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  #51  
Old 11-14-2016, 09:55 PM
phillyjoe phillyjoe is offline
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Join Date: Jan 2013
Posts: 286
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I am trying to remember in my case, but I believe that Clavel provided his report and recommendations without charge, and then only a charge for the first skype. I also recall that I could have an additional skype without further charge if I had follow up questions, which I didn't due to his attention to detail on the first one, and its substantial length.

Fusion isn't the end of the world, but I would certainly be worried that a second fusion would have no better bone growth than the first one, unless the cause for the non union is first identified. Is this simply a question of needing more time, forteo, or growth stimulation?
__________________
Pre Surgery:
C3-C4:Mild disc osteophytes. Mild-moderate right facet arthrosis. Mild right foraminal stenosis.
C4-C5:Midline central disc protrusion, significant. Mild canal stenosis.
C5-C6:Moderate disc osteophytes. Mild-moderate canal stenosis. Moderate-severe bilateral foraminal stenosis.
C6-C-7:Mild-moderate disc osteophytes. Mild canal stenosis. Moderate left and moderate-severe right foraminal stenosis.
June 29,2016-3 level M6 (C4-C7) Dr. Clavel Barcelona
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  #52  
Old 11-14-2016, 11:08 PM
JinSong JinSong is offline
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Join Date: Jan 2016
Posts: 57
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Quote:
Originally Posted by annapurna View Post
Have you asked around about getting one of the European surgeons who offer film and condition reviews for a fee to look at your stuff? Some of them charge quite a bit but I thought there were some that only charged a nominal fee. You could go to one with a free review but I don't know if you'd get the quality of review you need if you were honest with them about your inability to seek surgery with them.
I mean I suppose I could, but I could also get more second opinions from local neurosurgeons on my insurance--I think I've established it's messed up. Sending my films to surgeons who I ultimately actually can't have surgery with just sounds depressing. That's the exact situation I'm in now. With relative certainty, my fusion's not doing well, and I know my other discs are going, but there's nothing I can do about it because I'm poor and my health insurance sucks.
__________________
33-year-old female
C3/4 Disc bulge and bone spurs
C4/5 Disc protrusion
C5/6 Disc extrusion with cord compression, bone spurs due to uncovertebral arthropathy, right foraminal stenosis and bilateral nerve compression.
C6/7 disc protrusion

Lost appeals for ADR. C5-6 ACDF on 3/10/16
ACDF never fused, and ACDF accelerated damage of the other levels. Someone please kill me.
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  #53  
Old 11-14-2016, 11:16 PM
JinSong JinSong is offline
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Join Date: Jan 2016
Posts: 57
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Quote:
Originally Posted by phillyjoe View Post
I am trying to remember in my case, but I believe that Clavel provided his report and recommendations without charge, and then only a charge for the first skype. I also recall that I could have an additional skype without further charge if I had follow up questions, which I didn't due to his attention to detail on the first one, and its substantial length.

Fusion isn't the end of the world, but I would certainly be worried that a second fusion would have no better bone growth than the first one, unless the cause for the non union is first identified. Is this simply a question of needing more time, forteo, or growth stimulation?
The consultation fee isn't the biggest issue: the real problem is if I get an opinion from one of these surgeons, how am I going to afford surgery with them? If I can't have them fix the problem, then what's the point? I already know it's gone wrong. What I need is someone that can fix this mess using only the power of my crappy insurance.

