Doctors for RSD/ CRPS in PA, NJ or DE?
 

Could you tell me if there are any Drs. in PA, NJ or DE that you would highly reccomend in working with RSD? TIA!

Philadelphia RSD doctors
 

Dear Vanessa -

The best RSD group in the country (outside of Boston, perhaps) is in Philadelphia. Dr. Schwartzman can take years to get into see. However, I understand from Roz on our board that Dr. Maleki is wonderful, and can be seen in far less time. For your reference, I saw Dr. Schwartzman now almost three years ago - flying in all the way from California - he had me hospitalized for a week on one treatment that didn't work, but he had to run before putting me into ketamine trials. Unfortunately, because of some other medical conditions that developed, I was unable to participate in the ketamine therapies.

If you are in their geographic area, I think it will be a big plus in being seen, especially in a primary treating capacity, which is what you want. Anyhow, here's their address:

Robert J. Schwartzman, M.D.
Jahangir Maleki, M.D.
Department of Neurology,
Drexel University College of Medicine
Drexel Neurological Associates
219 No. Broad Street, 7th Floor
Philadelphia PA 19107-1519
215-762-7090
215-762-3161 (fax)

Good luck!

Mike

___
P.S. Last I checked, the person you have to speak to in setting appointments, at least with Dr. Schwartzman, is Carol, who has absolute control over the scheduling calendar.

Hi Hon,
I remember you saying you are young. If I recall rightly you haven't had it that long as well. Make sure you share this information with them while trying to get an appointment. It could help.;)

I have seened Maleki MD who is wonderful. Hugs, Roz

Unfortunately, I am too young to be seen by Dr. S./ their group. :( :( :( That is who I had really wanted to see but we contacted their office and I am not able to see them there. :( I am not 18 yet, so that possibility is out for now. Maybe somewhere down the road I can see him, if I am still dealing with this.


Thank you for the replies.:Thanx:

I must say that I found Boston to claim to have the best, but in actuallity I would choose to differ on that opinion!

Just had to add my 2 cents about this one,
Peace,
Lisa

Who do you feel is the best Dr. for RSD? :Hum: Just wondering what your opinion is on that...

hi
 

I saw Dr. Getson once -he was working ala Dr Schwartzman with the ketamine but his funding was cut- He was very nice and down to earth-here is the links to read about him..

Debbie

http://aolsearch.aol.com/aol/search?...ry=dr%20getson

I have a GREAT doc that i see if you are willing to come up to NY!!! He even had RSD himself so he knows exaclty what we are talking about!!

Let me know if you want his name and everythng!

;)
Amber

Phila
 

The top int he field is Dr.Schwartman. HE is retired, but does do some work in Hannaman yet. It can take years to see him, nut he trains his staff welll, even interns from Psych dept on rotation I observed him demostrate RSD and TOS for them to see even if the test show nothing the pain in not in their head and this is how you test, or reproduce to establish the problem.

He is cutting edge on Ketomine and lidocain IV, I think that was what they used. My daughter did not have the treatments but I met many that came to Phila to be treated.

Did you treat with Dr. Togut, if so he has a sonsultation ability with Dr. S to get his patients of need seen.
You amy be too young to be treated with Ketamine protocol, but not to see Dr.S. He saw my dauther and she was just turning 18.
I would consult with Dr.Togut and see what he suggest and strings he can pull for Dr.S to Consult your situation.

I am not sure but call there is it universtiy of PA on 15th, Center city exit, onto Broad st, second left there is parking near the hospital, office is across the street.

Another one you may want to call or email is Dr. Scott Fried OF THE UPPER EXTREMITY INSTITUTE, blue bell, PA www.nervepain.com
Opps sorry for caps, lap top......
Been down this road with my daughter since she was 16, she will be 30 in a few months.

Di

That is a very difficult question
 

This is a very difficult question and I wish I knew the answer but I don't but I do have very strong opinions on this topic.

My opinion is that the doctor who takes your pain away is the best one but it sometimes takes visiting 5,10,20 doctors before you find the one who figures out "your" very specific issues.

