocally to see how I made out. I told her about the definite improvement in the quality of my life, the reduction in the my meds I need to take on a daily basis, and my return to FT work after a year's LOA. Everything is NOT rosy, but so much better. She noted it for future reference and said that my case notes should help future RSD United Healthcare patients that apply for ketamine treatments.

I am always kept on a short leash by WC. My last approval for ketamine was only for 90 days, which runs out tomorrow, when I will get my 27th infusion. Then I will go back to court in a few weeks, where The Hartford seems to have no problem spending gobs of $$ on legal fees (the CPA in me keeps saying stupid stupid stupid - I am off their payroll and back to work!!!!). But I have resigned myself to the idea that I will need to fight for what I need to stay functional for the rest of my life. It's been like that since I got sick. WC is mean and evil and is absolutely nonsensical,....so I will fight.

Once you have completed the 5 day inpatient program, you could start the process of trying the get the boosters approved for as often as you need them (4 weeks perhaps). There may be a place closer to home where you could get them. Don't ever, ever give up trying to get better. I am glad that I didn't. Persistence, support from loved ones, and strong coping skills are key.

Please take care, XOXOX Sandy

Hi, I am very newly diagnosed with RSD and am researching the ketamine infusions. I got a copy of the ketamine docs list and in particular was interested in the NYC area possibilities [I am out of state so am exploring what sound like the best options, I guess wherever I can get in?]. I have read old posts that HSS was not taking new patients, but is that not the case if you [Dawn] are scheduled for an upcoming infusion?

I'm looking for some basic guidance for how to go about this -- such as, I have heard good things about HHS and St. Luke's, a few nightmare stories about Philly, and that's about it; which others should I look into?

I have a consult scheduled with Dr. Kirkpatrick in Tampa to discuss the three-day outpatient infusion, though it sounds like those done in NYC and in Philly are 5-day in-patient, so I'm not sure what to pursue? Anyone had success with that particular treatment or know of anyone who has gone to the RSD Institute?

Do I just need to start calling and see if I can set up an initial consult? I also read on other posts how people had submitted applications to get on a list? I'm not sure of the protocol for making this happen.

Anyway I'm rather ignorant of how to proceed so any suggestions would be helpful. Thanks much!
T.

Hi T,

From what I have heard and all my research told me, Dr. Richman and Hospital for Special Surgery is the best of the best in NY. I actually live in PA but travel to NY for Dr, Richman and am happy to do it. I actually got in to see him by accident in a way. I had scheduled an appt with a neurogist there before I was dx with RSD amd had hoped to get helped with what I thought was failed neck and back surgeries. As soon as the neuro had spent about 15 minutes with me, he walked over to Dr. Richman's office to see if he could see me immediately. Both Dr's were apparentely shocked that none of my former DR's had ever diagnosed me with RSD as they felt I was severe and rapidly deteriorating.

So, that's kind of how I got lucky and got into see Dr. Richman. The severity of my condition is what I supposed got me bumped up so quickly for the infusion date. Dr. Richman also made the contact with Dr. Schwartzman for me for the boosters and his staff really has handled things incredily well and quickly.

SO..if you can't directly get an appt with Dr. richman, perhaps try settiing one up with someone else in their department at HSS fiirst?

I do also hear Dr. Getson is very good and I have also seen quite a few other's mentiuoned in these forums.

Best advice I can give you is to be persistent, be your own advocate and fight for an appt like you're fighting for your life because frankly, you are fighting for your quality of life if nothing else.

Wish you all the best,
Dawn

Dear Truffle,

I started with the same list from Broatch. I called the docs that were within driving distance of where I live in southern New England - NYC, NJ and Phila. - and booked several appts with the docs that would take me and my WC insurance. Dr. S. I had booked a year before, and he was 18 months out when I called. And I had already been to the Beth Israel in Boston and knew they weren't taking any new ketamine patients (their protocol is awful anyway, but my heart was still broken when they rejected me the previous year! Those docs were MEAN!!).

Anyway - your docs will determine which protocol - the outpatient or inpatient - they think you need. I was recommended for the 10 day outpatient by both Dr. Hertz at St. Luke's Hospital in NYC and Dr. Getson in South Jersey. (I never made it to Dr. S., I had had a good number of infusions by the time his appt. rolled around, and was feeling pretty good.)

I picked Dr. Getson because I liked him A LOT when I met him and a number of my family members live nearby. I grew up in South Jersey, and my parents still have a beach house at the Jersey shore. 3 of my siblings live and/or work in the area. So I had a place to stay and someone to take care of me while I received my treatments. My father gave me a ride back and forth from the Jersey shore area over and over again!! Getson has a great reputation, and all he does is RSD. He was truly great and I have no regrets with my decision. And I had my family to help me for the first few months that I was getting my ketamine infusions,

I was not sick enough to require a 5 day inpatient, but likely would not have gotten back on feet without the 10 day outpatient. I have CPRS I, it started in my shoulder (brachial plexus) and spread to my neck and the occipital region of my head. Later it spread to my right leg and just this year it started in my left foot. I have trouble in the cold with my hands and feet and face and suffer from hideous migraines at times.

I returned to work FT in June, 2 months after I started receiving the ketamine infusions, and one year to the day that I went out on my LOA. I am still getting my boosters, (in RI for the past few months). I am doing well, all things considered.

Let me know if there is anything else you would like to know, and the best of luck to you. XOXOX Sandy

Dawn,

I'm so sorry to hear about your car accident. I hope you are doing okay and I pray the possible legal issues will work out for you.

Try to just concentrate on the upcoming ketamine. I'll be thinking of you Nov 1st !

On my way to the hospital now, will be happy to share info with others if anyone has questions on the ketamine 5 day.

I would greatly appreciate prayers. I'm still somewhat skeptical but so very hopeful at the same time.


Dawn