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  #1  
Old 10-04-2015, 08:08 AM
TomN TomN is offline
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Join Date: Sep 2015
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Default Instability Issues ???

Originally Posted by TomN
Hi Harrison,

Thanks for the welcome message!
I'm in a real bind. I have a relatively normal MRI with a bulge at C6/7 which was found after a car accident in December 2014. After 8 months of failed conservative treatments, I was told by a neurosurgeon (Penn Medicine) that I have Spinal Instability at C6 where C6 shifts backwards 5mm when my neck is in flexion. He said I need a fusion. My spine is being compressed at C6/7 which is why my hands and feet go numb when I look down. I then went back to LA to find a surgeon in LA to recover at home. I've seen several doctors who don't see the instability, including UCLA Spine.
Where would I find help on this site? Could you guide me and/or place this message to see if someone else had a similar problem?
Cheers,
Tom
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  #2  
Old 10-05-2015, 09:21 PM
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Harrison Harrison is offline
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Tom,

Sorry about your situation.

As I recall, this kind of spinal instability may be a contraindication for disc replacement (5 mm). You may find cowboys to do this, but that may be dangerous...

Pls search for the same term (or similar terms) and will find many posts on the subject. The search term is built into the navigation above.

You will see that most ADR mfrs. will disqualify you for disc replacement. There are many other types of spinal reconstruction, some even allow partial movement. Should you pursue this? Speaking for myself, I would not.

I know that hundreds of patients have done well with cervical fusion in this community. Yes, there have been complications from BMP fusions (especially cervical), but hopefully the lawyers and mfrs. have resolved these horrible complications with HO (heterotopic ossification).

Search and read topics -- going back 14 years:

- heterotopic ossification
- spinal instability
- BMP fusions or BMP
- etc.

Here's the search function:

https://www.adrsupport.org/forums/search.php
__________________
"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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  #3  
Old 10-07-2015, 12:22 AM
TomN TomN is offline
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Default New info

Hey Harrison,

Yesterday I went to see the Dr that fused Peyton Manning's neck. He's a really good guy who took the time to answer all my questions and refer to my mri's to most of my questions. He told me to fuse my neck at C6/7 like he did on Peyton and how Peyton went back and played football..with a fused neck!

He said my neck is perfect except for C6/7. He said there is decent disc height loss, a decent bulge into the spinal cord sac, and bone spurs. I also have major narrowing of my foramin at that level which is why most of my pain and numbness is on my left arm. He didn't see any instability and did another flexion extension Xray and it showed no instability. I told him a doctor last month at Penn Medicine saw myelomalacia at C6/7. So he looked closely at the MRI and saw a white area that could possibly be this myelomalacia. That said, he's quite sure I have spinal irritation. I have L'Hermiites sign when I do a chin tuck. Then if I look down, my feet and pinky fingers go numb, still after 10 months following an accident. He said that would warrant fusion. But I spoke with Bertagnoli from Germany who said my films don't lead him to suggest spinal irritation at all. He said an ADR would not cause any aggravation of the spinal cord. And that I need surgery to stop the atrophy and open up the foramin.

The funny part of this whole day is that Watkins and Bertagnoli are friends. Watkins told me that Bertagnoli is the only guy that would put an ADR in a guy with spinal cord irritability. He said Bertagnoli is a little bit of a rebel in this sense. No one in the US would do it, as recommended by the FDA and the disc makers. So I'm totally stuck and confused once again.
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  #4  
Old 10-07-2015, 04:20 PM
TomN TomN is offline
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I'm just going to ask you straight up as I'm just swirling in confusion and not that great at research.

With all your knowledge of who's had ADR on their neck, which docs have you seen higher numbers of success posts in this forum. Beirstadt, Bertagnoli, Clavel...a US doc?

I know I'm putting you on the spot but, maybe you can save me days and weeks of time.

Cheers
Tom
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  #5  
Old 10-07-2015, 05:43 PM
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Cynlite Cynlite is offline
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It took a very long time to come to this conclusion and it's subjective but, IMO it's Dr. Clavel. I suggest that you go to the Post Surgery Forum and search his name so you can read what others have said. I think it's important to know what you are getting into and to feel comfortable with your decision.

If you want to stay in the United States, I think it's the Texas Back Institute (Dr. Blumenthal) but, there is much less information in the forum compared to Dr. Clavel.

I spent about five months reading the forums and posts on this site. I also contacted all the surgeons you mentioned plus, Dr. Blumenthal at TBI and Dr. Zeegers in Europe. I sent packages to all but Dr. Bertagnoli. I am not a fan of the Pro-Disc nor, was I thrilled with the stories I read from patients that had surgery with him. I have a pretty extensive thread in the International Forum that may be helpful to you.

Good luck.
__________________
2006: epidural shots did nothing; 2 surgeons recommended 2 level fusion, I declined.
2007 - 2010 4 foraminotomy and cord decompression cervical surgeries and 2 endoscopic discectomy T7-T8 surgeries; total 6 with Dr. Jho (Pittsburgh,PA) My C6/C7 autofused around 2009.
2013 - 2015: epidurals 3 times (again did nothing) and 4 Radiofrequency ablation (or RFA) procedures.
2016 more RFAs, hit the 10 year mark of this insanity and pain, 3 level M6-C ADR with Dr. Clavel May 19, 2016
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  #6  
Old 10-07-2015, 09:16 PM
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Harrison Harrison is offline
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Tom, my two cents: get several opinions on what is causing the myelomalacia. Irritation is one thing, an undiagnosed condition is quite another.

