there are other docs too...
 

who have trained with Dr. S and can also do Ketamine infusions. When I called earlier this year to Dr. S I was given the same long-wait story - but there are several other MD's in his group who have much more available openings for consults - one in New York as well as several in Philly. I took my wife to Dr. Zahid Bajwa, the director of the Arnold Pain Center at Beth Israel Deaconess Medical Center in Boston (the teaching hospital for Harvard Medical School). There she received a consultation appointment within a few weeks and offered both in-patient and out-patient infusions.

But be forewarned - most medical centers, including Dr. S, will only consider the low-dose (max of 40mg/hr) infusions whether or not they are done as a continuous five day in-patient or a 2-4hr outpatient infusion. These, while good enough for some people, do not provide long-term lasting relief for most and must be repeated. Dr. Kirkpatrick in Tampa, FL (and a couple of MD's in Los Angeles) are the only ones I am aware of who are pushing the envelope on the higher, though still within the range of conscious sedation, outpatient infusions, reaching 135mg/hr for 4 hours giving a large Ketmaine dose. After a three day series of these with Dr. K, my wife had a remission of the RSD pain which lasted about two weeks. Unfortunately, like with many other full Ketmaine coma participants I have spoken with or followed, for many Ketamine is but a patch and not a cure or long term remission. The vast majority of the Ketamine coma participants that I know of (some personally) continue to require regular booster infusions to keep their symptoms and pain managable - and often these boosters become larger and larger doses (very frustrating for me to hear too!). I often thought that the infusions were a cure with occasional boosters but after the very large expense of the coma I know people who have spent another $75k plus getting follow-up boosters. Until Ketamine becomes more widely available, as in your local MD for a booster, it's limited for people such as my wife.

Hope some of the contact info helps.

18-24 months?? Woa!!! About 5 years ago I had an appointment to see him and from family matters I had to cancel the appointment.. Since I am just in too much pain to make the trip to Philia to see him.. Now my new doctor wants me to go and he doesn't understand the wait list Swartman has, nor understands I just can't make the trip... If anyone lived in northeast PA and knows a doctor who treats RSD and Poly-Neuropothy, it would be Greatly appreciated...

Blessings,
*~~~Jules~~~*

Ketamine
 

I am also new to this. I have had TOS for 10 years, had been pain free for 4 and now diagnosed with RSD. I got an appointment with Dr. S in February and am set up for the 10 day infusion in September. I had seen him before. He had diagnosed me with the TOS so I don't know if being a former patient made a difference in getting an appointment. I only waited about 6 months. He wants patients off pain meds but I am in so much pain I find it impossible. I take neurontin which I find to be completely ineffective. I have experienced coming off about a dozen meds before and it wasn't pretty. I had to spend a 2 weeks in Columbia Presbyterian Hosp in 2001. Actually, I checked in on 9/10/2001. I witnessed from my room the 2nd plane crash into the World Trade Center. That didn't help much. My family was in NJ and I couldn't reach them. My husband had to pick my children up from school because no one new what was happening.

I am more than willing to get off of pain meds but I can't do it while still being in such horrible pain. I have to get up and get kids ready for school and go to work, just like I am sure you all do. When we have obligations we can't forego, it makes it tough. Especially when you are told you have to wait so long.

I really like, and trust, Dr. S. I hope this is the answer but I am still confused about ketamine and am still doing research. Linda

Question about Dr. Leverone and Ketamine
 

This is a question regarding Dr. Leverone. I live in California and have been wanting to discuss the option of Ketamine infusion with a doctor, but I did not think there were any doctors in this state who did that. Do you know if Dr. Leverone is still doing Ketamine infusions?
Could you tell me a little more about what you did with him. Was it an outpatient procedure? How many days did you get the ketamine for? Did your insurance pay for it? Are you still doing well or did you have to go back and repeat the procedure later on?
Sorry for all the questions, it's just hard to find anyone in CA that knows much about it. Thanks for your help! -Niki

There is a list of docs that do ketamine on facebook at "ketamine klub." It was provided by Jim Broatch of the RSDSA and it is fairly current. I think there are 3 docs in LA that offer ketamine.

I was initially rejected, and needed to appeal more than once, to United Healthcare for coverage for my ketamine infusions. They never provided the level of coverage they promised, despite numerous phone calls. After being initially rejected, my case is being heard by the RI WC Court this Thurs and I expect it to be approved based on my latest IME which was favorable for the ketamine. That will make the United Healthcare coverage unnecessary -thank goodness, because the patient responsibility amounts on my statements are enough to make me bounce out of remisison into one of my old flares....

Try for insurance pre-authorization for the ketamine and see what happens. You won't know until then. And most of the docs are really savvy on how what insurance companies cover.

As far as my infusions go - I have had 20 since April 19th (very low dose, and very close together), and expect to now wait about 3-4 weeks until my next 2 infusions. Eventually I may be able to go several months between them. I expect I will need them the rest of my life. I won't know how I am going to do until I've gone for a while without one...

The very best of luck to you...xoxo Sandy

Hi, my appointment wait is 2 years.

Ketamine infusion
 

Thanks Sandy for all that info! I really appreciate it. Dr. Leverone in LA does not take insurance; it's $2000 a day for the outpatient ketamine infusion. I'll let you know if I end up trying it.
Pertaining to the original post about Dr. Schwartzman. I contacted him today and got an appointment for 2 years and 4 months from now. I sure hope I find something else that works by then!

Dr. Getson trained with Dr. S. in Philly - his office is less than 15 miles east from there. I also had an appt with Schwartzman that I had made 18 months ago that I just cancelled - it was for the end of this month. Since I have responded well to the low dose treatments, I see no reason to get another doctor involved (and spend another $500) at this point. In contrast, I waited about 4 months for my initial consult with Getson after sending him my package of data.

Good Luck, Sandy

Hi, 4 years ago (Sept 2007) I received a cortizone injection to alleviate low back pain and there was a problem with the injection. As a result I now have complete systemic chronic pain, on full disability. I made an appt with Dr S immediately (in Sept 2007) and was on a 3 year waiting list. I just recently went to my appt (Sept 2011) and he recommended the 5 day inpatient ketamine infusion. There were about 4 pre appts required prior to scheduling the ketamine. These appts took 10 months - my ketamine is scheduled for June 20, 2011. Long winded way of confirming that yes the wait list to meet with Dr S is long and the process (if he recommends you for K treatment is arduous and timely) I would suggest getting on that wait list; however I do urge you during this wait time to continue seeing tons of Drs and getting on a PM plan. Personally, that is what I did. I've seen over 10 Drs, tried many traditional and nontraditional methods of managing the pain. While I feel lousy daily and I do not recall how it feels to be pain free, I must admit I have learned a lot about my pain, how it affects me, my family, my friends and neighbors and most importantly how to manage it the best I can. I wish you well in your journey.

Just the other day my wife's doc told us that she heard that the Chantilly Virginia pain Center, (not sure if that is the correct name) not far from me, is about to start 10 day outpatient kedamine infusions on several patients.