And I'm not even worried that a second fusion won't take; I'm worried that a second fusion will 1. Just cause more pain and 2. It's just the next step in the full destruction of my neck. If C5/6 is the fused one, C3/4, C4/5, and C6/7 are already herniated. C6/7 is in danger already, C4/5 already succumbed to ASD, and if I fuse C4/5, then C3/4 will be the next to go. I'm freaking 33. I'd say fusion isn't the end of the world, but it definitely looks like it's going to be the end of my life. It's certainly destroyed my life as I know it already, and going through this all again, within the span of a year, knowing it's just going to create even more armageddon in my spine? I think I'd rather take the exit ramp.
__________________
33-year-old female
C3/4 Disc bulge and bone spurs
C4/5 Disc protrusion
C5/6 Disc extrusion with cord compression, bone spurs due to uncovertebral arthropathy, right foraminal stenosis and bilateral nerve compression.
C6/7 disc protrusion

Lost appeals for ADR. C5-6 ACDF on 3/10/16
ACDF never fused, and ACDF accelerated damage of the other levels. Someone please kill me.
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  #54  
Old 11-15-2016, 12:08 AM
annapurna annapurna is offline
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Join Date: Dec 2004
Posts: 1,668
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How close to finishing your doctorate are you and what is your expected earning capability after you finish it and work full-time instead of working and attending school? You don't need to share that information with the community but looking at it that way, you might decide that you need to buy a few functional years and deal with what falls out of adjacent segment problems in the future when you can afford better treatment. For that matter, there are options for forestalling ADS for a while.

For that matter, you might need to rethink what you're getting your doctorate in. A PhD in Modern Dance isn't likely to be a good route for you now. On a more realistic note, something where you're constantly at a chalk or white board with your hands over your head writing and teaching could easily aggravate a healing cervical spine. The second is speculation that your body is likely to tell you more about. The first is hyperbole and sarcasm, but I have no doubt you spotted that already.

I think everyone here understands the desire to "take the exit ramp" even though some will regard it as drama rather than fear and despair talking. All I can say is that don't start changing lanes until you're sure the road is taking you to a place you don't want to go.

To buy time, you might check into disectomy for C45 and 67. Yes, it will weaken those disks and enhance the chance you'd need something in the future but it'll buy time to, as Laura's PhD advisor phrased it, "speculate and graduate." Alternatively, the prolotherapist we see occasionally outside of Salt Lake City also occasionally works out of Phoenix. That's almost never covered by insurance so you'd need to really take time talking through what he can and can't do for C45 and C67 to be sure it's worth the costs but your out of pocket cost for his treatments are likely to be on the order of your copays for surgery for those levels.

The ideas I'm suggesting are out of the box ideas that are really aimed to trigger thoughts or suggest venues for you to research. I'd expect that most of them aren't going to work for one reason or another so don't give up because we haven't found something that can help yet.
__________________
Laura - L5S1 Charitee
C5/6 and 6/7 Prodisc C
Facet problems L4-S1
General joint hypermobility

Jim - C4/5, C5/6, L4/5 disk bulges and facet damage, L4/5 disk tears, currently using regenerative medicine to address

"There are many Annapurnas in the lives of men" Maurice Herzog
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  #55  
Old 11-15-2016, 04:46 AM
JinSong JinSong is offline
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Join Date: Jan 2016
Posts: 57
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Quote:
Originally Posted by annapurna View Post
How close to finishing your doctorate are you and what is your expected earning capability after you finish it and work full-time instead of working and attending school? You don't need to share that information with the community but looking at it that way, you might decide that you need to buy a few functional years and deal with what falls out of adjacent segment problems in the future when you can afford better treatment. For that matter, there are options for forestalling ADS for a while.

For that matter, you might need to rethink what you're getting your doctorate in. A PhD in Modern Dance isn't likely to be a good route for you now. On a more realistic note, something where you're constantly at a chalk or white board with your hands over your head writing and teaching could easily aggravate a healing cervical spine. The second is speculation that your body is likely to tell you more about. The first is hyperbole and sarcasm, but I have no doubt you spotted that already.

I think everyone here understands the desire to "take the exit ramp" even though some will regard it as drama rather than fear and despair talking. All I can say is that don't start changing lanes until you're sure the road is taking you to a place you don't want to go.

