CD - Axiomed Freedom Lumbar Trial

[scduggan]

Hello Everyone,
I do not know where to begin. I have been lurking on this website for a long time....and I love it. You guys are supportive, caring and knowledgeable. I hope to someday soon be a giver instead of a taker. I have made a really big decision about my DDD and wanted to run it past you. I think I will put my thoughts in a bullet form, because it is difficult for me to stay on track. I will not ramble on about my back pain. It makes me feel like a whiner and an old fart. You all know about back pain already. Without going through the whole story again, I can summarize my situation in a couple of short sentences. I need a new disc at L4/L5 and I have three opinions from surgeons (two orthopedic and one neuro) all in agreement. I have been diligently fighting UnitedHealthcare and have been unsuccessful. I have been really angry about this and utterly flabbergasted that they get away with this. A couple of weeks ago I had some kind of an epiphany and decided to try to look at things differently. I HAD to let my anger go. It is toxic and zapping the little energy I do have. Next Tuesday (Jan. 4th) I have an appointment with Dr. Zigler to discuss the Freedom Trial. Ever since I made the appointment I have had peace about this decision.....I just hope I am a good candidate for the trial. Maybe the whole crappy insurance situation is really a blessing in disguise. I will have to fly back and forth from Nashville. This I will do happily. Here are my questions/concerns. I appreciate advice, questions, tips...anything.

1) First, am I correct in assuming there is a little bit of a time crunch here? My MRI and discogram/CT scan were done in late July. I feel like I have heard docs do not like using films older than six months. I CERTAINLY do not want to go through the discogram again. I did not think it was that bad. I just know about the research Proving discography accelerates degeneration. I also know the radiation from CT scans is extremely high.

2) Is there anything you guys know about this trial that would be helpful? I have heard incredible things about Dr. Zigler and TBI. I have also heard from one lady who has a Freedom disc. She is doing really well.

3) Dumb question....Will my degenerated disc ever heal? I have done SO MUCH research. I have not found much about aggressive DDD. Everything I have been able to find is about how most people have some DDD. Also, not many elderly people have disc pain because a fully degenerated disc no longer causes pain. This seems way too precarious for me to count on for the future. I am still young with three boys to raise (and hopefully enjoy). I have days in which I do not think I can make it another week, let alone until I am 65.

4) Am I correct in assuming it can be dangerous to wait too long? For so long I just had plain old low back pain. As the disease has progressed, I am having neurological symptoms. In this last year I seem to keep turning a corner in the wrong direction. I have weakness in both legs and my sitting tolerance is getting shorter each month. I used to be able to rest in bed and buy myself some more time to function during the day. Now, I still rest but when I get up....I am right back where I started. I take Ultram and it is not exactly making a big difference. I am also worried about being on Lortab for so long. I just read on this website about being on opiods for more than six months. The lortab is for breakthrough pain....I breakthrough even with the lortab. I am a granola at heart and hate being so reliant on meds.

Thanks for taking the time to read this. Having you guys has kept me from feeling so alone in my plight. I will post next week to let you know how my visit with Dr. Zigler goes. Happy New Year!
CD

[ajj1001]

Hope it goes well for you at your appointment. Not much to say but only you will know when the balance tips over from conservative treatment to surgery. All you can do to help is to get the best opinions possible so you are making an informed decision. It sounds like you have done this and so should be a good place to succeed.

My surgeon (Mr ERS Ross) did a freedom disc trial a couple of years ago in Manchester UK and all I know about its success was that the tiler who helped refit my bathrooms, plastered and tiled them, had one level ADR done with a freedom disc! I have tried a quick search to see if I can see any outcomes written up but can't find any.

I had three teenage daughters and was mid thirties when I had my surgery after being treated conservatively for 2 years before my surgery. Even though my two level adr only "lasted" for 5 years before further problems I still know I made the right decision at the time and do not regret it. I'll never get back the time that I was able to do things with them and be a proper mum rather than someone resting all the time and not able to walk.

[Justin]

Hello Everyone,
I do not know where to begin. I have been lurking on this website for a long time....and I love it. You guys are supportive, caring and knowledgeable. I hope to someday soon be a giver instead of a taker.

We are glad to hear that the Spine Patient Society is making a difference.

I have made a really big decision about my DDD and wanted to run it past you. I think I will put my thoughts in a bullet form, because it is difficult for me to stay on track. I will not ramble on about my back pain. It makes me feel like a whiner and an old fart. You all know about back pain already. Without going through the whole story again, I can summarize my situation in a couple of short sentences. I need a new disc at L4/L5 and I have three opinions from surgeons (two orthopedic and one neuro) all in agreement. I have been diligently fighting UnitedHealthcare and have been unsuccessful. I have been really angry about this and utterly flabbergasted that they get away with this. A couple of weeks ago I had some kind of an epiphany and decided to try to look at things differently. I HAD to let my anger go. It is toxic and zapping the little energy I do have. Next Tuesday (Jan. 4th) I have an appointment with Dr. Zigler to discuss the Freedom Trial. Ever since I made the appointment I have had peace about this decision.....I just hope I am a good candidate for the trial. Maybe the whole crappy insurance situation is really a blessing in disguise. I will have to fly back and forth from Nashville. This I will do happily. Here are my questions/concerns. I appreciate advice, questions, tips...anything.

