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New Member Introductions If you just joined, please introduce yourself here. Please add a signature describing your spinal history (use the "User CP) and ask us how we can help you get started.


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  #1  
Old 03-29-2010, 07:41 PM
ckessel ckessel is offline
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Join Date: Mar 2010
Posts: 7
Default L5 rupture at age 30, 11 years later need to do something

Here are my basics. If anyone can refer me to someone in Portland to start the process, that'd be great.

- I live in Portland, OR
- 41, fairly fit, used to be pretty active, but activity now is very constrained
- L5 rupture at age 30, major back spasm at the time, intense pain and loss of some motion in left foot (toes). Not sure if it's L4-L5 or L5-S1.
- MRI 10 years ago was "inconclusive", minor rupture but not obvious pinching. Chiropractic, pain and muscle relaxant meds, and time restored more or less "normal" abilities. 2 MRI's since show a degenerate disc, but "nothing major, surgery may not help".
- Worked around it for 5-6 years, wore a back brace during sports, but still played volleyball. Had occasional flare ups with back spasms. Managed with muscle relaxants, NSAIDs, and stretching.
- Gradual worsening. Gave up volleyball at age 36. Very careful with how I lift weights.
- BLEEDING ULCER. Tangentially related. Turns out I'm one of those 1 in 100 that's allergic to NSAIDS (ibuprofen). I'm not allowed to take it anymore to manage swelling/pain/stiffness in my back. I had been taking them regularly (daily) on my doctor's recommendation to manage my back pain/spasms. Son of a bitch!
- Steady degradation of abilities. I can still lift weights and bike limited distances (~6 miles before foot numbness), but walking any significant distance (more than 1-2 miles) results in a very stiff back. If I walk more than a day or two straight, like say a family trip to Disneyland, I have back spasms and am laid up in bed for a few days of very limited activity.
- Today: Walking distance is limited. I can't sleep on my back at all anymore. I wake up often (in pain) with my lower back muscles trembling if I've rolled onto my back in my sleep. To the casual eye, I'm fit and strong from weights and a stationary bike, but I feel near crippled. I fear stairs if my back is feeling stiff knowing a spasm is waiting for any wrong step. It's embarrassing to say, but sometimes if my back is bad it really inhibits my ability to be romantically inclined. I read one person's report that they're basically impotent after surgery, so that scares me a bit.

In short, it's gone with something I could live with to something very much determining how I live. I'm in tears as I write this, just in hopes something can be done. I've seen doctors three times over the last 10 years (including new MRIs) and get the same "No nerve damage, should be manageable. Wait for fusion as long as you can." message. I can't walk with my family while on vacation. I can't throw a baseball with my son for fear I'll have to bend to catch a ball. I can't sit at a restaurant for the full dinner without having to stand and stretch my back for a minute. I don't want to keep "managing" like this. I've got probably 40+ years of life left and I already have more limitations than most people I know 20-30 years older than me.

So, what do I do? What do I ask? Who do I ask? Is one replacement disc model significantly any better than another? Where do I start looking for a doctor who can navigate me down the road to some sort of solution even if it's not ADR?

My thanks to anyone that can help point me in the right direction.
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  #2  
Old 03-29-2010, 09:47 PM
scduggan scduggan is offline
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Join Date: Sep 2009
Posts: 47
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Dear ckessel,
Welcome to the website. You were in tears typing, and I am close to tears reading. I am so sorry about your situation. There are so many people on this website with good information and advice. They will no doubt be chiming in soon. First, I think you should do all you can to find the best spine surgeon in your area. Some people see a neuro and some see a ortho. Could you ask around or use the internet to find someone for an appointment. It is always good to see a surgeon who does have experience with ADR if you are hoping you might be a candidate. A lot of surgeons will not recommend it if they themselves do not do the procedure. I know most of the time six months of conservative treatment is required before they will even attempt surgery. I know you have been dealing with this for years. You probably have already done some of these therapies.

How old is you most recent MRI? It could be that something has changed which would explain your dwindling quality of life. I also know sometimes things could look horrible on x-ray or MRI and you are asymptomatic....or, you can have LOTS of pain and your diagnostic work does not look that bad. Go figure.

YOU ARE NOT ALONE. I am also a lumbar person so I know where you are coming from. I wish you luck. Do not stop searching until you find a surgeon you feel good about. I ended up getting four opinions before I had my surgery. It sounds completely exhausting, I know. But it is your spine and you are so young. Hang in there and don't let the difficulty of whole crappy situation get you down. You have made the first step already.
CD
__________________
44 yr. old female
DDD at L4-L5
low back discomfort for several years
LBP for 2 to 3 years-much worse since April '09
44 visits to chiro in 6 months
PT & ESI (failed)
Discography/CT -positive at L4-L5, annular tear & bulge
three denials from UnitedHealthcare for ADR
Surgery 2/18/10-Freedom Lumbar disc L4/L5
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  #3  
Old 03-29-2010, 10:05 PM
ckessel ckessel is offline
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Join Date: Mar 2010
Posts: 7
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Thanks. My last MRI was about 4 years ago I think, when I had a serious of painful back spasms that had me pretty much able to drive and get to work and that's it. I literally crawled across the floor from kitchen to couch on Christmas that year after a spasm walking out of the kitchen made it too painful to stand up . I figured the first step is probably new MRIs. I'm going to call the Ortho clinic where I had my steroid injections a few years ago and start asking around. MRIs, unfortunately, don't show much. While laying down for any extended period starts to hurt after 20-30 minutes, it doesn't seem to show much useful on the MRI.