To buy time, you might check into disectomy for C45 and 67. Yes, it will weaken those disks and enhance the chance you'd need something in the future but it'll buy time to, as Laura's PhD advisor phrased it, "speculate and graduate." Alternatively, the prolotherapist we see occasionally outside of Salt Lake City also occasionally works out of Phoenix. That's almost never covered by insurance so you'd need to really take time talking through what he can and can't do for C45 and C67 to be sure it's worth the costs but your out of pocket cost for his treatments are likely to be on the order of your copays for surgery for those levels.

The ideas I'm suggesting are out of the box ideas that are really aimed to trigger thoughts or suggest venues for you to research. I'd expect that most of them aren't going to work for one reason or another so don't give up because we haven't found something that can help yet.
No, I do really appreciate it, and I feel bad when I sound contrary when some option won't work, so sorry if my response sounds...exactly like you said, as though nothing will work. Like I would LOVE to go to Europe and have this train wreck fixed, but I don't have an extra 50-100k sitting around to do it with. Some weeks I don't even have money for food, so I feel like a lot of other people are just in different positions life. I can't take out a loan because I have no family or friends to cosign on something, and I'm just poor as hell and mainly alone.

And maybe it is dramatic, but still truthful: I metabolize drugs strangely, So I've...practiced, or tested, depending on your viewpoint. And I overdosed legitimately on accident once on bupropion, which was uncomfortable, but also ultimately (and obviously) ineffective. Lethal doses of all kinds of things do nothing to me, it turns out. I guess I'm saying I'm serious and not just stirring a drama pot (and I have a counselor, I have a psychiatrist, I'm on antidepressants...I'm doing the things). I just don't want to live like this. I want to fix this mess or nothing.

One of the problems is right now I'm not really functional enough to finish school, or get a job. I was right at the edge of finishing my PhD (I'm all but dissertation), and another clinical masters in (ha) psychotherapy of all things. I just needed the third of three internships finished, and my spine came along and screwed everything up. That six week recovery time is starting to balloon into 9 months, so that's kind of destroyed everything financially and educationally. I have the most flexible job basically right now, and I still barely am able to do it. I'm behind now and might get fired. So yeah...thinking about what the hell I can do now even, and what I can do in the future certainly isn't helping. It all looks pretty bleak from here, no matter how I slice it. I mean really, like you said, why even live if I've wasted my life on jobs and years of hard education I can't use anymore. I don't want to be a cripple my whole life that can't even work or do any of the things I enjoy because I can't afford surgery to fix myself.

I've actually met my max out of pocket now for my insurance, so my whole health budget went in there--no room for out of pocket costs like prolotherapy and that kind of stuff. (and no offense, but I thought prolotherapy didn't have a lot of clinical efficacy proved yet. I'm such a pin cushion volunteering for more experimental injections sounds bad) Discectomy I've been refused for before because I have some instability in my spine. Not enough to make me not a candidate for ADR, but enough that discectomy no one I've spoken with will do. It's all or nothing in my stupid little spine.

But I'm sure someone would happy to fuse the s$#t out of me, and my insurance company wouldn't mind either. Fuse the stupid thing all the way up until there's nothing left.

Thanks for helping me brainstorm. I'd love to find some solution that doesn't end with me in a box.
__________________
33-year-old female
C3/4 Disc bulge and bone spurs
C4/5 Disc protrusion
C5/6 Disc extrusion with cord compression, bone spurs due to uncovertebral arthropathy, right foraminal stenosis and bilateral nerve compression.
C6/7 disc protrusion

