I know how hard it is to open up to others about how we feel with this problem. I am also very shy and sometimes there are things I want to express, but i don't because of being shy. If you wife would like to pm me she can. I know we live kinda close. I have gone to GT university, and have thought about Johns Hopkins. but after you saying about the bad experience I'm not going. At this point I think things are at a standstill, and life goes by day by day. I'm along for the ride.

Mary

I am also available for emails if your wife would like to be email buddies. I know I appreciate my emails buddies in NT;however, sometimes, women need to chat with other women about certain subjects. Nothing personal guys

Dear Suzy,

Thanks everyone. lostmary, keep this one thing in mind about Johns Hopkins is we went to a pain management facility at Hopkins which was dedicated by a private citizen or family bearing their name. Hopkins is very large and possibly would be other facilities much better suited to handle those with RSD elsewhere at Hopkins. The place I would check out also lostmary which is close to you is George Washington Hospital Center in Washington and a Dr. Chin. She was very professional and a very pleasant doctor. She's the head doctor at their pain management facility.

HI! I'm new to the forum, so forgive me if some of this has been covered.
#1. I moved here from NC where I had an amazing Specialist out of Greenville SC; Dr Robert Schwartz. He is a WHOLE BODY RSD Specialist; amazing. If anyone is looking for a specialist near SC...he is your man!
#2. My husband is active duty Air Force in Central CA and I am having trouble finding an RSD MD in my health plan: TRICARE! I've been lucky and have been in remission the past 1 1/2 years; well the fun is over and the evil monster has returned; and I'm SCARED to death. I can't even begin to tell you the phone calls to offices, I've heard everything. The funniest and most absurd was a MD who refused to take me on b/c I have a Boston Scientific Stimulator. Apparently he only works with patients who have a Medtronic device!
Any ideas would be appreciated.
thanks in advance!

Hi JimKing,

I live in Tampa and my 16 year old daughter has RSD and of course it took several years for the diagnosis to come about. She has gone through two pain rehab programs for three week intervals at the Childrens hospital at the Cleveland Clinic, which helped with the coping part of RSD, but not the pain. Of course she is taking many drugs for pain, is in pt/ot, pool therapy and symatheitc nerve blocks, four to be exact with no relief, and of course what ever else they send her to. She has had another severe flair up and we went to see Dr. Kirkpatrick at the RSD Institute here in Tampa. We loved him, he has a unbelievable understanding of RSD. My daughter is scheduled for Ketamine Infusions in the next week. I have talked with many other patients that have gone through the Three day four hour infusions and have been pain free for a minimum of 5 months. These are adults.
I know that they are expensive, but here is some advice. I am financially strapped due to all of the medical treatments over the past six years with my daughters fight with RSD, especially taking so long to be diagnosed. But, I liquidated my 403b, they have new laws now, that if you have out of pocket medical expenses they will liquidate retirement funds. The institute I understand will fight with you to get reimbursed by your insurance company. The good thing is that the infusions have been approved by the FDA, if there are people with RSD willing to go through this and show that it works, even if it is only some, maybe we can find a cure for this horrible disease. Dr. Kirkpatrick volunteers his time at the Clinic, he receives no money for treating any patient. The cost is in the surgical center and with the ketamine. It costs a total of $8,000.00. $500.00 for a two hour consultation and $2,000.00 for three days, that you pay before each infusion and then you have 30 days to pay the final $1,500.00.

As a parent I am so scared that my daughter is going to be taking these infusions, but she has a fighting chance to go into remission. If not, at least we have tried...Like I said I live in Tampa, and if anyone is heading to the Institute or needs more information I would love help, you can send a private message if you need help in Tampa. I am 20 minutes from the RSD Institute. On another note, after the 6 years of finding someone that understands my daughters illness, Dr. Kirkpatrick was the only one. We walked away feeling that someone finally believed!

My thoughts and prayers are with all of you and I pray for a cure...

Sandy

Hi! I can understand your wife's sensitivity to talking online, you never know who is reading or whose condition may be better or worse than yours. I feel that my situation is pretty mild in comparison to many of the others that I read about on here. I am sorry that your wife is struggling, but it helps to see others that empathize and understand what you are going through. I have been dealing with RSD for 11 months now. I have had allergic reactions to every oral pain med I have tried thus far. Thankfully my pain is much better than it used to be. I led the children's choir at my church and played piano for our church choir. My injury was to my rt arm and I developed in my entire rt arm and hand. I am predominantly rt handed and have lost most use of my rt hand, but can still cope with help. I am trying to play again to build strength. If I have learned anything through this, it is that you can't let it control you and keep you from living. I am glad that she reads the posts and hope that someday she will feel comfortable enough to post herself. SHe is lucky to have an understanding husband.

Sincerely, Another Suzy Ha!

Hi,
I'm new to this group. I've had RSD/CRPS since 2005 and had a wonderful dr. in CA but after searching for months found one that I was not happy with here in VA. Now I no longer have him either because he has decided not to care for patients with my problem and who are non-surgical.
I am taking strong pain medicine and about to run out but cannot find a doctor close enough to get to on a regular basis since I have to go every month to get my prescriptions. I have many other health issues that prevent most treatments and pain medicine is the way I must go but most doctors in the area only want to do implants. Can anyone help me? I also get spinal nerve blocks periodically. I also have terrible spinal problems exacerbating my pain.
I would appreciate any recommendations of doctors in this area who might be right for me. I am getting desperate.
Thanks so much in advance.

Welcome. You will fins lots of support here! In what part of virginia do you live?

Jim
My daughter had several session of outpatient ketamine with Dr Chin last year with no real results. Something made me keep trying. I read Barby Ingles books, talked to her and talked to my daughters pm doctor at college. We stopped all medications except her Cymbalta and went at it again with amazing success. I then went back to Dr Chin and told her what happened (Dr C does her boosters, college does her inpatient). We went back to the boosters with no pain medication and had total success. We go back every few months and the 3 days always resets her back to between a zero and a one. Maybe you and your wife would consider this. I would be happy to provide you with any info if you decide to try it.

Liz

Calracci, Dr. Edith Q. Bautista-Quint, is on Duke Street in Alexandria, Virginia. I believe her number is 703.823.0063. This doctor has been treating my wife's RSD for 3 years. I realize Alexandria is somewhat of a drive, around 40 miles or so but may be worth it. Although you'd think the DC area would be chock full of doctors who are savvy with RSD we've have found the opposite is true. Yes they're doctors who will treat it but not as many as one would think. Good luck Calracci and welcome to NT.