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  #11  
Old 04-23-2012, 07:53 PM
KurtSFO72 KurtSFO72 is offline
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Join Date: Apr 2012
Posts: 10
Default Update:

I saw my neurosurgeon again this morning to review the latest MRI from the 9th. There hasn't been much change in the past year. He's encouraging me to go get more opinions but said in his mind, until I'm nearly disabled from this (i.e. no longer able to work, problems walking, etc.), to hold off on ANY surgery including ADR. While I appreciate that honesty, my fear is not being a candidate for ADR at some point because of the disease progression (L5-S1 is basically bone-to-bone now) and I really don't want to start down the fusion path at my age (40). Surgery is probably inevitable at some point given my family history of DDD and several members who have had to have at least 2 levels fused. In fact, the Dr told me this morning that it's probably inevitable unless I can "stick it out" until my 70s by which point L5-S1 will probably auto-fuse anyway.

While I certainly agree that I'm not disabled per se, being in some level of pain daily along with numbness and tingling isn't pleasant and at times it does affect me mentally/emotionally...it's draining. I'm still having a dilemma of trying to determine when it's "time" I guess. Being in any one position for too long makes things worse which means my sleep is disrupted almost nightly. That causes me to have to get up, stretch and many nights take some narcotics just to get relief so I can go back to sleep. Then I have trouble getting up and going in the morning because I'm in a "drug coma". Luckily I work from home when I'm not traveling for work so right now, that's manageable. The Dr has suggested going back to my gym routine (my "routine" right now consists of only walking) and if it hurts, stop. ??? Seems a little risky but perhaps better than nothing at all and maybe that will force a decision. Ha!

Has anyone else been in this situation of not being completely incapacitated by symptoms but still faced with trying to decide if they should just proceed with the ADR? I'm scared to do it but also scared to not do anything if it means I can't go the ADR route later due to DDD progression.
__________________
DDD at L3-4, L4-5, L5-S1
L5-S1 extrusion/protrusion w. annular fissure contact w. S1 nerve root
No surgery to date
39 yr old male


Last edited by Harrison; 04-23-2012 at 07:54 PM. Reason: changed format -- font was crazy small
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  #12  
Old 04-23-2012, 07:56 PM
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Harrison Harrison is offline
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Default

Kurt, it sounds like where I was in 2003 and 2004! I hope we can help you. If you can't afford the DVD that addresses many of these topics for pre-surgical patients, I'll send you a copy.

Good luck with your next steps, we are here for you.
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"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
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  #13  
Old 04-23-2012, 09:40 PM
KurtSFO72 KurtSFO72 is offline
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Join Date: Apr 2012
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Quote:
Originally Posted by Harrison View Post
Kurt, it sounds like where I was in 2003 and 2004! I hope we can help you. If you can't afford the DVD that addresses many of these topics for pre-surgical patients, I'll send you a copy.

Good luck with your next steps, we are here for you.
I actually ordered the DVD this afternoon! So at what point did you finally say "okay let's do this?". Did you wait until you were really disabled or did you do it to get the inevitable out of the way? What I'm hearing is that I will have to have "something" done at some point...and for me, I'd rather do the ADR.
__________________
DDD at L3-4, L4-5, L5-S1
L5-S1 extrusion/protrusion w. annular fissure contact w. S1 nerve root
No surgery to date
39 yr old male

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  #14  
Old 04-24-2012, 08:18 AM
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jss jss is offline
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Join Date: Nov 2009
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Quote:
Originally Posted by KurtSFO72 View Post
Has anyone else been in this situation of not being completely incapacitated by symptoms but still faced with trying to decide if they should just proceed with the ADR? I'm scared to do it but also scared to not do anything if it means I can't go the ADR route later due to DDD progression.
Kurt,

Because there are so many variables that go into when and which surgery to have, unless one is incapacitated, it can be very difficult to know if or which surgery to have.

Of all three of my surgeries the decision was easy. For the first one, my symptoms were probably much like what you're currently describing, but the MRI showed the spinal cord compressed to half its normal diameter. I have a quadriplegic in the family and another member that is disabled from waiting to long to have surgery, so the doctor didn't have to work hard to convince me that surgery was warranted. Loosing the use of my right arm prompted the second surgery, and then being incapacitated in pain prompted the third.

This looks like a very good time to get all of your research done into the various treatments and what your insurance will cover. If you become incapacitated suddenly, like I was, the decisions will already be made and you'll be ready to move.

Good luck, Jeff
__________________
C4/5 - ACDF in 2000
C5/6 - ACDF in 2002
C3/4 & C6/7 - M6 ADR, Nov 2009, Barcelona
Conceded defeat to a manifestly disingenuous BCBS-TX in my quest for reimbursement, Jan 2011
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  #15  
Old 04-24-2012, 11:45 AM
KurtSFO72 KurtSFO72 is offline
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Join Date: Apr 2012
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Quote:
Originally Posted by jss View Post
Kurt,

Because there are so many variables that go into when and which surgery to have, unless one is incapacitated, it can be very difficult to know if or which surgery to have.