The hardest part (for me) was learning to accept my spine issues and put a "positive spin" on them, while letting my anger go. Dr. Zigler is a fantastic surgeon and the Texas Back Institute is a stellar clinic. The Axiomed Freedom Trial is a great trial in my opinion. The control for the trial is the ProDisc.

1) First, am I correct in assuming there is a little bit of a time crunch here? My MRI and discogram/CT scan were done in late July. I feel like I have heard docs do not like using films older than six months. I CERTAINLY do not want to go through the discogram again. I did not think it was that bad. I just know about the research Proving discography accelerates degeneration. I also know the radiation from CT scans is extremely high.

Most surgeons like films that are less than 6 months old as you stated. If your discogram was "cut and dry" without any questionable levels, it seems that discography would not have to be repeated (however, this is dependent on many variables including a surgeon's preference).

2) Is there anything you guys know about this trial that would be helpful? I have heard incredible things about Dr. Zigler and TBI. I have also heard from one lady who has a Freedom disc. She is doing really well.

The Axiomed Freedom disc is being compared to the ProDisc (as mentioned above). Here is some more information that might be helpful: Freedom Lumbar Disc in the Treatment of Lumbar Degenerative Disc Disease.

3) Dumb question....Will my degenerated disc ever heal? I have done SO MUCH research. I have not found much about aggressive DDD. Everything I have been able to find is about how most people have some DDD. Also, not many elderly people have disc pain because a fully degenerated disc no longer causes pain. This seems way too precarious for me to count on for the future. I am still young with three boys to raise (and hopefully enjoy). I have days in which I do not think I can make it another week, let alone until I am 65.

No dumb questions here. This is a hard question to answer. It depends on how "bad" your discs are -- how much disc height you've lost, if you have any annular tears, how the rest of your spine looks (posterior elements like facet joints), and, of course, genetics.

4) Am I correct in assuming it can be dangerous to wait too long? For so long I just had plain old low back pain. As the disease has progressed, I am having neurological symptoms. In this last year I seem to keep turning a corner in the wrong direction. I have weakness in both legs and my sitting tolerance is getting shorter each month. I used to be able to rest in bed and buy myself some more time to function during the day. Now, I still rest but when I get up....I am right back where I started. I take Ultram and it is not exactly making a big difference. I am also worried about being on Lortab for so long. I just read on this website about being on opiods for more than six months. The lortab is for breakthrough pain....I breakthrough even with the lortab. I am a granola at heart and hate being so reliant on meds.

I wouldn't say "dangerous" per se, but I would say progressively debilitating.

Thanks for taking the time to read this. Having you guys has kept me from feeling so alone in my plight. I will post next week to let you know how my visit with Dr. Zigler goes. Happy New Year!
CD

Please keep us posted about your consultation with Dr. Zigler. We are here to support you in any way we can. Happy New Year!

[scduggan]

Thank You Alison and Justin,
Your kind words mean a lot to me. I will be flying to Dallas tomorrow night. I will keep you posted.
CD

[Justin]

Thank You Alison and Justin,
Your kind words mean a lot to me. I will be flying to Dallas tomorrow night. I will keep you posted.
CD

Sure thing. Travel safe. Keep us posted, as we do care.

[sportsnut3007]

Good luck with the trial, I hope you get the freedom disc!!! If you are already in then ignore the following statement, but if you are not in yet or whatever I hear they ask you psychological questions so just be sure to answer them with positive energy I guess lol you would have to ask someone who knows more about them than I do.

[scduggan]

Hello Everyone,
WooHoo....I have a tentative surgery date at TBI with Dr. Zigler for February 18th. I am so excited and wondering how I will wait that long. I was very impressed with TBI and Dr. Zigler. They are very top notch and cutting edge. Dr. Zigler said I am a poster child for ADR surgery. I will be a participant in the Freedom trial. I had to get a DEXA scan and it looks good (a little thinning in my femoral neck T -1.2 ). I will let you guys know if anything changes.
CD

Thanks Sportsnut for the heads up about the mental state. I was all smiles and Mrs. Positive! Just hope they don't ask my husband.

[Fuzzy]

You got better bones then me
Your description at the top sounds perfect for adr, it reads like I used to feel. Great you are getting surgery, it sounds like the timing is right and the conservative approach has gone on long enough. I wish you the best.

[Justin]

Hello Everyone,
WooHoo....I have a tentative surgery date at TBI with Dr. Zigler for February 18th. I am so excited and wondering how I will wait that long. I was very impressed with TBI and Dr. Zigler. They are very top notch and cutting edge. Dr. Zigler said I am a poster child for ADR surgery. I will be a participant in the Freedom trial. I had to get a DEXA scan and it looks good (a little thinning in my femoral neck T -1.2 ). I will let you guys know if anything changes.
CD

Thanks Sportsnut for the heads up about the mental state. I was all smiles and Mrs. Positive! Just hope they don't ask my husband.

Congratulations, CD! Dr. Zigler is a fantastic surgeon and the Texas Back Institute is truly a world class spine clinic. The Freedom Lumbar Disc is a promising looking artificial disc replacement device.

February 18th will be here before you know it!

[linda]

Hey CD,
Good luck with your upcoming surgery. I'm also in the Axiomed trial but do not have a date yet. I had to get reenrolled in Oct. I know it must be also reassuring to know someone else who has had the Freedom disc put in and that they are doing well. Before you know it Feb 18 will be here and you can put all of this behind you and begin to live again.
Linda