Just to update.. we went back to the ortho doc today, and the PM doc. Ortho says he has no answers, and PM doc is taking an extended leave of absense, but is referring Reed to another PM in the same city. He said that obviously the nerve blocks did not do what they were supposed to because Reed's pain is not only nerve related, but also involves bone, muscle, and sensory. He said that SCS is basically the only hope he has of getting relief and any sort of movement back. They are sending in a request for approval for trial SCS. Of course, this brings up a whole new set of questions.
He also raised his neurontin dosage and said he wants to see if this gives him enough relief to help him sleep . If not, then he'll have to give him sleep meds also.
I guess now we wait to see if WC approves the SCS. Any info on SCS as always, is appreciated!
Thanks for all your help guys.. ya'll are fantastic!

Hello Rita,

Welcome to a wonderful place for caring and sharing regarding this monster known as RSD. It is good that you found this forum!

One thing that I would like to tell you right up front is that you all should not feel pressured to make any rash decisions regarding a SCS or any other option. Ask lots of questions and by all means get a second opinion from a doctor of your choice!

Remember the WC doctors will not necessarily have Reed's best interest at heart. So proceed with caution. Read as much as you can about treating RSD so that you all will have some basic knowledge of treatment options being offered.

Finally, I agree with Gymjunkie about 4-months not being a long time. There is no magic bullet for this condition. What will work for Reed may be totally different than someone else. It took about 2.5 years for me to get decent pain control...but it was worth it.

Best wishes,
EJ

The doctor he is seeing wasnt referred by WC. So far they havent pressured him to see their docs. I know it's coming though, we've been warned. The doctor Reed is seeing next is to get another opinion. We've had 2 docs tell us he needs the SCS..apparently his RSD is progressing very quickly. We see another doc on Friday for another opinion.

Rita,

I have the scs. I've had it almost a year. It has given me my life back. far better then I hoped for. I won't say that recovery is easy, because it isn't. there are a lot of restrictions, but if one follows their drs. insturctions, then it should be fine. For almost 4 years I was in bed or a wheelchair. Now I'm back to taking care of my horses, and taking care of myself. It takes so much longer to do things, but at least I can do some of the things then I used to be able. I always recommend that you try the scs. If it works, then you know, if it doesn't work then again you will know. Yes, you are a bit uncomfortable after the trial, but after so long of not being able to take care of anything, I was able to get out of be on day 3/4 and walk thru a home and garden show with only a cane. I actually put on shoes and socks which I haden't had on in years. I love mine, and I don't think I could keep going on with out. Again...that's why they had a trial, to see if it does work. Please keep an open mind.

Hugs
Mary

Thanks Mary! We went yesterday for the second opinion, well, 3rd actually..and this doc agrees with the SCS recommendation. Not sure how to feel about that, but he did give us alot..I mean ALOT of information. He told us from his experience what to expect from WC, and that they will not be happy about the SCS. He set up an appointment for a psych eval, and said it would probably be near Christmas before everything was ready to go. He said Reed has to follow WC protocol, including the meds that havent been tried. He changed his neurontin to lyrica, which is keeping him awake even worse than before.. and cymbalta, and clonidine patch, niether of those he's started yet. The doc doesnt expect too much from them , but says they have to be tried. He told Reed that from the bone scan 2 months ago, his RSD has definitely progressed, and has spread to his knee (which the last doc was hesitant to say it was RSD there). The temp. changes and color changes and swelling are proof enough. he was also open to the idea that the nerve block may have caused spread to his right arm. This all just happened, and it's moving so fast I'm terrified. I'm just praying that everything goes well with the SCS, and WC approves it. This seems to be the one hope he has of walking again. The doc also warned Reed that trying to walk now, with all the numbness and everything else might not be the best idea, since a simple sprain can cause the RSD to go haywire. He suggested that he definitely keep it moving, but not trying to walk. he gave us some home therapy ideas, and said that I should gently exercise his leg several times a day. He seems to know what he's talking about, and he educated us on things we hadnt read about. So.. fingers crossed, and many prayers going up that everything goes well.

