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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 05-03-2016, 09:12 PM
Daisy's Avatar
Daisy Daisy is offline
Junior Member
 
Join Date: Apr 2016
Posts: 12
Default Introduction and Advice

Hello my name is Stephanie and I live on Vancouver Island in British Columbia.

I have Internal Disc Disruption (IDD) and I am desperate to find someone else with this diagnosis who has experienced success with ADR. Unfortunately IDD does not show up on an MRI as the issue is actually inside the disc. The diagnosis is given after a process of elimination.

I am severely disabled. I cannot sit, walk, or drive. I am largely housebound. So I am pretty desperate at this point and seriously considering ADR with Dr. Bertagnoli. I just have to get an MRI and send it to him in order to have him assess. I am terrified to hear him say because he can't see it on an MRI that he won't operate.

Anyways I am happy to be on this site and look forward to learning more about ADR.

Kind Regards,
Steph aka Daisy
__________________
_______________________________________
41 years old
Diagnosed with "Internal Disc Disruption"
therefore NO leg pain and no issues show on MRI
VERY disabled...unable to drive, sit, or walk.
Spend life horizontal.
Tried all therapies including
prolotherapy and platelet rich plasma injections.
No surgeries.
No medications.
Chronic candida for over 10 years.
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  #2  
Old 05-03-2016, 10:43 PM
Disc replacement 2015 Disc replacement 2015 is offline
Senior Member
 
Join Date: Dec 2015
Posts: 150
Default

Welcome to the forum. Although I don't have your condition, my symptoms were weighted heavily along with the MRI. Good luck finding a path that will fit for you.
__________________
Canadian but not into hockey (even as a woman I'm a shame to the country lol).
Sporadic back problems for yrs.
Severe issues 2013. degenerative disc disease 2013, disc protrusion, mild stenosis. Epidural steroid injections, chiro, massage, accupuncture, too many meds to list, Naturopath, physio, occupational therapy, kinesiologist, counselling...
M6 Artificial disc replacement @l5-s1 Nov 2015, in Canada
June 2016 - still struggling...Physio, accupuncture, massage, counselling...
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  #3  
Old 05-04-2016, 02:01 AM
scoop302's Avatar
scoop302 scoop302 is offline
Senior Member
 
Join Date: Oct 2012
Posts: 193
Default

Welcome, and sorry to hear about your pain. Although MRI's are the first form of submission, most dr's want x ray's with range of motion. I went to Dr Clavel, and only after he saw x-rays and CT scans showing range of motion would he give a diagnosis. I even had to do one of the views over because it didn't show exactly what he was looking for. It was kind of a pain, but in the long run, definitely worth it.
__________________
1979 car accident: rear ended
1980 ACDF C4-5
4/8/11 stopped, hit again
3 epidurals, PT, 2 MRI's,etc.
scheduled 3 times for C5-6, 6-7 fusion,
plus laminectomy at C3-4, and C 7, advised to do Bilateral lamino-foraminotomy C5-6, C6-7,a Percutaneous Discectomy L4 -L5
7/14 RFA on L3 to L5 (awake, local only)
C5-6,6-7 M-6 ADR with Dr. Clavel 9/17/14,
12/7/15 RFA L2-S1, Facet injections C2-7
6/3/16 RFA L2-S1, epidural L4,5, 8/26/16 RFA C1-7
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  #4  
Old 05-04-2016, 10:47 AM
Stonewall_Boris Stonewall_Boris is offline
Senior Member
 
Join Date: Feb 2013
Posts: 547
Default

Hi Daisy,

Sorry to hear about your condition. I noticed in your sig that you did Prolotherapy, do you mind me asking the doctors name?
Also when you get your MRI you might want to solicit more doctors. I did 6, 3 overseas and 3 in the US. I received 5 responses and it was unanimous that L3-S1 needed surgery. It was a relief that I got that consensus. The next part was to narrow down that list and select the surgeon.
Good luck
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  #5  
Old 05-04-2016, 12:36 PM
FutureRobot FutureRobot is offline
Senior Member
 
Join Date: Jan 2016
Posts: 107
Default

What about a discogram?
__________________
HIZ tear at l5 s1 with mild disc height reduction and mild dehydration.
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  #6  
Old 05-04-2016, 02:58 PM
twowheelyankee twowheelyankee is offline
Junior Member
 
Join Date: Apr 2013
Posts: 28
Default Multiple Opinions

I agree with the "Stone". get multiple opinions because my experience with the Dr. Bertagnoli US contact was not pleasant, while Dr. Zeegers was probably one of the best doctors I had the pleasure of directly communicating with. I am not even sure Dr. B reviewed my files. Tim, his US handler, made so many mistakes, indicated I was a candidate for a Cervical ADR (Oh by the way, I have a single Level issue at L4/5. haha). This does not say anything about Dr. B's ability, just the process for US patients.

