ProDisc/synthes Problems

[Dlg2gldn]

In late November 2008 I underwent cervical disc replacement called Pro Disc C between C4 C5 due to
loss of fine motor skills in my right hand the hospital and doctor in WA was very big in promoting
this new surgery and told me it just had been approved by the FDA. I now see a lawsuit pending claiming
FDA approval was falsely obtained. The hospitals slogan was "Life is Better Pain Free" which is very ironic
as I never reported being in any type of pain prior to the surgery and now live in constant pain. The
Hospital put me on the cover of a medical magazine, billboard and shot TV commercial. While filming a
commercial I experienced my 1st tremor in my hand. I was sure that something had gone wrong with
the surgery to cause the new tremor. I had also been told to say something’s that were not true in the
commercial about my symptoms, I do admit I got caught up in the production of a film crew, but this
made me very uncomfortable.
My Neurologist at the time said I’d developed an essential tremor and later a different neurologist from
the same hospital diagnosed me with Parkinson’s. I’m told there is no definitive test to prove
Parkinson’s. I've been on numerous medications but nothing seems to help the symptoms or constant
pain in my neck and arm/hand or slow the progression of my tremors. I've looked for relief from chronic
neck pain and tremors by getting therapeutic massage and acupuncture. I will be seeking a nerve
specialist as a result of massage and acupuncture leads me to believe I've experienced nerve damage
now moving into my leg. Regardless, after the surgery I live in constant pain and continue to deteriorate
neurologically with the best guessed diagnosis of Parkinson’s.. At a minimum there is was an initial
misdiagnosis and a surgery performed for advertisement purposes! My life is changed forever, I have a
print of the commercial and article on file.

[Maria]

I think I remember you posting a question of the possibility of Parkinson's related to a disc implantation a while back.. ? I am really sorry to read that the chronic pain might be related to the disc implant or that you developed Parkinsons either as a consequence or no consequence or relation to the disc implant.. I guess that is one that is up for grabs so to speak.

In terms of the advertisement or commercial you made endorsing the product or the facility/surgeon (not sure what all is included) what about all your records leading up to the surgery... wouldn't the documentation of lack of pain be really evident there (providing there was no change in documentation that you aren't aware of) vs what you were coached to say post the surgery? All sounds quite unethical to me..

My father had an intention tremor in his right hand for about 40 years.. my brother started with the same nearly 20 years ago (he is 65 now) but the tremors never progressed to anywhere else in the body with my father and he didn't develop any back pain until he was in a MVA at age 87 and fractured a vertebrae.

Lastly have you tried Medical Marijuana for symptoms.. and I'm just throwing this out there as I've not tried it myself though have many friends in my age category (60's and 70's) that are utilizing it for pain management as well as to help with other concerns.

Ok I'm sorry to read what you've wrote and wish there were some better answers out there for you or at least something to help with the deterioration and weakness if not the pain as well. Please keep us posted.

Maria

[Dlg2gldn]

Maria,

Thank you for your reply. It has been an extremly hard pill to swallow. I know that I NEVER reported being in any type of pain prior to the surgery. In their magazine article I was even quoted as saying I was in never in any pain.

My initial symptom was merely I could'nt double click a computer mouse fast enough with my right hand in my new job. The neuro initially thought it was carpal tunnel, but up to this point in my life had never really operated a keyboard consistantly. (prior Air Traffic Controller, I talked for a living).

The Nero ordered an MRI and saw the degenerative disc and I was later told if I got hit a certain way I could become paralyzed. I have always played sports including recreational hockey ect. They told me with this type of surgery I could go back to doing all the same things I loved and I wouldn't need to have surgery again unlike the conventional fushion. The hospital also had just acquired a new doctor from LA preforming this type of surgery and I turned into the gunnie pig/poster boy an was sold into having the surgery. In retrospect I was so stupid and ignorant.

The hospital received such a positive reaction to the magazine article they asked me to shoot the commercial. Thats when they wanted me to say I was in pain. I remember the lady doing my makeup (I know Big Star) on the set saw and talked to me about how upset I was having them words put in my mouth. The added anxiety and stress made my hand shake for the first time DURING a portion of filming!

When I spoke to the surgeon about the new tremor he was concerned sent me to a different Nero and then backpeddled a bit saying they had proof from the films I needed the surgery. From there sent he me to physical theropy and so on so on.

I live in a non medical state for cannabis but it does help a great deal I just dont need to lose a job or go to jail My arm feels like it is dying and getting the best way I can discribe it; Feels like its getting no blood. I can only get relief from shaking and pain by putting my arm behind my head. Now recently my toes and leg are starting to have painful nerve pain.