E.g., if the blood supply is compromised to the cervical segment, which corrective option is best?! If bone growth is THE question post-op, which option is safest for the long term?

Sorry to say you have your work cut out for you. No pun intended.

Many sources (web sites and doctors) say the same thing about myelomalacia:

"...The exact medical term means different things, depending on the reason why the condition exists. In virtually all cases, the condition involves bleeding within the actual spinal cord, due to trauma, disease process or other event..."

This should be re-written, for patients in your situation, to read:

"...The exact medical term means different things, depending on the reason why the condition exists. In virtually all cases, the condition involves bleeding within the actual spinal cord, due to trauma, AND/OR disease process AND/OR or other event.

These conditions are almost always multifactorial, IMHO.
__________________
"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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  #7  
Old 10-08-2015, 01:13 AM
TomN TomN is offline
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Join Date: Sep 2015
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Default Diagnosis

Thanks to both of you for responding with honest opinions.

I think I'm going to have to do the myelogram to know exactly what's going on. Dr Dillin at Kerlan Jobe said the dye will not lie. Ugh!

If there is pressure on the cord, the question then remains.

Will an ADR be OK with spinal irritation. Watkins says no but I'll bet all the Germans say yes.

And to top it off, I buried my dad last week. So glad I have a clear head?!

Thanks y'all
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  #8  
Old 10-08-2015, 08:35 AM
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colorado babe colorado babe is offline
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Join Date: Aug 2014
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Tom: I wish you the best in your search for the right surgeon for you. You will know when you have found him.
__________________
1998- Injured neck and back in USAF
2011 - Started experiencing Severe Symptoms, Migranes, numbness, spasms in legs and feet and sciatica.
Feb 2014 - Received upper Lumbar Injection - Severe Allergy to injection
Mar 2014 - MRI of Cervical and Lumbar, protruding disc in C3-7, Herniated Disc in L5/S1, placed on STD and FMLA )
July 2014 - Stem Cell Procedure performed
Oct 20, 2014 - ADR (MOBI-C) at C5-7 and Anterior Fusion at L5/S1 by Dr. Pettine and Dr. Techy
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  #9  
Old 10-08-2015, 10:08 AM
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Cynlite Cynlite is offline
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Join Date: Mar 2015
Posts: 666
Default

Tom, I'm so sorry for your loss. My Mom passed in May so, I know what a difficult period this is for you. I was in extreme pain after my Mom died for quite some time. I believe the stress from grief really adds to our symptoms. Please don't rush into any decisions until you've had time to process some of your grief. It can be kind of a manic time so be kind to yourself.
__________________
2006: epidural shots did nothing; 2 surgeons recommended 2 level fusion, I declined.
2007 - 2010 4 foraminotomy and cord decompression cervical surgeries and 2 endoscopic discectomy T7-T8 surgeries; total 6 with Dr. Jho (Pittsburgh,PA) My C6/C7 autofused around 2009.
2013 - 2015: epidurals 3 times (again did nothing) and 4 Radiofrequency ablation (or RFA) procedures.
2016 more RFAs, hit the 10 year mark of this insanity and pain, 3 level M6-C ADR with Dr. Clavel May 19, 2016
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  #10  
Old 10-08-2015, 12:36 PM
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randolf randolf is offline
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Join Date: Apr 2015
Posts: 42
Default myelomalacia

i am diagnosed with myelomalacia at C3-4, had an acdf 8 years ago, it is still there, however i don't have any bleeding. i have read this so many times in my records so i googled it and this is what i found; Myelomalacia is a pathological term referring to the softening of the spinal cord.[1] Hemorrhagic infarction (bleeding) of the spinal cord can occur as a sequel to acute injury, such as that caused by intervertebral disc extrusion (being forced or pressed out).[2]
The disorder causes flaccid paraplegia (impairment of motor function in lower extremities), total areflexia (below normal or absence of reflexes) of the pelvic limbs and anus, loss of deep pain perception caudal (toward the coccyx, or tail) to the site of spinal cord injury, muscular atrophy (wasting away of muscle tissue), depressed mental state, and respiratory difficulty due to intercostal (muscles that run between the ribs) and diaphragmatic paralysis.[3] Gradual cranial migration of the neurological deficits (problems relating to the nervous system), is known as ascending syndrome and is said to be a typical feature of diffuse myelomalacia. Although clinical signs of myelomalacia are observed within the onset (start) of paraplegia, sometimes they may become evident only in the post-operative period, or even days after the onset of paraplegia. Death from myelomalacia may occur as a result of respiratory paralysis when the ascending lesion (abnormal damaged tissue) reaches the motor nuclei of the phrenic nerves (nerves between the C3-C5 region of the spine) in the cervical (neck) region.[4] happy times huh? i haven't suffocated yet. best of luck to everybody. i may have it or edema and signal abnormalities at T8-9, T9-10 also
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2007 mri revealed all but 2 discs of entire spine are either bulged, some torn, a few herniated and compressing foramenal nerves or chord c3-4 fusion. myelomalacia at 2 levels, facet arthropathy, spinal and foramenal stenosis, yadda, yadda...
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