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-   -   Another L4-L5-S1 story (https://www.adrsupport.org/forums/showthread.php?t=13110)

AZMtnman 04-17-2015 02:51 PM

Another L4-L5-S1 story
 
First, I want to say thank you to the people who run this site and all of you who have shared your stories. I've been surfing the web for awhile and there is a dearth of information about ADR beyond the basic marketing & trials material.

My history, in a nutshell:

I've never had a specific back injury but have experienced periodic severe back pain for over 15 years now.

Previously, ~3-4 times per year I would experience a disc/nerve injury - always triggered by some mundane event like reaching out to pick something up, bending over to tie my shoes, etc. Once the injury occurs, I experience intense pain for a day or two, then milder pain for a few more days, and after a week or so from the injury, I'm "back to normal".

Being a stoic, "tough it out" type of person, I assumed I just needed more core strength or whatever. After a decade of this, I finally saw a doctor, got an MRI, and found out that I had compression and bulged discs at L4/5 & L5/S1, signs of annular tearing, and general arthritic vertebrae & facet joints.

Understanding the problem better, I've been able to reduce the frequency of severely painful episodes but I pretty much have constant mobility issues and milder pain. In one PT episode, the therapist noted that I already move as if my back were fused since my muscles have adapted to just isolate that part of my body. I am much more liberal with NSAID use now, and I'm sure that helps too.

I looked into ADR 5 years or so ago but it seemed premature for me at that time (and immature in the US). But after another recent severe episode, and another MRI that shows further degradation & bulging, I'm starting to investigate ADR again.

The thing that I find extremely frustrating is that there seems to be nothing that the doctors can do right now. I'm basically waiting until my situation degrades to the point of having a massive disc rupture and at that point they will fuse. My doctor suspects that my discs are under severe pressure and that it's inevitable that one day I'll have "the big one". So I'm basically on a plan of trying to stabilize status quo and delay the inevitable injury and surgery as long as possible.

Being the type that previously measured time between doctor visits in years (usually many of them), I don't want to rush into surgery and certainly not into a fusion where the result may be worse than the current symptoms. But it's frustrating that 1) I don't like being in this reactive mode and want to know what my options are before I get to the point where a massive rupture necessitates emergency surgery, and 2) my situation seems like it will keep degrading and "doing nothing" for now may cause my end state to be worse.

That's the short of it. Thanks for reading.

colorado babe 04-17-2015 06:53 PM

Quote:

Originally Posted by AZMtnman (Post 110279)
First, I want to say thank you to the people who run this site and all of you who have shared your stories. I've been surfing the web for awhile and there is a dearth of information about ADR beyond the basic marketing & trials material.

My history, in a nutshell:

I've never had a specific back injury but have experienced periodic severe back pain for over 15 years now.

Previously, ~3-4 times per year I would experience a disc/nerve injury - always triggered by some mundane event like reaching out to pick something up, bending over to tie my shoes, etc. Once the injury occurs, I experience intense pain for a day or two, then milder pain for a few more days, and after a week or so from the injury, I'm "back to normal".

Being a stoic, "tough it out" type of person, I assumed I just needed more core strength or whatever. After a decade of this, I finally saw a doctor, got an MRI, and found out that I had compression and bulged discs at L4/5 & L5/S1, signs of annular tearing, and general arthritic vertebrae & facet joints.

Understanding the problem better, I've been able to reduce the frequency of severely painful episodes but I pretty much have constant mobility issues and milder pain. In one PT episode, the therapist noted that I already move as if my back were fused since my muscles have adapted to just isolate that part of my body. I am much more liberal with NSAID use now, and I'm sure that helps too.

I looked into ADR 5 years or so ago but it seemed premature for me at that time (and immature in the US). But after another recent severe episode, and another MRI that shows further degradation & bulging, I'm starting to investigate ADR again.

The thing that I find extremely frustrating is that there seems to be nothing that the doctors can do right now. I'm basically waiting until my situation degrades to the point of having a massive disc rupture and at that point they will fuse. My doctor suspects that my discs are under severe pressure and that it's inevitable that one day I'll have "the big one". So I'm basically on a plan of trying to stabilize status quo and delay the inevitable injury and surgery as long as possible.

Being the type that previously measured time between doctor visits in years (usually many of them), I don't want to rush into surgery and certainly not into a fusion where the result may be worse than the current symptoms. But it's frustrating that 1) I don't like being in this reactive mode and want to know what my options are before I get to the point where a massive rupture necessitates emergency surgery, and 2) my situation seems like it will keep degrading and "doing nothing" for now may cause my end state to be worse.

