Shout out to any Dr. Schwartzman patients
 

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:Crowded:

Ketamine infusions in PA.
 

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:hug:

Sandy
Sorry but I didn't say there was a list on the site - I am afraid that you need to do your own spadework on this one. You need to trawl through all of the stuff in the medical archives on the site item by item. Look for anything that deals with or references ketamine treatments and then check out the names of the various authors in those papers. You will start to see the same names cropping up and from that you can see who is doing this type of research and treatment.

Like everything else CRPS related, you have to spend a lot of time and effort working through all of the published info to extract and collate what you need. I think research skills are almost as important as medication for this condition!!

ketamine and Schwartzman
 

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 sch:)eduled 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!

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.

ketamine
 

Thee is a thread just below yours that has ketamine doctor lists. I think a lot of them may not do the 5 day...I would look into Dr Richman at Hospital for Special Surgery- He was great! and also Dr Hertz at St. Lukes- both in Manhatten- good luck

I see Dr. S yearly...it took, I cant remember how long before my first apt. He is such a knowledgable, nice man... We are all in such a tough spot between the devastating, daily RSD pain and the non compliant ins. Companies along with lack of convenience for us to even receive the Ketamine treatments... I think the mission should be to focus on how our own personal RSD Dr.'s could acquire Ketamine as part of their treatment and provide that for us...Sadly, RSD seems like it's always going to be present for us....

I pray for you all !!!!

Hugz, Kathy

Hi Jim,
Could I get more info or contact information on the Chantilly practice?
Thanks
Liz