[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

[Idealist]

Hi, Karebear! It's really nice to meet you! Wow, it sounds like you've had a book-full of experiences. I'm sorry things have been so complicated for you. I'm going to post a link to our RSD/CRPS forum. The people there will probably be able to understand your post better. Unfortunately, I'm not all that familiar with these conditions. But I feel for you. Good luck and best wishes, Karebear!

http://neurotalk.psychcentral.com/forum21.html

[SBOWLING]

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

Hey Karebear,

Welcome, It sounds like you have had more than your share of complications. We all share the same painful condition that has changed the way we live our lives. You will meet some really nice and helpful people here.
Congradulations on your grandchild my son and daughter in law are expecting and due in July. It's a girl and I can't wait.

Don't worry when you ramble I am guilty of the same thing.
Take care,
Sbowling

[azoyizes]

Hi Karebear, and welcome to NeuroTalk!

You have been through quite a lot. I know there are people here on NT who can understand what you've been going through.

This is a great place to hang out with lots of nice and helpful people.

Congratulations on your new grandchild. We just had a grandson born in January, our fourth!

[(Broken Wings)]

A big warm WELCOME for you

You don't have to apologize here. You have volumes to tell. We're listening and are here for you.

[Kitty]

Hi Karebear and welcome to NeuroTalk!

[castles4me44]

Hello! Wow I am so sorry you have had to go through so much. I also am suffering from RSD. I just wonder if a warm water therapy would be good for you. When I hurt really bad, warm water is my best friend. Ice just sets off my pain. Also, regular therapy tends to make me hurt more. Also, this may sound weird, I thought it was until I tried it. Have you ever tried acupuncture? Not on the affected areas, the surrounding ones. Your body doesn't like the needles being there so your body sends blood to force the foreign object out. This causes great healing resouces to the acupunctured area. It has really helped me and relieved pain from areas that are affected from me walking funny. It is my right leg that has RSD and so my back hurts. If we can get rid of any pain, it just helps. The needles are so tiny they are not painful. Good luck.

[tovaxin_lab_rat]

Hi Karebear -

I am so sorry for your pain and the ordeal you've been through. I wish you the best. You have come to a wonderful place for support. I hope you return or are at least reading the posts.

Sounds like we are in the same boat with some of the problems you've been through. I was dx'd with CRPS w/secondary frozen shoulder. Fortunately the PT who is managing my care knows that ice is the worst therapy for CRPS and we only use heat.

Ice maybe good for the frozen shoulder but it will do more damage for the CRPS so I stay away from it.

I've had several nerve blocks which, as you have found out, wear off after a period of time. I've had several in the sympathetic nerve plexus that have helped, but the pain has returned. I've had two in the C3/C4 - in through the back of my neck and one through the front. The one through the front gave me more relief than the one through the back. That was just worthless!

I am scheduled to see the neurosurgeon tomorrow afternoon to find out options for the C3/C4 pain. It has gotten worse and the PM doc is at a loss as to what to do. Pain meds aren't even touching the pain.

PT is helping with the frozen shoulder to keep it from completely freezing and I've had a couple of steroid injections to help with the pain.

I wish you luck with your pain and situation. Keep in touch.

[DM]

Yowzer KB! You've been through quite a lot, but I really want to say welcome to NeuroTalk and I'm glad you found us. Please make yourself at home here; everyone is just great around here.

[(Broken Wings)]

You two are a pair of painpackers, I'd say. so sorry you're suffering. It shouldn't be this way.

Neck pain is difficult to manage because without the "normal" muscle control your head becomes too heavy for it's axis, (6-8 pound) or at least that's how mine felt. I finally did find relief with cervical epi X3, for me it helped tremendously. I even got relief from back pain, which the PM doc said was a spillover and wouldn't last, but that part of my back pain has still not returned (2006). Headaches were relieved, but I think those were, yes, from the neck but also overkill pain and rebound headaches from all the OTC Tylenol. I don't seem to have any migraine episodes lately -- keeping my fingers crossed on that one.

I had a lot of cervical traction, even after successful injections (also had successful and unsuccessful injec other places). Needed traction after that too. I would look up my injection type and let you know if you wanted that info. trouble is, everybody is so different.

I had to agree that I would stick with all 3. Was a requirement by 3 different PM docs. go figure. My first injection made me almost as bad as I'd ever been, 2nd not as bad but bad. The third one, I walked out twisting my neck and saying "Well, I guess the doctors were right about that." I always just wanted to try 1 to see, but was given the same X3 talk. First and 2nd was different meds.

Manual traction PT or self traction-most effective; mechanical PT puts in traction unit; inversion table or board - caused minor bilateral hip and knee pain and soreness for a day or two, especially without whirlpool or shower. (knees and hips were not my problem ) Stuck to it too, just modified as needed - ended up being less time then it wasn't no fun no more.

I have 4 bulging discs in lumbar, so I know back pain very well. Back pain is miserable pain -and if there was a crybaby smilie I'd have to pick it.

Don't give up even though those others attempts didn't work. Just don't expect things to happen quick. It takes time for irritated nerve pain to calm down, muscles to mend and build back up.

I had to give up a lot after the injections, just to take the pain down a notch or two more so I could regroup. There was no set plan that worked. I just kept trying different things as I could. Still, I can get out of whack pretty easy but I rebound a lot better.

I hope we all can gain a step or two up.

Originally Posted by Av8rgirl

Hi Karebear -

I am so sorry for your pain and the ordeal you've been through. I wish you the best. You have come to a wonderful place for support. I hope you return or are at least reading the posts.

Sounds like we are in the same boat with some of the problems you've been through. I was dx'd with CRPS w/secondary frozen shoulder. Fortunately the PT who is managing my care knows that ice is the worst therapy for CRPS and we only use heat.

Ice maybe good for the frozen shoulder but it will do more damage for the CRPS so I stay away from it.

I've had several nerve blocks which, as you have found out, wear off after a period of time. I've had several in the sympathetic nerve plexus that have helped, but the pain has returned. I've had two in the C3/C4 - in through the back of my neck and one through the front. The one through the front gave me more relief than the one through the back. That was just worthless!

I am scheduled to see the neurosurgeon tomorrow afternoon to find out options for the C3/C4 pain. It has gotten worse and the PM doc is at a loss as to what to do. Pain meds aren't even touching the pain.

PT is helping with the frozen shoulder to keep it from completely freezing and I've had a couple of steroid injections to help with the pain.

I wish you luck with your pain and situation. Keep in touch.