One thing I'm really afraid of is that I've waited too long. I keep reading about contraindications if you've got other bad discs or other issues. I've been compensating for issues for so long I've got pain in my hips and other spots in my low back as well. Chiropractic has helped these "secondary" things just fine, but the problems have definitely increased in the last 2-3 years. I going to be hugely depressed if I'm disqualified for an ADR basically because I didn't have an ADR soon enough.

Is there a trick to finding the best surgeon in town other than cold calling ortho/neuro places and tracking who gets recommended the most?
__________________
41 year old male
Ruptured L5 (L5-S1 I think) 11 years ago
Back pain, stiffness, spasms, foot numbness sometimes
Limited ability to walk or stand for any extended period
Have had PT, steroid injections, chiro, massage, etc.
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  #4  
Old 03-30-2010, 01:07 PM
Harrison's Avatar
Harrison Harrison is offline
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Join Date: Oct 2004
Posts: 7,010
Default A few info-bits...

Here’s few pointers to help you address this challenge. First, leverage the fact that this question comes up frequently, so do a search of the web site which includes posts back to 2004. If you search for “best surgeon” in the title only, you’ll find posts like these:

Who is considered the most experienced ADR surgeon in the U.S.?

Best U.S. Spine Surgeon

But you can also search through posts using “Portland” and other terms. If you care to travel to other west cost states, if you are qualified for ADR, there are many other experienced arthroplasty surgeons, especially in California.

In 2004, when I first built the ADRSupport web site, I posted the names of surgeons who had at that time some experience and a track record with ADR. One of them from Oregon, Dr. Kitchell, is listed there (here’s their website). I actually do not know of his patient outcomes so I cannot speak to his expertise. That’s your job to find out!

Chris, in the meantime, are you seeing a good doc to take care of that tummy? A nutritionist or N.D. would be a smart next step…
__________________
"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
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  #5  
Old 03-30-2010, 04:12 PM
Kirk Kirk is offline
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Join Date: May 2006
Posts: 135
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Your situation sounds somewhat similar to mine, except my issues were at L3-4, and L4-5. Onset at age 30, and finally got the discs at age 43, a bit over two years ago. I had a lot of the same symptoms you have. I'm doing great now.

I think I read the same post about the guy who is impotent now, but that seems really rare - I don't recall another case here in about five years of reading.

Keep at it. If your insurance will not cover you, and you have the money, consider going to Germany to get it done. That's what I did (though I did get reimbursed afterwards). Even if I would have had to pay the $42K, it would have been worth every penny and more.

Kirk
__________________
http://kirksbacksurgery.blogspot.com/
My tale of woe:
"Threw back out first time in 1986 at 22 years old leaning over brushing teeth. Recovered in a few days.
Threw back out again 1988, 1989, 1993. Chronic pain begins in 1993. MRI shows
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  #6  
Old 03-30-2010, 09:14 PM
ckessel ckessel is offline
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Join Date: Mar 2010
Posts: 7
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My current insurance does cover ADR. As to whether or not I qualify, there's a ton of terms that even when I look up I have no way of knowing if it's a problem (e.g. degenerative spondylolisthesis with greater than 3 mm slippage) or not without a new set of MRIs. The only problem previous MRIs saw was the one bad disc, but that was over 4 years ago now, and 10 years ago when I first had the problem the doctor mentioned I was a candidate for ADR but it was (at the time) very experimental and my symptoms (again, at the time) weren't severe enough to make me a good candidate. Assuming little has changed except the disc is worse and ADR is more well known, I'd guess I've got a shot at ADR being a solution.

I have been hunting for surgeons via Google. I did run across Kitchell's name and he's about 100 miles south of me. Eugene is a small town (where Kitchell is), but has some renowned ortho surgeons, though historically more for foot/knee injuries (Eugene is a big track and field town due to the U of O). I also found a Dr. Kellogg here in Portland that does ADR.

The biggest problem is how the heck do you know if they're any good or how many surgeries they've performed? In addition, it sounds like the vascular surgeon is HUGE in lumbar surgeries so I'll need to know more about that surgeon as well. The research needed and the social engineering required to get it is rather daunting! Also, I've read the brochures and hit a bunch of Google sites, but I'm not really finding anything that indicates if any disc is significantly better than another. Charite, Pro-Disc, does it matter?

