My name is Austin Wood i am 18 and i have been dealing with RSD/RND for over 5 years now. I have tried every medication available as well as all treatment procedures except one so far the Ketamine Coma. For most youth i strongly recommend Dr. Sherry of Children's Hospital in Philadelphia i have been to his treatment 3 times and other than my last time in the program have found it by far the best of all other procedures/medications. But i warn be prepared to go through worse pain than your in now to get better. The treatment is a VERY intense physical therapy so much that adults are not able to under go the therapy because there body's are not able to handle it. It is basically a switch though adults have been found to have much success with nerve blocks where as youth it makes there RSD/RND worse. My RSD/RND occurances are as bellow:
2003-Left Foot
2006-Both Knees, Hands/wrists & Chest Wall
2007-Nerves Directly Around The Heart, Stomach
2008-Both Eyes
For my first 2 treatments with Dr. Sherry My 2003 & 2006 Occurances have gotten to the point i can handle and function normally with them. And if it were not for the 2007 & 2008 occurances especially of the nerves directly around the heart i would be functioning quite ok. But as fate would have it the RSD/RND continues to attack me relentless. My next and unfortunately last resort is to try the Ketamine Coma with Dr. Schwartzman, which i am currently on the waiting list for. For me the RSD/RND has basically destroyed my life, my education and college dreams are totally obliterated and life as itself is beyond what words can describe. The attacks that occur due to the RSD directly around my heart are unbelievable. I am in and out of the hospital but because of my youth lucky enough that it is not damaging my heart. But as i have been warned as i age this will turn to a severe problem which seems small in my view as the pain i am experiencing now is far worse than anything i ever thought possible. I each day suffer from small attacks which are constant and than the usual mediums and large that come along whenever they wish to happen. These attacks mimic strokes and heart attacks as well as with the larger cause complete paralysis and you become unable to breath. You can feel each nerve in your neck trace up in severe pain and it stops all air flow. Than after a period of time which keeps getting shorter after each one i get what i call an ultra attack and they land me in the hospital. But of course nothing helps and nothing can be done the attacks just get to control as they wish and run rampant. Thats why my last hope with this Ketamine coma means everything as this treatment either works or does not.
Alot of people ask me how i continue on and basically i have no clue the human body is not ment nor able to endure with such basis i should either be dead or completely have lost my mind so far but instead i stager on each day continuing on in the never ending torment. Each time i went to Dr. Sherry's program i was in search of someone who was at least remotely in understanding but what i find is those which are lucky enough to have it once or twice go through the program and have a normal life.
I thank you for your time and am more than happy to hear the stories of those fellow RSD/RND members. If anyone has gone through the Ketamine coma i am very much interested in speaking with you.

Welome to the group. I am sorry to hear that you are going through so much at your age. I have 2 Grandson's and they are both sports nuts and because I have RSD I do worry about something happening to them. You are so young to have to go through this.

I did want to say, I deal with the chest pains. I have been like you, I ended up in the hospital twice for them and went through angiograms. Today I am having a stress test done but my pain has to do with other things besides my heart.

What I have and a lot of Drs. most likely don't do it but I have triggerpoint injections in my chest area. My Dr. uses lidocaine but never steroids. He says no to that. It took us a long time to get the chest area calmed down and it did start up again awhile back and we started the triggerpoint injections again. Right now it's calmed down again.

Something else I use is lidocaine patches, you might ask the Dr. if that is a possibility for you. I know because of your age, they will take care of you differently then older people as you said but this might be something to ask. I do put them on my chest area. I have been told it was ok to do that, I have done it for years and they do help some. The TP's I get don't hurt either. My Dr. doesn't use a big needle.

As far as the coma, several on here has had them and I know they will come on here to talk to you about them.

I did want to say too that you might be right on the PT. I had almost 4 years of PT for RSD, Fibro, and TOS and I didn't do agressive PT. It helped me immensely.

I am sorry that you are going through so much. It will get better but RSD is so time consuming to calm down or get people into remission. Hope you get there soon.

