[daniella]

Hi. I am planning on getting a scs. I had really not wanted to do this but also would like a better quality of life. Anyhow my apt is on Wed for the consult again this is at Cleveland but I was told at ucla when I lived there to do it. My major pain is in my inner ankle/foot/calf and spread to other leg. Anyhow I have my list of ?'s to ask and many concerns. A huge concern is it making me worse or damaging my back where the leads are. I am super sensitive and even a small bump to my leg can send the pain up for days. Anyhow anyone who has this is there any ?'s you found helpful to ask to make the final choice or things you wish you would have known before doing it?Also I have worked so hard to get to the mobility I do have. I used to be in bed full days and now I can take a 20 min walk or do errands. My pain is still high though and obviously still limiting. My concern is I know after you need to be careful something like 3 months after the procedure. I take 1 day off now and I feel like it is so hard to get back to doing more. So are there major limitations after and since I live on an upstairs apt meaning lots of stairs will that be ok or no?Of course if I knew it would make me better in the long run I would be happy to be still but my fear is that I will go back to being in bed again from lack of use.Did you do extreme pt after?Thanks for any input and advice from people who have done it good and bad please.

[lostmary]

Hi,

I've had my scs for 8 months now, and I feel as if I have some of my life back. Like you, I have rsd in both feet/legs, and I was in bed or wheelchair for almost 5 years, on and off. In that time, I wasn't able to walk without assistance. Now, I'm back to taking care of my horses and working in my veggi garden. It still takes me time to do everything, and I do still get tired easy, but I can do it. That is the great thing. Yes, you do have about 3 months where you can't do anything such as stretching, bending, reaching, lifting anything more that 5 lbs. After the first few weeks, I was able to get up and slowly more around the house. The hardest time was after I felt better from the surgery, but I still had to not do anything. If you listen to your dr, and do what you are told, then you should be fine. It is when you start to do too much too soon that you can get into trouble.

I had the trial before the perm, and I didn't want them to take it out. It does take some getting used to. You have to let the reps give you several programs and you need to try them all. I don't like the high pitched ones. Almost everyone I have is low. Just picture that you are in your car, and the car next to you has the bass turned up full volume. The pulsing/beating is the ones that work for me the best. Everyone is different tho.

Any questions, just ask. Hope this helps.

Hugs
Mary

[daniella]

Thanks. Have you had complications like leads or pain from the battery or in your back? How long was the temp in? Did you see results right away or does it even get less pain after awhile? So what am I suppose to do living on my own on an upstairs apt? See last year I could barley get out of bed from pain but I have worked so hard to push through the pain. I still have very hard days and can't work so if in the end it makes me better of course I would not care about a few months of being still but I fear it doing nothing and or making me wore and then loosing the progress I have made. Does that make sense?What I don't get is why more people don't do this procedure if it can help so much? Were you happy with your doc? Are there any ?'s I should ask or know answers to? I have a long list but I also know from past docs you get a limited time. Glad you are doing better

[bassman]

Hi Daniella,

My experience with the Spinal Cord Stimulator is five years old, and I understand that the SCS has changed somewhat and is much smaller, and the process might also be a bit different, but here is what I would like to pass on.

The generator/battery unit was placed in the “hip” area. This is below the belt and above the seat, so normal clothing and activities shouldn’t be any problem. I did question the doc, though, about the fact that there did not seem to be a lot of “room” there. Some people have more “padding” (if you know what I mean) but others of us do not. He said that was the standard location.

I now have a bulge there that seems to constantly pull on the skin and poke from the inside. After I lived with the discomfort for a while, I showed it to a different neurosurgeon and he said he often would place the unit in the abdomen, because there is more room. The reason to put it in the back is that it is easier access – you don’t have to flip over during the installation – and the wires get routed a shorter distance. You may want to discuss options with your surgeon. I need to always cover the battery pack area with a Lidoderm patch.

Also, the place where the wires were anchored to the vertebrae was not set with a deep enough screw. So it, too, is poking at the skin from the inside. The aforementioned neurosurgeon also said that should have been placed differently.

I am coming to the end of the battery life. If I get a replacement installed, I will try to find out how many SCSs a prospective doctor has put in, and if I could interview or write to some patients. I would like to know he/she has satisfied customers. Because of privacy laws, this might not be possible, but it would be nice to avoid repeating the same problems.

On the plus side, there recovery was very quick. This was a long time ago, so I don’t remember for sure, but I think only a week or two before starting to work back into normal activities. I believe I was totally back within about a month. Results were pretty much immediate.

Now that it has been five years, I am not so sure the SCS is doing as much. This is partially because the RSD has spread and I have also added rheumatoid arthritis to the mix.

Mike

[daniella]

Thanks and good luck with what ever you choose. Tomorrow is my apt and my doc there is a lot written about and I know someone who got the surgery from him. He deals a lot with rsd. I am concerned about the batter pack cause I already have back issues and like you am slim.I think if I am happy with my treatment and he is my 4th pain doc at major places anyhow and the procedure I am going to make a blog so that other patients can get feedback. Like you knowing someone who has been to that doc can really help to make a good choice and feel more comfortable. Good luck and thanks