That's the short of it. Thanks for reading.

Welcome to the forum AZMtnman. I can definitely relate to your dilemma. I spent 16 years with pain and lots of symptoms due to my L5-S1 ruptured disc. I was all scheduled to have ADR last Oct but decided to go with a fusion after my bone density test came back and I didn't want to have the Pro-disc which was my only option here in the US. I am doing fine and off all medications. I haven't heard many success stories out of Arizona that I can recall but if your insurance allows you to go out of state, perhaps you could contact some other surgeons who have performed many ADR surgeries and have been successful. All the surgeons I went to prior to finding my surgeon wanted to keep me on meds and play the waiting game like you are.

Keep the faith and don't take no for an answer. You are your only advocate.

NJ Gene 04-18-2015 11:13 AM

AZMtnman,

Have you considered getting an injection of your facet joints? That might decrease some of the pain related to arthritis in the facets, while not compromising your ability to get ADR or fusion in the near future. I had this procedure done myself recently at facets of level C5/C6. It helped a lot and will have a longer lasting procedure related to the facets soon. At the same time, I plan to have ADR at the same level on May 5th.

Good luck to you!

Gene

Stonewall_Boris 04-18-2015 01:47 PM

CB has some good advice.

Keep the faith and don't take no for an answer. You are your only advocate.

AZMtnman 04-18-2015 11:28 PM

I've read about injections but haven't pursued it with my doctor. For me, I think facet issues are secondary to the progressively bulging discs. But I do plan to look into it more.

How long have the injections helped before the effect wears off?

My doctor does seem to have a pattern - do nothing for as long as you can and when you can't take it anymore, then fuse. I'm sure there are some very positive fusion stories but as someone who leads a pretty active life, it is disturbing for me to consider possibilities like not being able to mountain bike or backpack.

I'm definitely in need of another opinion. Logistically, how do people contact remote clinics? These people seem so busy. Do most just reply to email, or setup a consultation via phone?

Cynlite 04-18-2015 11:51 PM

I suggest you read posts 5, 10 and 11 of my thread "Germany & Dr. Bierstedt for Cervical ADR?" The names of the four main surgeons in Europe people here use are listed there. Also, listed are some of the top U.S. surgeons.

For Dr. Bierstedt, I contacted his office directly versus using a liaison in the U.S. His name is Malte. m.petersen@germanspinespecialists.com

For Dr. Zeegers, I filled in the form on his website and he called me almost immediately.

In both cases, I wrote up my history in a two page summary and sent it to them so we would have a place to start the dialogue.

I have not contacted Dr. Clavel but, will just do so at his website.

One of the best places we have in Arizona is The Barrow Institute but, I would only consider them for the Mobi-C (cervical disc). Their Mobi-C surgeon is Dr. Chang. I'm still trying to get into see him.

The Pro-Disc is the only lumbar disc approved in the U.S. but, I believe that is about to change shortly. Hopefully, one of the lumbar patients will fill in the details on it for you. I just got my lumbar MRI report today and am concerned that I may need an ADR in my lumbar spine. I would not consider the Pro-Disc because of all the unfortunate stories I have read about it.

colorado babe 04-19-2015 11:34 AM

Quote:

Originally Posted by Cynlite (Post 110304)
I suggest you read posts 5, 10 and 11 of my thread "Germany & Dr. Bierstedt for Cervical ADR?" The names of the four main surgeons in Europe people here use are listed there. Also, listed are some of the top U.S. surgeons.

For Dr. Bierstedt, I contacted his office directly versus using a liaison in the U.S. His name is Malte. m.petersen@germanspinespecialists.com

For Dr. Zeegers, I filled in the form on his website and he called me almost immediately.

In both cases, I wrote up my history in a two page summary and sent it to them so we would have a place to start the dialogue.

I have not contacted Dr. Clavel but, will just do so at his website.

One of the best places we have in Arizona is The Barrow Institute but, I would only consider them for the Mobi-C (cervical disc). Their Mobi-C surgeon is Dr. Chang. I'm still trying to get into see him.

The Pro-Disc is the only lumbar disc approved in the U.S. but, I believe that is about to change shortly. Hopefully, one of the lumbar patients will fill in the details on it for you. I just got my lumbar MRI report today and am concerned that I may need an ADR in my lumbar spine. I would not consider the Pro-Disc because of all the unfortunate stories I have read about it.

Please share what you know about a new ADR disc? If only I could have waited a few more months. :confused:

Cynlite 04-19-2015 11:46 AM

CB, see Activ-L update under Anthroplasty Central. All I know is what I have read on this site. The post said mid 2015.

