Surgical Options for Long Time Spiney

Jim M2 · #1 (**permalink**) 10-26-2013, 11:50 PM

I had L5S1 Charite in 2003 that could have caused facet and SI joint problems with some pretty high pain levels which I've dealt with for the past 10 years. In addition to the L5S1 facets and SI, I now suspect L4-5 discogenic pain that on some days has driven me home from work early so I could lay down. In addition I have pretty bad cervical and T-spine pain sources. If I lose my ability to work I think that will be the start of a death spiral. The only hope I can see is to roll the dice on surgery.

Lumbar
I'm thinking an L5S1 revision to fusion and L4-5 fusion if both levels can be done together. This may not be possible simply because I can't imagine a really good surgeon wanting to take on a revision. Why should they want to deal with it when they have a long list of patients who they can help with a much higher percentage of success.

Cervical-thoraic
Probably a multi-level fusion would be my choice if I can't find a lower risk treatment. I'm gun-shy about trying ADR again given my lumbar experience.

The goal is to get well enough to stay at work so I don't start a downward spiral. I would go for heavier medications but the PMs seem hesitant to help me in that respect. Any feedback would be appreciated.

Jim M2 · #2 (**permalink**) 10-27-2013, 12:04 AM

My PM has suggested a spinal cord stimulator (SCS). Here's my take on SCS. I had a partially failed surgery at L5S1. I think the disc pain was cleared up. There were facet and SI complications that cause me problems to this day but I have some radiating pain into my legs/feet but it's no where near my chief complaint. SCS seems to be best for failed surgeries for which there are no longer surgical options. I have a promotional DVD that shows an animation of pulsing red in the leg signifying horrible leg pain. This are not my situation.

Plus the sweet spot for SCS is placement of electrodes up in the T-spine in the area where I have other problems.

I just finished a psych evaluation (an SCS requirement) and I go back to talk to my PM on 11/5. I strongly suspect I'll decline even the temporary electrode trial unless I learn something different.

Comments?

Maria · #3 (**permalink**) 10-27-2013, 02:18 AM

Jim,
I'm sorry to read you're having problems. I imagine part of that is because you do work and can't rest when you really need to or for the amount of time that you might need to but then again it could just be time to do something about the issues at hand.

I would say that if you could get out here to CA that seeing Dr. Coufal in San Diego would be well worth your time. I bet he could and might do the revision type of work. He's a neurosurgeon and was a 2nd surgical opinion I was sent to in 2006 and Mark accompanied me and has kept up with him I believe. I referred a neighbor of mine to Mark and Dr.Coufal and she had a cervical fusion and ADR and seems to be doing quite well. I believe she has other work to consider as well and is very pleased with Dr.Coufal and I don't think she will hesitate to do what he suggests.

I know that's a distance away for you and I'm sure you'd like to use someone local though I just thought I'd throw it out there.

The other thing is would you consider going on permanent disability? Doesn't sound like you want to do this and you may not feel able to do so either though I just wondered. I once felt like it would be the worst thing in the world to do and yet honestly I think I was able to choose not to have more surgery because I stopped working. Anyway no one was offering me anything but a 3 level global fusion back when I left work and that was just not agreeable to me at the time (and I'm still glad I didn't have that surgery).

Back to surgery.. what revision specialists have you thought about consulting with? I'd be interested to read more if you feel like writing about whenever or whatever you do. Meanwhile take care, Maria

Jim M2 · #4 (**permalink**) 10-27-2013, 02:48 AM

Maria,

I've lived in San Diego for almost four years!!! I also heard about Dr. Coufal from a co-worker who thinks he hung the moon. I haven't seen any specialist yet. I proposed to my PM that he do whatever procedures are needed to better identify pain generators. I wanted that knowledge before I visited surgeons who may not always give full consideration to that kind of thing. My PM countered with the SCS idea, which I'm lukewarm to at best.

Maria · #5 (**permalink**) 10-27-2013, 06:12 PM

Hey Jim that's great that you live in San Diego.. I'd definitely try to get a consultation with Dr. Coufal. Talk to Mark about it.. this guy is super ethical and even though I don't want more spine surgery I'd trust this guy to do it and believe me my trust re spine surgery doesn't come easy.

My PM is down in San Diego too (Kevin Toliver over at Scripps Mercy medical center).

Good luck with all~ Maria

Jim M2 · #6 (**permalink**) 10-28-2013, 06:03 AM

Tomorrow I'll make an appointment with Dr. Coufal. I'm heard nothing but good about him. Thanks Maria.

Maria · #7 (**permalink**) 10-28-2013, 02:58 PM

good decision I say! Hope you don't have to wait too long for an appt.

Maria

mmglobal · #8 (**permalink**) 10-31-2013, 12:13 AM

Jim,

Coufal sees patients up in Anaheim every other week. The hospital he works in there is excellent. He used to have some other satellite offices you might want to look into. (Woops... I see you are in SD now!)

Regarding lumbar revisions... Dr. Coufal did a revision on a client of mine and after years in a wheelchair following multiple botched surgeries at Stenum. Immediately following the surgery, she left the wheelchair behind and has been in law school for a couple of years now.

As of a two years ago, Regan had done more than 36 explant revisions of ADR's. He likes to do a anterior and posterior procedures for ADR revision. If I were considering what you are talking about, I'd be looking for a posterior only procedure... to fuse L5-S1 with the prosthesis in place and also fuse 4-5 from the back.

If your pathology is so profound that you won't be able to avoid surgery, you might consider waiting on the SCS until you are done with surgery. You could have a positive outcome... I'd hate to confuse the situation with more hardware and more entries to the spinal canal.

Good luck.... call me some time and we'll catch up.

Mark

Jim M2 · #9 (**permalink**) 10-31-2013, 05:11 AM

Mark,

Shortly after the surgery in 2003 a Seattle surgeon told me for fusing the ADR in place they remove and clean out the facet joints. They place bone chips where the facets had been and add the rods. The rods are supposed to fix the two vertbras (sp?) until the fusion occurs where the facets had been. He said the success rate was only about 50%. Typically the rods did not eliminate enough motion to allow fusion. That was then.

I think SCS is premature at this point. If I go for surgery and it doesn't turn out well, then I would consider SCS more seriously.

My first preference would be to go with stronger medications as long as possible. At some point these back problems will be naturally taken care of. If not the fallback is surgery.

ps - My wife will mail the SCS DVD tomorrow. We're in a crunch for free time. Our condo was flooded and the kitchen and dining area was demolished for dry out. Ugh.