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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Aloha Evyeryone! It's early here, 6am, & I don't type the best right now. I took my meds a 1/2 hour ago, but I still might have some typos. I think I opened a can a worms of here. :eek:
I'll try to answer your questions in order that I received them. First wil be to Rrodomyhero- My lawyer told me that he has a cnother chronic pain client who was on Neurontin or NeROTTON, & that where I went to have my tooth pulled is amobile dental clinic. Dentists voluntreer their time to help the needy who don't have dental insurnce (Like us adults where medicaid or medicare doesn't cover it!) He sid that one dentist there who worked on his client told him that there are studies that neROTTON over time will rot your teeeth. My dearfriend Kathy whp passed away, April 30, 05, was on 3600 mg for over 3 years. She died with just 2 teeth left, & weighed 80 pounds. My dental problems started too when I was on neROTTON 4 years ago. I remember having a root canal on my lower left (the one I just had pulled, and another one in Jan 2003 on an upper left. My teeth kept huting, so my neuro said to go back to mr. root canal and have him check it out, bgecause my normal dentist, took xrays, & found nothing wrong. Well Mr. Root Canal happy dentist spent 10 minutes, and after more Xrays, said itnothing shows up on your teeth The dental pain, and he started poking both of them. The top one he just did, said it needed another root canal $750?? :rolleyes:, and wehn he poked the bottom one I almost kicked him in pain. The problem is that when I had another ful body bone scan in 11/04, looking for bone cancer, it showed up in my left jaw! :eek: That's why it didn't show up on any dental xrays, because it was in the bone the whole time. I never recapped the top root canal, cause they wanted $3K to crown it (welcome to hawaii). After my friend lost all of her teeth, I said I'd rather wait till it had to be pulled.
Itoo have alot of shooting p[ain in my jaw area, with blinding headaches. My neuro has documented that the RSD can spread into the myofacial area, sinsce my neck surgery was so close to the c level in your neck, which I believe is C4 & 5. I'd have to look on my RSD support group papers to be sure. The dentist who ulled my tooth, on,ly took 5 minutes, & their was immediate relief of pressure until the novacine wore offf! When I sa my PCP she said to go back to the dentist, and show him myswollen jaw, cause she has never had a tooth pulled, that swelled that much! He told me to take anti biotics, (which I 've been taking for 3 weeks now, and an antiinflamitory. It's slowly calming down a bit now but allmy teeth hurt. I'm tired of eathing soft foods. I only weigh 104 on a 5' 6'' frame. But I do my best.
c3 covers the area on my chart--the jcheeks, outer ear, face bones, teeth trifacial nerve. The only research I ever found was adhesive arachnoiditis, and Sjogren's syndrome--which in RSD affects the eyes and teeth.

Now to get to Kim's problem. Deep breath. I think research is done that RSD can be caused from surgery. People who have surgery tend to develop RSD. While I was watching tis ping pong game between my neuro & ortho as which surgery to do first and which surgery wc would pay for, my left hand was turning red, whit and blue! Extreme dystonia developed, I held my left arm in a fixed position to protect it from further harm. The neck surgery won, and I had to then fight with the Dept. of Labor to get them to pay for it which too another 6 months. My dr's suspected RSD but never told me. After the surgery, I was doing much better until I started PT, or pain and torture, for the 4th time. I started soaking the sheets there, and even with gentle manipulation, I was having extreme temp. changes. MY PT wrote a letter to my neuro, saying he suspects RSD and over the next 3 months I was kicked out of PT again. Eric didn't want to be responsible for my health. It was a very trying time for me. I quit the support group I started, and became very depressed and bed riddin. My 2 girls, I'm a single mom, had to take care of me and them. They were 15 and 11 at the time. I then got into a car wreck, from the neROTTON, which made me more depressed. I would do things and could not remember where I was going. It took a good year for the neROTTON to get out my system. Sometimes I still have that RSD memory loss, & I forget where I put things! So KIm, I can truly sympathisize with you. If it makes you feel any better, I flew to San Fran to see a RSD specialist on my money, and he didn't believe that I had RSD. WC never got that report, because they never paid for it. I started to closed my case in DEC 2003 , too sick to even sign the papers. My attorney had to come to my home to do this. My immune system was shot, and I was sick all the time. I too had thoughts of killing me and reading the obits. My friend Kathy, who had started on the STS machine and who came to the support group in a wheelchair, then crutches, was suddenly walking without them.
:) I wanted to start treatments with the STS machine, but wc denied them! After I got my settlement, I started treatments, and after the 3rd treatment I slept for the first night in 5 years straight through! I bought the machine for home use, and after 1 year, I am alive and moving and I'm starting to get my life back. I now have a friend Laurie, who is a bartender ( I was a waitress), and after 2 months, she too is moving more than she ever has. She never watches TV, but still has bought of crying, because of her family's demands (they think she's is cured cause she is getting back to her old self), but she is overdoing it. You got to take baby steps. You have to think how long did it ake me to get here. There is no majic pill for RSD, it takes time and the right tool that works for you to get your life back to where you can function one baby step at a time.

I hope I answere your questions. I have to take my 13 year old to the airport now. She won a sport scholarship to go to camp in CA for 17 days. But I'll be back. Take care and have a pain free day. Follow your dreams, & It's good to be bak on the boards again. Aloha :angel: Skooze





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