AZMtnman 04-19-2015 05:22 PM

I saw those posts also. But I don't want to be the first person to sign up for a few device and/or process if I can help it. I don't even like to buy a new cell phone until it's been on the market for a bit, let alone a new spine.

Hopefully I can hold out for awhile and the market will respond positively to new devices.

Cynlite 04-19-2015 05:47 PM

I believe you are incorrect. Take a look at Dr. Zeegers website. Good luck.

AZMtnman 04-19-2015 07:38 PM

But the benefit of having a new device like Activ-L in the US is to use US doctors with US insurance. And most of those doctors are starting from scratch with experience with a "new (to US)" device and new surgical protocol. Hence my comment about not wanting to be the first person to sign up.

International surgery is clearly a different conversation and process maturity and surgeon experience are not the risk factors I'm concerned about there.

Just my opinion. And my opinion is subject to wild fluctuations depending on how my back feels on a given day.

NJ Gene 04-19-2015 07:54 PM

Quote:

Originally Posted by AZMtnman (Post 110303)
I've read about injections but haven't pursued it with my doctor. For me, I think facet issues are secondary to the progressively bulging discs. But I do plan to look into it more.

How long have the injections helped before the effect wears off?

The facet injections work differently for everyone. For some people it does nothing at all, which means the facets were probably not the cause of the pain. For those that it does help, the effect can last anywhere from a couple weeks to a few months. More importantly, it if it does work, there is a longer lasting procedure, called a Rhitzotomy, in which an injection is made with heat that effectively "deadens" the pain causing nerves. I'm told this can last for years and sometimes for life.

pittpete 04-20-2015 01:01 AM

These doctors arent starting from scratch.
Many were involved in the initial FDA trials.
Depending on where you live you may find one close to you.
Do your research https://clinicaltrials.gov/ct2/show/NCT00589797
Investigators
Principal Investigator: Rolando Garcia, M.D. Orthopedic Care Center
Principal Investigator: James J Yue, M.D. Yale University
Principal Investigator: Dom Coric, M.D. Carolina Neurosurgery and Spine Associates
Principal Investigator: Steven Dennis, M.D. Hoag Memorial Hospital Presbyterian
Principal Investigator: Federico P. Girardi, M.D. Hospital for Special Surgery, New York
Principal Investigator: Mick Perez-Cruet, M.D. Michigan Head and Spine Institute
Principal Investigator: Harel Deutsch, M.D. Rush University Medical Center
Principal Investigator: Glenn Buttermann, M.D. Midwest Spine Institute
Principal Investigator: Dzung Dinh, M.D. Neuroscience Education and Research Foundation
Principal Investigator: Vikas Patel, M.D. University of Colorado, Denver
Principal Investigator: Christopher Ames, M.D. University of California, San Francisco
Principal Investigator: John Regan, M.D. St. John's Hospital and Health Center
Principal Investigator: Andrew Dailey, M.D. University of Utah Medical Center
Principal Investigator: Darren Bergey, M.D. Rancho Specialty Hospital
Principal Investigator: Brian Dalton, M.D. Hamot Medical Center
Principal Investigator: Scott Leary, M.D. Scripps Memorial Hospital La Jolla
Principal Investigator: David Hart, M.D. University Hospitals Cleveland
Principal Investigator: Antonio Castellvi, M.D. Foundatin for Orthopaedic Research and Education
Sorry to sound snippy but if you think its easier to fly across the world and let a doctor you never met, who you hope has your best interest at hand while paying cash with no follow up to future problems you need to invest the time

AZMtnman 04-20-2015 01:31 AM

Looking at that trial report, there were 414 total patients and only 2 in 3 received the Activ-L. Spread that out across all of the PIs and you're left with a pretty small sample set.

I meant no disrespect to the PIs. My point was simply that there isn't much experience with the device and that just takes time. I personally hope the adoption rates for new devices take off because it would make my personal research and choices easier if there were thousands and tens of thousands of successful cases vs dozens and hundreds.

AZMtnman 04-20-2015 01:36 AM

NJ Jene, Thanks for the info on facet injections. I'll definitely need to look into this further. I always thought that I had a good relationship with my doctor but I have to admit that I'm getting a bit frustrated with the waiting game. Particularly if the end game is fusion.

JeffR 04-20-2015 12:10 PM

Quote:

Originally Posted by pittpete (Post 110325)
Sorry to sound snippy but if you think its easier to fly across the world and let a doctor you never met, who you hope has your best interest at hand while paying cash with no follow up to future problems you need to invest the time

It takes hundreds if not thousands of procedures with a device to become adept with it. I personally wouldn't let a doctor who has done less than 50 touch me - which is the case for pretty much every Doctor on your list I suspect.

