I have been 100% disabled for 10 years as my spine is self-destructing from the top down. I've had three cervical fusion surgeries and am fused from C3 through T1. Now T6, 7, 8, and 9 are acting up. Tingling, burning, and outright ouch pain that includes the mentioned T areas and heads up to my neck and out, across my shoulders and down the backs of my arms.

My pain management Dr for the past 8 years has been great. He and my cervical surgeon referred me to another Dr, specializing in Stimulators because, "No one is going to touch your thoracic spine, surgically speaking".

The Stimulator guy is recommending a Medtronics unit that will have wires around the thoracic areas causing the problem.

I'm on an information hunt as to whether this is a good idea, or not. Whether Medtronics is a good idea or I should look at other companies' products, too.

One reason I'm leery of the Spinal Stimulator route is that, even though the fusions I've had have helped somewhat with some pain levels, they have not helped with 50% of the pain. I've also tried many epidurals at Drs' urgings and have never had any relief from them.

Information and advice of any kind is welcomed.

Dave

Welcome to NT, I'm so glad you found us!
I'm sorry to hear of this prolonged disabling pain that you've been experiencing. Did you have an injury to spark this, or is it a degenerative condition?
The good thing I'm seeing is that you've got good doctors looking after you. You certainly want a doctor you trust and who has extensive experience with these.
I have a medtronic unit for my lower extremity RSD, burning nerve pain. I've been very happy with it - covers 70-75% of pain. Several others here have the Medtronic as well. Boston Scientific seems to be the company that is most esteemed, at least from what I'm seeing, but I spose it all depends on the condition being treated.

I live in a small community and didn't really have a choice of which company to go with. Medtronic is the vendor my Dr uses and that was that. Mark56 loves his Boston Sci! It's amazing to see how far he's come since his horrible car accident. He'll be along shortly to share.

I don't blame you for being leary. We ALL were! Heck, I was totally creeped out when first told about these things

Please stick around! You're sure to get lots of support and feedback.
This is such a great place

Caring,
Rae

Times in the OR so far..... the last two were the Boston Sci Trial and the Permanent Implant. Yes indeed, I had trepidations originally... but, you know? Chronic debillitating pain which imprisoned me in our bedroom ultimately drove me to the OR for the implant. Pure and simple.

Yep, I was afraid, but thrilled to do it. Injections were never helpful for me, but then all humans are unique... yes?

Welcome among us, and bring your questions along!
Mark56

I've been told that, although the SCS will help with the level of pain I am experiencing, this will in no way help with my rapidly degenerating spine. I have further been told that I could damage my spine quite easily and end up paralyzed.

My thought on this is that maybe I should live with the pain, and the additional pain caused by certain movements, so I can tell when I am doing something that is potentially disastrous. Perhaps masking the pain is a bad idea. None of the Drs want to talk pros and cons on this, they just say, "Well, it's your decision," while talking up all the pros while avoiding any cons.

Kind of a vent, but would like any input on this, too.

Dave

Dave you bring up a very good point. You're right, this is something you need to think on considerably. Since this is a degenerative issue, like you said, it might be better to be able to monitor what's going on.

What a shame it is that your Drs won't go the extra mile and sit down with you to really discuss this! I do know that they would LOVE to sell you one of these things ..... it's such an incredibly high-dollar money maker, alot of times it comes across like a sales pitch - like they are selling you a car....... a $100,000 car!

My thought on this is that, since your whole spine is involved, it might be difficult to position the leads to cover the entire spine. I'm not sure on this tho. Maybe it wouldn't hurt to check into pain pumps and see what they might have to offer. With the pumps, you are being medicated 24/7 to cover a wider array of pain. At least be able to sit down with someone who can compare the pros and cons of both. You need REALITY, not sketchy info from someone who might stand to make a huge kickback if they sell you the SCS.

I truly am sorry you are up against this.
Let's see what other feedback we can get....

Hang in there, k

Rae

Especially since it seems advice is the missing component. I mean, after all, c'mon with the disclaimers and the notoin of giving so much pro information without giving contraposing trouble information.

True, the patient does have to make the decision, and sometimes the idea of informed consent seems either fleeting or missing. How to decide? The notion of asking on here is a good thought, but as Rae points out you present probably one of the most difficult situations I have read about.

I know in my situation where we were aiming to hit lumbar and legs, it was a go and success. You are trying to cover more area, and I just begin to think the question Rae poses about maybe a pain pump might be worth checking out. It depends whether in your situation you can continue to do the meds.

Prayin and hopin you are given the disclosures you need to make good decisions,
Mark56