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  #1  
Old 06-05-2014, 01:25 AM
Deemzee Deemzee is offline
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Default Central stenosis-- what happens?

Has anyone out there gone through the advanced stages of central stenosis, cord compression and flattening, etc? I have gotten numerous opinions from around the globe regarding my severe stenosis at c3-c7-- from a 4-level fusion to hybrid with adr's and fusion combined at three or four levels to other variations. The bottom line is that no one truly agrees and so I've settled with one of the many opinions which is: to wait. A majority would not agree with this given the severity of my condition but while my MRI is ugly, I feel mostly fine-- some hand sensations and occasional 'nervy' stuff here and there, a little discomfort in my neck at times, but mostly very minor compared to what I know is possible.

Of course I'm at high risk for paralysis, and/or bladder, bowels, etc. scary irreversible stuff. I'm willing to live with the risk because as of now, surgery would likely create pain rather than relieve it and I'm frankly not "ready". So here's the question: I'm following the advice of one doctor to wait. He says I'll 'know when it's time'.

Does anyone know what that means and can you explain it to me? What does it feel like? What should I know? How did you "know"? I've recently started feeling soreness in the heel of my foot when I put weight on it, and mainly only first thing in the morning or at night. It feels like general sort of deep bruise soreness, almost like a Charlie horse kind of I-banged-it on something kind of soreness. Has anyone experienced this? I find it hard to believe it's related...just doesn't seem like it or am I deluded? Is this the beginning? Should I begin to think about surgery because this means it's coming? What did you experience, what did it feel like, and how did you know "it was time"? Any insight or experience would be deeply appreciated.
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DEC 2010 -- 51 yrs old-- multiple problems with C3-C7 --kyphosis, stenosis, cord flattening that has slowly evolved from a fall at age 12-- not much pain yet but told to fuse 4 levels and looking for alternatives
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  #2  
Old 06-05-2014, 10:54 PM
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Harrison Harrison is offline
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Deem, when you get a chance, can you paraphrase or copy your radiology report wording of your recent imaging? Sometimes, the read will specify in MM the encroachment of the various nerve structures of the spine. That description with the imaging can tell us quite a descriptive story --- though few of us are doctors -- it will help us understand the severity.

How are you managing your pain? What are your pain levels (1-10)? How is the condition negatively impacting your health?
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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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  #3  
Old 06-06-2014, 01:02 PM
Deemzee Deemzee is offline
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Hi Harrison,

Firstly, you're a saint for creating this site. I think I speak for a lot of people going through this for whom this site has been an incredible boost and a profoundly helpful resource. Truly a calm in the storm...so thank you very very much.

The crazy thing with my condition is that I have little or no pain-- some numbness in hands and fingers (not always -- mainly pressure on pointers and thumbs), occasional "stingers" (sensitive spots in hands, fingers, arms, etc that are piercing but random), occassional intra-scapular soreness, and mild neck soreness and limitation. I can't look at fireworks without feeling 'bothered'... but not severe pain. At worst a 3 or 4 during the last three years. I'm barely impacted and can pretty much do everything but there is definite weakness looming and so guitar, gardening, jogging are not as easy... but still very doable. The rub is that I'm told I'm at severe risk for paralysis, bladder, bowels, etc because of the cord compression. Pain (for now, fingers crossed) is not really the issue. Without detailing it all (i've gotten many many opinions) I am opting to stay the course and not get surgery until "it's time". Many doctors I've seen would say that is foolish and that I need something done "before its too late" -- with the threat being that once something appears (loss of balance, bladder control, etc) that it cannot be repaired-- because it involves the spinal cord, it is permanent. A neurosurgeon I trust for a lot of reasons has advised me differently and feels that since this is a problem that has very slowly evolved over four decades (probably the result of a crash at age 12), he guesses that I have a very unique case and it won't 'arrive' so suddenly (unless, of course, I get run over by a bus, or some such thing). It appears for now that my body is tolerating what looks to be a rather severe compression. His advice is to go on living and if "it" comes, we'll have time to deal with it. Bottom line is that a 4-level fusion sucks too and is certainly no guaranteed "solution" any more than the risk of no-surgery right now. My question to all is: for those who have progressive Cord compression, what does the "progression" feel like? Where do you feel it? How did you "get worse"? What do doctors mean by "weakness", is it pain, soreness, or stiffness, limitations? Legs, knees, feet? Tingling, soreness, pain, dull, sharp?? I'm trying to wrap my head around "you'll know when" because I'm not sure I will. I'm curious to hear how it gets worse and what that feels like... and how "you know".

I've attached a still from an MRI and a Radiology report from last year.

Thanks again
Attached Images
File Type: jpg DEEMZEE MRI image 5-9-13.jpg (50.2 KB, 88 views)
Attached Files
File Type: pdf DEEMZEE MRI report 5-9-13.pdf (316.5 KB, 46 views)
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DEC 2010 -- 51 yrs old-- multiple problems with C3-C7 --kyphosis, stenosis, cord flattening that has slowly evolved from a fall at age 12-- not much pain yet but told to fuse 4 levels and looking for alternatives
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  #4  
Old 06-06-2014, 01:03 PM
drsober drsober is offline
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Smile Know when to say when!

Deemzee,
From my personal experience, knowing when is more related to severity of symptoms. I have lost strength in my arm and hand and my pain is progressing, so I know its time to act. Your doctor is probably saying that as your disease progresses, you will begin to experience increased pain and loss of function. If it is severe, you will need emergency surgery (ie: loss of bladder control or ability to stand or use arms,etc). If it is not life threatening stuff, like increased pain or weakness, you will know that you need to start considering surgery.
My experience with fusion at C5-7 is that I would never suggest it to someone else. Go with a disc replacement when the time comes.
Also, consider a second opinion from one of the worlds best surgeons--most of the Europeans do that evaluation by internet for free; and they have alot more experience with multilevel surgeries.
Best of luck!
__________________
Mid 2009: Herniated C3-4 and C5-C7
July 2010: ACDF C5-7 at Johns Hopkins
March 2011: Herniated C4-5 and C7-T1
October 2013: Herniated 2 lumbar discs
Now: Radiculopathy with hand atrophy and occasional back pain! Need ADR but UHC refuses to pay.
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  #5  
Old 06-06-2014, 06:13 PM
drewrad drewrad is offline
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There are those who have sudden major compression due to an acute incident, the pain of which is on a magnitude several times over others who have a more progressive nature of structural deterioration over the course of time. It is my belief that the latter experience significant stiffness and lack of ROM, but in terms of radicular pain it is much more limited due to the cord still being able to navigate the structures.

You can have two backs(or necks) with almost identical MRIs, but because one protrusion is 1.5mm to the left of another's, his pain is intolerable while the other's is barely noticeable. The protrusion size is the same. You can even have a protrusion that is massive but the nerve root around it doesn't feel it because the nerve is not entrapped due to the fact that it is encased within adipose tissue(fat) which allows it to glide with ease, like foam packing peanuts protecting shipping contents.

Each case is unique which is why VAS scoring, which are subjective, are used to determine course of action versus images alone.
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Weightlifter since 12 years old, now mid-40's and figuring out this wasn't such a good idea.

Chronic back pain started in 2010 while shrugging weights that a 40 yr. old shouldn't even try.

MRI in 2012 showing L4/L5, L5/S1 herniations and L2/L3 bulge.

L5/S1 taking on new shape, chronic sciatica, etc.

DEXA bone scan performed 5/7/14 showing mild osteopenia.

Surgery performed July 9th, 2014, Dr Clavel, hybrid three level lumbar.
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  #6  
Old 06-06-2014, 10:55 PM
NJ Gene NJ Gene is offline
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Deem,

I would get multiple opinions now Once you're paralyzed, no money in the world will improve your situation. I would send your MRI's to doctors in both the U.S. and Europe. I wouldn't necessarily rule out fusion. I respectably disagree with your advice Dr. Sober, not to consider fusion. I'm sorry you had a bad experience. I've had fusions at C/3-C/5 and L/3-L/5 and am doing quite well. I'm not pushing fusion either. However, both it as well as ADR should be considered.

Good luck!! My feeling is get opinions now. There's no time to wait.