Ada

Hi,
Sorry to hear that you had to go through this RSD mess at such a young age! I have 2 daughters, age 20 and 14. I can't imagine if anyone of them would suffer RSD. My 14 y.o. suppose to have her bunion surgery, but i postphoned it due to the chance of having RSD from the surgery.
I don't know too much about Katemine coma. However, i do hope it will bring you full remission. You deserve a much much better life. I will pray for you.
What did your doc say about the chance of getting RSD in your heart and chest? I have never thought of RSD will attack that area as well.
Wishing you best of luck and pain free!
Numb

Dear Numb,

RSD/RND can attack practically anywhere it likes in the central nervous system, i had never thought it could attack the nerves directly around the heart though either but it can. The RSD doctor in Philly Dr. Sherry told me after i had went through his program for the 3rd time and it failing to work this time that i was suppose to just live with it. Which years before i had full confidence in Dr. Sherry and still do for external RSD/RND but i am afraid i have found his general knowledge and experience in the stage i am in now unfortunately is not there. Thats why Dr. Schwartzman is my final option as he has been dealing with far more cases than Dr. Sherry and has been studying RSD for over 30 years. The Ketamine Coma is my last resort i am not going to even acknowledge the possibility of it not working. I thank you for ur prayers and luck i need all i can get.

Hey Austin,

My 17-year-old daughter also had RSD in her stomach, and she too participated in Dr. Sherry's program. I agree with your thinking that what they do there does have the potential to help although Sarah, like you, found no relief for her abdominal pain.

I read that you have tried every imaginable treatment, and I'm sure it seems like that; but I just had to ask if you have ever had a chance to try hyperbaric oxygen treatments. They were the one treatment that finally stopped Sarah's pain and allowed her to return to the many activities that she was missing out on.

Hang in there, Austin ... and never, never give up hope!

Jeanne

While yes it has seemed like every treatment possible i have never heard of the "hyperbaric oxygen treatments" but i will be sure to contact my doctor once they open this morning and will ask about this. At this point i am trying any suggestion that others with RSD/RND are using that i have never heard of. I thank you for this new suggestion. You have given me a new sense of hope to rely on. As well it is nice to hear from another that has gone through Dr. Sherry's program. Thank you for your post. Hope you and sarah the best of the pain free years.

Hi Austin

If you were here I'd give you a big hug. My husband has RSD and is going to be trying HBOT soon. Here is a good source for HBOT centers:

http://miraclemountain.homestead.com/Providers2.html

We contacted a center in Great Neck and they contacted our insurance to see if it woud be covered and it is.


You may also want to contact Dr. Ricardo Cruiciani at Beth Israel in NYC regarding the transcranial stimulation. It sounds a little scary but side effects are minimal and dr. cruciani has tried it on himself. Deb started a thread here: http://neurotalk.psychcentral.com/thread45197.html regarding the treatment.

Sending hugs and prayers your way.
teresa, nyc

Here is Dr. Cruciani's info:

Ricardo Alberto Cruciani, MD, PhD

Vice Chair, Department of Pain Medicine and Palliative Care

Director, Clinical Studies and Translational Research, Department of Pain Medicine and Palliative Care

Director, Integrative Pain and Symptom Management Program, Department of Pain Medicine and Palliative Care

Director, Research Division, Department of Pain Medicine and Palliative Care

Beth Israel Medical Center
First Avenue at 16th St.
New York, NY 10003
Tel: (212) 420-2432
Fax: (212) 844-1503
Medical Specialty: Neurology, Psychiatry

Hi Austin,
I am so sorry you are going through this mess. I have a 19 year old son who is my rock and you have brought tears to my eyes especially with your last message about friends and family. My son and I have gone through the same thing. We worry about each other but it sounds like you are so alone. Where are you located? I am in Levittown, PA 13 miles NE of Philly. I too am on the "waiting list" with Dr. S. too for Ketamine so I know your pain. I have full-body RSD and Fibro, Rheumo Arth., Osteoporosis too so every day is a trying experience but I feel so bad for you especially because you are so young for this mess. I don't know if you are religious or not but I have become much more so in the past 3 plus years and when I am down I really do rely on prayer to help. If you are local to me I would like to see if you can see a great chiropractor who I have been seeing in Hulmeville for almost 2 years and she has helped me tremendously with twitching, discoloration and allover body pain. Please let me know. Send me a private email back so I can talk to you about it. I am very worried about you because I feel the same way too. I will keep you in my prayers.
Take care,
kathy d.

Hey again.
(btw, I sent you a pm)

My rsd has been going on almost two years (2 years in like 2 weeks). It started in my right foot from a gymnastics injury but quickly spread from there. My rsd is everywhere excepy my face, mouth, and throat.

Aww, I love cats too. I have one kitty.

Hey Jeanne. Sorry to hear your daughter has rsd as well. Send her my best wishes.

Nikki

I got 8 1/2 hours of relief from my pain on saturday night into sunday morning.
It is a dangerous relief mixture but if your pain goes beyond what you can handle for along time as mine has your willing to try anything that will work.
If anyone would be interested in what it was PM asking about "RJ"