Of all three of my surgeries the decision was easy. For the first one, my symptoms were probably much like what you're currently describing, but the MRI showed the spinal cord compressed to half its normal diameter. I have a quadriplegic in the family and another member that is disabled from waiting to long to have surgery, so the doctor didn't have to work hard to convince me that surgery was warranted. Loosing the use of my right arm prompted the second surgery, and then being incapacitated in pain prompted the third.

This looks like a very good time to get all of your research done into the various treatments and what your insurance will cover. If you become incapacitated suddenly, like I was, the decisions will already be made and you'll be ready to move.

Good luck, Jeff
Very good advice, Jeff! So far, I haven't started the fight with my insurance carrier yet since I haven't made the decision to go with surgery or not. I already know they cover ADR-C but not ADR-L but my Dr said he can appeal it and I guess has had some success in doing that. As you said though, I'm still gathering other opinions and just lining things up.

I hope you are doing well now.

Kurt
__________________
DDD at L3-4, L4-5, L5-S1
L5-S1 extrusion/protrusion w. annular fissure contact w. S1 nerve root
No surgery to date
39 yr old male

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  #16  
Old 04-26-2012, 03:56 PM
JJames JJames is offline
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Join Date: Nov 2008
Posts: 102
Default The Surgical Decision ....

Kurt,

I can most definitely sympathize with your situation regarding the question of just how "bad" of condition / pain do I need to be in to decide to make the jump into surgery.

I wish I had an answer or a helpful suggestion. I am sadly stuck in the same situation as to the confusion on what to do. I am fairly medically-ignorant, and feel so even more when I read how much so many others on these boards seem to know and understand about their own condition(s). I finally began my short-term plan of at least prepping for the possibility of surgery for me - quit smoking since Jan 13th 2012 and started getting some professional psychological help.

Best of luck in whatever decision you ultimately make. If you find there is something specific which really helps direct your thoughts one way or the other, let me know huh? In the meantime, know that you are certainly not alone in struggling with this decision.

Jeff
__________________
DDD diagnosed ~99
Chronic Pain since Aug 2006
Failed L4 Microdisctectomy Apr 2007
2008-Positive Disco (L4/L5&L5/S1 annular tears)
Herniated discs at L4/L5/S1, bulging T12
Began constant/severe neck & upper back pain 11/09
Jan 10-Cervical/Thoracic MRI:bone spurs+new disc probs
Cervical Spine issues causing terrible pain beginning in July 2021 - scheduled for 2 level C-Spine ADR on Oct 19th 2021 now!! Part of Clinical Trial so unsure if Mobi-C or Baguera C will be implanted ....
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  #17  
Old 04-26-2012, 07:40 PM
Dingie Dingie is offline
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Join Date: Oct 2011
Posts: 146
Default 3 Level M6-L L2-L5 Dr. Clavel 3/14/12

Hi,

Sorry to have to join in the welcome to the site

I too have DDD. I do have a medical background, not sure how helpful that was to be honest. I did NOT want surgery, I had EVERY available treatment at least once, including an IDET. i had 3 surgeons, 1 neuro, 2 ortho all suggesting ADR due to the DDD and the potential for adjacent level disease that would occur with fusion.

My only regret looking back is that I spent soooo much time trying to avoid the surgery. No one answer is the right one for everyone. However, I feel like a new woman. I am 6 weeks postop, I am walking 3 to 4 miles a day in ome mile segments, no problems. All the presurgical pain and numbness is gone and was since I opened my eyes after surgery.

I unlike many on this site am just now finishing weaning off mynpain meds, but still could mot be happier. Whatever you choose the good news is you do have some options. On a negative Nellie, I also have UHC and they denied all the way through outside party arbitration. Still the best money I ever spent.

Good luck on the search, read until you are comfortable and at some point I just took a leap of faith.

Laurie
__________________
50 y.o.
WW athlete- triathlete, runner, tennis
2008-0nset of pain..MRI-DDD L4-L5 annular tear. Pain labeled discogenic with radiation to unilateral hip, no radiculopathy
2009-facet inj, radiograph ablation, SI joint injections, cryoablation stubborn no relief
2010-retired d/t pain. more injections
2011-IDET of L3-L5. Pain unchanged, up 50 lbs!
2011-Lumbar ADR recommended by Ortho and 2 neuros. In appeals w/ins. May choose Europe for M6
Need to lose lbs
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artificial disc replacement contraindication, disc degeneration, lumbar arthroplasty, lumbar artificial disc replacement, lumbar ddd, lumbar disc replacement - range of motion - posterior longitudinal ligament - biomechanics, lumbar fusion, molecular diagnostics, spine surgery

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