Reflex Sympathetic Dystrophy (RSD)

[penney]

Does anyone know of any names of good neuro.Dr's. in Kenyucky who are good with RSD? I'm getting desperate! I can't get an appt. until Oct.30. I know I don't have alot of time to get this into remession. I had foot surgery on Aut.10. The Dr. that did the surgery say's it is not RSD, bone scan proved it is. Thanks Penney

[jimbo320]

Hi Pennie,
Don't listen to the surgeon, RSD involves the nerves and he doesn't want you to think it was from the surgery. I don't live in KY so I can't help you in knowing anyone. Sorry you're in this mess.

Jimbo

[penney]

Thanks jimbo320 Is there anyway to prove it was from the surgery? I never had any of this before the surgery. Now he is bending over backwards to help, I guess it's because he could see it in black and white that I do have RSD, He was quite suprised to see that it had already went from my toes to my ankle, my family Dr. said it is aggressive to already be in my ankle! The surgen has even given me his cell phone # ,like that is suposed to help now. I think he has done quiet enough already! He didn't even question me about why I went to my family Dr. or who ordered the bone scan, I thought that was odd. Because he should of ordered thoes test his self from the way my foot looked, and from the symptoms I was telling him about, but he just blew it off. So now I really don't know what to do I guess wait for an appt. with a neuro, Dr. This hasen't only messed up my foot, but my whole life! Family dosen't even understand ! Thanks for listening. Penney

[reruho]

Penny,
His attitude is not uncommon. Surgery is one of the most common causes of RSD. What he should have done was pay more attention to your complaints. Have you been sent to PT, yet?

I had a simple fracture and my symptoms started around the 2 week mark. I started complaining and asking questions at every appointment. I asked the orthopedic surgeon about it, I complained to the OT about it and everyone just said Hmmmm and wrote a note about it. The OT was sending reports of RSD-like symptoms to the Othro. The OT later told me she did not like to talk about RSD because she didn't want me to lose hope. No, instead I was wondering amidlessly, doubting my sanity and confused as hell. I would have perferred an answer.

I went to a surgeon for another problem and asked him about it and he was the one who told me what it was. He told me to ask the Ortho out right, "Is this RSD?" The orthopedic surgeon said yes and I was shipped off to Pain Management. I doubt I would have had an answer if I had not cornered him.

Your question about treatment is a good one. The sooner you get into PT and treatment the better the outcome. It does not mean you will necessarily go into remission. But, you may get to a point of good pain control and live a pretty normal life with the proper medication. The longer you go untreated, the more serious this thing can become. Also, the degree of severity is not directly related to the degree of injury. You can have a mild case from a serious injury or a serious case from a minor injury.

Has this Ortho referred you to a Neuro? Does your insurance company require a referral? Is this WC? (That is a whole new bag if it is WC.) I think your best bet would be to get on the phone and start calling the local Neuros office's and asking them if they have any experience with RSD/CRPS patients. If they hesitate, look at someone else. Ask if they know of anyone that treats this condition. You seem to have a good repore with your family doctor, ask them for a name of someone and a referral if you need one. They may be willing to help you find someone that can help you. Another place to look may be at the big University hospitals.

I recommend you start reading about this condition. The more knowledge you have the better. Now, let me warn you that you will read some pretty bad stuff. Not everyone is severely affected. This disease has a mind of it's own and the path and the speed varies from person to person. I will tell you it is normal for it to spread within the first 3-4 months. Mine spread from left my wrist up my left arm. I now have more problems with my upper arm than I do with my wrist. Some good sites for informstion are RSDhope.org, RSDSA.org, and rsdrx.com.

I will share the best advice I was ever given by a doctor. My old primary told me to become an expert on any disease/condition I had to protect myself because doctors can't know everthing.

If you don't think it is right--QUESTION IT! This disease is not like other conditions and many standard treatments are dangerous.

Do not use ice or let anyone put Ice your RSD/CRPS area. This will cause more damage to that area. Dr. Hooshmand, RSD expert, has a great explanation on his website (www.rsdrx.com).

And about the family- that is one of the hardest parts of this disease. They keep saying, "When will this end?" or "You just need to quit whining and get over it." Your family may also try to guilt you into doing things that will overtire you or aggrevate your symptoms. Don't let them. Just tell them NO and don't even feel the least bit guilty about it. You will be the one to suffer from the pain, not them. Protect yourself. Unfortunately, they don't understand because they refuse to understand. They can not imagine someone that looks normal in many ways can be so fragile. I think RSDhope.org has some handouts that you can give them to read. I have a couple I carry (in my purse) to explain my condition to others. Giving them (your family) the information does not mean they will understand or accept this. My dad made jokes about it, so I just tuned him out and I do not talk about it with him.

Reta

[jimbo320]

Pennie,
Sounds like lawyer time to me. Try to find an RSD lawyer, should be someone familiar with RSD. Seeing the neu doc is good too.

Good luck, Jimbo

[penney]

jimbo320 I wrote you my whole story. Hit preview when I was done and it disappered. I don't know what happened. Thats the way everything is going for me now nothing is right. I've been going to PT for 3 times a week now starting about a month after my surgery. I have Dr.Hooshmand's book I pick it up and read it and either get heart broke or angry, put it down and go back and read some more. I'm hoping it hasen't been to long for me to get this into remission. How can I prove it happened because of surgery? Any suggestions? Do you know of anyone who gets disability because of RSD? My family Dr. told me that I most likely would not be able to go back to work.(factory) That broke my heart, I'm not a couch potatoe or I wasn't until now! He said I would have to see the surgen again so he would know what was going on and for disability, I didn't understand that. It was my PT. guy who said you have RSD and I'm calling your Dr. he just blew it off like it was nothing, he said they are just trying to make a diagonis and they can't do that. Well when I saw him 2 days ago and I had my bone scan report and film with me he was shocked,he did'nt even ask why I went to my family Dr. about my foot. He couldn't believe it had gone from my toes to my ankle already. I told him My family Dr. said it was aggressive and it was forever. That broke my heart also. I'm either crying or very angry all the time now. Any one I try to explain it to says oh I bet thats what is wrong with me, even my husband, mother in law, friends. I just think to my self you are crazy they have nothing like this. This is hell! I tell them they better hope they dont have it. When they say yeah thats how I hurt, burn or whatever, I'm thinking this dosen't burn it's on fire, it feels like there is no skin on my toes. Well I'm tired of trying to explain it. Just be quiet as I can, cry alone and try to do what I always do around here. Which is really hard. Thanks for listening and understanding. I don't know what to do about a lawyer, I got a copy of my record and none of the things I complained about are in there, It just says I'm improving from the surgery. Yeah I'm improving I still can't even get a shoe on my foot yet. God Bless You Penney

[jimbo320]

Pennie,
I am so sorry to hear of all your troubles. The pain and complaints you have are very common with RSD. The fact that the doctors don't treat it correctly only can be summed up as they don't want to.
If it were me now, I would consult an RSD lawyer. He'd probably would have you first consult a different neurologist. Your complaints not in a record sounds fishy to me. Keep in mind that RSD is often caused by surgery, not because of it being botched, just because. Doctors tend to avoid thinking past the point of the surgery being done right.
As far as disability goes, yes disability is possible but with doctor reports that state the severity of the RSD . Which brings us back to a good RSD lawyer.

Good luck, Jimbo

[chrisandrob4ever]

Penny,
I live in Nicholasville and go to the Spine & pain center. They are very familiar with RSD.