The way I went about researching doctors was asking on forums like this and then researching on the internet and calling the office to see if they treated me like a human being. I wanted a doctor who had seen tons of patients with similar symptoms. Not just a few here and there amungst others. A real specialist.

Back in 2001, Dr. Daniel Carr was one of the "big RSD" doctors. He was teaching at Tufts in Boston and seeing patients a few days a week. I was unable to get an appointment scheduled with him for something like 6 months so me and another woman who had RSD, went to his office and cried to the secretary to get us in sooner. It worked and we both were seen on the same day so we could drive in together!

Once I became his patient, he gave it his all to try different things to help me. He truly cared about me and my pain. The problem was that he was treating my pain and not trying to figure out the CAUSE of it and ask whether or not it was fixable. He thought it was a classic case of RSD and I had all the symptoms. My left leg was 86 degrees and looked like crap. There was no way to not see that. He had seen this hundreds of thousands of times before and was an "EXPERT" on RSD so how could he be wrong?

I guess the lesson to be learned is that since he was so familiar with RSD that was what he was looking for. Each specialist sees the world thru their particular angle. What I really needed was someone to look at the big picture. See the forest, not the trees. My warning is that sometimes it's really not what they think it is.

Physiatrists are supposed to do this. Look at all the systems and figure it all out. Rehab doctors are supposed to find you recovery. That's what I searched for - complete recovery and I wasn't going to stop looking until I found it. Pain doctors only treat the pain not look for the cause or the cure.

In regards to particular doctors, for me, the doctor who saved my life is my chiropractor, Dr. Michael Miller, but Dr. Joan Borg-Stein was the 1st one to think I had entraped nerves that were fixable not RSD. Dr. Carr did everything he could to take away my pain but he didn't know how.

The other doctors I had seen for opinions I would not recommend to you. They are some of Boston's Best and I'd be glad to share names with you in private but don't want to bad-mouth anyone who may be helping someone else who reads this. Just because they didn't help me, doesn't mean they won't help you. We are all so different.

I had spoken the Dr. Schwartzman's office when the Ketamine coma's first came out and tried to get Dr. Carr to do it to me here in Boston. However, I did use a Ketamine compounding cream and Dr. Schwartzman spoke to Dr. Carr about how to use it with me. They are collegues and all the RSD doctors know eachother.

That's another problem, all the docs know eachother so they won't disagree with their buddies. It's the old boy network.

Sorry about being so long winded. I guess I have alot to say on this subject since it took me so long and so many doctors giving the wrong advise and treatment and I don't want you to go thru that.

Peace and hope,
Lisa

Does your daughter still have RSD, and if so, has it improved? How did she get it?

Thanks for the replies everyone... you were of help. :)

Rsd
 

Venessa,
My daughter was 16 when injured, she is going to be 30 yrs old in May. Her life is pain managing it and getting through one day at a time. A lot of the CRPS is touching items like terry towels, makes zaps up the hands and freaks here...too much stimulation. She has occasional flares of RSD that her arm will swell and it is triggered by change of seasons or heat. If she didn't have me as an advocate for her treatments the last 13 years, I am not sure what would happen to her.....

She had multiple surgeries; she almost did a lidoderm IV with Dr.Schwartzman but her bipolar would not be good her for her to be there ten days. Also, Dr.Schwartzman is not supportive for narcotic therapy, he wnated her to detox when she was done completly, not reduce or change meds.
But, in any other manner, he is the man. Paternal, grandfatherly, caring, supportive and dedicated!

There have been many surgeries, from CT, to breast reduction, to first rib removed, scar matter cleaned up from nerves....But as you and I chat here, she has difficulties. She can share where her pain is, activities that make it worse, only thing she ahd no anser to is how do you live, get up in the morning and pretend not to be disabled. Not even pretend, but, unable to make the most of her day. A good pain rehabilatations center to help her gain what she can, show her how to reduce what makes it hurt would be best...

