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  #41  
Old 11-11-2016, 11:37 AM
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Fathub Fathub is offline
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Quote:
Originally Posted by JinSong View Post
Hey folks, it's meeee again. Not sure if replying to my old, original thread is the best place to put this, but I thought I'd start here. So much has changed since I first posted here...getting close to a full year ago. Wow.

Welp, I lost my appeals for an ADR last spring and had a C5/6 ACDF back in March. Since then, life has been AWFUL. Nothing has improved. I've got migraines, constant spasms, my old symptoms never resolved, and now I've got all those new issues. I'm seeing neurologists, doing physical therapy, on every drug known to man, and I've had every injection procedure out there (a bit of hyperbole, but seriously, I'm getting to the point where I've exhausted my options).

Meanwhile, I've got my own neurosurgeon telling me my pain has nothing to do with the ACDF surgery, and everything looks fine, other than my oversized graft and incomplete fusion. Yeah. Right. These problems just "magically" appeared after I had major surgery and never resolved. No connection at all.

I've been so depressed from the constant pain and the total disruption of my life and finances that this has caused, I've seriously been considering suicide, and I even "practiced" a few times. I've been ready to just say goodbye to this all.

Then a friend of mine poked at me and said that I needed to start talking to other surgeons for opinions since you know, surgeons have something of a biased opinion of their own work. As you can see from my signature probably, besides C5/6 which is currently fused (well not really--the graft's not taking), I've got other herniations in there. I need to update my signature because I'm the ripe old age of 33 now, ha.

Anyway, someone told me to send my imaging and history to Dr. Kenneth Light in San Francisco to see what he had to say about my case, since he's one of the people in the country that specializes in revising fusions to ADRs. I can't afford to go to Europe, but I live in Arizona, and I have friends in San Francisco, so doing surgery there wouldn't be impossible...and miraculously he's on my insurance plan.

So he tells me to send in my materials and he offered to review them for free, which I thought was quite generous. I figured he'd get back to me and say sorry Charlie, everything looks structrually fine (as my surgeon keeps saying). Not so much. He says at this point, 8 months post-op, the amount of fusion I've got in my graft is minimal, and probably contributing to all my pain. As well, there's a high risk of a non-union (aka failed fusion). My surgeon keeps claiming I'm fine, but he's actually been using the post-laminectomy syndrome/failed fusion CPT diagnosis codes on my paperwork. I know you can't technically call it failed until you're a year post-op, but in any event, things aren't looking promising there. In addition, he thinks my C4/5 now looks bad enough to be contributing to my pain as well. I thought I'd get like...I don't know a few years out of this stupid fusion before succumbing to ASD, but I guess not. I freaked out for a second, because the prospect of a 2-level fusion and a revision surgery, meaning two big surgeries within the same year was terrifying.

Then he says to me he'd revise my 1-level fusion into a 2-level ADR. THAT'S WHAT I WANTED IN THE FIRST PLACE. I know I need to get my expectations in check because there are so many variables here to consider, insurance and financing not being the least of my concerns. But literally nearly gun in my hand (not an actual gun...but things to end my life) were laid out on my counter when I got that message. Just the idea that I might have hope of SOME improvement in the hell I've been living in for the last 8 months--probably only those of you on here who have lived through the same pain and feelings can understand.

And now I have questions. Can you help me? Has anyone here had surgery with Dr. Light? I know there's a separate revision forum, but I haven't actually had the revision surgery, so I wasn't sure if I should post in there. Are there other U.S. based revision specialists I should be looking at before diving in with Dr. Light?

ANY insight would be so deeply appreciated.

I would HIGHLY recommend you send all of your past and current information to Dr Bertagnoli and/or Tim in USA (his agent). He's a medical magician and takes on a ton of these types of cases and basically pulls all of them out of the hat……PM me and I'll help you out JinSong…please…..
FYI, 2 years ago I was exactly where your at and ensured my life insurance would pay out Brenda as I knew nothing of the possibilities from GmbH. It's Remembrance Day up here in Canada but I'm available all the time….
__________________
Dec 1/15 - 3 level ADR from S1/L3 c/w 360 mobility preservation at L3/L4 for Spondylolisthesis done by Dr. Bertagnoli in Bogen GmbH.
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  #42  
Old 11-12-2016, 07:14 AM
JinSong JinSong is offline
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Join Date: Jan 2016
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He's the one in Germany that uses the Pro-disc, right? I'm not wild about the Pro-Disc still, but that's the least of my issues: there's no way I can pay for a surgery out of pocket. I'm a PhD student, an indentured servant basically: I make 13k or so a year, and since I'm behind on finishing because of my protracted recovery, I might not have ANY job or health insurance in the spring. On that tiny salary, all of my money has already gone towards all these medical procedures. I don't even have the money to fly to Germany, let alone pay for a 50-100k medical procedure out of pocket. That's the sad thing I realized last night after doing some digging about Dr. Light: same problem. In the end, I'll probably lose my insurance fight, and his fees are 70K and up. There's no way I can pay that. Once again, I'm screwed

For just a minute, I was so hopeful.

