Hi Pip, I just saw the doctor today for what sounds like what you are experincing(SP. Brain turned off). He had a series of x-rays shot and told me that he believes that the shoulder/neck problem is due to weakness caused by the RSD. I also "guard" my arm and that puts additional stresses on that area. He does think that it is RSD related. The plan of action right now is to undergo an injection into several of the cervical nerves for diagnostic purposes. If they provide any relief I will have another series of injections that may possibly help for a year or longer.

If this does not work, I am seriously considering getting a LEGO arm that I can just take off and hang in the closet when the shoulder is acting up.

Good luck and prayers, Lisa

Prayin the injections will work. Is it also possible that along with the injections some physical therapy might help in avoiding teh guarding which has exacerbated your weakness? Just a thought. It can be pretty gentle stuff, and even done in a warm therapy pool, so aggravation of the muscles is lessened while exercising.

Hoping and Prayin,
Mark56

Interesting to read about your issues with your SCSs. I had mine implanted in Feb 1999 for Thoracic Outlet Syndrome. As you can tell I need a battery replacement but have been putting it off. Have to do it soon though. My leads are implanted at the base of my neck and the "Brains and Battery" are just above my belt in my back on the RT side. They had to snake an extension cord to reach the leads. It covers my entire left arm up to shoulder. Now I was always skinny, around 125-130lb but had gained weight before the implant, 180lb. I had to go back to bury the plug for the extension plug 2 mo later because it was bothering me. I lost 60lb in 60 days! They did a little procedure to bury it and adjusted the signal some. The Doc said that maybe the nerve that controls hunger was being effected. No kidding. A lot of you folks with shoulder blade, shoulder pain should look at the TOS forum as RSD and TOS are kissing cousins and most TOSers have both. BTW the yellow light on the 7434A controller if on longer when you shut it off, it is time to get a new battery or at least talk to a Doc. Good luck. Remember the first 100 years are the hardest.
Later Mark J

Very much appreciated! I had no idea TOS and RSD were so closely related!
That's amazing that you've had your implant for over 10 years and are just now getting a new battery!
What manufacturer is it?

I'm gonna have to take a peak over on the TOS forum.
Thank you so much for sharing!
I hope you stick around, looks like you could give us some good pointers!

It's great to have you!

Rae

Thank you so much for sharing! I appreciate deeply your wisdom regarding the the first 100 years being the hardest. Frankly, a friend of mine who hails from a Kansas farm and is a retired math genius at 92 years young would definitely agree with you!

Humbly,
Mark56

Hi Lisa,

Good to hear of someone else who has an SCS for an arm - it seems we are few and far between! I also tend to "guard" my arm and I'm sure this does put extra pressure on shoulder and neck, but not so much that it would cause this ache.

Lego arm? If you find one, let me know! LOL. I'd be very interested!! Although I have requested amputation in the past and they proved to me through mirroring acupuncture that removing it wouldn't necessarily remove the pain. Darn that for an idea then!

Good luck with the injections, I hope they help.

Pip