I am hoping she will go to a place in Maryland. It is called I think Messa Clinic, or Mennsa. They do an overhaul, take you to medical centers for test and figure out what is tehre and an what more to do for your life.
I really would like her to decide to go there by spring.

De has Allodynia, hyper sensations to the brain. If you touch her with a tiny tip that has one end with three picks, and the other end a tiny paint brush tip, she could nto decern what is touching her, it all hurts.

She has a brachial nerve injury across the traps and into the arms from a stretch injury to the arms and uppper back and neck.If she is not looking a t a glass in her hands, she can not feel it, the lack of the brain focusing on it the hands do "feel" it and it dropps, big time droppsies are frustrating.

I would say she would talk to you....she is not really computer minded. But, if I can get her a better day I bet she will email.
You can feel free to ask about her treatments, mducation combos that worked and didn't.

THe hardest thing for her and our family is a life that has known pain since being a teen. She never really grew up, maturate normally. It has been a life of workers comp battles, applying for Social security. She has emotional problems triggered from not having good chronic pain psych support to how to grow uo, and manage a life with disability.Bi-polar.

I had gone to the same psych and he was the greatest. I was injured in 2000 and unable to return to my job as apolice Chief. I was so upset and hated not being thought of with respect anymore. To my coworkers I was a deadbeat on disability.
I also have TOS, herniations in neck and lumbar, rsd in the feet, carpal tunnel in hands, cervoigenic headpains.

With adaptive support from voc rehab and a great college system I retrained at 50 years old and work part time. I supervise court ordered visitations. Many of my clients were spouse or child abusers, predators, also mental disabilities.
I use a hot tub, valium as a muscle relaxant, topomax, lidoderm patches, toradol for flares and percocet. Biofreeze rub on, heating pad, and ice on neck.

I do feel as I was removed from work with in weeks of my injury, I did not get as bad as many others.
For me, I do not act limited at home. I do ask family to do hard chores, I do neglect chores, I am always involved mentally. In legal fronts as an advocate for mentally disabled, for a community recreations centr, even emergency management committies for our local area.

Also the forum, my friends on here have been a lifeline of information and support for ten years.
my email is dimarie11@yahoo.com
Dianne

...WOW you said in NY? I am living in NY and I have been trying to find one. Can you give me information please?

That would be wonderful. Thank you.

Emily

Dr. Schwartman is retired? I have an appointment with him in May 2007.

I am close friends with a person with advanced CRPS and she has been very happy with Dr. Getson in NJ (suburbs of Philadelphia PA) because he listens carefully, and is very gentle (even uses a head lamp so patients can lie down in a dark room during the exam!). He used to practice with Dr. Schwartzmann at Drexel.
Dr Philip Getson 100 Brick Road, Suite 206 Marlton, NJ 08053
Tel: (856) 596-5834

interesting site I ran across: "Personally Recommended RSD Doctors" (I can't vouch for this personally)
http://members.fortunecity.com/ducky50/id40.htm

Man will never truely retire
 

Dr.S will never truely retire , he is in Germany much doing research, it takes months for an appointment as he only sees a few patients anymore. HE is doing the Ketamine more often though.

Dianne

Speaking of Dr Getson
 

I just wanted to post and say that Dr Getson (in Cherry Hill/ Marlton, NJ) will not be a treating Dr.. He will evaluate you and work with your treating physician by making recomendations regarding interventional modalities, medications, hospitalizations, procedures, etc...

The intial visit is $300.00 (not covered by insurance), and he does follow-up evaluations every 6 months at $150.00 a visit.


I read somewhere on here (I think) that someone wanted to see him, and wanted to give the info I knew.

There is a waiting list, and you can contact his office at:

Chronic Pain Consultants
100 Brick Road, Suite 206
Marlton, NJ 08053
Ph. (856)-983-7246

If you wish to see him, you have to have his office send you the paperwork, and you have to go on a waiting list.

Hope this is helpful to someone out there... :winky:

Here is Dr Getson's website:
http://www.thermographicdiagnosticimaging.com/

Could you please give me his name and everything??? PM me, if you can. Thanks so much!!

