catching up
 

Hi, did Frank get the permanent one? How is he? Hope you are both well!

Wow! I just noticed
 

......that post before yours is 3 years old!

It would be wonderful if we could get an update!
Really would like to hear from folks who have had these SCS's for more than a year......

Hi,
 

I talk to Claudia every once in awhile. Frank does have the SCS in but he has gotten worse due to it going to the other side. The last time I talked to her which was a few weeks ago he is in pretty bad shape. Lots of pain.

I'll see if I can get her to come on and let you know how he is with the SCS.

Ada

hello .......sure has been a long time since i was here.......................

frank still has the scs implanted...he is still on the fence about it.......has been in for over two years now..........

he likes the fact that he can now hold a coffee cup, touch his arm, not hate the water from a shower, the color is now normal, and the swelling is minimal..................however......

the scs did nothing for the pain.........he can now use his left arm, but the pain is still there...........he is on ms contin, oxycodone, topamax, valium, and lidoderm creme...............his pain is still horribly high, he sleeps a LOT to get away from the pain.....his memory is horrible, he is just not a happy camper.................

would he do it again? nope
would he give it up? nope.......................

he has lost a lot of mobility in his neck...........his scs is implanted at the c 2 c3 in his neck...............so he has trouble turning his head.........the battery is in his chest.....right side and does stick out.......it is tender, not really painful, but he has had several bouts of pain thinking he was having a heart attack, but it was all from the rsd and battery tightening around the chest wall......................

he had another trial to see if they could get coverage on his right side, but they could not get it in, as his arms were spasming so badly...............his rsd is in both arms, his knees are affected, and his legs just give out with no warning.....................RSD is really a shi**y disease.!!!!!!

mine is at a minimal balance................warmer weather in florida is a Godsend, no more cold snowy winters..............i have less pain than before, and i feel blessed for that.................

do your research.....it is a decision only YOU can make................everyone is different......................

hello to all my oldie friends... :) .............

Thank you for those updates !
 

It amazes me how many people are coming here on a daily basis asking about the SCS/Pain Pumps ! And for those who don't know, a new forum specific to SCS/PP discussion has been created. Here's the direct link to get there
Click on:

http://neurotalk.psychcentral.com/fo...prune=-1&f=118

It is listed in the main menu as a subforum in the "Medications" section

Lots of new testimonies there and lots of questions being asked......
So much support is needed!
I get tears in my eyes when I read of these battles with RSD, and the ones who get the SCS and end up with RSD spreading.....:(

All I can do is pray.....
I'll never understand RSD and why so many wonderful people have to be plagued by it.....

So Sorry!
 

I'm so sorry about what's happened! I hope there's something that brings him relief and peace again. God Bless you both and know that lots of prayers are being said for you.

spinal stimulator defect
 

September 15 2008, while doing an exercise,after having the stim for only 5 months, I was thrown to the floor and was in electric shock for about 20 minutes. When I went to the hospital, it was also found that the stimulator had also caused a heart attack. I could not move below my waist for about 6 days. A bioengineer, flew in from San Diego, where in front of 8 witnesses, he used his remote, and found out that the stim was working on its own. He called it dysfunctional. To stop the stim, he had to use magnets to shut the whole system down. I continue to have medical probs, and nerve damage. Lawyers don't want it, because you can't sue a medical manufacturer. My day to get a lawyer is coming to an end.

ONE help : I have been in touch with Jon Bristow on KGO radio. He is very interested in getting to the truth. He needs facts, bullets. He is there for us. To put in your input and hopefully stop the docs from putting it in without more information,email
**

Please help to get it out there. To reach me please feel free to contact me at **

Thanks.

SCS Problems
 

Boy I am glad To see some real post about how these SCS really work for people with nerve damage in the upper part of our body's arms, hands, wrist ect.

In the past 2 days I have read on this and another forum a lot about SCS nightmares. It seams that these work well on folks with lower back, hips,and leg pain. When it comes to arms, hands, wrist, shoulders with nerve pain is when I have read most not all but upwards of 95% had theirs removed.

My PM Dr has been trying to had sell me on having one of these implanted even before he ever looked at me. I had a Dr.visit last Tuesday and he again tried again to hard sell me on this after seeing him for 6 months. I told him no so he wants to send me to the Mayo for a 2nd opinion. My nerve pain just keeps getting worse and spreading up my arm into my back. My pain on my meds stays around 7+ to 9+ by the end of the day.

My PM Dr. has told me that I have the worst case of crpsII in a whole arm, hand, wrist, shoulder area that he has ever seen. As I have told him I do not have a very good feeling about someone messing around my spine in the nerve area since this all comes from a Dr. cutting my nerve by mistake in the first place.I ask my Dr. some questions about the SCS and I saw that he was getting p.o. with me. I have a voice in the back of my head that keeps telling me to not do this. I have to go with my voice it has never failed me yet.

I feel very bad for all these folks that have had this done and are now in more pain then before. I hope over time that there pain from these SCS will go away. It is sad to try to re-leave the main pain only to end up with more unexpected unnecessary pain.

This is my 2 cents on this subject.

This is the main reason my wife will not consider a SCS because she has upper limb RSD that has spread to her lower limbs. I too have read several unpleasant issues with scs and upper limb RSD.

Scs..
 

I wish I could share more happier news, Iam all about happy, ya know.. BUT SCS it is a big negative for me..First you get excited for pain coping tool/intervention then once you have surgery, recover only to find..mine did spread ..just as much RSD pain as before and now painful back where I am deeply wired.. leads go the length of of my body internally to my shoulder blades inside my spinal column with my box living in my hip fleshy spot..

Sorry, I would send happy vibes if I had em..

Hugz, Kathy:grouphug: