New member: misery must love company because I don’t feel so bad now. (cervical)

[RP_OutWest]

Hi all,

[Long Story – or skip to Short Story]
I’ve read through a significant amount of this forum and you all inspire me. I’ve got nothing on most here. My problems seem almost petty compared to what I’ve read. Sure I’ve had symptoms on and off for the last 10 years or so but they’ve been mostly manageable. I did have to give up volleyball about 8 years ago and cycling about 5. But except for that I’ve not had serious bouts with pain. That is until January of 2012 when I started a headache that lasted until the end of that August.

After working through all the #@# procedures set forth by insurance, I was finally granted an MRI. To this day I don’t understand why they order a $1000 worth of PT when a $500 MRI can show everything including why PT won’t work. Anyway the MRI led to steroid injections into C7. Through the course of 3 shots the headache(s) diminished and became infrequent but not entirely gone. However, the pain management (PM) specialist was still concerned about the loss of strength in my right arm.

The funny thing is that each time I went in for a visit, my prognosis seem to become more severe. It’s like he was easing me into the real diagnosis. Six months after my third ‘general’ shot, I return for a focused shot into the right side where he was sure that the actual problem existed. This time he was very tempered and recommended that I make an appointment with a neurosurgeon.

Remember, my main symptoms were/(are) headaches and neck pain on the right side. The PM doc said he didn’t know why the shots worked pretty well. But didn’t think this was a solution because he was more concerned about my weak right arm.

At the neurosurgeons appointment I was still too stunned about needing cervical surgery to be on my best game. I didn’t insist on better answers. He had a decent enough bedside manner and exuded the typical surgeon confidence. He recommended a hybrid fuse C6/7 and a Prodisc-C at 5/6. I ask about a multilevel and was surprised to see his willingness to say yes, well sort of. He said that sometimes it cannot be placed a C6/7 because of the clavicle or other bone can obscure the xray. I know the prodisc needs to be dead center but I have not read about anything obscuring the xray from seeing C7.

As he went on, he described fusion needing “inflammation” to help the fusing process. But, ADR doesn’t like inflammation at all. So with ACDF I don’t get to take ibuprofen (a candy to me: see headaches above) but with ADR I do. The first question I didn’t ask was, “how does performing ACDF and ADR in the same procedure work if they require two different healing plans?”

So he showed me a Prodisc-C. Wow that is pretty small. Hey, it’s just a ball and socket. How come we haven’t been using these things for decades? (…What we have.) My next question that didn’t get asked so it couldn’t be answered was, “aren’t two ball and socket joints on top of each other inherently unstable?”

At least I did remember to ask how all this going to help my headaches? He assured me that the nerve bundles where the MRI indicates a narrowing could not be responsible for my headaches. These nerves are very well mapped out and headache is not a symptom. Again, like the PM, he was more concerned about my weakened right arm and predicted the numbness I had experienced in my left hand would occur in my right.

Not one month later did my right thumb and index finger get tingly and a little numb. It only last a few days. But then over the weekend I started feeling pain in my right forearm…now all but dissipated. Both these doctors have stated they are much more concerned about nerve damage then my other symptoms.

[Short Story – or to the point]
So after 10 years of on-again, off-again issues with arm weakness, hand numbness, and back/neck pain, I had a headache for 8mos. Steroid injections made my headaches manageable but I’m concerned about the new occurrences of tingling and pain in my right hand and forearm. The recommendation to have a two level ADR using Prodisc-C is disconcerting because they are ball and socket joints were a ball and socket don’t currently exist. Not to mention that the doc may revert to a hybrid.

I’m also concerned about fusion as I’ve read that somewhere between 12% and 20% of ACDF recipients eventually need one on the adjacent level. (Are those stats right?) This concerns me because my adjacent levels aren’t looking so good. Stressing them with a fused joint does not appear to me to be a good idea.

So now I have a list of questions which is what lead me to this site. Some of them were answered just by reading other posts. But I still have more (some from above which I’ll sum up now):
1) Are NSAIDs forbidden during the recovery period of an ACDF?
2) If so, how does a multilevel hybrid work if the ADR recovery often uses NSAIDs?
3) A two level ADR with Prodisc-C would seem to be unstable because there are two ball and socket joints on top of each other. Can the vertebra in the middle be tilted because of this? Can there be excessive wear on the facet joints? (Facet joint issues have been suggested as a possible cause of my neck and upper back pain.)
4) Does everyone that can afford an M6 getting one or are some still going with the Prodisc-C for multilevel?
5) Someone mentioned that Spinal Kinetics lost funding, I think for FDA approval. I’m not sure what that means in terms of their stability.
6) What are the negative with the M6?
7) Is there any more news on the Mobi-C and FDA approval for multilevel?
8) Oh, and where do I start if I want to explore doctors outside the US. Do I just cold call them or is there a rep to help out?... I haven’t explored that part of the forum (if there is one….).
9) For non-local doctors, what format do they need for reviewing my info? DICOM files or JPGs...?

