Hi guys! So, I went to my pain dr yesterday morning to discuss the x-rays he sent me for. Turns out that the thoracic paddle lead has moved up quite a bit and that battery is twisted. No wonder I am having issues. One of the cervical leads has moved, but not enough to be a problem. Dr says he could go in and fix it all, and while he is in there he could add leads to the thoracic one to give more coverage.

I already had one revision, 5 months after initial implant. I just don't know what to do...do I let him try to fix it or take it all out?? I have some serious thinking and to do. There is no guarantee this will help me and the thought of another surgery does not make me happy at all. BTW, I decided definitely no on getting a pain pump.

Nanc

I really feel for you! I can't imagine what you've already been through much less having to decide to do it all over. It's no big deal for the surgeon, no matter what happens they can go back and "fix it". It's "tuesday" for them but I don't think they realize how devasting it is for their patients.

I'm just facing my 1st SCS right now and I can't decide either b/c I've read so much of what everyone has been through.

What are your alternatives (if any) if they just take it all out?

Well isn't THIS a fine how-do-you-do!
On one hand, Nanc, it's good that they found this problem. It's pretty significant. On the other tho, the thought of yet another revision isn't what any of us would want to hear. I'm so sorry you are in this quandary. You've been battling this for quite some time.

Man! WHY can't they ever get it right the FIRST time!
More times than not it seems that these things require at least one revision. Like when my lumbar lead migrated down 6 inches and nobody from the medical staff was hearing me talk about how much pain I was having in my lower back. 6 MONTHS I was in this condition until I absolutely insisted that they take an xray. Because of it, I am having debilitating pain and spasms that are keeping me from being capable of employment.
There has GOT to be a way they can get those leads sutured in more securely. Almost makes me think they do a cr@p job the first time so they know we'll return to keep feeding their money tree.

I'm so sorry, Nanc. I'm angry. Angry that we have to suffer so much. Angry at the system. pffft.

Maybe, just maybe the revision would set everything straight for you. There's always that hope. Rather than throwing in the towel just yet (but who can blame you!) go for the revision and find out? Plus, the possibility of adding more coverage could be a good thing. If in the end you are still having problems, then at least you'll know you've tried everything possible. I'm thinking this is what I'd probably do, but then again, nobody but you really truly knows the extent of your suffering and who could blame you for being frustrated enuf to just get the hardware taken out.

My heart is with you my friend. I pray that the answer will come for you and that you can be relieved of all this frustration. Believe me, I feel it too.

Rae

That is such a tough call. What to do. If you get it fixed and it works, then maybe you can join us on the lake. A nice thought, that. We took my stim wired back and enjoyed an evening on the water last night. When it does work for a patient, it is quite a blessing.

I know the decisions are oh so hard. Thus I pray all will be well.

Thanks! I know you have a lot to contemplate with getting a SCS. It took me a while to come to my decision, but I found much support and info here.

You are right, it is just another day for the surgeon to go in and "fix it".

My alternatives would be taking everything out.
Nanc

Hi Rae! I did request the x-rays and am glad I did. I knew something wasn't right, after all I am the one feeling the increased pain! They think that they can just reprogram it to fix it...that wasn't working and now we know why.

I am with you Rae, why can't they get this right the first time...or even the second time??? Now a third? It is crazy and ridiculous! I feel like I should get things fixed because they did help me at one time. But then again, what if I have problems again...should I just get everything removed? Ugh

My husband doesn't want me to allow this dr to do anything to me until he supports my disability claim better. This dr is the one who sent me for a FCE and said he couldn't say I was completely disabled because of the FCE results. The FCE ONLY tested my strengths and weaknesses...how much I could lift, push, pull and reach. How long I could sit, stand and walk (only 3 minutes on the treadmill put my in tears and I had to stop). But the FCE reported I could do sedentary work, so that is what he and the disability insurance company went by. It did not test on my real working environment...working on the computer all day, etc. I was a finance & human resource manager and had a very demanding job. My husband is, of course, angry at this dr! But, I can't change drs right now because I am in the middle of the disability claim appeal. This is all so frustrating. Like having the constant RSD pain throughout my body is not enough, add this other on top of it

Anyway, I do have a lot to think and pray about. Thanks for the great support my friend.
Nanc

Hi Mark! I did have relief in the beginning and am trying to hold on to that to help me with my decision. Thanks so much for the prayers!

Nanc