Now What?
 

Hello everyone!

I haven't been on lately because of a lot of things going on in my life. I do read the threads often. I used to be the one with positive advice or comments and used to be really upbeat and positive about life. A short background - I have had RSD since 2000 and it developed after surgery. After countless doctors, I found some that believed me and was given trigger point injections, put on multiple medicines (none would give anything stronger than neurontin - possibly because I am bi-polar), and had a temporary scs that was very effective, thus, having a permanent one put in. Well, it worked for about a year. I have RSD in my back, right foot, and right arm. Everything was tolerable until this happened:

The back of my neck started swelling up and becoming very painful. I went to my regular doctor and he thought I had a cyst next to my scs leads and did not want to touch it. I went to the neurosurgery department that put the scs in and they said there was not a cyst but the leads were causing the pain (after 3 years of having the scs). I decided to have it removed even though the procedure of having it put in was horrific and I would never want to go through that again. They "reassured" me that it is not as bad as having it put in. Well, it was. I dare to say it was even worse. It has been 4 weeks and I am still in pain even though I am taking oxycodone 10mg every 4 hours with 2 extra strength tylenol. I was taking 20mg but it was making me loopy and I hate to feel that way. After 3-1/2 hours, the pain returns and I have to ride it out that last half hour (even on 20mg it did the same thing). I am depressed. I cannot drive, I have to wear a neck collar, I cannot do anything physical, and I do not want to leave the house. My friend, mom and son are helpful, but I do not like asking for help (I am getting better at it). I see the doctor in 2 weeks. I am nervous that the RSD is in my neck now because the pain has not really improved much since surgery.

Now what? I do not like not knowing what the future holds. I am not sure that the doctors will let me stay on pain medication. I do not know what they will suggest, if anything, to control the pain. I hate this! I struggle every day to try to be positive like I used to be but it becomes harder and harder.

Thanks for listening.

Jennetta

I am so very sorry to hear how you are suffering.

My only suggestion would be to look into tDCS treatment. There is a thread on here about it and it has worked miracles for several people. One member, CRPSjames, had a failed SCS and got much worse from the SCS. He started treating with SCS and he has had some remarkable success. He has posted about his success in the tDCS thread. He also has a post in the last few pages (I think) of the Introductions thread stickied at the top of the forum. I highly recommend reading through the entire tDCS thread. It filled me with a lot of hope. I have been treating at home with tDCS for almost 2 months now and I too have seen some major improvements in the pain levels, sensitivity, sleep, and in the length and severity of flares.

I hope you are able to find some relief soon. Take care and keep us posted on how you are doing.

Hi
 

I know it is so hard to stay positive!, I am going to get trained on the tdcs in Atlanta. I hope it works because I have tried everything else! Keep looking for something to try...that's what keeps me going,,,

Debbie

Dear Jennetta,

There is hope after a failed spinal cord stimulator with CRPS. It is very common for them to fail within the first 2-3 years. Mine lasted under two years, and caused severe spreading of CRPS to my incision sites, wrist and worsened the original CRPS. I opted to leave the stim in since I could not risk even more damage since the SCS landed me in a wheelchair. I am with you that the original surgery was horrific. I was told by the top CRPS Dr. in the country that removal would be much worse than implantation due to scar tissue.

Please get plenty of rest and do ask for help. When I became wheelchair bound asking for help of any kind was so difficult. I now realize I made things so much harder on my family by not seeking help. It is good that you have been provided with medication to get you through this.

Please consider tDCS. You can read through the tDCS thread to learn about it. Since January I have gone from a wheelchair, to a walker and I am now on a cane. The severe spread to my wrist is totally gone as is the atrophy in my legs. Since the Spinal Cord Stimulator caused such a severe worsening of my CRPS I was awarded SSDI on the first try. Now I am hoping to eventually be able to return to work. The added bonus is that tDCS, in addition to zapping the pain and numerous additional incapacitating symptoms, deals with the root cause of the problem, a reorganized brain, not just masking the problem as do meds and SCS.

Hope you find this useful information.

Thank you!
 

Thank you catra121, debbiehub, and especially personally from CRPSjames. Your messages give me hope. I will definately check into tDCS. I have never heard of it before and if it is helping, especially as well as it is to CRPSjames, it is really worth a try! It is inspiring to know that it "deals with the root cause of the problem, a reorganized brain, not just masking the problem as do meds and SCS". That is the problem with so many doctors and medicines is that they just mask the problem and do not deal with the root of the problem. The doctors and pharmaceutical companies don't want a cure because they will lose money (my own personal observation and opinion). It reminds me of sticking a pacifier in a baby's mouth to stop it from crying instead of finding out why it is crying.

Have some reading to do now:)

Gengle hugs :grouphug:

Jennetta

Hello my dear jennetta. you have been using or viewing and speaking with us for some time , keep it up and it can help you get perspective. yes we live with horrible pain but this site and all the threads let you see this beast from an outside view though we are inside if you know what i mean. some times we get to the point you are at and we lean on the others here as Im sure you have been there for many others in the past. in the same fashion we are here for you:). we give soft hugs when needed:hug: . we chat when needed and we listen when needed and try to offer the best possible help we can offer. but remember you may feel alone but your not we are all here as one big family. we aren't here to judge just accept and give warmth to each other and sooth the pain we can (the emotional and mental pain can sometimes be the worst part of the beast) if you are down go into the humor chat room that might help quicker than reaching out , some times just clicking with humanity through humor helps (two men walk into a bar... they say ouch !!!!!) ok that was dumb but i bet you have a small crease in you mouth going into a smile:wink: be well and I pray and hope you may receive a good day. warm thoughts and soft hugs to you