You might try Rosomoff in Miami, Florida.  Aside from the Cleveland Clinic and Johns Hopkins, this is the only other one in the USA as of two years ago.  They have all disappeared and have gone to outpatient only.  I know, because I searched for my wife for many years. She has RSD.

We just came from 10 weeks of "hell" at Johns Hopkins.  They lie to the patients.  They tell you that some patients need opiates. They tell you they have a comprehensive number of specialists who can evaluate you.  Well, they immediately try to get you off all opiates. You have no say in establishing a treatment plan, or goals. Any pain is attributable to "withdrawal."  If you are unable to get out of bed due to pain or muscle spasms, the nursing staff says, "you don't want to" and "ward policy" dictates they will hold back your nutrition (meals). The doctors are all pyschiatrists who have no compunction about lying to the patients to get them to do what they want in terms of medical treatment. Any opposition by family members, such as questioning, is met with banning from the ward. Any formal complaints are met with threats of dismissal from the program. If you don't wish to bend to their treatment recommendations you are "invited to leave" the Program. Think of the program as "The Gospel". They are "demi-gods" who cannot be questioned and cannot be wrong, or so they believe. If they are found to be wrong, they will lie and cover up their mistakes. I never knew doctors actually lied, respected doctors. You are pressured and coerced into treatment until you give in.  I had the Ethics Committee called in on me, because my wife appointed me under Maryland Law as her Medical Decision Maker because she was being pressured into getting a CAT scan.  They wanted to do a dangerous spinal stenosis surgery on her and had put her on the surgical schedule three days from the neurosurgeon seeing her, saying he could relieve some of her pain, an elective and dangerous surgery, not approved by any insurance company or by my wife or myself. I was told, as the husband, I had no legal say. So, I got the legal say. The Social Worker, the nurses, all tried to block this, and my wife being on a locked pyschiatric ward and my being banned, caused a delay of 24 hours. We managed to get me appointed. In the meantime, they stopped her aspirin therapy, something crucially needed for another medical condition, without telling either of us, because they hadn't bothered to check the medical record to see why she was taking the aspirin. Even though we did not agree to surgery. The reisident says he stopped the aspirin. The neurosurgeon says he didn't order it stopped. The head of the pain program was so upset that I gained legal status, he tried to nullify it by calling in the Ethics Committee on me.  They found I had done nothing wrong. He failed. There was no surgery. It wasn't until the aspirin had been stopped for 10 days did my wife realize it had been stopped. She could have had mini-strokes.  They denied they had done anything wrong, saying they thought there was going to be a surgery, even though from the first we had objected to any invasive procedure and even though it was never considered part of the pain program.

In short, stay away from this program at Johns Hopkins run by Michael Robert Clark.

This is one person's opinion.  There are also at least four other former patients in the last two months who we are in contact with who would never have gone there had they known what they were getting into.

I think they are working for the insurance company though they deny it.

I think you need to stay away from all Pain Programs.

Their method is Cognitive Behavioral Therapy. There are biofeedback sessions, where you have individual time of 1 hour where you go into the room.  There is occupational therapy, where you are with others and learn to distract yourselves with learning to bake cakes, tacos, - a waste of time and money.  There is group therapy with a Social Worker, who most of the students think is a complete waste of time, each talking about their problems.  You are told to "pace yourselves" to "talk to other people with similar problems" when you get out.  They give you hour long classes in Meditation. There is a Crafts class.  They may have a dog come into the unit.

The cost is $1,000 - $1,500 a day.  They come in and monitor your vital several times a day. There is a long waiting list of unsuspecting people who do not know what they are going to get themselves into. You come out with a concoction, a cocktail of medications, to replace your opiates, anti-psychotics, anti-withdrawal, anti-seizure, anti-depressants Effexor 375mg/day, anti-nausea, sleep meds, NSAIDS 1000mg/day Naproxin, gastric (omeprezole).  I do not think you are much better off.  You are in a lot more pain.  You may be less drugged, opiate-wise, but able to do a lot less, and your other organs may fail.  After a number of months, you then will go into the Outpatient program, where you and another individual will live, a converted motel, shop and try to rehabilitate to be able to resume your normal life and activities required of you at home.  Eventually, the way the theory goes, your opiate receptors will get close back to normal.  I read an article and the theory espoused by this Pain Program at Johns Hopkins is not all that popular. 

I would stay away from Pain Programs in general, if we had to do it again.

There is an outpatient program in Massachussets.

epotereiko@yahoo.com

719-576-0752 get back to me if you are interested.

The above is my personal opinion and that of a few others who went through the program.

If you are determined to go through it, then good luck, but be forewarned.

The people running the program believe in what they are doing.

I believe the way they went about it is wrong. What they did to us is definitely wrong.

They put my wife's life in danger and I took her out of it.

But....in the end...had she been able to go through the program....maybe...maybe they would have got her off of all opiates, successfully.

Would it have been worth it?  Yes.

Would it have been worth her life? No.

They stopped her aspirin.

They removed me from the ward, eliminating my oversight, stopping me from seeing all the hospital and nursing errors and mistakes they were making.

This could have been fatal in my wife's case and for all we know may have cause permanent injury.

They have denied any wrong doing.

They have never provided our doctors any medical records.

They have worked entirely with the insurance company, siding with them and providing them with free medical records and changing their stories.

As far as I am concerned and my wife is concerned, they on Meyer 6, Pain Program are dishonest, liers, not to be trusted and will do whatever is necessary to get what they want accomplished.

We had medical records with us. We left our luggage at the nurses station for two hours on the day we left.  When we arrived home, the medical records were not in our luggage.

When we first arrived, we didn't get to meet with a psychiatrist for a week and when we did, on rounds and wanted to speak with him in private, concerning safety issues, his final response was, "I don't know if I can commit" to meeting with you.

Guess what, I filed a formal complaint with the Patient Advocates Office, which to this day is still being investigated.

The latest on opiates, is they are necessary, and the most effective medication for the control of pain.

My wife has gone down from very high doses to low doses and is in so much pain she is in bed most of the day.

Is it worth it?

I think the solution is myofascial release, mild exercise, walking, stretching, physical therapy. They did stretches where the therapist would come in and take her arm and leg and physically pull and move them in circles.  That all helped her and helped her become straighter.

There were some positives.

They did get her to come down on opiates so she is more alert, but more alert due to being in a lot more pain, so much so that she is unable to think through a problem and retain the first part of it.

You might try Hot pool therapy, whirlpool therapy, massage therapy.

Try these websites:

backontrack.com

burdenko.com

If you are desparate enough, they are outpatient, and they might help. Someone, one of the patients, from the Johns Hopkins In-Patient Pain Program, had gone to this place, and thought it was much better than the Hopkins program, in terms of physical therapy.

Hope this helps.