Newbie checking in - C56 & C67

[davemmevad]

Hi All,
Been lurking here for a year, making up my mind, and really trying to avoid this decision. But C5-7 is bad (both levels) and to the point that my Neuro refuses to do a lumbar tap on me as the stenosis is flattening the cord blah blah blah (you all have heard that litany before, I'm sure). So I've known it was coming while we tried alternative treatment and PT, but the last 6 mos I've just gotten worse and worse. I have numbness, tingles, poor coordination, gait issues, and have started losing strength and the local doc offered a hybrid with potentially an off label on the 2nd level. But I'm hesitant as he has done about 70 singles, but didn't quote me a number on the hybrid or multi level, and the only disc available is the Prodisc (he feels the prestige is too bulky). I'd love to take the easy route and say yes, but in my heart I know the newer implants have improved a lot of stuff and ultimately I want someone familiar with multi level surgery in my neck, rather than someone who says 'lets do this' but doesn't have the multiple previous attempts to back it up. <sigh>. So like many, I am looking abroad, and frankly the out of pocket abroad doesn't look that different than the out of pocket portion of the surgery here. Sad to say that one, but oh well. Better surgery is really the motivator anyway.

Overall, I'm 46, 6 ft tall, 210 lbs. I ski, bike, and hike, and this year won't be doing any of these, as they light my symptoms off badly. Honestly, I've had the issue for years, I just think age and mileage caught up with me, and pushed past the next threshold, and I'm unwilling to let it get worse, which is suddenly is doing this year.

Not too much else to say, other than at the moment I am looking at Stenum, like many others here. I don't know if they are the best, but they are more experienced than what is available to me in the states, and like many vendors, have worked to get a good reputation and will hopefully work to maintain it. I agree with some earlier comments I saw that they seem to market, but that may not be a truely bad thing. But I'm rambling.

Thanks to all of you for the posts I've read here the last year making up my mind. I'll keep you posted as it proceeds.

Regards
Dave

[Harrison]

Welcome, Dave. And thanks for your thoughtful post...without questions!? Wow! Well, I have one for you regarding your cervical spine: you never had any trauma there?

It takes time to read and sort through the posts, but as you imply, if one reads topics across the forums on a regular basis, one can pick up a lot of useful information.

Keep us posted...

[davemmevad]

Hi Harrison,

Thanks! - and to answer your question about trauma, well, I ski (headplants), Bike (continuous strain), I'm 46 (couple car accidents, rodeo as a kid etc), and a bunch of other things too, so it is hard to say what one thing caused it, but what pushed it over the edge was a weekend on a BMX track with my kid a year and a half ago. No accidents, but a lot of jumps, and a couple hard landings where I cased it on the rear rim. I haven't felt my left hand since, and the right is bad, and other parts are now getting worse and worse. But when I am honest, I've had the trouble alot longer than that, I just found ways to work around it or through it. I am fortunate that I get numb/tingles/stinging instead of shooting pain most of the time, and if it wasn't starting to cause atrophy in the muscles, and gait/coordination issues I'd probably continue to live with it. But now I am losing part of my life, and I refuse to do that. The Neurosurgions threat of a wheelchair was a motivating factor to.

Regarding no questions, well, I'm an engineer, and I read, a lot, before making a decision, and so far I've found every quesiton I have answered here, or posted with the "every one is different" provisio. And, it isn't my first orthopedic surgery - connective tissue is what fails in my body, we've learned that over the years.

Of course I still have questions, but it is 'why this implant' vs 'why that one'. I like the M9 design, but can't think of a man made material that stays flexible for 40+ years ... so it scares me, as I see a revision in the future. The Pro-disc (or any other friction device) can generate particules and cause a reaction - and my body is good a drug and food reactions (I have celiac) - so that scares me about it. The Mobi-C and similar semi constrained seem like the best compromise - stable materials, less friction debris, but ultimately the surgeon is the expert, not me, and he/she shoudl have a better idea anatomically what will work in my body - and that is something no one can answer on a board :-). So I'm here with a year of poking around and researching knowing this was comming, and a bunch of thanks to those who have gone before me, as you ahve made getting here easier.

Regards
Dave

[Jack]

But now I am losing part of my life, and I refuse to do that.

This will be the tough part. I know, as I have had to accept that I could not continue at the same activity level. Once you can accept the new limitations, you find new activities that are just as enjoyable that you body enjoys too.

