Know a doc or two?
 

None of the doctors in my area will do anything, no pumps because they believe i am to advanced and it wont work for me, they wont allow to to cocktail more than 3 painkillers at a time. They wont do the lidocaine iv, won't do any iv med period. I also have crohns and my crohns doc doesnt believe rsd is real so hes a hassle, i am not only fighting my rsd docs but also my gastro as well. I need a doctor that will at least take a step forward and try other things i have all ready jumped through there hoops of what they will do and all of it fails. And no HBO is not an option round here period. Also because of being on methadone,oxycontin and diaulaidid on hvery high does every drug i try to offer to them as an idea to next from this they shoot down as its less than what i am on. If anyone knows of a doctor in Pennsylvania near Lancaster at all please tell me. I swear the east side sucks for having rsd docs other than schwartzman which is a joke and dr. sherry is pediatric theres nothing around here they all look at you like RSD yeah i have heard of it but i dont know what to do or we cant do that around here. HHHHHEEEELLLLLPPPPPP!!!!!

have you tried fentanyl patches. i switched to patches cus i have crohnes and other gasto problems. so far it is better than taking all the meds you listed.

mike

All ready tried the patches. But thanks for your support.

hey lordwood. who ever told you that you are to advaced for the pump is wrong just wrong. i have only had mine for 5yrs but my rsd was already full body with organ involvement like yours.. im sorry that i dont know any docs that way your in PA right? aint so bad is there also .. he might know some great docs he has had rsd for 20=yrs .. i will ask him for you

hang in there hun

LWood,
I go to Dr Knobler, he's in Fort Washington, and is slowing down a bit these days.
He was partners with Schwartzman a couple of decades ago @ Jefferson, in Philly.

I can get you his #, if you'd like.

What type of doctors are you seeing now?

I often preach this "triangle of rsd care".

Your Meds = Your Doctor (Neurologist more than likely).

Your Mind = It's good to see a pain management Psych doc for a while, and re-up occasionally).

Your Health otherwise = EXCERCISE, and follow general good health guidelines. RSD is a Use it or lose it disease, as I'm sure you know.

I've had it since 83.

So, do you have a good neurologist? That's what Knobler is, along with Ph.d. (psych).
Start there, do you have a good hospital, best bet is a University hospital. Get to the "Cheif of Neurology". Or someone there who does know RSD.
Use the phone, and ask questions, like you're an employer testing a new hire! (That's exactly what you're doing).
If that doesn't work, find a pain management facility. Many hospitals have them.

I'm sorry that you don't like Dr Schwartzman. It does seem that he is channeling all his energy into his ketamine thing.

I know Dr Knobler is great, but he's almost two hours from Lancaster, but he IS only a mile from the turnpike! He does specialize pretty much in RSD, and MS.

Let me know, if I can help?

Pete
asb

It's about 75 miles from Lancaster, but Dr. Jhangir Maleki is wonderful. He's in Bala-Cynwyd. His hours are limited so you probably have to wait a few weeks to see him. His number is 610-949-7142. He's a wonderfully compassionate doctor.

I have tried for different pain clinics in the surrounding hospitals. My nearest is Lancaster General but there a joke when it comes to trying to deal with RSD. I have went from there to Childrens Hospital which was not help and than on to swartzman. I am currently still with my family doc cause all the neurologists around here are scared and morons and dont know what to do so they wont except me. I had been told there was a good pain management center at Geighsinger Hospital so my files were sent up to the chief neurologist who ran the pain management center he looked my file over and told me i was to complicated for him and his center he recommended Dr. Ronald Harbut, but Harbut has yet to restart a center and give recent new info on how to contact him cause all the previous contact info is out of date and you dont get anywhere near reaching him. Sady to get RSD in Lancaster is to be put in the middle of a place that could help you but refuses to as they dont understand rsd and are afraid of it. Lancaster's idea of a rsd patient is one where they go through therapy, get a nerve block, and or are with a pain therapist and than there fine. Well guess what i therapy failed, nerve blocks make mine worse and i have went to pain therapists that have told me after a year of session there is nothing that can be done untill i get somewhat of a relief from the RSD. problem is no one around here will do anything the neurologists hav heard of rsd but wont even try going out of the book to help the advanced like me so they ignore me and i am left screaming to the air cause no one helps. So give me the number of this doctor you see its worth a shot. Sherry and Schwartzman 2 of the top 3 rsd specialists have given up on me cause i am more advanced than they would like and any hopspital i send to replys with your to complicated to help. Thats why i feel so alone cause all of you guys actually have docs and are getting the procedures or meds and are not having to have everyone against you. I would love the luxury of even to have the lidocaine iv or even a pump. But no mine have to be to afraid to do anything out of the book. As well i am tired of all the kids that go to Dr. Sherry and are cured and especially those who find pain meds that work. I want to be in a hospital knocked out in a partial coma for at least a couple of days to give my brain a rest from the constant attacks. And i am tired of over dosing on oxycontin 80's and it doing zip absolutely nothing. i have cannot get to sleep anymore so i take 6mg of xanax at once to knock me out for alittle problem is my body is getting to use to that so its starting not to work so i have to up it more. I need a doctor to help me not these jackasses that just sit on there hands and even though i have done everything they wanted to try none of them will move on to other things. I am so FED UP with it all AHHHHHHHH!!!!