Since your case is unique a few opinions may be necessary. Just make sure you are not just searching for a doctor to say Yes to ADR. It needs to be the correct solution to your diagnosis.

Jim
__________________
8 mm A-P herniation with annular tear at L4/L5
Initial Injury 2004
Chiro, 14+ Epidural Injections, PT
ADR insurance appeal won in 2013, delayed surgery
2016 pain is now affecting quality of life. Contemplating ADR surgery again.

2016 delayed surgery again due to successful pain management with meds.
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  #7  
Old 05-04-2016, 07:58 PM
Harrison's Avatar
Harrison Harrison is offline
Administrator
 
Join Date: Oct 2004
Posts: 7,010
Default

Hello and welcome.

If I could wave my magic wand, I would find a pain mgt doc or interventional radiologist for you -- to extract a small sample from the disc nucleus and use PCR and culturing to screen for microbial infection. Your diagnosis is unusual, but it could suggest a pathology that involves lesion or infection.

Pls see this multipage topic on this subject:

http://www.adrsupport.org/forums/showthread.php?t=9218

And note this credible study on how many patients benefited from antibiotics:

http://www.adrsupport.org/forums/sho...tibiotic+study


But could it be simply an annular tear? Maybe. See:

http://www.chirogeek.com/IDD%20Page/IDD.html

If it’s an annular tear, fixes such as fibrin have been used to “cement” and seal the annular fissure.
__________________
"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
Donate www.arthropatient.org/about/donate
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  #8  
Old 05-04-2016, 09:43 PM
Fathub's Avatar
Fathub Fathub is offline
Senior Member
 
Join Date: Jan 2016
Posts: 156
Default

Daisy,
I'm the guy you talked to in Duncan......
I have a business colleague in Victoria that had horrific lumbar spine pain and he was on pretty much every heavy opiate going. He finally after a long, long list of frustrating tests etc had a biopsy to remove tissue from the affected/infected area and they built a signature genetic culture and now for 6 weeks/3X day he injects the 'vaccine' back in to an IV that is fed in right near his heart. He had less than a week last Saturday when I talked to him and he said it was the first time he's slept over 4 hours and was drastically reduced in lower lumbar pain.

I think that biofilm issues and arthritis issues are really very important to look into. Try the Tart Cherry juice too......

Call me again and I'll dig up more information from John....
__________________
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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  #9  
Old 05-04-2016, 10:53 PM
Jonesie13 Jonesie13 is offline
Senior Member
 
Join Date: Nov 2015
Posts: 129
Default

Hi Daisy,

So sorry to hear about the pain you are in. I am currently in Calgary recovering from surgery but will be heading to my second home on Vancouver Island the end of May. I'd be happy to talk to you or meet re ADR surgery if you are interested PM me some time.
__________________
2011 - onset of lower back pain during hot yoga
2011 - 2013 Treated with massages, chiro and physio - pain getting progressively worse
2013 - Xrays normal
Dec 2013 - MRI showed moderate DDD @ L5/S1 - modic type 1 endplate changes - remaining disks well preserved
Jun 2014 - became patient at Caleo clinic
Jan 2015 - first consult with surgeon
May 3, 2016 - L5/S1 - M6 - ADR in Canada (Calgary, Alberta)
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  #10  
Old 05-05-2016, 09:02 AM
Daisy's Avatar
Daisy Daisy is offline
Junior Member
 
Join Date: Apr 2016
Posts: 12
Default

Quote:
Originally Posted by Disc replacement 2015 View Post
Welcome to the forum. Although I don't have your condition, my symptoms were weighted heavily along with the MRI. Good luck finding a path that will fit for you.
Thank you.
__________________
_______________________________________
41 years old
Diagnosed with "Internal Disc Disruption"
therefore NO leg pain and no issues show on MRI
VERY disabled...unable to drive, sit, or walk.
Spend life horizontal.
Tried all therapies including
prolotherapy and platelet rich plasma injections.
No surgeries.
No medications.
Chronic candida for over 10 years.
Reply With Quote
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