Dr.S
 

I spent 4 appts over the summer up until Nov 29, 2006 with Dr. S.He is not retired and from what I was told is not retiring.... Please do not be misled. Or maybe I'm wrong but that is what he told me...
Ann...:)

RSD Docs in NJ
 

I see Dr Louis Spagnoletti, he's located in Marlton NJ and he is fantastic. I was diagnosed in Sept 2004, and have been seeing Dr Spag since Oct 2006, was seeing a doc prior to him that called himself a pain mgmt specialist but was afraid of the dea or something, expected to try to control my pain with very low level drugs and trigger point injections. By the time I got to Dr Spag I was in pretty bad shape. Since I've started with him, he's worked very closely with me (with me, not to me) to get a cocktail of scripts that worked to control my pain to the degree that I could work a full time busy job and even occasionally do some things around the house, after work, etc. Over the last few months my condition has worsened, and about 3 weeks ago the same level of symptoms I had at onset recurred. Dr Spag got me immediately in to see Dr Rosen (in Jenkintown PA) and I'm scheduled for my first symp lumbar block next Wed. In the meantime heavier scripts to help with the pain and to sleep. I would recommend Dr. Spag to anyone having chronic pain issues, and after seeing Dr Rosen yestersday I would highly recommend him as well. Having spent way too much time with a less than stellar doc, I know how important it is to form a relationship with a dr that knows RSD and chronic pain.

Des

Hi Nikki,

My son is being treated by Dr. David Sherry at the Children's Hospital of Philadelphia - we are still waiting to get into his physical therapy program - it's hard to get in to see him, but it's worth a try. If you find anyone else in the area, please let me know - just in case things don't work out with Dr. Sherry.

Thanks,
terry

Hi Amber,:)

If you could send me the Drs name in NY that you are talking about I would greatly apperciate it. My daughter has had RSD since 2004. Thank You so very, very much. Please feel free to contact me.

Just a correction.
 

Hi All,

I have read here that some believe that Dr. Schwartzman is retired. I am a patient of his and just saw him in Jan 08 and spoke to him about 3 weeks ago and have an appt in July 08.

Yes, he is very hard to see he has over 3000 patients so you can imagine. It is worth the wait. I was sent there by my main Pain Doctor and they have worked together to get me better. He is very compassionate I had some problems with the ketamine and his sincerity was genuine.

We all have to remember RSD does not have a cure or at least I have never heard of one, remission yes so see the best if you can....



Ann

Hi just a comment on the old boy network
 

I think what you said about the old boy network is generally so true , but I have not found this to be true with RSd. Since there is no known rsd cure, thees doctors, most of them in non profit settings are all working on their own methods and ofter wont even share information- they have such pressure on them to publish. its part of their profession. I cant wait for the day when they all are sharing and the sooner the better for all of us.
I look for the most respected and frankly the doctor I feel I will have the best communucation with. To me it is a bonus if it is non profit. Most of these doctors have devoted there lives to something that have few successes and very small rewards along the way. There is a great deal of frustration for those of them that truely care- that they can not help those of us that are suffering. So I look at their education, where they work , If I like them and If they are trying something that I havent tried already. Hope you are still doing well. CZ

My father is suffering badly from RSD after a recent shoulder surgery. Could you please give me the name of that doc? I see that you live relatively close to me, but I would travel to the end of the earth and back to get this cruel, nasty disease under control for my father!

if your under 18 dr.sheery at the childerns hopstial in philly is amazing and i her dupont hospital in de had a docter that dose this too but you have to be under 18

Amber, can you send me the name.
 

Amber , Please send the name of the MD you are seeing.

Also, does anyone have any experience with any MD's in NYC?

My sister has RSD for 14 years and until 1 month ago was being managed pretty well w/ dilaudid in her implanted pain pump and working out every day. She has started having severe pain in her foot and it is traveling up to her pelvis and rectum.

I have experience with a doctor in NYC his name is DR Richman and he is at the Hospital for Special Surgery. He is in thier pain department. I just got done with a procedure with him in which he also did the 5 day in-patient ketamine and he was wonderful.