I am seeing a new Nero mid October and I want some extra attention brought to this surgery instead of just putting me on more medication that I may or may not need!

[Maria]

Was MS ruled out already by the Neuro? That would take a spinal tap I believe as part of the diagnosis ...

[Dlg2gldn]

I did have a Milogram after the surgery which came back good back in 2009 and think I'm on my way to another. They have never taken spinal fluid. When the Parkinson’s diagnosis was given all they did is a toxology on my urine.

[Maria]

A friend started to notice some weakness in his left hand when he played the guitar (dominant hand). He had a stiff neck upon waking at times and while didn't actually have pain felt that he had trouble positioning his neck for years while sleeping or to allow for a comfortable sleep position. He was diagnosed with cervical disc problems because he had disc changes on MRI. He was not recommended to have surgery as far as I know and he continued to have problems and progressive weakness. Finally he was advised to have surgery for his progressive weakness BUT he got a referral to a group at UCLA and someone decided to do a very full workup on him and including a spinal tap and lo and behold he actually had what was then called the "rare progressive form of MS".. (not called that now). This diagnosis came at least 3-4 years after initial disc related diagnosis (21 years ago).

I was just wondering with regard to your diagnosis. He had mostly weakness as his symptom and on one side of his body. Now it's well progressed into muscle wasting and he's in a motorized wheelchair most of the time.

It was thought that the MS might have actually stemmed from some orbital fracture he had in his face back when he was in his early 20's. You just never know what's going to happen in this life and why..

I know it's a bitter pill to swallow re what you're going thru.. I thought the same thing after my 2nd spine surgery failed and I was left with super horrific back pain and neuropathies that lasted nearly 17 years post 2nd surgery.

Again I do hope somehow things will get better for you and do keep plugging away the best able at having things checked out and "dealing with it" as best able too.

We do get some really crazy challenges thrown at us in this life though it's the only one we have so have to just keep "keeping on" and hoping a new day brings something better. That's what pretty much kept me going.

Again please keep us posted. I'm interested to read or hear about your endeavors and how things go.. good bad or indifferent. Wishing you all the best though!

Maria

[Dlg2gldn]

Maria,
This is all very interesting, l did specifically ask a movement disorder specialist at one time if this could be MS and was told no, but I've been misdiagnosed before.

More than anything I like to know if this thing in my neck is responsible for my pain, it sure seems like it! I'll keep you informed

[sahuaro]

I am very sorry to learn of your current problems post ADR.
And very concerned.
I had a Prestige-ST implanted at C5/C6 shortly before you had your surgery. I do not have the pain that you describe. But I have developed a tremor which waxes and wanes in intensity--it is worst when I am tired, dehydrated or very, very upset. At those times, I cannot write or lift a glass, etc. It is thus different from what you are describing, but it is a tremor. I did see a neurologist who sort of blew it off and just prescribed some sedative, which I haven't taken.

I wish Mark would weigh in as to whether he has heard of tremors developing post-ADR.

Please, please update.

[Maria]

Tremor Fact Sheet: National Institute of Neurological Disorders and Stroke (NINDS)

however if not please read.. it's good basic information

Barbara I'm wondering if the neurologist Mark knows in Germany ..Birnbaum??) might know more about anything like this since he might have been more informed with regard to the various cervical implants and possibilities... just a thought.

Hopefully Mark will see this thread.

[sahuaro]

Thanks so much for that link. I would guess that I was diagnosed with an essential tremor because he prescribed Propanolol.

[Dlg2gldn]

I would guess essential tremor as well. I was told if alcohol helps reduce the tremor that's probably it. My arm/hand shakes into pain and feel like there is no blood in my arm and my toes nerves hurt. Mine is very painful and I milk my arm to increase blood flow. This past winter my hand was as cold as it's ever been.My only relief comes from putting my arm behind my neck.. I'll let you know as I progress. The Parkinson's medication doesnt seem to help.

[sahuaro]

You can get a doppler study to test blood flow in your arm.
Your symptoms are very different from mine.
I was wondering though if one factor comes from release of metallic particles over time with the movement of the artificial disk, causing some kind of poisoning--I forgot what this is called but it happens with hip prostheses. My disk is metal-on-metal stainless steel

[Maria]

I guess sustained (long term) pain post implant might be a good indication if nothing else is showing up in terms of allergy testing re implants. I think other indications would be constant low grade fever, swelling at site, infection etc.

I would be interested to read what you both have to report re symptoms, findings, etc. I hope you will both find interested pro active doctors that are able to help.

Maria

[sahuaro]

My general allergies have been "off the chart" although there's no way of knowing if that is related to the ADR. I have wondered about that but even if I were tested for metal allergy, I'm not sure what could be done. I'm not ready to switch out the ADR for other hardware...