Hi Rita and Reed, It's really frightening to have all these things come slamming up against us isn't it. The thing is, some people react well to blocks and other don't. Same applys to meds. I've had this 12 years, now full body, no blocks, was misdiagnosed for a long time. I had the jerks and spasms too, especially while relaxing or sleeping. Those electric lightning bolts would lift my head right off the pillow, scared me to death. I was on neurotin for about 3 years 3200 mg. and now on lyrica. both have the nasty side affect of weight gain, and of course we are now out playing tennis 5-6 days a week, or water skiing all summer and snow skiing all winter, or being with our friends at the club doing aerobics, running 10k's etc.No wonder I stayed my high school weight for 30 years. And of course we had our one and only daughter at 30. She kept me busy, so much fun. She really has had a hard time adjusting to her mom's changes. She probably knows too much. She is court reporter and did deposition on RSD for a woman suing her DR. for omitting to tell her of the risk of getting RSD from the surgery. Rita, just keep reading all you can, the older posts have a lot of knowledge in them. Like be careful doing to dentist, it can get in teeth. That doesn't sound pleasant. I use the gas mask now and take anti-biocs the day of the procedure. I have it in my left half of face, with painful knots under the skin. I have the left temple trigeminal nerve problem. Some time my left eye is on fire for hours. That's a real tough one. In my opinion, it's real helpful to go to support group meetings. You can get a phone number and name from rsd association. just put your zip code in. From there, you can get some names of experiences Drs. Having a good neurologist is a must. physical therapy with someone experienced. If they get too vigorous, it can get worse. My Dr. is a psychiatrist, neurologist and pharmacologist and a teacher. He teaches on west coast, but has a limited practice and lives in AZ. He's moving in 2 years.He's helped me sooooooo very much. Wonderful patient man and conservative on the narcotics. Swimming is great for this disorder, easy on the body and I stretch dailey. Don't underestimate the long term expense of this mess. I can no longer work. The last 3-4 years really hurt our home business. One morning my blood pressure dropped when I awoke and passed out. (over an hour) 4 days in ICU Bill was 33K I have a friend here that has happened to 3 times. I don't spend even a second thinking about what might not happen My husband won't leave me alone though, the paramedics told him they couldn't get pulse and I was dead. They checked other side I guess and found 60/40. I don't remember very much. Music is a real relaxer, talking and writing to friends. Just have to be careful not to talk about the beast, most people can't take it and will withdraw from you. It's not because they don't care and love you, they just can't fatham the 24/7 pain and all that goes with this disaster. I hope we get on the Dr. Phil show, 1/2 the country has never heard of RSD, including my next door neighbor that has been practicing for 30 years. Hope this in no way was discouraging, knowledge is power and keep stretching Reed, swim if you can, I love massage-not too deep. Take care, Loretta

Thanks Loretta It looks like we are entering a whole new phase now. Reed started the clonidine patch yesterday, and his bp bottomed out soon afterward. It stayed very low today, and when I called the doctor's office to discuss this, the nurse told me she was going to speak to the doc and call me back at work. Instead, the doctor called me and told me to go home, remove the patch and check his bp every 15 minutes and check the color, since his foot had been turning black slowly and today it was much worse. So now, his blood pressure is back near normal, and the color is a little better but the doc is concerned that the injury may have caused a blood clot . He has to go in to see the doc tomorrow (he wanted to call a cardiologist and radiologist to get input before he sees him) and they are planning to do a vascular doppler at least, and preferably an angiogram. The pm doc warned us of the risk of spreading the RSD with an angiogram, but he said it was a risk that he feels has to be taken.In the meantime, we are checking bp every hour and he's not to be out of bed. If things turn worse over nite, he will be admitted immediately. I wonder if things are ever going to calm down.

Hi Rita and Reed...

Just wanted to stop in and let you both know that I am thinking of you.

This RSD Monster is so unpredictable....

I could not take the clonadine as I already had low bp... How frightening for both of you.

I pray you find an answer and things calm down for both of you.

Gentle hugs,
Abbie

Thanks Abbie, I hope so too, and I hope everyone here is having a peaceful and pain free night.