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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 01-14-2020, 06:43 PM
star7 star7 is offline
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Join Date: Jan 2020
Posts: 2
Unhappy new member suffering 10yrs after C5-6 ADR

As I continue to look for help with failed hardware, C5-6 ADR, I thought I should also share my personal experiences in hopes to help anyone else going through this. I had Lumbar fusion L4-5 (July06), lumbar surgery to remove bone spurs (Feb07), Cervical disc replacement(Medtronic Prestige Aug 09).

I've been dealing with countless symptoms since 2014 from numbness tingling pain in legs, hips, pelvic, diaphragm, ribs, shoulders, digestive issues, dysphagia, chest pressure/pain. Bloodwork, colonoscopy, endoscopy and US have ruled out a lot scarey things. So I was told its fibromyalgia and we may never know whats causing the pain,I'll just have to live with it. I declined steroids and muscle relaxers. I had to fight for a MRI of spine and after all the back n forth I found that they had diagnosed me w/ scoliosis in 2008(but never told me) more recently diagnosed w/osteophytes complex in multiple areas, kyphosis, spodylolthesis &one of the screws in cervical disc replacement is coming loose.

I've been with the same HMO since i was born (50 yrs) and now they are making it difficult to get any kind of care. I was told by the surgeon who placed hardware in neck that "its not surgical", had to file a grievance to get a 2nd opinion, months later I see Dr who says hes "very worried about me", ADR needs to removed and fused together and the level below needs to be fused and the level above needs to be monitored. He asked if I had trouble swallowing, YES i said and also makes breathing difficult at times. I asked if the spine surgeries caused the kyphosis, scoliosis and spondylolthesis, he said "yes its possible".

I thought I finally found Dr who knew what i was feeling both physically and mentally. Weeks went by without hearing from anyone so I emailed and called to see what our next step was. No reply for almost 2 months. I then get a call from nurse who says (2nd opinion)Dr says Hardware looks excellent, no surgery necessary, just monitor. My point in sharing all these difficulties is please make sure you have a TEAM that will see you through the surgery process and post surgery. Don't let them tell you that digestive issues are not connected to your spine or its all in your head. If anyone has any suggestions or referrals it would be greatly appreciated. I'm in Northern CA but will travel anywhere if I can find a surgeon who can help me.
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I had Lumbar fusion L4-5 (07/06), lumbar surgery to remove bone spurs (02/07), Cervical disc replacement(Medtronic Prestige 08/09).
I found that they had diagnosed me w/ scoliosis in 2008(but never told me) more recently diagnosed w/osteophytes complex in multiple areas, kyphosis, spodylolthesis &one of the screws in cervical disc replacement is coming loose. Anyone else dealing with hardware failure and/or unexplained similiar symptoms
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  #2  
Old 01-18-2020, 06:24 AM
timsdeece timsdeece is offline
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Join Date: Sep 2018
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I read some stories in this group about Dr. Clavel in Barcelona taking on patients who had previously been declined elsewhere. I am unsure if he still does that. Personally I think, if you haven't done this already, you need to write down exactly what your symptoms are and where they are and see if they actually match up on a dermatome chart to your diseased spinal segments. You need to do this yourself, because no doctor is going to do it because they spend about ten seconds on every patient, even the best ones.
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  #3  
Old 01-18-2020, 02:56 PM
annapurna annapurna is offline
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Join Date: Dec 2004
Posts: 1,586
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To add to the dermatome chart, I'd suggest:


Metal allergy testing, particularly nickel, chromium and titanium. The latter is very rarely a bad problem but the first two have cropped up a bunch of times in discussions here. With a little effort you can find a company that will do this for you without the need for a doctor's orders


Flat x-ray flexion and extension x-rays of your c-spine to add to whatever imaging you've got already. You might be able to convince your local GP doc to do this for you as it's a pretty simple thing to do.


General bone density check. This one might also be something you could talk a local GP into as the subsidence is an indicator of possible osteoporosis.


With those three, you'd have a better chance at getting an idea of what's going on. Subsidence could be due to an allergic reaction or metallic wear particles, or it could be due to a general low bone density problem. Your diffuse symptoms could be due to too much time in pain and general inflammation or due to a systemic allergic reaction. With this information in hand, you're more likely to get a hearing from and engagement with a surgeon who's willing to work with you, though I agree an overseas surgeon might be the way to go.
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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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  #4  
Old 01-23-2020, 12:22 PM
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Harrison Harrison is offline
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Join Date: Oct 2004
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It sounds like you have not found the right doctor, someone that assesses your condition holistically. I'll PM 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
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