Sometimes paying cash and going across the world is the best answer. There are excellent surgeons out there who DO have their patients best interests at heart. Yes follow-ups aren't free, but you can get someone locally to follow you after. If you need another surgery in the future (god forbid) then you pay again - I realize that isn't option for everyone but it is for me. Once there are experts in the US and Canada with 3rd generation discs that are FDA approved then my opinion will likely change but before that I will be highly sceptical.

pittpete 04-20-2015 02:57 PM

That not my list, that is a list of doctors that participated in the clinical trials.
I wasnt talking about free follow ups but the fact that an out of country doc cant see me next Tuesday for a follow up.
Also getting doctors to follow up after someone whose done thousands of ADR implants?
Why would you need a follow up if these doctors performed thousands of implants?
Some people might not have the luxury of paying cash and then oh well, let me just pay again...
A doctor like James Yue is one i would trust and the reason why is because of research.
Zeegers who is the so called pioneer continues to use the Activ-L.
An ADR is not a magic fantasy prosthesis that will cure all your back ailments.
I will quote again that Bierstedt looked at my MRI,listened to my complaints in NY city and told me my facets joints were good enough for adr.
Lets also replace the slightly bulging one and make it a 3 for 1 trip.
Like a FN oil change i was going in for...

DrewDotNet 04-20-2015 03:22 PM

Quote:

Originally Posted by AZMtnman (Post 110318)
I saw those posts also. But I don't want to be the first person to sign up for a few device and/or process if I can help it. I don't even like to buy a new cell phone until it's been on the market for a bit, let alone a new spine.

Hopefully I can hold out for awhile and the market will respond positively to new devices.

Activ-L has been on the market in Europe for several years, as has the M-6L.

I don't know if traveling to Europe is an option for you, but you may want to consider it.

Whatever you do, I suggest reading plenty of that device (and surgeon's!) patient stories to get a good feel for both good and bad outcomes. Give yourself plenty of time to let the information "sink in." You'll eventually find the "right" answer for you.

JeffR 04-20-2015 04:19 PM

That not my list, that is a list of doctors that participated in the clinical trials. You posted it, hence I called it your list.
I wasnt talking about free follow ups but the fact that an out of country doc cant see me next Tuesday for a follow up. A surgeon in NA isn't going to see you on that short notice either.
Also getting doctors to follow up after someone whose done thousands of ADR implants?
Why would you need a follow up if these doctors performed thousands of implants? Good to ensure everything is going on track. For me it was to make me feel at ease and confirm everything was healing as per normal, I'm sure there are tons of reasons.
Some people might not have the luxury of paying cash and then oh well, let me just pay again...I said the same thing in my post, and I agree when things go sideways it is a bad scene but often this is preventable by doctor and device choice.
A doctor like James Yue is one i would trust and the reason why is because of research. I don't much care if someone is a researcher since that doesn't make them a great surgeon. Those are different skill sets that may or may not overlap.
Zeegers who is the so called pioneer continues to use the Activ-L. I agree that Zeegers is top-notch, but keep in mind that doctors often stick with what they know to work, sometimes to a point that is detrimental to the potential outcomes of their patients (e.g. Dr. Bertagnoli)
An ADR is not a magic fantasy prosthesis that will cure all your back ailments. Was for me, but your mileage may vary :)
I will quote again that Bierstedt looked at my MRI,listened to my complaints in NY city and told me my facets joints were good enough for adr.
Lets also replace the slightly bulging one and make it a 3 for 1 trip.
Like a FN oil change i was going in for...I have no idea of your story and can't comment, but I've never vouched for Bierstedt on this board.

pittpete 04-20-2015 07:05 PM

Quote:

A doctor like James Yue is one i would trust and the reason why is because of research. I don't much care if someone is a researcher since that doesn't make them a great surgeon. Those are different skill sets that may or may not overlap.
To clarify, i know him to be an excellent surgeon and in fact trained in the activ L because of the research i(me) have done on the subject..NOT because he is a good researcher...LOL


The point im trying to make to the original poster is anyone thinking of going to Europe for an ADR has to do their due diligence.They need to research, research and then research all options again..Just because Joe Schmo had a successful 3 level ADR with disc XXX, doesnt mean **** and shouldnt mean **** to Joe.
I won't go into the reasons why Zeegers uses and still believes in the Activ-L.
I know why, but if someone wants to know thereis plenty of info on this site and on the internet..
The Activ-L being so close to FDA approval is a major step for back sufferers in the USA in my opinion.

