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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 03-15-2012, 11:21 PM   #1
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what next?

I have been suffering with rsd for many years now. It started as tos from playing softball in college. I had a scalenectomy that made the pain worse - followed by a first rib resection. During the rib resection the dr had to cut several parts of my brachial plexus because scar tissue glued it to my rib. I went through years of intense therapy to try to regain some use of my right arm. I was in a lot of nerve pain and not able to work as a physical education teacher which i had just finished college for. Eventually I had a scs implant which gave me about 5 years of relief. I was finally able to start my career. However after 5 years it was no longer effective. I continued to work through the pain for the next ten years.

Two years aho the pain started to get worse and i was dx with rsd. This year the pain has caused me to miss more days of work than i am actually there. I luckily have a great principal who is happy to see me whenever i am up to working. I just had a stellete ganglion block to made a definite dx of rsd/crps. It gave me relief for two days than the pain returned. I am going to repeat the block once more but my dr isn't expecting long term relief since my rsd has been going on so long. Where do i go from here? Any suggestions

Last edited by gliickie; 03-15-2012 at 11:24 PM.

 
Old 03-16-2012, 05:04 AM   #2
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Re: what next?

not sure what the short names are

but i have degen lower back with closing nerve channel

i use chiropractor pain patches pills and just extremely high pain tolerance from my ADHD the best is to search online mild exercise and soaking in Epson salt or bubble tub
but thats me and how i manage its still horrible but manageable

best of luck

 
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Old 03-16-2012, 06:30 AM   #3
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Re: what next?

RSD first must be diagnosed, which is not always an easy task. It is one of those things where the symptoms will be managed rather than cured. This can involve modalities such as physical therapy, medications, nerve blocks and "psychosocial" support.

I think the most important thing you can do right now is to find an interventional pain management doctor that has experience working with RSD.

Last edited by Administrator; 03-16-2012 at 08:23 AM.

 
Old 03-16-2012, 03:37 PM   #4
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Re: what next?

I was told that the SGB are cumulative in nature. I had one that only lasted for about 3 days. Just had a 2nd and hoping it will last longer. Heard that there has a positive response to tDCS treatment. I am in the research stage. Good luck

 
Old 03-16-2012, 08:20 PM   #5
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Re: what next?

I feel rather dumb. No doctor ever explained RSD fully to me. thought it was something that came and went, not take up residence! More attention was given to muscle contractions my body would go into when set off by touch or position. No one ever saw anything like it before so they deemed it was all in my head. The RSD started in my feet. I had 3 surgeries on my right foot. The second one was a fusion. They fused the big toe joint and lowered the second toe but they did it poorly. Th hardware was too large I was told when it was removed in the third surgery nine months after the second. The next bit of news was they fused it at the wrong angle so I walk on my third toe and heaven only knows what was done to the second toe that mostly rests on the third toe. The third toe develops a callus that has to be debrided every couple of months. Edema is a constant thing. So is pain.

Reading what I have I'm beginning to think my small fiber neuropathy just is exacerbated by the RSD. Baically from my waist down I am in trouble. I have been on crutches for seven years. I use a power chair inside the house. I had been hoping a ramp and a special vehicle wouldn't be necessary but I feel I need to start thinking in that direction. I had a trial of the Boston Scientific SCS in August. There were complications with providers to get it permanently implanted. Through the grace of God I finally have a great set of doctors and the surgery is scheduled for the 27th.

I would like to hear from anyone who has been through this procedure. I am curious about what the recovery is like.

Quickie, I, too, was a teacher and had to leave on disability nine years ago. It cannot be easy for you. Kids are great but they are draining! I was told today about a woman who had a crushed ankle and RSD - had the SCS put in and is walking normally. Sounds great. I'd like to lose the crutches but I'm not sure my foot will allow for it. Losing the pain will be good enough. Have you looked into it?
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Old 03-17-2012, 03:06 AM   #6
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Re: what next?

Good luck on the 27 th. I had a scs implant and it was the best decision i ever made. I went five years withless pain. Then i was in a minor car accident and the leads moved my scs never helped after that. I have lost the use of my right arm but i agree losing the pain is all i want.

 
Old 03-17-2012, 05:42 AM   #7
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Re: what next?

Thanks for the best wishes. I 'm glad to hear about the five years. Sorry to hear about the car accident. Isn't it possible to have them replace the SCS?
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Old 03-17-2012, 11:24 PM   #8
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Re: what next?

They've tried everything to try to fix it but the machine didn't fail my body did. Replacing it would be a difficult procedure because of all the scar tissue that is holding it in place and since it wouldn't work anyway i decided to leave it alone and keep it off. Now ten years later my rsd has been flared for the past two years and has just spread to the site of the battery pack.
I don't regret having it done in the first place because it gave me five years to start my career as a pe teacher. I'm just afraid if i don' t find some relief i'm going to have to end my career and im not ready for that.
I feel like i have tried everything. I'm at the end of my robe and feel lost.

 
Old 03-18-2012, 06:17 PM   #9
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Re: what next?

I have a marvelous pain management doctor who has a "bag full of tricks" so he tells me and so far he has proven it. He listens. He put me in touch with the neurosurgeon who is going to do the implant. I pray you might find someone like him in your area.