Who do I talk to first? Dr. Kellogg's office assistant said if I'd had MRIs and pre-surgical workup, then I could call and make an appointment. Which to me sounds like I need to start with someone other than the surgeon to get the preliminaries done?

Edit: Yikes! Google for "charite oregon" and nearly every listing is about a lawsuit...
__________________
41 year old male
Ruptured L5 (L5-S1 I think) 11 years ago
Back pain, stiffness, spasms, foot numbness sometimes
Limited ability to walk or stand for any extended period
Have had PT, steroid injections, chiro, massage, etc.

Last edited by ckessel; 03-30-2010 at 09:56 PM.
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  #7  
Old 03-31-2010, 01:08 PM
Kirk Kirk is offline
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Join Date: May 2006
Posts: 135
Default

Have you had a discography done?
__________________
http://kirksbacksurgery.blogspot.com/
My tale of woe:
"Threw back out first time in 1986 at 22 years old leaning over brushing teeth. Recovered in a few days.
Threw back out again 1988, 1989, 1993. Chronic pain begins in 1993. MRI shows
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  #8  
Old 03-31-2010, 07:51 PM
ckessel ckessel is offline
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Join Date: Mar 2010
Posts: 7
Default

Quote:
Originally Posted by Kirk View Post
Have you had a discography done?
No. Can't remember if it was my 2nd or 3rd time getting MRIs, but the doctor said a discography was the next step. However, it was only worth doing if I was going onto a more serious remedy like fusion or ADR, though he noted ADR at the time wasn't FDA approved so that was probably out. The recommendation was to live with the problem given they weren't fully debilitating.

So, no. I'm sure that's in my path now. MRIs, consults, discography, etc. So far, Dr. Kitchel in Eugene sounds really good, but the idea of multiple trips back and forth kind of sucks. Oh well. Maybe he'll let me get some of the stuff here in Portland.

My case has been frustrating (for me). Nerve reflex tests generally look good, MRIs haven't shown severe problems either. I come across great physically in an exam. Hell, for a very brief time, I can run and jump, but then my back gives and I'm on the ground with spasms. Same if I have to walk or stand for significant periods of time, especially the day after. But, because the problems aren't obvious during a visit I get a lot of skepticism about whether any medical action is really necessary. Wish they would come visit me when I'm waddling with baby steps due to back spasms!
__________________
41 year old male
Ruptured L5 (L5-S1 I think) 11 years ago
Back pain, stiffness, spasms, foot numbness sometimes
Limited ability to walk or stand for any extended period
Have had PT, steroid injections, chiro, massage, etc.
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  #9  
Old 03-31-2010, 08:04 PM
ckessel ckessel is offline
Junior Member
 
Join Date: Mar 2010
Posts: 7
Default Any experience with Dr. Kitchel in Eugene, OR?

In searching for a "local" surgeon that does lumbar disc replacement, I've come across Dr. Kitchel. Does anyone have any experience with him, even 2nd hand? What little I've found looks good, but I'm trying to do my homework and see what else I can find out.
__________________
41 year old male
Ruptured L5 (L5-S1 I think) 11 years ago
Back pain, stiffness, spasms, foot numbness sometimes
Limited ability to walk or stand for any extended period
Have had PT, steroid injections, chiro, massage, etc.

Last edited by Harrison; 03-31-2010 at 08:13 PM. Reason: Merged topic with other new topic for continuity
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  #10  
Old 04-01-2010, 01:42 PM
Kirk Kirk is offline
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Join Date: May 2006
Posts: 135
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In my experience the MRI is one of the less useful tools. I was told by multiple doctors that you can have an MRI with discs that look terrible, and the person has no back pain whatsoever; then you can have an MRI with discs that look okay, but the person has horrible back pain. My discs did not look all that bad - some degeneration, some tears, slight herniations, etc., but the doctors told me that the MRI was not all that uncommon, and that many folks with these conditions have no back pain.

In my opinion, the discography is the gold standard in determining what you need to do. If the discography recreates your pain, then your pain is discogenic. Something must be done to the discs, including possible removal, in order to alleviate your pain. It's pretty simple - again, in my opinion.

My situation was much like yours in that when I presented to the doctor for a routine appointment and told them about the activity I was able to keep up (running, up to half-marathons, didn't take pain meds), it seemed to make them think it was not that bad, despite the fact that I was unable to do any other sports and, like you, was terrified of hurting my back from everyday activities like going down stairs. They could see that my back was crooked from the spasms (very crooked when I had done something to it), but the U.S. doctors didn't have any answers other than triple fusion, IDET and other procedures which I did not think had a high chance of success. It wasn't until I started looking at ADR (researched it for ~3 years before surgery) and eventually talked to Dr. Zeegers that it was clear that ADR made the most sense, for me.
__________________
http://kirksbacksurgery.blogspot.com/
My tale of woe:
"Threw back out first time in 1986 at 22 years old leaning over brushing teeth. Recovered in a few days.
Threw back out again 1988, 1989, 1993. Chronic pain begins in 1993. MRI shows
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