i understand what you are going thro i have went thro this for years.. being a kid with advanced rsd and everyone telling me that im too complicated to be treated by them.. so yes i understand i had to travel over 500 miles just to get treated from the time i was 17 till i was 18 then i moved here and it took awhile to find someone here to deal with me.. i went years with out ever having anything for pain. so i understand how hard and frustrating that it is for you..not to even add the problems of the rsd and other things goin on..

i hope that your able to find someone to help you i really do i worrie about you alot .. and i know its ruff at best.. hang in there ..

carrie

K.I.N.D.
Knobler Institute of Neuologic Disease.
520 Pinetown Road
Fort Washington, PA 19034

215.643.9045

You may use my name, my last name is very long, so we've shortened it to just
"Pete Woj".
they'll know instantly.
Tell them how we met.

He had a small heart attack last year, and is slowing down a bit.
I hope you can see him.
I have other friends who travel a long way to see him, and have seen people fly in from other states and countries to see him.
He's a very kind man. Great people there.

I wish you all the best.

But, I''ll tell you this,
I had the ketamine back in 01, when it was 24 hours/day for ten days.
It didn't hurt, but, it had no long term effect other than giving me the ten day vacation from my wife...

PM me if you like.

your friend,
Pete
asb

I am sorry and can relate. I am a hard case and have been to so many doctors in every specialty to usually be refered to someone else because they don't want to deal with me. One called me a nightmare patient with all my conditions. Anyhow I have traveled for most of my pain doctors so I understand how hard it is. Do you have university hospitals or teaching hospitals near you that you could call and see if they have someone in their pain management who deals alot with rsd? I am not sure how close you are to NJ but I know University of Princeton hospital is suppsed to be good in general not sure for rsd but something maybe to look into. Have you looked into a scs? Hang in there and I hope you find someone to work for you and to look outside the box.

Hey Lordwood,

Did you try to get an appt with the doc that Pete recommended?

Please keep us posted. BTW - you mentioned that you had been treated at a Children's Hosp - do you mind if I ask how old you are? And who you have for support? Do you live with your parents, or your siblings, or by yourself?

I am REALLY sorry that you are in the shape that you are in. It sounds like you are in a whole lot a pain and feeling very desperate. It must stink to have stomach issues on top of pain issues, like most of us don't have enough to deal with as it is!!

I don't mean to lecture you - BUT - I can tell you that if I repeatedly took my meds in a manner that was contrary to what my PCP ordered, over a long period of time, he might not want me a patient anymore. He's been my doctor (and my husband's) for the last 20 years, and our relationship is built upon mutual trust and respect. When I need help I know that I can call him, and conversely, when he writes a script for me, he knows that I do my best to take it according to his instructions. Also there is a certain level of legal liability when physicians write a script, and I think we owe it to them to be respectful and responsible. In any case, I adore my doctor, and would never want to lose him. So I try pretty hard to follow his insructions, or keep him in the loop when I have issues with dosages, side effects, etc.

It sounds like you HAVE to get a doctor - a really good one (see Pete's message) - and WORK with him as best you can. And you need someone to help you with that, like your parents or a friend or a counselor.

Good luck, Sandy

I'm not sure if you would want to travel to get to a good doc, but I'm from NY and travel to Cleveland, OH to the Cleveland Clinic Pain Treatment Center. I see a Dr. Michael Stanton-Hicks. He travels the world to lecture on RSD. He is an expert on it. He has helped me and I am far from an easy case. If you want a phone # I would be glad to pass it on. Or you can go to the Cleveland Clinics webpage and search for the doctor and read up on him. Let me know if I can help.

I saw Dr Stanton Hicks too. Have you docmilo6 had any procedures done by him? My friend had her scs implanted by him recently after many other types of treatment. Just wondering what you may have done with him. TO the original poster I missed the part about your stomach issues but the giral I am talking about here has rsd in her stomach in addition to her limbs and the scs helped for relief in all. I agree I hope your family goes to apts with you and can support you as well. Many thoughts

Hi daniella. Yes I have had procedures done by him. But I have not had a SCS placed. He has wanted to do the SCS for some time but I'm dragging my feet.
I do know others that have had him implant them though. How did your friend make out?

Mainly for me he has done all sorts of blocks and has implanted an epidural and sent me home on a pump with Fentanyl and Marcaine. One lasted 4 weeks and the other lasted 2 1/2 months before the catheter moved and had to be taken out.

What did you think of him? Did he help you? I hope so. I think he is a great man and definitely has a great mind. He is the one regulating what meds I take now.

Hi. I have mixed on him and Cleveland Clinic in general. I do feel that he is skilled and if one did get something like scs he would be a good one to do it. I am currently seeing a new pain doc. My friend though who had her scs implanted by him is doing well but she went through a lot to get to this point of failed treatment and many other opinions then him too. I also can relate as not by him but a doctor at UCLA was suggested the scs and this one I am currently seeing after a few more other smaller treatments said he would suggest it to. I go back and forth with just wanting to try and not wanting to. Hope you continue to find relief and come to a choice that works.