Wow, that was really therapeutic. I normally don’t go that that kind of thing.

Thank you all (and Harrison) for such a wonderful, supportive community;

-RP.
(edit: added #9)

[LauraB]

Good Morning RP - You have definitely come to the right place and will find comfort knowing that there are many others out there sharing a similar journey of pain, treatment paths, and surgical outcomes (whether good, bad or otherwise). I recently joined in June after 5 years of "fusion avoidance" and a severe migraine that landed me in the ER with "stroke-like" symptoms.

I have been a royal pain in the neck (pardon the pun) on this forum; asking every question under the sun and teetering back and forth with "which doctor" and "what device is better." I've finally made up my mind, but it was certainly with the assistance, opinions, and advice from others on this forum.

There are members here who have hybrids and will be happy to lend you their personal knowledge of the healing process. I, however, had a fusion 7 years ago (C5-6). At the time, it saved my arms from permanent nerve damage and I thought it was my only option at the time (I trusted my surgeon - my mistake). You are right about subsequent damage to other vertebrae - domino effect. A fusion alone causes an increased ROM on the adjacent levels. As with my fusion, my levels above and below were impacted and both an ortho and neuro surgeon wanted to fuse my entire cervical spine (??????) My anxiety led me to begin research on alternatives.

I am sure your experience will be similar to mine as a whole new world opened up when I discovered ADR. Do not limit yourself to information. You can inquire with several doctors oversees without cost. A few do charge a consulting fee (that is up to you). The process is rather simple. There are lists of qualified and highly recommended surgeons/surgical sites on this forum. Look up and read about each surgeon and fill out your medical information from their website. Usually jpeg files are easier to send in a zipped file. I found "dropbox" to be an easy universal access to information.

Surgeons in the US are limited to the surgical implanted devices as only a few are FDA approved. Also multi-level ADRs are not approved - so in many cases that won't be an option unless you decide to work outside insurance. In a multi-level case, experienced multi-level surgeons are a must. There are some in the US, there is a list posted here on the forum. I have just recently crossed over to the side of the M6. In my research I have yet to find a negative outcome, surgical lawsuit, or impairment in the 8+ years it has been used. My original decision was also the Prodisc C (Nova), but had similar concerns about the "ball and socket" construction and overextension of movement/slippage. I am not an engineer (but many of the members on this site are) and the M6 seemed like a "logical" choice FOR ME. There are several other well constructed ADR devices out there as well, depending upon your physiology and pathology. You will need to choose a surgeon who will fit you with the device that best works for you - so be careful not to choose a surgeon who has preferential tendencies toward one - financial/contractional obligations.

I'm sorry if I'm getting too wordy - or invoking too much of an opinion. I was so fortunate to find this site and have developed supportive relationships with members who have truly helped me out. I'm excited (and still a little nervous) to say that I will be going overseas (Dr. Bierstedt - Hattigen Germany) in September for a multi-level M6 sandwich. It will be like a birthday for me.

[RP_OutWest]

Thanks for the support LauraB. I have read many of your posts during my "trial" period of the forum. Your activity on the forum was the most influential in convincing me to join. Like I said in my title it is somehow comforting interacting with others in a similar situation.

BTW, I am an engineer but not a mechanical or chemical one. I am highly encouraged by the M6. I am looking into all aspects of its design but mostly researching the materials used in its constructions. I’m reading up on UHMWPE which has apparently been used in knee/hip replacements for decades. Now my research on polycarbonate urethane isn’t as far along. My main questions are their lifetime and wear profile. Typically I think materials that operated at a constant moderate temperature last longer.

Keep posting you are an inspiration to those of us who have not yet joined. I pray that your procedure in September is successful. Please keep us informed of you journey and God bless.

-RP

[LauraB]

RP: Thank you for the positive feedback - This forum has been cathartic for me while awaiting "repair." Through my constant perusing through the internet, I have yet to find a negative surgical outcome for the M6. It is going on, I believe, 8 years now. Some may feel that there is just not enough research to test the longevity of the inner core materials inside the body. I agree, but if it has lasted in 5000 patients for 8+ years, I feel inclined to believe that the longevity should far exceed others (again, based upon pure speculation on my part - not an engineer). I have a fusion which should last a lifetime, however negatively impacted the adjacent levels after only two years.

