I have a burning interest in having a Ketamine infusion treatment. I live in Pittsburgh and the closest place (to my understanding and correct me if I am wrong) is Philadelphia. I was communicating with someone else on the site and they thought that the wait list was years long. Can anyone confirm/deny? How hard is he to get an appointment with? I thought that maybe a couple of his patients may be around and could give me some scoop. Please-please and thanks-thanks

Hi,

I have had a few ketamine infusions with Dr. Schwartzman, just boosters, I did my 5 day in NYC. In the past it hasn't been to bad to get in for an infusion but I was just told last week that he is more booked then ever. My PM Dr. wants me to go for a booster and he is the one who told me. I don't know if you are trying to get in for a 5 day or just a booster, but I would just call his office direct or if your current PM Dr. has any influence that always helps. Hope this helps...


Gabbycakes

I need the 5 day. Actually I don't know much about the procedure itself and how it goes. I just know that a) I've worked with Ketamine at work and b) I read on this board and in journal articles that it can realy help RSD. Any info would be appreciated.
Lori Lee
PS- If I wait for my PMR, that's what I would do-wait.

Lori Lee

I called his office a while back to see if I could get an appointment. For new patients, the wait for an initial appointment with Dr S. is between 18 months and three years. It makes the UK's NHS look positively efficient and 21st century!!!

You also need to bear in mind that the ketamine infusion treatment is still in its relative infancy. It is regarded as experimental and has been carried out on very small numbers of people (in relative terms).

I am not suggesting in any way that you shouldn't continue to pursue either an appointment with Dr. S or the ketamine infusion treatments. I would urge you though to be realistic or you risk building up your hopes and possibly then having to cope with having them painfully shattered further down the line. I know it feels awful but you are only at the very beginning of the CRPS journey. Most physicians and insurers will want to try the conventional treatments to see how you respond to those before they would start to look at the more "experimental" and expensive stuff. Although there are no published statistics, the pain and other symptoms do subside for some people given time, drugs and physio. None of the ketamine based treatment is available in the UK even as part of a research project and it is not an option to travel to the US to have it done because it requires regular repeat infusions and boosters on an ongoing, long-term basis.

When you are feeling desperate it is very easy to pin all of your hopes on the latest experimental procedure or an appointment with a well known specialist. Pursue all of this but don't use this activity as a substitute for coming to terms with the diagnosis and your current situation. You might have to wait quite a long time and in the meantime you will still need to learn to cope and manage your situation on both a physical and psychological level.

Good luck though. If you look at the rsds.org website you will find lots of info about ketamine based treatments and the names of the physicians and academic clinicians who are carrying these various treatments out.

Good luck though. If you look at the rsds.org website you will find lots of info about ketamine based treatments and the names of the physicians and academic clinicians who are carrying these various treatments out.[/QUOTE]

Gymjunkie --

I've can't find the names and locations of the doctors who perform the ketamine treatments on RSDSA.COM. I've done a search this afternoon, and can easily see that there are references to Dr. S at Drexel and Dr. K in South Florida. But since I live in RI I'm interested in information related to the NE area.

Would you mind providing more info on where the list of doctors is located?

thanks, Sandy

I haven't been to see Dr.Schwartzman before however a few of my friends with RSD have been to see him.

One of my friends who has severe full-body RSD tried to get an appointment with Dr.Schwartzman and she was told that the waiting list was 18-24 months and it was just time she simply couldn't afford to lose because her RSD was really bad - it got to the point where she actually has severe fits and seizures from it and her doctors have told her that if she doesn't get treated really soon, things could be SO much worse for her. I couldn't believe it when she told me how long the waiting list was - she has put herself onto the list but is currently trying to find another doctor that does the Ketamine. For the time being, she is having Ketamine Infusions in New Jersey with Doctor Getson but she really needs the coma treatment she has been told by several other doctors.

Another one of my friends with full-body RSD got to see Doctor Schwartzman and he said he couldn't do anything other than the Ketamine Coma for her but she was told it would take 3 years before she could get it done.

I'm sorry that I can't help you that much but just wanted to let you know about what my friends were told. I agree with what GymJunkie said - please be realistic and you are only in the early stages of RSD (even though it might not feel like it at times!) so it might be worthwhile trying to find other treatment options that might work before persuing this. You could always put your name on the waiting list to see Schwartzman and try other treatment and then if it doesn't work, wait until you can get in to see him. I was told by a friend that Schwartzman will sometimes only see patients if their RSD is severe and if they have tried other treatments that didn't work for them.

I wish you all the best and hope things get better for you soon

I have an appointment with Schwartzman for a year from now. I got it months ago. I do not think I will keep it. I really want to see Dr. Harbut in Arkansas . His clinic is not currently open, but hope he can get financing for it again. He has very good results with his low dose infusion seven days aproximately. I have spoken with at least five of his patients and they were thrilled with their results. It is in remission and so far, it seems the time is about three years...maybe more , maybe less , depending on the individual and how long they have had it. He is a pioneer in this field and I tried to raise money thru a foundaition I serve on, but it didn't happen this year. You can read his papers on his work online... search Dr. Ronald Harbut ketamine ...I think it is the future of the answer to CRPS. A really nasty piece of business that gets little real attention . Pain docs.. push the pills and then coming off of them is a nightmare all over again. I have had this for a year, come February. Feels like a lifetime. I am older than most here probably, so am willing to try anything to get some reasonable life back.

Good luck, Sherrie

Hi all-
Iv'e been a patient of Dr. Schwartzman x 15years. My last appointment in Oct. they set me up for Ketamine and I'm finding that the pre op appointments are not being paid by my insurance, so Iv'e held off for now. My appointment was scheduled for 6 months out...

i would def suggest you email dr leverone in los angeles about the ketamine infusions he does. i just had one on monday and have been pain free since then. we did everything over the phone and email, and its def a lot cheaper then having to go to germany for the coma. the risks are also a lot less. his email is ketaminetherapy@gmail.com. i know la is far, but for the chance of being put into remission i def think its worth it!

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.