[qtkatie013]

Hey everyone! I'm new to this forum, but I hope to get a lot out of it. I've had 5 knee surgeries (left knee) in the past 2 years and was recently diagnosed with RSD.. And I'm only 21!! I am currently seeing Dr. Michael Stanton-Hicks at the Cleveland Clinic.. I am really not happy with the treatment I have been receiving. I've unsuccessfully tried about 6 different medications including Neurontin and Lyrica and I am in even worse pain than ever. I also had a nerve block done but it was unsuccessful. I am actually going to get an EMG test done tomorrow morning because now I'm having problems with my left arm. I live in Erie, Pennsylvania and there are no doctors here locally that treat RSD. Can anyone recommend a good doctor for me to see?? I would be willing to travel to some extent.. Please I am begging for suggestions!! I cannot continue to see this rude old man for much longer but I don't have an option right now

[Vicc]

Hi Katie,

and welcome to our family. You are new to this forum today, but you'll be kicking your shoes off and chatting with good friends tomorrow.

I wish we had never had to meet, since without RSD the chances of that would have been slim indeed, but I'm glad you found us. This would be the best place for RSD people to meet even if I weren't here; we will hold you up during the really bad times and you will feel our love. Within days you will be doing the same for others; "newbies" and old-timers alike.

I'm sorry this disease struck you at all, much less at such an early age, but you will meet people here even younger than you. I know of other sites that have "junior forums" for the kiddies, but we're all equal here; except Mike, who hasn't figured out yet that I'm the king around here.

I'm not surprised that you aren't satisfied with your experiences with Stanton-Hicks: You may have gone there because you heard he's one of the best, and unfortunately, that's true; a reflection of the fact that the "best" in RSD are almost universally incompetent.

You refer to S-H as a "rude old man", and frankly, I'm surprised: In his videos he comes across as the kindly, fatherly sort of doc that people talk about knowing back in the "good old days" Is there nothing we can trust anymore? The next thing you know, someone will tell us he wears make-up in those videos.

I wish I, or anyone, could recommend a good doctor for your RSD, but the truth is that you won't find anyone who can help you beat - or even stay even against - this awful disease. If S-H, or anyone else, knew of a way to truly help RSD patients, their secret could stay be hidden for long: soon every doc would be using it to help their patients.

Knowing this, I do try to tell people that waiting two to three years for the opportunity to be seen by the Great Guru of RSD: Dr Robert Schwartzmann in Philly, is nothing less than clinging to a false hope. He can't help you either. He doesn't have a clue as to how to "fix" RSD.

He does offer the latest fad; ketamine infusions, but you will need cash up front because insurance won't pay for it, and his claim that 50% of his patients experience significant relief seems astronomically high: so far as I know, only one member of your new family came away with significant relief, and more than 2 have gone.

I know how thrilling it must be to be greeted by news like this, but the truth is that we are all here because none of us has gotten better. All is not hopeless, however. I have been intensely and systematically researching this disease for ten years, and for the past six years I have been telling people why the experts are wrong and telling them what will help.

Few pay any attention to what I say, but most agree that while I'm a crochety old man, I'm fairly likeable, so they let me hang around. A half-dozen or so have read my posts and followed my advice: they don't even drop by anymore; I guess they're too busy living their improved lives.

I don't expect that you will pay much attention to an apparently delusional non-physician either, but over time you will probably read some of my posts and may find reason to rethink your original impression.

Meanwhile, welcome. You will find more of what you need right here than anyplace else I know of. Just being with people who understand your suffering because we share it, yet still manage to live, love and laugh, will sustain you.

Oh, yeah, about S-H. Get the Hell out of there!!! Shoot your way out if necessary. You don't have to shoot anyone, just put a couple of rounds in a light fixture and they'll all duck and you can escape. It's happened before, so they're used to it.

I hold an especially hard place in my heart for the Cleveland Clinic. A beautiful young mother, not much older than you, pinned all her hopes on her appointment there. She, too, was treated shabbily. She came home, posted a bit about her experience, then ended her life.

I will never forgive S-H for deliberately misleading her into believing he could help her when he knew he couldn't.


Meanwhile, next time wear loafers, they're easier to kick off that the lace-up kind...Vic

[Vicc]

Hi AnnBon,

I don't debate personal posts by forum members. I simply accept that when their experience contradicts everything I have learned, the person is accurately reporting what happened and I wish it would happen for others.

I do, however, take umbrage when someone implies I am less that rigidly honest. When you wrote My insurance company did pay for almost all of it.... I don't know way people give miss information. were you suggesting that I was offering misinformation?

I don't claim to have studied the policies of every insurance company in the country, but I don't recall anyone else here reporting that insurance paid for their ketamine "therapy". I know that this protocol is still considered experimental; an off-label use of the drug to treat a condition for which it was not evaluated or approved by the FDA, and I know that most insurance companies will not pay for experimental drugs or therapies in the absence of overwhelming material in the literature that it is both safe and efficacious.

If your insurance company is the exception and willing to pay for an unproved experimental drug and procedure, you got lucky. You will not find many insurance companies that will do that. I stand by my statement. Bring cash.

If you have had success with Schwartzmann or anyone else using ketamine infusions, I encourage you to tell others. It will help balance against the experiences of other forum members who have not been as fortunate. Informed decisions require information, and yours is good as anyone else'.

Finally: Dr. Stanton-Hicks in CLeveland has an excellant reputation and very up on all the most rescent technics, but I do not know him??? I am sorry you are having a hard time with him. I would try and reevaluate and try and mend the relationship.