[davemmevad]

Hi Jack - yes you are correct, and I do not expect to be back to who I used to be. But I'd like to roll it back to a few months ago. So:

Will I continue to do 24 hour endurance rides? No
Do I want to be able to do a recreational ride with my 9 year old? Yes

Will I continue to ski Moguls and jumps? No
Do I want to cruise with my wife down the slope? Yes

Will I try to Climb Everest? No
Do I want to be able to carry a daypack again, and nto have my hands go numb? Yes

Will I keep tap dancing? Likely not.
Do I want to take the wife out for Tango? Hell yes!

So when I say I want my life back - I know fully that it won't be my old life, and that is cool - with my knees it is amazing I've still been doing what I have as long as I have. So I'll change, but I just don't want to sit passively by. Life is not a spectator sport.

-- update, got records to Dr B last night, yes I'm covering all the bases.

Take care all, and I'll keep you posted. In the worst case, my company's open enrollment included a plan that the local surgeon said was easy to get ADR from (HealthNet HMO) so in January I can use that if I need to. This will be fun.

-take care all,
Dave

[davemmevad]

For the newbies - Dr B. does NOT work at Stenum. Many of you will say 'Duh', but somehow i'd been under that impression, and it was wrong. Hopefully someone else will be saved some headache & confusion by me saying it outright.

That said, man - I spent a year browsing about the different implants etc and I still missed a whole bunch of information. Specifically the historic information on Stenum and their outcomes. Thank you Harrison, for steering me a little. I was too caught up in the technical side of stuff (hazard of geekdom). I know many of the current outcomes have been great, but the history is good to know. I also have to admit, I don't like the hard sell - kinda like a contractor coming to work on my house - I like the guy with dirty hands who is busy, not the one with slick brochures who can start work next week.

That is a round about way of saying I'm waiting to hear back from Dr B. <sigh> - so much of this is just waiting. And now that I've decided to go ahead I can't wait to get moving on this mess - it would really be nice to feel my hand again.

Okay - I'm done complaining. I know that we have an out comes thread, but this is my lead in. I never saw that.

Thanks All of you - you are making this junction of my life bearable.
Dave

[jimb]

Hi Dave -

Read your interesting posts, and wondering whether you've decided anything yet. I am also a 46 year old engineer and my favorite things are skiing, biking and hiking too - I even have C5-C7 problems like you, but got those fused in 2002. Now (big surprise) C4-5 has a stenosis and problems with nerves exiting on the left side. Physics 101. Now my surgeon wants to do another fusion. Yea, sure, Dr. Frankenstein, go ahead....

Had to stop biking a few years ago, but toned down the skiing (no more mogul fields, no crusty ice fields, no tree skiing, no more jumping, etc.) Hey - no Warren Miller stuff anymore, but it's still fun.

I submitted my MRI and xrays to Stenum last week and waiting for response. I like the description of the new disk they are using - the Spinal Kinetics M6. I don't want a disk with high chance of revision surgery or displacement. NO WAY am I getting another fusion even if the price is astronomical. What is money for, anyway?

Guess I should also check with Zeegers and or Bertignoli (sp?). Zeegers told me several years ago I was a good candidate, but it's deteriorated since. I'm writing at 5am right now, because I can't sleep. My symptoms are quite different from yours - depending on how I lie down or "sleep" in a chair, I get different things twitching and this horrible electric feeling that almost feels like somone running a feather slowly up and down the inside of my arms and/or legs. My health is really undwinding alarmingly fast because of lack of sleep. And, if you are an engineer you understand that not sleeping = doing a crappy job. Gonna miss another day of work today. I have to get this taken care of pronto.

Oh, yea - I also have United Healthcare like you. Crossing my fingers there. Not even sure they'll pay for lunch in Bremen, much less "experimental" surgery - LOL

- Jim

[annapurna]

Have you checked with the US patient coordinator for Pro-Spine? Laura's got a long history with Pro-spine that may have helped but in one week in Germany she completed a neurology exam with Baumbach, got her C-spine imaged with MRI and CT, called for an appointment with Pro-spine, met with Fenk-Mayer, got a discogram, and scheduled a surgery for January. I was operating under the impression, without having checked it, that the global recession had slowed down Pro-spine's business. If that's true, you might be able to check with the coordinator and see if he can help you move things forward. You pretty much have to be willing to lay the money down and go get surgery if you do play that option, though. I doubt that we would have gotten in at all if Laura hadn't proven that she was serious about doing what was needed for her spine health.

BTW, both Laura and I are engineers in our 40's. There must be something going around.