Another L4-L5-S1 story

[AZMtnman]

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]

Originally Posted by AZMtnman

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]

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]

CB has some good advice.

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

[AZMtnman]

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]

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]

Originally Posted by Cynlite

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.

[Cynlite]

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]

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]

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