Reflex Sympathetic Dystrophy??????

[matt]

Hi guys. Sorry that I haven't posted in a while. Hurricane Rita hit us head on and we lost everything. We are just getting some of our pocessions from our house that is now several, several miles from where it was.
But before Rita just gracefully come about, I had gone to Shriners for a checkup. They diagnosed me with a very rare neurological disease called Reflex Sympathetic Dystropy. It is a damage to the nerves of the sympathetic nervous system. The symptoms are feelings of burning, stinging, pinching, stabbing of the affected area. You begin to have many flare-ups daily. RSD is sorta like a nerve cancer. It can spread throughout the body, until there are no nerves in the body that have not been affected. But, you can also go into remission from the disease. And it can go away forever. So, that would be great to happen.
I was just wondering if any of you have ever heard of this disease? I would really like some help on the treatments that are available.
Well, everyone, take care and have a good weekend!!
Ross!
And if you want to learn more about RSD, you can go to the following website:
www.rsds.org

[LindaRacine]

Hi Matt...

I know one person with RSD as a result of spine surgery. As you mentioned, thankfully, it is a VERY rare complication. I'm so sorry that you were one of the unlucky ones, and hope you're one of the people who beat it.

Regards,
Linda

[Carmell]

Braydon had an episode of RSDS that lasted about 8 weeks. At least the neurologist, 4 neurosurgeons and NP decided it was an RSDS episode. Braydon took Neurontin to help the nerve-related pain. This happened 2.5 years ago. Hopefully it will never happen again. It was NOT a fun experience. Hopefully you will find a good treatment that works for you and makes your RSDS go away forever. There is a new drug made by the same people who make Neurontin called Lyrica. Maybe this is something to ask the docs about. Lyrica is supposed to be a better drug. My husband started taking Lyrica last week for symptoms of nerve-type pain due to his MS. Interesting. Good luck.

[matt]

Pain Managment

Hey guys. Well, I just wanted to tell you that I finally found a doctor for my RSD. I don't know when I will be able to start the treatments because of all the chaos still going on from the hurricane, but when I start, I will make sure and inform you of it! Take care! Ross

[Froggybee19]

OUH! I take Neurontin for nerve pain due to 8 spinal surgeries and it has helped a lot. I will ask my pain doctor about the new med that might be better. I can't take a very high dose of Neurontin because it makes me space out, maybe this one won't and I can take more and it may control the pain better. I have been having bad incedents with the nerve pain lately.

[mumof5]

Hmm..

I have just read this and I have looked at the site that you have put the link to, Matt.
I am wondering if this could be Amber's problem..
What other sypmtoms do you have Matt? and how was it diagnosed?

Cheryl
P.S. Thanks for the pics you sent me of your home town, that link to the news footage was incredible.

[matt]

Hi Cheryl. Well, some of my symptoms are a really bad burning, stinging, pinching feeling. Cant stand for too long. The RSD is in my upper back so my arms hurt sometimes. I sure hope that you guys find something out soon! Take care! PLZ email me or IM me. Ive been worried! Ross

[mumof5]

Hi Ross, How is your back now?
We still are not sure what is going on with Amber, the blood work is good. We get the bone scan results on Dec 1st. Her pain is still the same, even with 30mg of slow release morpine twice a day, as well as all the other stuff. I hope we start to get answers soon.
Take care of yourself and keep us up to date with what you learn about the RSD.
Cheryl

[matt]

Hi Cheryl. Im happy to hear that all the blood tests came back negative for anything. Thats always some good news. As for the RSD, I had an appt. with a pain management MD the week before the hurricane, but then, of course, Rita came along. So, I still haven't gone, and don't know when I will be able to. $$$ not at good supply with a natural diaster <grin>. But, I will make sure and tell you what is going on. Hopefully, I will see you on MSN or Yahoo. Is there an email addy or something that I could talk with Amber about her back? Or is she one of the ones who don't like to talk about it? I know a few people like that. But its always good to talk about it. Well, talk to you soon!Take care! Ross

[LindaRacine]

Hi Matt...

Aren't you covered by insurance?

--Linda

[mumof5]

Ross, Yes Amber is on msn. I'll give you her addy when I see you online, OK. I can only imagine what you must be going through with worry about your back ontop of Rita.
Cheryl

[matt]

$$$$$$$

Hi Linda. Yea, we are covered by Blue Cross and Blue Shield, but it is only hospitalization. So, all outpatient treatments like the pain management, are not covered. So for the last 3 years after 5 foot surgeries, 5 months of tests for my hip, and a Scoliosis surgery have all been paid out of pocket. In all, we have paid $176,500. Lots and losts of money.

[nikyergen]

Ross, Did Shriners do you back and foot surgeries? If not, they should of. Crystal had her back surgery and is scheduled for foot surgery soon at Shriners. We didn't have to pay anything. If you haven't used Shriners in the past and are still under the age of 18, get switched over to them soon. Shriners will do anything orthopedic at no cost to you. I am so glad we used them. We couldn't of paid what the insurance wouldn't pay on Crystal's surgeries. By the time Crystal has her foot surgery, they figure her surgery costs will be in excess of $275,000 this year alone. We would had to pay over $50,000 out of pocket. Using Shriners we didn't have to pay anything.

I sure hope you get to feeling better soon. You kids are way tougher than any adult could be.

later,
nikki

[matt]

Hi Nikki. I did have my Scoli surgery at Shriners in Shreveport. The foot surgeries were done in Houston by a Dr. Blumfield (Absolutely great doctor!!) They are the ones who are telling me to start pain management, but they don't do it, and they don't help with the costs. So, that stinks to me! Im starting to hate my body. Im starting to HATE pain. Ive had pain for the last 4 years, and Im so tired of it. At first it was bothersome and a nuisence, but now I HATE IT. Im just so tired of it. But, life goes on. I love what you said about us being tougher than most adults. I never thought about that. LOL. Well, I got to go. Talk to you later! Thank you for your response! Hope to hear from you soon. Ross

[mumof5]

Keep your chin up Matt. Remember we are all here to help. BIG virtual HUG on its way Matt. Have you tried natural therapies for pain relief? Maybe that is the way to go. You have a lot of other stuff going on as well and that is not going to help with your pain management either. I know you are a strong person, you will get through this.
Best wishes
Cheryl