If there were any recent techniques that had been shown to be effective, and S-H provided them, I would be first in line at his door. There aren't any, that's why we're all sitting around talking about RSD instead of doing something. And how does one mend a relationship with a "rude old man"? Why would someone want to?

When I act like a rude old man to someone, and I sometimes do, I usually write-off the relationship. My victim is usually offended and would expect me to initiate any mending, not him or her. Sometimes I can be rude and then feel bad about it. When that happens I try to mend the relationship by saying "I'm sorry"

Maybe you could write a note to S-H suggesting he say "I'm sorry I was a rude old man" to Katie. He might pay attention to you since you say nice things about him. He never listens to me, so there's no point in my writing.

Again, I stand by my words. Katie, get the Hell out of there...Vic

[dreambeliever128]

I'm glad you found our forum. You will learn a lot here to help you.

I wouldn't want to see a Dr. I don't like. I have walked out of many Drs. offices because we didn't click. I now have a PCP that does all of my medical care.

From what I have seen around here it's very hard to find a Dr. that does know a lot about RSD. It's a hard one.

It's hard to see a young person come on here with this RSD. I'm 55 and I have lived with it for far too long but to see such a young person have to suffer with it. We do have some girls about your age on here going thru it though.

I started out with it in my hand and arm and now have it in my right foot up to my hip so it does spread. I have it in a lot more areas also.

Did he just do one block on you. Most people have a series to help. I have had 3 and they had wanted to do 15 more but things happened that kept me from going on with them. The three that I had worked great though and I also have one before any surgery if possible.

Drs. CAN be famous and not worth their weight in salt so don't always go by the names.

Hang around there will be some on here I'm sure from your area that will have some names of different Drs. that might be able to help you and you might also have to travel out of your area to see a good one.

I'm sorry you are having such a hard time and I'm glad you found the forum to help you. You will enjoy being here and as I said, learn a lot.

Ada

[Jomar]

Hi qtkatie013,

I can't help at all with the Dr thing but here is the link to or useful info-
there are a few alternative therapy sites listed also.
http://neurotalk.psychcentral.com/showthread.php?t=247i

[qtkatie013]

thanks for all of your suggestions.. it seems as if i wanna see a new doctor i will be traveling atleast 6 hours away! right now my doctor is almost 2 hours away! kinda crazy. i have an appointment with dr. schwartzman in philadelphia NEXT AUGUST!! even his coworker (some german doctor) is booked so far in advance. my doctor only did one nerve block and it didnt work. he said there was no need to do any others because if it didnt work once, then it wouldnt work any other time.. so who knows. he mentioned an epidural catheter but never brought it up again. maybe he forgot? im wondering if that would help me and if i should suggest it at my next appointment. what do you all think? im afraid to suggest things to him because i dont want him to get upset. he said the catheter would allow me to do physical therapy because right now i can hardly walk let alone work my leg out!

[daylilyfan]

you could try Dr. Teresa Dews at Hillcrest Hospital in Gates Mills OH

She was in with Stanton Hicks, but then went over to Hillcrest to run their pain mangagement department. Gates Mills (it might be listed as Mayfield Heights) is on the upper east edge of Cleveland. I liked her a lot. My insurance changed a couple months after I saw her, and she is not on the plan I have now. I'd like to see her again... have been searching for a Dr. as good as she was since. She is still affiliated with the Cleveland Clinic. I found out about her from another person on the old braintalk forum who was happy with her treatment of their RSD.

My half sister had RSD, and went to Stanton Hicks. They felt he "knew his stuff" but did not like his way with people. So I have not tried to go to him.

I am set up to go to the head physiatrist at OSU in another few weeks. I am not sure if I even want to try another doc. But, one of my other doctors knows this guy and thinks he can help. His name is Dr. Pease and he's at OSU in Columbus. I've been waiting since December to see him. It was more than 6 months to get in. Hope it's worth it.

I'm seriously considering going back to Dr. Dews and just paying for it myself. She wrote up a suggestion list of things to try for my family doctor and my pain management doctor so I didn't have to keep going to Cleveland. Good thing, since I ended up not being able to go back because of the insurance change. She was the most knowlegeable I have gone to so far, and the most open to discussing all kinds of treatments and options... treated me like a person too.

good luck!

[carose]

has a web site you might want to look at- Piedmont Phyical Medicine-and read what he says about RSD and also the section on meds. He helped turn my life around and has people from across the country and world come to him. Having said that he in NOT for everyone. He believes the vascular system plays a role in RSD. Please believe me, this is only FYI. I have nothing in this except wanting to share information that was helpful to me. Carose

[frogga]

Hi Katie.

Firstly, nice to meet you. Secondly I am sorry that you are having problems with your doctor - I can't be any help because I am from the UK. However, I am 21 and there are a couple of us youngies here - to balance out all the oldies!!! (uh oh.. someone is going to slap me for that... . As you probaly know younger people have a far higher chance of remission than wrinklies.. so it's all in your favour - especially if you can find a new doc!

Good luck and if you ever want to PM me that's fine! I do know what it's like - I got RSD when I was 16 and am unable to walk and stuff but I have just started at uni majoring in Psychology.

Take Care and I hope things are soon sorted out for you!!

Frogga xxxxxxxx

[Vicc]

Just so no one thinks I'm talking to the "voices" again, many of my remarks were directed toward someone who made some questionable statements, which either she or someone later deleted...Vic