Help
 

My son has been diagnosed with RSD/CRPS, the result of an accident at work. We live in Montana and there are no specialized or research centers here in the state. Can someone please direct me to a research center or specialized group for RSD/CRPS in the pacific northwest, thanks?

:confused: Al

Hello Al,

I don't know of anyone there in particular.
Go to rsdsa.org and they have a doctor finder.

Short of that, shop, as if you're shopping for a specific commodity.
A doctor familiar with and who treats RSD/CRPS.
That would probably fall under Neurologist. Try your hospitals, and call the Chief of Neurology's office first.
(Many doctor's don't like to treat such Chronic conditions, for lack of improvement, and it's frustrating for both the Doctor, and the patient.)

I wish you, Your Son well, but, this is possibly a lifetime job, your best bet is to be very strategic, and looking under every rock for help for your Son!
The earlier this is treated, the better the long term outcome.
BTW, I've had rsd for 26 years, and went undiagnosed for 7.

Get him to SOMEBODY, be it a Neurologist, a Pain management doctor, or, chiropractor that can give him some relief. (I got by those 7 nasty years with a Chiro).
Keep him in the "system", so that these people can always be on the 'lookout' for more and better help!

Pete
asb

I am so sorry for your son's diagnosis and for you too... This is such a desvestating disorder and you have our support at all times..don't leave our side here..This is a wonderful forum... educational and supportive... as far as finding a treating physician..how about a recommendation from your previous Dr. ?? Or as Pete said log into the RSD.org site..much information there..I see a Pain management Dr. but a neurologisit is good also.. We have our hands full living and working with this illness it can be a scary run but not with us by your side... Do your homework and don't stop until you feel comfortable..then read some more!!

Let us know what we can do for you on here~!!!!

Hugz, kathy :grouphug:

Please contact RSD.org. They can help,but do it right away,the next 6 months are crucial-Fondly-Carol
Also see if there is a Support Group listed at RSD in your area!!!!

Do you live near Wyoming?

Jim Broatch of the RSDSA provides a list of ketamine providers. On the list is the following doctor in Casper, Wyoming:

Tuenis Zondag Neuroscience Center 307-265-7246

If that doesn't work for you, I also see the following doctor in Salt Lake City, Utah:

Andrew Tallbutt Life Tree Pain Clinic 801-261-4988


The best of luck to you both. XOXOX Sandy

hi
 

How old is your son? Young people have a better chance of getting out of this mess if they do the right course of tx,,,,,

Debbie

Hi Al, Welcome to NT, although I'm very sorry your son has this disorder. I've had this 15 years, am 61. A teenage girl from Arizona, went to Seattle to Children's Hospital for RSD. I'm sorry I don't have the name of hospital. But I have called hospitals before and asked for Neurological Dept. Head and inquired about RSD. I have found accurate information rather than from a receptionist. Also Administration, Education Depts.
Another good website is rsdrx.com Dr. Hooshmand researched RSD 40 years in Florida. Under his website is called puzzles list. It is 146 questions and his answers. He is retired now. but has an associate taking his patients.
My Dr. is a neurologist, psychiatrist and a pharmacologist. Does trial studies, teaches, just built two clinics here in Scottsdale, AZ with HBOT, which I am going to try. I have full body and internal RSD plus trigeminal neuralgia, fibromyalgia, PTSD, and now having lung issues-possibly sleep apnea-am waiting to get tested. The ketamine trials were done about 10 years ago at the Mayo Clinic-Scottsdale.
On Neurotalk on March 7th there is a question regarding lung involvement and the 2nd post has a website mentioned I found very informative.
RSD reacts differently to many of us as well as meds. Please research before doing anything. Some have gotten spread from a procedure that is supposed to arrest this disorder. I was misdiagnosed and wasn't correctly diagnosed for 4 years. I flew a couple states away to a well known sports injury orthopedic group, he knew in one minute followed up with nuclear med test. Our bones deteriorate. It is a very complicated disorder. Most of us are on a combination of meds. There are meds that help with nerve pain, that aren't opiods.Raised blood pressure is a common symptom, immune system deterioration, and body temperature control. I go from ice cold to red hot steaming. This is a serious disorder and extremely important to get treatment asap. I found physical therapy, massage therapy, and pool 86degree water therapy good for me.:grouphug:
Please ask away, we are 'here for you' and want to provide support and comfort. One of your new friends, loretta :grouphug:

Thanks for what you provided.
Because this matter is work related (Workmen's Comp) it has been a real struggle (last 1½ yrs.) I can see a legal battle brewing, thanks again.

Al

Thanks for the support, we'll both need it! I'm sure I'm not relaying anything all of you folks haven't experienced but it's VERY FRUSTRATING, mentally taxing for myself and son, not to mention the chronic pain he's dealing with.
Again, thanks.

Al

:)Thanks for the info. Have you heard of a Dr. Shane Brogan at the University of Utah?

Al

He's 34, I have read since yesterday and was surprised to see how many children and how a little accident can bring the onset of this hidious disorder.


Al

:) Thanks for the info. This disorder is a result of a work related injury and is a Workmen's Comp case which is aggravating an already serious matter. Thanks again for the information.

Al

You are correct in it being mentally taxing to be the caregiver. Find something you enjoy doing that is not related to any type of medical problems and it will give you some mental relief. I think the hardest part is the frustration of not being able to help when they are in so much pain. Take care of yourself otherwise you will not be able to take care of the person in pain.

QUOTE=smile357;632632]You are correct in it being mentally taxing to be the caregiver. Find something you enjoy doing that is not related to any type of medical problems and it will give you some mental relief. I think the hardest part is the frustration of not being able to help when they are in so much pain. Take care of yourself otherwise you will not be able to take care of the person in pain.[/QUOTE]

:) Thanks for your suggestions and words of encouragement. You hit the nail on the head about taking care of yourself (been consumed over the past month) and not being able to provide for the one most in need, again ... thanks.

Al