Boxer78 04-20-2015 07:22 PM

Adr
 
Pete do tell the activ L Zeegers secret?? Financial? Is it really the best disc? It seems to fly under the radar compared to the m6 etc. I do know it works differently than any other disc.

pittpete 04-20-2015 08:35 PM

Boxer you lazy SOB...LOL

I will start you with just this tidbit http://www.adrsupport.org/forums/f51...ll-tell-12869/

I've also spoke to Zeegers in person and am in contact with a person who has had surgery with 2 activ L's.

Again, you do your research and you make your decision..

Boxer78 04-20-2015 08:41 PM

Adr
 
Lmao!!! I know about both discs I just got the feeling you knew something the rest of us don't. It's kinda like the rumor of this special new m6 for L5-S1 that someone mentioned even though I can't find anything about it.

JeffR 04-21-2015 08:58 AM

Quote:

Originally Posted by pittpete (Post 110354)
To clarify, i know him to be an excellent surgeon and in fact trained in the activ L because of the research i(me) have done on the subject..NOT because he is a good researcher...LOL


The point im trying to make to the original poster is anyone thinking of going to Europe for an ADR has to do their due diligence.They need to research, research and then research all options again..Just because Joe Schmo had a successful 3 level ADR with disc XXX, doesnt mean **** and shouldnt mean **** to Joe.
I won't go into the reasons why Zeegers uses and still believes in the Activ-L.
I know why, but if someone wants to know thereis plenty of info on this site and on the internet..
The Activ-L being so close to FDA approval is a major step for back sufferers in the USA in my opinion.

I think we have hijacked Azmtnman's thread enough but I will say I agree that the Activ-L as an option in the US is a HUGE step forward in the U.S. as the prodisc is just not a great solution especially for lumbar.

I agree to disagree on the value of people stories here. Of course research is important, but looking at patient outcomes is INVALUABLE research, and in fact it is one of the primary benefits of a site like this, and people shouldn't overlook that.

AZMtnman 04-21-2015 09:33 AM

I don't really mind the hijack. The whole point of these threads is to discuss options and share knowledge and opinions that help people evaluate options and make decisions.

Personally, I have family connections in the medical research arena so I'm aware how much the available information can lean towards marketing (seems much worse in the pharma world than low volume ADR, but still) so I find more value in the stories people share of their own experiences.

And while I agree that getting new device options in the U.S. is huge, my point was that it is more of a beginning than an end. It will take years for local doctors to get enough experience before I personally feel comfortable with it. Given the level of bulging in my last MRI, I'm worried that I'll end up with an emergency fusion before the new devices are generally available.

Regarding the Activ-L trial, has anyone seen any research abstracts or conference presentations from any of the PIs in the trial? It would be useful to have more visibility there.

Romakis 04-21-2015 12:50 PM

AZMnman,

Very similar story here. DDD of L4-5-S1. Can function (walk, do minor things wiout pain). Sitting hurts. Can probably wait, and wait and wait. Questions is - why? Your back will not get better, and so will not mine. It will get worse. I am also looking at autofusion if I wait too long.

randolf 04-22-2015 11:20 AM

the new implant that is in the end of the FDA study is the AxioMed Freedom Lumbar Disc. the FDA is running the study comparing the Prodisc L against it. 2016 is what i heard the study will be finished. the AFLD works identical to the SK M-6 except it is all one piece. I talked to Dr. Pettine, and he wants to use a Coflex on my L5-S1. since it looks bad, herniated and pressing on the left sciatic nerve, it hardly ever bothers me. so i'm waiting to see what happens with this study. like the M-6, the FLD has a cervical counter part, that isn't in a study yet.:)

randolf 04-22-2015 11:27 AM

AxioMed Freedom lumbar and cervical discs
 
Please if you haven't heard of this company or the disc check them out. if you like the M-6 or the Mobi-C they are worth at least a look at.:sus::jacks:

pittpete 04-22-2015 04:17 PM

http://www.crainscleveland.com/artic...nvestment-firm

randolf 04-22-2015 05:31 PM

That's the company. my voc-rehab counselor's husband had the prodisc-l installed and it caused fractures of the vertebral body and had to be fused. the disc is still in him and still hurts at the site, the nerve pain is better now that it is fused. now his neck is going and there is talk of fusing, just like me as we have the same Dr.s. i told his wife about this site, everything i have read on the net, and there are options here or overseas and it isn't as hopeless as it feels.


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