I guess......what else is left?
__________________
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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  #43  
Old 11-12-2016, 10:09 AM
phillyjoe phillyjoe is offline
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Posts: 286
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are you an American citizen? Have you applied for social security disability? medicaid? Obama care at your low income?
__________________
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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  #44  
Old 11-13-2016, 12:08 AM
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Fathub Fathub is offline
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Quote:
Originally Posted by JinSong View Post
He's the one in Germany that uses the Pro-disc, right? I'm not wild about the Pro-Disc still, but that's the least of my issues: there's no way I can pay for a surgery out of pocket. I'm a PhD student, an indentured servant basically: I make 13k or so a year, and since I'm behind on finishing because of my protracted recovery, I might not have ANY job or health insurance in the spring. On that tiny salary, all of my money has already gone towards all these medical procedures. I don't even have the money to fly to Germany, let alone pay for a 50-100k medical procedure out of pocket. That's the sad thing I realized last night after doing some digging about Dr. Light: same problem. In the end, I'll probably lose my insurance fight, and his fees are 70K and up. There's no way I can pay that. Once again, I'm screwed

For just a minute, I was so hopeful.

I guess......what else is left?
Don't get into projection......we all rolled up into the fetal position for a few days and then started walking through the minefield as you will do too with the help of others who've lived and had to negotiate the same issues. It's #$@% scary......do doubt but you will get your life back. You may have to delay parts of your life.....BUT you will get your life back and your piece of mind. Family, friends and loans are the way we all did it and then went back into our lives 100X more productive, happy and hopeful than we had been for years....

There's not a helluva lot wrong with the ProDisc and Bertagnoli has been doing this gig for a very long time and takes on very difficult cases so keep an open mind, send your information to Clavel as well as he also has a very good reputation. There are others in the USA but I would not know or care to even try to know them with the astronomical costs and profit only driven philosophy.
__________________
Dec 1/15 - 3 level ADR from S1/L3 c/w 360 mobility preservation at L3/L4 for Spondylolisthesis done by Dr. Bertagnoli in Bogen GmbH.
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  #45  
Old 11-13-2016, 09:15 PM
JinSong JinSong is offline
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Quote:
Originally Posted by phillyjoe View Post
are you an American citizen? Have you applied for social security disability? medicaid? Obama care at your low income?
I'm too poor to qualify for Obamacare. At least until December I have a job, but until then I can't qualify for disability since I'm freaking *dying* trying to do it, but I'm "employed" for the moment. I also don't qualify for Medicaid because one part of my crappy job is that in lieu of more salary I also get crappy student health insurance too. Problem is, even if I get Medicaid, that surgeon and overseas surgeons don't take Medicaid. Still screwed.
__________________
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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  #46  
Old 11-13-2016, 09:23 PM
JinSong JinSong is offline
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Join Date: Jan 2016
Posts: 57
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Quote:
Originally Posted by Fathub View Post
Don't get into projection......we all rolled up into the fetal position for a few days and then started walking through the minefield as you will do too with the help of others who've lived and had to negotiate the same issues. It's #$@% scary......do doubt but you will get your life back. You may have to delay parts of your life.....BUT you will get your life back and your piece of mind. Family, friends and loans are the way we all did it and then went back into our lives 100X more productive, happy and hopeful than we had been for years....

There's not a helluva lot wrong with the ProDisc and Bertagnoli has been doing this gig for a very long time and takes on very difficult cases so keep an open mind, send your information to Clavel as well as he also has a very good reputation. There are others in the USA but I would not know or care to even try to know them with the astronomical costs and profit only driven philosophy.
Ohhhh yeah I've been metaphorically rolled up in the fetal position for over 8 months because this stupid fusion never healed (and I fell down stairs, etc). I'm IN the minefield already. I mourned hardcore when I lost my fight for an ADR, but hoped the ACDF would at least hold me for a few years. Nope. Just more misery. Not happy, hopeful, or productive.