Gene
__________________
Car Accident 2002 - Small Herniated Disc C3/C4
1998 Larger Herniation and Cervical Fusion C3/C4
2005 Herniation C4/C5 - 40 epidural steroid injections from Oct 2005, - Oct, 2007
2008 - Foraminotomy at C6/C7 on left side
Feb, 2010 - Cervical Fusion C4/C5
Dec, 2010 - Lumbar Fusion L3/L5
2013 - Bulge on C5/C6; herniation C6/C7 right side
Mar 26, 2013 - Foraminotomy at C6/C7 on right side
May 5, 2015 - ADR with Dr Blumenthal of TBI for C5/C6 using Mobi-C
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  #7  
Old 06-06-2014, 11:03 PM
pittpete pittpete is offline
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Default

Pretty sure moderate to severe central canal stenosis contradicts ADR.
If the stenosis is bone and not disc how does ADR help?
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Born 1970/1995-Hurt at work/1996-Right disc fragment L4-L5 discectomy-On/off back pain,no serious leg pain until/2007-Right herniation L5-S1,recurrent small herniation at L4-L5 with unbearable leg pain/6/08 discectomy L5-S1/leg pain relieved/occaisional mechanical pain/2012-Cymblata 60 mg,occasional aleve/2014-LB pain not debilitating but chronic,Rhizotomy relieves facet pain on right side/2015-L4-S1 facets shot/4/15 PLIF L4-S1 with facectomy
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  #8  
Old 06-07-2014, 01:34 PM
annapurna annapurna is offline
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It would depend on why you have stenosis. If the stenosis was in response to a degenerated disk leading to instability and thus bone growth as the body seeks a way to stabilize, an ADR might be beneficial.
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Laura - L5S1 Charitee
C5/6 and 6/7 Prodisc C
Facet problems L4-S1
Knee, Shoulder, Toe, Finger, Elbow Problems

Jim - no spine problem but lots of other fun medical challenges

"There are many Annapurnas in the lives of men" Maurice Herzog
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  #9  
Old 06-09-2014, 09:51 PM
Devo Devo is offline
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I have the same type of thing. Had been putting it off in hopes that FDA would catch up with me. I was in a restaurant a few days ago and a woman backed in to me rather abruptly and now I am having some balance problems. Hope it clears up. My advice is don't wait too long. I've been reading that with this type of cord compression, symptoms can continue to progress even after decompression. I will be biting the bullet soon. Not sure who with. Probably Lauryssen in Switzerland.
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Bad car accident '92
Advised to fuse, I refused.
2004 Dove into pool and got some serious symptoms.
MRI showed signal change in cord. Steroids cooled it down. Have been offered a fusion a dozen times.
Still refuse to fuse.
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  #10  
Old 06-10-2014, 01:12 PM
Deemzee Deemzee is offline
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Sorry to hear, devo, and yeah...it's all so nightmarish. I wish it were more predictable, more definitive. The twist for me is that right now, for the most part, I feel very good. Almost 100% I know a lot of you are experiencing terrible pain and I don't mean to be insensitive to your experience but for me, the idea of doing 4 levels (four levels!) preemptively when I feel as good as I do is just so hard to fathom; that I'll consciously choose to go from almost nothing in a relatively unaffected life to one of short or long-term pain, into the great unknown with the potential for substantial permanent life-alteration, is unfathomable. I feel I need an obvious sign... but it might be that waiting to feel 'the sign' might be too late. And the idea that symptoms can continue after compression is a new ugly wrinkle. I hadn't heard that, but then again I've heard many contradicting opinions from the best doctors around, which makes it all the more unsettling and unknowable. Like all of us, I've had to become a self-advocating spinal expert...the stakes couldn't be higher... and I'm a film editor?! It's scary. I do think Drewrad is correct that the symptoms from two identical MRI's, two different patients, can be very very different. I'm certainly proof of it because the reactions to my MRI have run from "you've got time" to "absolutely horrible" and 2-Level ADR to a 4-Level fusion to everything in-between-- and these are opinions from over a dozen of the world's best: US, Europe, South America. That said, I'm still very interested to hear about the specifics of one's symptoms that either caused, or are leading to, a surgical decision. I'm just not sure that what I'm feeling now warrants "the ultimate concern" or if I'm just being paranoid. I realize I have reason to be paranoid, mind you, but I'm willing to risk it somewhat, given the advice I've been given by my chosen doctor. Risk is relative, and unforeseeables notwithstanding...I just want to get a clear picture of what any of you have used as your benchmark for action.
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DEC 2010 -- 51 yrs old-- multiple problems with C3-C7 --kyphosis, stenosis, cord flattening that has slowly evolved from a fall at age 12-- not much pain yet but told to fuse 4 levels and looking for alternatives
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