I am almost over the anger I felt when I finally got the message of this disease that if some one tried to tell me I denied but I don't recall anyone telling me about this disease - that the white matter brain lesions - 15 at last count - were part of this. That all the pain in my body is related - not different things. I'm sure I wrote this before but I'm just venting. I feel, I know the medical community really failed me. All those specialists and they all said it was in my head. To an extent they were correct but not the way they intended it.

Oh well, anger doesn't do me any good. Time to move on and look forward to the next challenge. I am just grateful that God has been working in my life to such an amazing degree. I have been a slow learner but He has not given up on growing me up.
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Old 03-18-2012, 07:04 PM   #10
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Re: what next?

Has anyony heard of sympathectomy? This is the surgery my pm dr is recommending next. Since the stellate ganglion block worked but only for a short period of time. Any suggestions?

 
Old 03-22-2012, 09:28 PM   #11
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Re: what next?

Be very sure this is what you want. Be VERY informed. I got the SCS in May 2011, they replaced it in June 2011 when it quit working 3 days after the initial implant. Then in October it had to be moved as it had slid onto my vertebra. Now I just had it replaced again on Monday after it shocked me so severely I thought I was going to die. I sobbed for over an hour. The dr said it went off at such a high intensity that it grabbed my motor nerves and acted like a seizure. Scarry...very scarry!

I will say that it does help with the pain. It does not take it away, but it does definitely help with it. I would have to say if something happens to this unit I'm done and I'll just learn to deal with the constant 9. I've got to say 3 strikes and I'm out.

I'm told by Boston Scientific that only 5 of these units have gone bad nationwide (my 1st included in that total). I really find that hard to believe as now I had a second one go bad.

Blow some more smoke up my butt Boston Scientific.

Ask lots of questions and just be sure this is what you want!

 
Old 03-23-2012, 10:21 AM   #12
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Re: what next?

Thank you for your advice. I have an appointment with my pm dr tomorrow and I have a list of questions. I do have a lot of faith in him
though. Sorry to hear about your scs. I didn' t have a problem with my scs. My body just stopped reacting to the tingling. My scs was Medtrontic not Boston Scientific. I didn't know different companies made them. I wish you good luck.

Last edited by gliickie; 03-24-2012 at 07:31 PM.

 
Old 03-24-2012, 07:49 PM   #13
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Re: what next?

Featherme, I was just wondering how you handle not being able to teach. It is all I ever wanted to do with my life but the past two years I have missed so many days because of the pain I am suprised I still have a job. I have a great principal who is very understanding. I am currently out on short term disability to go through a series of ganglion blocks. They have only given me relief for two days. I don' t know how I am going to be able to finish the year unless something changes. I miss the kids and they keep sending me their hand drawn get well soon cards. I love the cards but they really hurt my heart. I am the only pe teacher at our small school so when I am not there the homeroom teachers have to take the kid to the gym. I feel guility about not being there and I miss the kids but I feel like I have to take care of myself for the first time in my life. How did you handle not teaching? Any suggestions to help me not feel so guilty? Thanks and I will keep you in my prayers on the 27th.
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Old 03-25-2012, 06:02 AM   #14
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Re: what next?

Hi. I have been reading this post on and off. I go through time periods where it is too painful to be on the computer (neck, shoulders and fingers/hand). I was told to stay away from a sympathectomy. The trauma from the procedure seems to make the RSD worse. I had 2 level ACDF C5-6 C6-7 on 12/9/2010. Was doing great went back to teaching after 3 months. Last school year was tough. I know what you mean when you say the kids write notes. I kept in contact with my 4th graders via the internet. I was so excited to start this school year with no pain and be able to have a great year (my 26th). Then the Friday before labor day I was rear ended as did my painless school year. The accident gave me significant whiplash and RSD along with lower back bulges and a tear. It tool a long time to diagnosis the RSD in my hands and I feel as if I also have it in my feet although not an official diagnosis yet. I h ave only had 2 SGNB and going for a 3rd this Friday. Then I will set up 2 more for the following 2 weeks to see if going every week for 3 weeks helps the cumulative effect. If not I may need another course of action. I use my TENS unit to help with muscle pain. Also taking calcium channel blocks to see if that helps as one diagnosis was severe Raynauds. The excessive burning feeling in my feet seem to be the most troublesome. With sandles weather coming up not sure how my feet will look bright read? Anyway enough rambling about me. Just be careful with any trauma you put your body through. Good luck

 
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Old 03-28-2012, 07:57 PM   #15
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Re: what next?

Frenchfri,
Thankyou for your advice. I will do a lot more research before i do anything drastic. I just am tired and in pain all of the time. I have tried everything my insurance will cover. I tried pt where i did guided motor imagery and mirror therapy for almost a year but the results were slow and eventually i leveled off which of course caused the insurance to deny it. I have had several ganglion blocks and i have another one scheduled for april 3rd. I am just so tired and feel like i'm losing my fight. Especially since i am no longer teaching.
Sorry to hear about your school year. I completely understand i wanted so bad for this to be over and be back teaching. I will keep you in my prayers on friday while you have your sgb. When you feel well enough please keep in touch.
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Last edited by gliickie; 03-28-2012 at 07:58 PM.

 
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