Originally Posted by Karebear

HI I go by Karebear and I am generally pretty shy, but here goes. I hope this isn’t too long

I was diagnosed with RSC/CRPS in 01/2003, 3 1/2 years after injuring my left shoulder at the gym. I thought that I had just strained the muscles so I continued to work out. It felt like the shoulder kept coming out of the socket. My Dr. started w/PT, no help. Had MRI that showed a bone spur and I had my 1st surgery to remove that in 4/00. While the Dr. was in (aruthroscopic) he found that all muscle, tendons and ligaments were stretched out and were damaged did not heal by themselves and in fact my shoulder was falling out. More PT, no help, more pain. 2nd surgery 07/00 to tighten everything up. Immobilized 9 weeks, used ice machine 24/7, then PT, more pain. 10/01 to Chicago for release of muscles for frozen shoulder, PT same day and for months, MORE pain no help. New Ortho Dr. found torn bicep tendon and something wrong w/AC joint. 10/02 - more surgery to relocate tendon and remove part of Ac joint, more ice, PT and PAIN. With this Dr., Phy.Theripist and PM Dr. diagnosed w/RSP/CRPS 01/03. And had several blocks and meds. Vicodin, Fentenyl, Neurontin. Blocks only worked for a few days. Neurontin no help put on Zonegran. 3/03 had some nerves frozen which started some pain in my chest. It was decided that my sympath. nerve & branches were to come out. This was done 11/03 as outpt but it was late I stayed over night. The next morning when I was getting ready to go home I was having bad chest pain. The nurse thought it was from the surgery. But after a little while it got worse so they did an x-ray. They punctured my lung. The Dr. came rushing in my room, while everyone was in there, stabbed me in the chest to put chest tube in, no numbing, no nothing. I had to have a chest tube for 1 week. The day I came home from the hospital I got really sick and was re-admit. to hospital. I had a staph infection where the tube went in and couldn’t keep anything down. Not even ice chips. Took a week to find out the gall bladder shut down. They sent me home w/more meds to get rid of staph infection and build strength back up for another 3 weeks and on 12/23/03 another surgery to remove gall bladder. Now the RSD/CRPS is in lt shoulder, arm, hand (totally left handed) and spread full blown chest, esophagus, effecting my heart, breast and stomach from either having nerve removed or when chest tube was put in. I have to fight to stay above 100 lbs. because spasm etc. Removal of the nerves helped a little for about 12-14 months then PAIN got worse. And now I have read that if there ever is a cure they have removed my only pathway for it. 03/06 I got a SCS. It has help somewhat in the shoulder, and arm but now it has spread in my upper back where they put the wires and moving to the right shoulder. I had 2 leads on the left side of my spine. On Dec. 19 07 they disconnected 1 lead and put in a new one on the right side to cover my whole torso in hopes to give me relief . I’m running still at a 9-10 pain level constantly in my spine. I met w/my Advance Bionics tech and we tried to reprogram. We went from my lft hand up my arm thru my shoulder then it jumped to the rt shoulder down my arm to my hand. We tried for an hour and a ½. We can not get coverage in my spine!! It feels like a hot steel rod, molten lava running thru my back. The only thing we came up with is because they removed my sympathetic nerve and there is no pathway for the signal. Now I know this is not done much at all anymore. At least for the past 10-15 yrs. And how often would someone run across this problem w/the scs and the nerve removal - Not often we think. Don’t know if I am making any sense here - I hope so. I am sooo tired and stressed and depressed and hurt, and confused etc. - nothing new to any of you I’m sure. I got the SCS to go off some meds. As of right now I take Zonegran, Toperal, Norvasc, Nexium, Percaset, NitroQuick, Provigil, Lexapro; Fentenyl 100, Klonopin and Serequel and a ceam w/Ketemine for hypersensitivity, Nascabal, and 1000 mg Vit B12. And recently it was found that I have next to no Vit B in my body so I am dealing with that to. The dr. does not want me do the injections because of the trauma so I have a nasal spray that I use once a week and take 1000mcg a day. I have severe Allidoniya to anything touching my back. Fabric, my hair, clothes, even the wind. I still work a fulltime job and it is getting very hard to handle it. I am working on my disability, my Dr.s want be to be done working by the end of the year.
The SCS seems to be failing now. But that was to be expected.
I have been told by my pm that there is nothing more we can do. He is there for me whenever I need him and for refills. He is very good to me and I am thankful I found him.
I am married and have 2 children. A daughter 25 who just gave me my 1st wonderful grandchild 6 weeks ago and son 22 and 2 step-children. A daughter 22 and son 17. I enjoy my modified 1950 Chevy truck, Car Shows and Cruise nites w/my wonderful husband. I prolly forgot some things but this is confusing and is so long I am sorry for that but I tend to ramble sometimes.

Karebear