Lost appeals for ADR. C5-6 ACDF on 3/10/16
ACDF never fused, and ACDF accelerated damage of the other levels. Someone please kill me.
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  #56  
Old 11-15-2016, 09:58 AM
phillyjoe phillyjoe is offline
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Join Date: Jan 2013
Posts: 286
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Could you please tell us the symptoms you are currently experiencing? ASD can be managed, and the neck can be strengthened. The future might hold even better solutions for the neck (at least that is what I am hoping for, since my C2-3 and 3-4 are in still in bad shape even following ADRs). If you are currently having severe arm pain from what you are , I guess, calling a failed fusion, likely you should focus on that first. Why it happened, how to fix it. Who will fix it, in my humble opinion, comes next. Gather information. From any surgeon that will provide it without your budget. At least that is what I would do, and in fact did. Don't self defeat, fight back!
__________________
Pre Surgery:
C3-C4:Mild disc osteophytes. Mild-moderate right facet arthrosis. Mild right foraminal stenosis.
C4-C5:Midline central disc protrusion, significant. Mild canal stenosis.
C5-C6:Moderate disc osteophytes. Mild-moderate canal stenosis. Moderate-severe bilateral foraminal stenosis.
C6-C-7:Mild-moderate disc osteophytes. Mild canal stenosis. Moderate left and moderate-severe right foraminal stenosis.
June 29,2016-3 level M6 (C4-C7) Dr. Clavel Barcelona
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  #57  
Old 11-15-2016, 11:35 PM
JinSong JinSong is offline
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Join Date: Jan 2016
Posts: 57
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Quote:
Originally Posted by phillyjoe View Post
Could you please tell us the symptoms you are currently experiencing? ASD can be managed, and the neck can be strengthened. The future might hold even better solutions for the neck (at least that is what I am hoping for, since my C2-3 and 3-4 are in still in bad shape even following ADRs). If you are currently having severe arm pain from what you are , I guess, calling a failed fusion, likely you should focus on that first. Why it happened, how to fix it. Who will fix it, in my humble opinion, comes next. Gather information. From any surgeon that will provide it without your budget. At least that is what I would do, and in fact did. Don't self defeat, fight back!
It's the other surgeon calling it a failed fusion, and I know I have three other herniated discs, one of which the other surgeon claims is likely the cause of some of my pain. I don't really care where the pain is coming from, I just want it to freaking stop, and if nothing else, it was nice to have another surgeon validate that things in there are NOT right.

My arm pain is actually one of the least of my troubles, though it is bothersome. Essentially none of my pre-surgery problems resolved, so I still have all the radiculopathy pain in my arm and shoulder, and numbness in my fingers. My neurosurgeon says he thinks it's technically not radiculopathy from a crushed spinal nerve, but instead a result of damage from my spinal cord that probably won't heal: it was shaped like a banana at C5/6, according to him. And I've got weakness in my arms and so forth. That I could live with. But then I have new problems after the surgery: now I've got new weakness in my legs, and half of a foot that's paralyzed, which again, mostly just bothersome.

The most debilitating thing is that the night of surgery I had the worst migraine of my life, and ever since then, I've had a migraine. Every. Single. Goddamn.Day. I've seen neurologists, and everyone agrees it's from the muscle spasms in my neck and shoulders. Even my surgeon admitted it's all probably related to the huge graft cage he used (at least he did before--now he's changed his tune to CYA mode). As far as strengthening other things, I go to PT every week for that, if that's what you mean. Maybe it'll help in the long term, but now PT just makes everything worse. I hate it, but I do it just to say I'm doing it and I'm seriously trying everything. On top of that, I've tried a slew of other "conservative" measures to deal with the pain:

Epidural injections
Facet injections at C5/6
Medial Branch blocks 2x from C2-C5
Radiofrequency ablation from C2-C5
Ongoing rounds of trigger point injections
Occipital nerve blocks
Ongoing physical therapy, as I've said
Dry needling
Botox injections for migraines
Countless medications for pain, spasms, migraines, and neuropathy
Probably some other procedure I'm forgetting that involves jamming needles in some part of my body.