I mean, I could send my imaging to Clavel and/or Bertagnoli, but for what good? I can't afford them. Those friends and family? I don't have them. My parents were violent drug addicts. My friends are poor grad students that moved away already because I was supposed to graduate and move on too, but I'm stuck here.

I'm alone.
__________________
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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  #47  
Old 11-13-2016, 09:36 PM
annapurna annapurna is offline
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Join Date: Dec 2004
Posts: 1,668
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I've been thinking about what we could offer for advice. The problem that I see is that finding ways to travel cheaply is relatively easy; finding ways to pay for medical care you can't afford outright isn't.

The only thought I had was to check into Dr. Yue in Phoenix to get a second opinion. Your profile says you're in Arizona so I'm hoping that you're realistically close to Phoenix. Yue specializes in endoscopic disectomies but he's world-class in that. He might, if approached ahead of time, be willing to have you come in to review your situation and serve as a second opinion and source of guidance. Rarely will you ever find a doctor willing to say another doctor screwed up, so I wouldn't even try to ask that kind of question, but he might weigh in on what options you have from here.

Also, there's an off chance that the lack of fusion was affected by outstanding medical issues on your part. It might be worthwhile trying to get a general physical and blood work-up to see if anything stands out. If Yue is willing to see you, you might talk with him about what to ask for so you don't get the common brush-off you'd get from the standard doc-in-a-box.
__________________
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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  #48  
Old 11-13-2016, 09:50 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
I've been thinking about what we could offer for advice. The problem that I see is that finding ways to travel cheaply is relatively easy; finding ways to pay for medical care you can't afford outright isn't.

The only thought I had was to check into Dr. Yue in Phoenix to get a second opinion. Your profile says you're in Arizona so I'm hoping that you're realistically close to Phoenix. Yue specializes in endoscopic disectomies but he's world-class in that. He might, if approached ahead of time, be willing to have you come in to review your situation and serve as a second opinion and source of guidance. Rarely will you ever find a doctor willing to say another doctor screwed up, so I wouldn't even try to ask that kind of question, but he might weigh in on what options you have from here.

Also, there's an off chance that the lack of fusion was affected by outstanding medical issues on your part. It might be worthwhile trying to get a general physical and blood work-up to see if anything stands out. If Yue is willing to see you, you might talk with him about what to ask for so you don't get the common brush-off you'd get from the standard doc-in-a-box.
Thanks for trying to think of ideas--I do live in reach of Phoenix, so if he's on my insurance plan (or if he'd be willing to just review things for free), then that would be feasible. I guess the issue is...with anyone else, my only other recourse would be revising what I've got into a 2-level fusion, which, to be perfectly honest, doesn't sound like any better of an option. It's just everything you fear with an ACDF: endless surgeries, one level goes after another, and my C3/4 is already herniated too. If C4/5 is fused, C3/4 is next on the chopping block.

I actually don't think my current neurosurgeon screwed up: I'm just not fusing, and the other disc above it was already herniated. It just did what ACDFs are famous for: adjacent segment disease, which isn't a fault of surgical technique.

Although I can't be totally sure, as far as I knew I don't have any other health issues besides the migraines caused by the surgery. I had to do a really thorough physical before my NS would even do surgery, so: full bloodwork panel, EKG, chest x-rays, bone density tests, all that stuff. Since then I've had issues with migraines so I've been in the hospital and back and forth to my primary care really frequently since then. I had a potentially bad reaction to one of the migraine drugs, so I just had another full blood panel, and really fancy cardiac tests (nuclear PET scan stress test, echocardiogram, more ekgs, repeat chest xray)--everything seems normal other than my damn spine and anything related to it. Even rechecked some other things like rheumatology panels and had a brain MRI to rule out MS just in case too. Not saying there might be something they're missing, but my multiple doctors seem to think I'm okay otherwise. I almost wish they'd find something wrong so it'd be fixable...
__________________
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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  #49  
Old 11-13-2016, 11:15 PM
JinSong JinSong is offline
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Join Date: Jan 2016
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Bummer--Yeung's not on my insurance and they charge just for an MRI review. Thanks for the suggestion, though
__________________
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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  #50  
Old 11-14-2016, 07:04 PM
annapurna annapurna is offline
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Posts: 1,668
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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.
__________________
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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