Niki

Hi KStrong and WELCOME to NT!!!

Amber hasn't logged in since May.

You may want to repost your question as it's own thread so that more people will look and may be able to help you.

I wish you the best...
:)
Abbie

RSD, Help
 

I have RSD in my right foot and leg after a car accident that fractured my spine. I was diagnosed in 2006 with RSd, It has gotten so much worse, I'm ready to check out!

So sorry to hear about your pain. I see that this is your first post - because it's tacked on an older thread a lot of people might miss it....you may want to start a new thread to capture the most attention.

Have you joined the RSDSA yet? Check out their website at RSDSA.org. It's has a lot of great info. Do you have a doctor yet? Are you looking in North or South Jersey - (I'm originally from S. Jersey, can't remember where Hacketstown is)?

There are a lot of good people here that will be willing to help you with your questions...you've come to a great place.

Peace, Sandy

RSD Doc
 

Could you send me the name of the doctor who has RSD that you suggest to see? His phone an dcity as well. Thanks
Stephen

Hi IHS.

I have a wonderful ortho in Dover. Also a very caring Neurologist. I use a pain doc out of Philly, but would not recommend him. I am starting treatment at John's Hopkins in Baltimore next month. I finally feel like I can be hopeful for pain relief. PM me if you want more info. Good luck!

Kim

If you still need, see Dr. Robert Knobler.
He specializes in RSD and MS. He's a Neuro, Ph.D.
(REAL SMART/SHARP)!

I (After 7 years of nonesense) finally got to Dr Schwartzman, and Dr Knobler was his partner @ Jefferson.
Dr Knobler now runs the Knobler Institute of Neurologic Disease.
Ki.I.N.D.

(I just walked in the door from a visit with him).
Wonderful people

PM me, and I'll send you his address. He's in Fort Washington, PA, Right off the TPike.

Phone.
215.643.9045

You may feel free to use my name, (Pete Woj.)

This man has taken me further than Dr S. or any other Doctor I've EVER had!
I've sent many, many folks to him, and they are ALL happy, even driving all day!
Worth the trip.

BTW, He takes NO INsurance!

Be WEll!

pete

im soo scared i cannot find a understanding doctor
 

HI Im from Long Island and I have had RSD CRPS type 2 and for over a year now and the pain has not subsided and cannot good medical care please help !!!!

I have seen on this site a doctor who I believe is out of Stony Brook. I believe she is a women. A fellow RSDer who does post I this site knows her name. Her NeuroTalk name is Debbiehub, PM her she will be glad to give you the name I'm sure.

If you want to travel into the city you have Daniel I. Richman, MD, Semih Gungor, MD and the whole pain department out of the Hospital for Special Surgery located 69th and York right on the East River. Russel Portnoy, MD out of Beth Isreal, Union Square, Dr. Hertz, out of St. Lukes,he's very good but did not like St. Lukes, 57th and I believe 10th ave. all the way on the West Side.

Thats all I can think of. Good Luck.

Hi RSDAngel...I live in NY and have RSD. Could you tell me who your doctor is?? I would really appreciate it!

Hi Niki,
I too have RSD and am being seen at the hospital for special surgery. I am seeing Dr. Waldman there. How did you like Dr. Richman? I am about to go for the 5 day ketamine...can you tell me a little about your experience? What did it feel like? Where there any bad parts? Can you describe what it was like those 5 days?
And most of all...did it help? How long did that last? How are you feeling now?

Thank you so much. I am so scared for this whole thing I would love the support and knowledge of what it was like!
Best,
Kelsey

Question for Alaska49
 

Hi Niki,
I too have RSD and am being seen at the hospital for special surgery. I am seeing Dr. Waldman there. How did you like Dr. Richman? I am about to go for the 5 day ketamine...can you tell me a little about your experience? What did it feel like? Where there any bad parts? Can you describe what it was like those 5 days?
And most of all...did it help? How long did that last? How are you feeling now?

Thank you so much. I am so scared for this whole thing I would love the support and knowledge of what it was like!
Best,
Kelsey