I've been fighting back, but I refuse to be crippled and homeless, and I'm running out of time. I can't be non-functional for years waiting for new solutions to arise. I need a solution now or I'm done for.
__________________
33-year-old female
C3/4 Disc bulge and bone spurs
C4/5 Disc protrusion
C5/6 Disc extrusion with cord compression, bone spurs due to uncovertebral arthropathy, right foraminal stenosis and bilateral nerve compression.
C6/7 disc protrusion

Lost appeals for ADR. C5-6 ACDF on 3/10/16
ACDF never fused, and ACDF accelerated damage of the other levels. Someone please kill me.
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  #58  
Old 11-16-2016, 11:43 AM
phillyjoe phillyjoe is offline
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Join Date: Jan 2013
Posts: 286
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yes, it sounds like you've had a lot done. But it is important to know the source of the pain. Fusions or ADR won't solve pain that is caused by facets. I know this personally right now. It also looks like you've had a lot done since the surgery? or was it all before? sometimes it takes quite awhile for things to calm down. I had headaches for a few weeks that were actually caused by my PT. They are gone now. Since my fall, and since I have been trying all kinds of PT and exercise, and muscle relaxers, and lyrica, etc, pain has shifted all around. Things seem to be getting much better recently, just as Clavel predicted. Now of course, my L4-5, and 5-S1 is giving me great pain down both legs. But that is nothing new.
__________________
Pre Surgery:
C3-C4:Mild disc osteophytes. Mild-moderate right facet arthrosis. Mild right foraminal stenosis.
C4-C5:Midline central disc protrusion, significant. Mild canal stenosis.
C5-C6:Moderate disc osteophytes. Mild-moderate canal stenosis. Moderate-severe bilateral foraminal stenosis.
C6-C-7:Mild-moderate disc osteophytes. Mild canal stenosis. Moderate left and moderate-severe right foraminal stenosis.
June 29,2016-3 level M6 (C4-C7) Dr. Clavel Barcelona
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  #59  
Old 11-16-2016, 05:23 PM
JinSong JinSong is offline
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Join Date: Jan 2016
Posts: 57
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Quote:
Originally Posted by phillyjoe View Post
yes, it sounds like you've had a lot done. But it is important to know the source of the pain. Fusions or ADR won't solve pain that is caused by facets. I know this personally right now. It also looks like you've had a lot done since the surgery? or was it all before? sometimes it takes quite awhile for things to calm down. I had headaches for a few weeks that were actually caused by my PT. They are gone now. Since my fall, and since I have been trying all kinds of PT and exercise, and muscle relaxers, and lyrica, etc, pain has shifted all around. Things seem to be getting much better recently, just as Clavel predicted. Now of course, my L4-5, and 5-S1 is giving me great pain down both legs. But that is nothing new.
With the exception of former rounds of PT and one epidural, all of that was done post-op, at the direction of my neurosurgeon, to try and deal with issues he claims were caused by the large graft he put in. My latest MRI and x-rays show my facet joints all look good--I had nerve abalations done from C2-C5 not because I had facet problems, but my neurosurgeon thought the oversized graft cage he'd put in there was putting extra stress on my facet joints around the fusion. RFA didn't do a damn thing but cause more pain, so that wasn't it.

PT does aggravate my migraines, but it doesn't cause them--this latest round I didn't start until a few months ago because my surgeon's weirdly conservative and wouldn't approve it. And I was just having so many lingering symptoms and procedures I think he was trying to wait for that to simmer down. Fine by me, I think PT is the devil, and now I'm just doing it to be "compliant." But I had a migraine the night I had surgery, and it never stopped--three neurologists agree the migraines are from my neck tension, so anything that increases that, increases my migraines. But my neck spasms NEVER stop, so...neither do my migraines.

I think the real issue is, nothing is going to heal on its own. I'm on Lyrica, opiates, muscle relaxers, topical EMLA cream, and dozen other things I've either failed or tried for pain or migraines in the past. I don't know what else is left, and neither does anyone else, other than fixing the mess that's in there.
__________________
33-year-old female
C3/4 Disc bulge and bone spurs
C4/5 Disc protrusion
C5/6 Disc extrusion with cord compression, bone spurs due to uncovertebral arthropathy, right foraminal stenosis and bilateral nerve compression.
C6/7 disc protrusion

Lost appeals for ADR. C5-6 ACDF on 3/10/16
ACDF never fused, and ACDF accelerated damage of the other levels. Someone please kill me.
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