I'm very interested in hearing about your continued research in regard to polycarbonate urethane. I'm aware of several members who are very knowledgable in this area, and will definitely share their opinions.

Blessings to you as well. I'm confident you will find the answers you are looking for and be guided down the right path for you.
Laura

[TPatti]

RP, I too would welcome any more information you find as I now have 3 M6 lumbar discs in me. My choice was made very much on some of the ponts that Laura pointed out:
1. Very positive outcomes
2. More than 1 doctor siad that the disc wears much like a natural disc would, meaning that there is some wear but that is not different than our natural discs so it will still function as it wears
3. Because of the condition of my facet joints at L4/L5 it was the only option that would not involve a hybrid w/ fusion
4. I felt more comfortable having shock absorption with three levels opposed to 3 hard levels.

If you or anyone has any specific questions about my surgery or recovery to this point feel free to ask.

[RP_OutWest]

I just found the thread here that has several members speculating on the durability of both polycarbonate urethane and UHMWPE w.r.t. the M6L. Some seem more concerned than others.

It appears that the M6L produces less debris than ball and socket types. But it may compress more over usage. That is the first concern. It seems the study used 20M cycles and the M6L lost 1.3 +/-.6 mm of height when subjected to 1200N (per actuation I guess.) I think this relates to about 10% of a lumbar disc. I suspect the M6C won’t have anywhere near 10% compression, there is not nearly as much load at that level.

The second concern is the UHMWPE annulus wearing against the plates into which it is woven. UHMWPE has a better wear profile than Teflon, but that doesn't tell me anything in regards to its use in the M6. One member sighted a study (I think form SK) that said not one single strand of the annulus failed after whatever test they ran (possibly the 20M cycle test).


Here’s the link.
http://www.adrsupport.org/forums/f51...-million-5198/

BTW, ball and socket discs use these materials also so they are not immune to similar failure mechanisms. Also, they wear on each other via abrasion. The annulus in the M6 probably does not have compressive force pushing it against the metal plates when moving across it like the ball does against the socket.

The best advice is that there are a sufficient number of recipients that have had the M6 for 5 years or more. If there becomes a problem we should be able to here about it on forums like this one well before the ones we have fail. But hopefully that won’t happen.


TPatti, i'll have to look for your story on here. I hope your recover is going well.

[Stonewall_Boris]

I never could/would try to compare the ADR discs on their merit I'm not trained in that specialty, I suspect VERY, few are. I believe I could compare ADR vs fusion, and that was about my limit. I went with the most comfortable doctor that I felt good with and that was it

[TPatti]

I second what Stonewall stated. Also keep in mind what you stated, "that has several members speculating," and remember we have to be careful to distinguish who the experts are. I am not, but do know that when I asked both Dr. Clavel and Dr. Bierstedt about the wear of the M6 they both said that YES, there is some wear but there is also wear to a healthy natural disk as it ages as well. Both doctors also expressed concern that a 3 level lumbar w/out any shock absorption would most likely cause more wear to my other structural elements so having a disc that supposedly MIGHT not wear as much would not be any better. I believe we all have concerns about how long any adr will last but have to not get hung up on one aspect but find a doctor who we trust is making a decision based on all factors. This is a good reason to value a doctor opinion that uses multiple types of discs.

[RP_OutWest]

Just to make it clear, I was only trying to summarize what was said in the linked thread, which was intern attempts to interpret the testing information available to members.

My only speculation is about the annulus not be subject to wearing from compressive force. My opinion of the thread is that we don't know about the long term (40 year-ish) durability of any of the discs. All we can say is each manufacture claims they have tested it and believe theirs will last for a "lifetime".

[annapurna]

Speaking as one of the people doing the interpretation in the thread RP OutWest mentioned, I did try to distinguish my analysis of the disk behavior, which I can only make educated guesses about versus the behavior of the materials within the disk, which Laura and I have five degrees and almost forty years of experience as materials engineers. All of that doesn't mean we're correct in our opinions about those materials but it earns us a right to have those opinions.

One countering comment about TPatti's reply though: I fully defer to the surgeons' experience on how easy the ADR is to put in place, but I question why we grant them the status of expert on how well the ADRs behave once they're in someone's back. Very educated and intensely interested informed consumer - yes. Expert - I'm not sure. Basically, I'd say that it comes down to your own personal understanding of the situation. There are no experts; there are only varying levels of trust people have earned by their knowledge and experience.