Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 02-24-2007, 11:41 PM #1
Teresa112757 Teresa112757 is offline
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Default Boston MD's

Hi All

My husband has been suffering with RSD for over a year now subsequent to arthoscopic knee surgery. Neurontin helps some.

We've heard that there are excellent doctors for pain management in the Boston area. (We're in NYC and currently go to Hospital for Special Surgery.) Can anyone tell me who is best known in the Boston area for their work with RSD? We're considering Schwartzman in PA but the wait is too long and must try something else while waiting.

Thanks,
Teresa
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Old 02-25-2007, 01:20 AM #2
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Default Hi Teresa

Mark here. Welcome and nice to meet you. I live down on Cape Cod and for the last seven years I have covered the map here in Massachusetts for Doctors. So I pretty much have the skinny on the "Good" the "Bad" and the "Ugly". There is a Doctor Ross up at Brigham and Women's in Boston that is very very knowledgeable of RSD/CRPS. His speciality is RSD/CRPS and Pain Management. Here is his information. If anyone knows what they are doing, he does. Unfortunately I cannot find the number but you could get it from information.

Dr. Edgar Ross
Brigham and Women’s Hospital
850 Boylston Street, Suite 320
Chestnut Hill, MA 02647

I went to him for about a year. I have mixed feelings about his bedside manner so to speak but that is my personal opinion and that is just something you would have to overlook. I sure do hope this helps you. Please take care and all the best to you and your husband. Please stay with us and continue to be a part of our family.

Chin Up!!! Mark P.S. Neurontin is crap!!
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MARKY MARK THE MAN FROM MAINE...GOT RSD AND LOST HIS BRAIN!!!. AND NOW HE HAS TO USE A CAIN!!!
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Old 02-25-2007, 09:27 AM #3
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Default Hospital for Special Surgery Pain Managment Dept.

Hi,
I have also had many surgeries at HSS and use there Pain Dept for RSD. I really can't say enough good things about it. I see Dr. Daniel Richman and when I tell you he has taken me from the black hole to almost normal or whatever normal can be for a person with RSD.

I won't bore you with all the details but I have had, 7 surgeries, 15 blocks, ketamine procedures, boosters with Dr. Schwartzman who Dr. Richman worked together with him. I can't say a bad thing. It does take time and infinite patience. But sitting here today I feel almost myself. I mean RSD is RSD and pain will alway's be involved it's just something that we all have to except. But Dr. Richman has worked very hard with me to get me to this point. What doctor do you know that when you call have it be a simple question or a crisis to the patient, you always get a phone call back always. Maybe not that same hour but you no you will get it even if it is 10pm.

Stay with HSS..

Ann
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Old 02-25-2007, 08:32 PM #4
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Thank you Mark and Ann for your kind welcome and thoughtful advice. We'll keep you posted on new developments. I'm wishing you all many pain free days.
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Old 02-26-2007, 08:20 PM #5
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Hi Theresa,
I know that Boston has a good reputation for great doctor's but my experience was quite the opposite. I won't go into details here but I went to the supposed "best" doctors in the Boston area, several of them, all in very high profile positions at well known hospitals, and they all failed misearably.

I eventually found the "right" cure for my rsd symptoms but that was after going to at least 5 doctor's who were supposedly the best rsd doctors to see. The doctor that figured my problem out doesn't even specialize in it. She was a phsyiatrist and I was referred to her because she has a reputation of being like a medical detective. A Dr House. Someone who will figure you out.

That is what you need to find - a doctor that will figure out what is wrong with your body. That will look at ALL systems (nervous, skeletal, musclar,...) of the body, not just the particular area of their expertise or specialty.

I would be glad to give you the name of the woman I finally found but other than her, I wouldn't recommend anyone in the Boston area for treating rsd symptoms and there are some that I would definately say to stay as far away from as you can. You can send me a private message if you have anyone in mind and I will let you know if I've seen them or not.

I have seen the doctor mentioned by Mark and agree with his comment about his bedside manner. The problem with that office, for me was that I only got to see him once, then other, less experienced doctors were the one's I saw and that care, I would not recommend.

Sometimes the office staff and the process of being seen are what interfers with quality care.

I'm sorry to say, Dr House doesn't live in Boston.

Keep searching - you will find the answers!

Peace and hope,
Lisa
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Old 02-27-2007, 12:16 AM #6
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I live in Boston. Dr Simopolous at Beth Isreal is wonderful. I have only had relief from epidurals. I got RSD as a child in both legs. I was going inpatient every month for a week. He did a one of a kind procedure in 2001. He implanted an epidural catheter with a port in my chest. Once a month for a week I do the epidural at home. I get 7 pain free days.

He fought for me. I came up with the idea but a home epidural system didn't exsist. He was shoy down by his supervisors but went over them to get approved. He used a titanium catheter used for intrathecal infusions and a venus port to create my system. He got a company to donate a state of the art PCA pump the size of a cell phone and found a nursing company willing to work with us. It has worked well for several years and I even had 2 babies!

He listened to what worked best for me and made it happen. The daay before my wedding he took me into clinic and gave me an epidural saturation so I could walk down the isle. He is about living your life, not being sick. I would reccomend him or anyone in the clinic. The number is 1 617 667 3334
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Old 02-27-2007, 09:44 AM #7
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I Could Not Live Without My Neurontin. I Have Been Using It For Years And Did Try To Go Off It Once And Yikes .... Some Do Benefit By It.
I Do Not Live Far From Boston And Am Interested In Who Finds Which Doctors To Be The Best. I Have Used My Primary Care And Had Used A Rehab Specialist At Braintree Rehab For Diagnosis And Some Treatment. Now I Stick With My Pc And Will Until I Feel It Is 'boston Time'. I Have Always Gone To New England Baptist For All My Orth And Back Problems. Anyone Use Anyone There?
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Old 03-03-2007, 12:00 PM #8
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I Would Like To Bring This Thread Back Up To Date And See If Anyone Had Used The Ne England Baptist Docs For Their Rsd.
Thanks, Joan
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Old 03-04-2007, 01:31 PM #9
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Thumbs Up I now have a LADY!!!!

And I will never have another male doctor again as long as I am able to hobble!!!! Seriously. I found a wonderful Physiatrist (Yes I spelt that correctly) here on Cape Cod Mass and have had her for about 4 years. She has seen it all and I'm happy to show it to her. Hey when it comes to fixing my pain - It's ALL Good!!!!

Chin UP!!!! Mark xoxoxo
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MARKY MARK THE MAN FROM MAINE...GOT RSD AND LOST HIS BRAIN!!!. AND NOW HE HAS TO USE A CAIN!!!
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