Need info for top rsd docs/clinics in US - Reflex Sympathetic Dystrophy Message Board

ocean · 08-01-2003, 06:19 PM

I was just diagnosed with RSD 1 month ago. It was caught early. ...Now what to do to get it in remission. How do I find the top RSD docs/clinics? I feel I am on such a time limit I need to streamline the process with anyone who has good info. I will travel anywhere in the US. Live in AZ. Don't want to go to Mayo. Appreciate any help.

Here's a tip someone taught me. Put ***** hazel on paper towels and wrap around burning area. It is oh so soothing. A little stinky but who cares when you're in pain.

Thanks everyone. I wish you all a peaceful night.

AngeInBoston · 08-01-2003, 06:42 PM

Hi Ocean,

I'm so sorry to hear about your new diagnosis with RSD. My husband Joey was diagnosed in April after having surgery on his foot in late March.

Luckily, we found this Board pretty quickly, since I got right on the Internet to find out everything we could on this disease. If you go to [url="http://www.Google.com"]http://www.Google.com[/url] and type in "RSD" you'll get lots of websites about RSD.

Unfortunately, we have found it very hard to find specialists in RSD...and we live in a suburb of Boston, which is such a major medical location....Our Orthopedist did not know of anyone who specialized in RSD, but recommended we start with a hospital's Pain Center. We chose a hospital famous for Orthopedics, but then didn't like their slow schedule of only one block per month with a maximum of three...when everyone on here seems to have much more aggressive treatment. So now we're gearing up to go to another major hospital's Pain Center, who supposedly does have a Dr. who see's all the RSD people, but we don't know yet how specialized he will really be, and if their treatment plan will be any more aggressive. It's very frustrating, since I want him to see the best Dr. available too!

To muddle matters more, you have the option of going to a Neurologist, although when I was calling around and grilling secretaries on how experienced they were with RSD, I was told that Neurologists are generally just for testing and surgeries...and that we should go to the Pain Center first, who would refer us to Neurology if Joey needed some kind of test from them. The Drs. in the Pain Centers are generally Anesthesiologists. Joey has also been referred to a Pain Doctor who will be responsible for overseeing all of his medications and prescriptions.

Good Luck in your search! And remember, you have friends here who know what you are going through and are happy to listen and answer questions.....it's SO very frustrating that there is NO awareness of this disease in the general population!

Hope you have a low-pain day,
~Ange

cattys · 08-01-2003, 08:20 PM

~Beach~

Welcome to the RSD forum.

You are in a good position right now beings you are early into this.

I personally would recomend a Pain Managment dr. These dr.s are usually also Anesthesiologists. They specialize in pain treatment and are experts in the managment of painfull disorders. They offer a variety of treatments.

You should start recieving sympathetic blocks as soon as possible. With these you do have a good chance of remission. There is no cure for RSD and it never burns itself out or goes away.

welcome again, and if you have any questions or just want someone to listen we are always here.

Take care
Cattys

riceneuroni · 08-02-2003, 02:37 AM

Hi Ocean,

Welcome to the Board. This is a great resource for input and experience of all different kinds from around the globe. Pretty wild, huh? Sorry you're in this kind of pain.

Be sure you call any doc before bothering with an appointment, and ask lots of questions. If you want to look into blocks be sure the doc does blocks himself. Otherwise you're likely to just get a pill manager and end up wasting valuable time like I did.

Very few neurologists try to find the cause of RSD. It is classified as a symptom, not a disease. Most everyone just focuses on reducing the symptoms instead of finding the root cause for the nerves being out of whack. If you don't know the cause it's really hard to cure. With over 100 different causes, you need to find the rare neurologist willing to explore them all.

Don't just let them coerce you into an EMG. It is extremely painful and rarely reveals any useful info for newer RSD folks. Do your research before agreeing to this test.

You're on the right track trying to get informed. Learn all you can then pick the approach you're most comfortable with. You know your body best.

KYIMP

stickgirl · 08-02-2003, 10:46 AM

Welcome to this forum Ocean.

When your RSD is diagnosed early your chances are better for remission. I would check all the teaching hospital in all the major cities. I go to a clinic in San Fran and Oakland Ca thru UCSF. I have 3 Dr's, each a specialist in there field.

I'm not exactly sure where your at, have you tried the RSD foundations or groups. I have received lots of info from several.

I wish you luck, your in my prayers.

Stick