[Patti_Christmas]

Sorry I've been MIA for awhile, but I've been extremely depressed. The SCS isn't working, I haven't been able to get to Cleveland yet (rescheduled once again ), and am in constant pain.

Two weeks ago, I had another CT scan of my knee. Due to the SCS, an MRI was out of the question, so I had to do a CT scan. This "scan" was special, as the radiologist had to inject stuff in my knee that would make stuff show up. My doctor called and told me I need to get with my orthopedic surgeon ASAP because the scan showed extensive joint damage. I knew something was wrong, so now I find out what the ortho is going to do on the 15th of July. I have spoken with my surgeon's PA that implanted the SCS, and have decided that if I need surgery for the knee, they will coordinate with the surgeon and remove the SCS at the same time.

I have completely the phsycial and water therapy with no improvement. Honestly, I think the therapy might have caused some of the problems with my knee joint.

I've been doing Laser Accupuncture because I can't have the "traditional needles" due to my metal allergy. This managed to give me a few hours of relief. This doctor has perscribed a new machine - it's a Heat Wave, and it works like a TINS unit. So far, I like it. I am questioning now why the doctors were in such a hurry to do a SCS as opposed to this machine or even a TINS unit. I fear this is a question that will never be answered honestly.

I am not pleased with MedTronics because I haven't heard from them since the last program attempt months ago. I called and left them a message that it didn't work, and haven't heard a word since. Nice customer service if you ask me. Even though it doesn't work, you would think they would call and check on things.

I am still battling with the swelling in my stim area. The pain still feels like a 6" steel rod.

I do have some good news though - I had my SSI Disability Hearing on June 1st. I got my "letter" last week, stating a favorable decision. Now it's just wait and see.

The kids are doing all right. Typical teens - they don't want to move off the couch, and say they are bored. If you give them a task, they seem to get "un bored" rather quickly.

So, how is everyone else doing? I hope things are going well, and everyone gets relief somehow!!

[ann237]

Sounds like medtronics has a real problem with their reps!!!!!! I had my SCS put in and it started giving me problems right away calls made from the Dr even went unanswered 2 months yes 2 months later after i let it DIE completely he finally came out and then gave me an attitude. I was furious. I gave it the good ol college try again and each time it puts me in more pain if you can believe that, well guess what i had it put in in 2007 took months to see him and we are now in 2011 and about 50 phone calls later and broken appointments by the dozen i am to the point i am getting ready to have it taken out! I am going for a new treatment this week i am hoping will help, then i am seriously going to talk to my Dr about this scs. medtronics is awful i would never get anything from them i thought it was just me. congrats on your hearing

[daniella]

I am sorry to hear you are struggling. Can you call everyday CC and see if there is any cancelations? I have done that before and have gotten in a lot sooner then scheduled. By the way who is your doctor there? I saw 2 pain doctors there and so why I was asking.
I am sorry to hear the PT has not helped. I can relate to that and also that it may cause pain/problems. Who knows though as it is hard to know what causes what with this.
I hope things look up and you get some relief.

[SandyRI]

So sorry Patti. Wow. There is a separate board here for SCS and pain pump issues, the link is included above.

Maybe it's time to contact an attorney?

Sincerely hope that things get straightened out soon. Take care, Sandy

[elijjennings]

I also have a medtronic stimulator. It was implanted in Feb 2011, revision surgery in June 2011. I swear it causes more pain. The doctors are looking at me like I'm crazy. The reps aren't giving me any answers. They keep telling me to leave it on at a low level where I can't feel it so that my nerves will accept the sensation. But every time I turn it on, even when I can't feel it, my RSD flares up. I'm terrified. I have no idea what to do. This is the first time that I've heard other people say it makes their RSD worse. I have only met one other person, through a support group, that has the same issue. What the heck???? What is this thing doing to me???
Eli

[Patti_Christmas]

Originally Posted by elijjennings

I also have a medtronic stimulator. It was implanted in Feb 2011, revision surgery in June 2011. I swear it causes more pain. The doctors are looking at me like I'm crazy. The reps aren't giving me any answers. They keep telling me to leave it on at a low level where I can't feel it so that my nerves will accept the sensation. But every time I turn it on, even when I can't feel it, my RSD flares up. I'm terrified. I have no idea what to do. This is the first time that I've heard other people say it makes their RSD worse. I have only met one other person, through a support group, that has the same issue. What the heck???? What is this thing doing to me???
Eli

Eli, my reps were "concerned" initially, and I was constantly having to be re-programmed. They kept saying to give it time, let the swelling decrease, blah blah blah. I had a rep set it on a very funky setting, and he said to try that one. I didn't even make it out to the car before it started cross-feeding, and almost caused me to fall. We called him before we left the building from the car, and left a message. I haven't heard from him (or any of the other reps) since that message I left.

I have received calls from the MedTronic Office asking me to do a survey. I told her that she wouldn't like my answers, nor would they share my answers with other patients.

I honestly think that the PM doctors push this device because of the expense of the equipment and surgery. It seems like everyone has to go through that second surgery to have the leads surgically placed or something has gone wrong with the battery/generator. I am a bit angry at my doctors right now, because of the botched surgeries. I am pleased with my accupunture/pain doctor as she prescribed an H-Wave which is similiar to a TENS unit, but has a few more features. This works just like the Stim does, but is all external. I can place the sensation where I want/need it and it is very easy to use. The only problems I see with it is that it is a bit bulky. This means I have to spend about 1 1/2 hours plugged in twice a day. Also, the battery needs to be charged a bit more often, and it be used while charging. I can deal with these "problems" a lot more then I can deal with the 6" steel spike (the silicone paddle) and the wires and battery. If only I had been given this option, or performed better research prior to taking my doctors' recommendations.

Good luck with yours, and don't forget - it is your body and if you want it out, get it out. I truly believe mine increased my pain and problems. Hopefully once it's removed, I will have relief (or at least go back to the way I was before it was implanted).