About to set ADR date. Should I ????

[Disky]

First of all, I just want to say thanks for this amazing forum! I’m so glad I found it and hope to have a positive impact here as I continue though my journey whether or not I end up having surgery.

As for me and my story, I’ll try to be as clear and concise as possible. 38 year old male, symptoms stared almost three years ago exactly. I woke up one morning with severe neck pain and I assumed it was just another ‘crick in the neck’ episode that would resolve on its own. It didn’t.

A few months later I knew something was wrong when I experienced pins and needles shoot down my arm. I went straight to the doctor who gave me a round of prednisone and sent me to physical therapy. The pins and needles subsided but the pain returned.

The years went by and since everyone I saw assumed I had some kind of muscular issue, no image was ever done. After trying every conservative treatment available from Chiro to Acupunture,, Botox Shots, PT, etc. I finally went to my primary care physician and demanded an MRI which he ordered immediately.

The MRI showed DDD at C5C6 as well as osteophytes with moderate to severe stenosis on right, less so on left. My primary Dr. didn’t think it was that bad and suggested nerve block shots which I did two of with no relief. The radiologist that did the nerve blocks informed me that the inflammation was severe and disc loss was substantial. This was a surprise to me considering the initial diagnosis. At this point, I knew it was time to meet with a surgeon to get their take. I have since met with six. Here is a summary of what they said:

1st two. suggested disc replacement without hesitation. I was shocked. I didn’t even know about this procedure and didn’t realize my condition was that severe. One of these surgeons was Neel Anand from Ceader’s who I understand is very prominent in the field. I was having my worst week of pain yet and almost pulled the trigger but held off.

3rd Dr. Bill Caton (head of neurosurgery at Huntington Memorial in Pasadena, CA ) said the disc loss wasn’t that bad and suggested traction and cervcal collar. Traction seems to make things worse and the collar seems a little silly honestly. I can’t imagine sleeping with this thing would my symptoms and it’s very uncomfortable.

4th Dr. Jeffrey Wang (co-head of the spice center at USC) did an X-Ray and said I have the worst condition possible to treat. DDD + Arthritis. From the X-Ray he said it’s basically bone-on-bone which it did look to be. He was not optimistic about surgery for me (not sure why exactly) but said if I couldn’t take pain then I should have a discogram and fusion -- though he seemed to have no interest in doing either. I practically left his office in tears.

5th was a report from Grand Rounds which is a service that was available to me free through work. They basically gather your medical records and send them to a top 1% person in that field and they give you back a report with recommendations. The report was extremely detailed and the surgeon (Dr. Greg Gebauer) recommended for me to hold off on surgery if I can but said if it got bad enough that disc replacement would make the most sense. He felt strongly that C5C6 was the source of my pain but cautioned that it’s always difficult to be sure etc.

Lastly, I met with Dr. Hyun Bae in Santa Monica who I understand to be a big-time disc-replacement surgeon. He was awesome and put it to me very plainly. “Do you NEED surgery? No. Will surgery help you? YES! It is a quality of life issue.”

Now, it’s decision time. You see, I have full motor function and experience almost no numbness, needles etc. so while surgery may not be 100% medically necessary, my quality of life at times has been seriously compromised. Just the other day I had an episode where I woke up and could barely move my head. I somehow got through the next few work-days but was miserable, even claustrophobic due to the compromised range of motion and pain. I’m doing much better today (if it was like this every day I wouldn’t have surgery) but I’m just about fed up with this and feel like it’s time to pull the trigger on the procedure.

Dr. Bae was unbelievably cool with me and as of this moment, I’m planning to call and set a date with him sometime next week unless of course, you all chime in and give me compelling reasons not to, which I implore you to do!

So, I hand it over to you good citizens of this forum! I have two young children and this has really affected my life. I feel like if there’s a chance to get better that I have to take it. Conversely, I’m terrified that the surgery could make me worse and I would be just devastated if that were to happen. As I said, no neurological symptoms, no headaches, I sleep fine etc. It’s just the PAIN!

Bae prefers the Mobi-C (I believe he was on the design team) but my insurance doesn’t cover it so he said he would use the ProDisc (although I wonder if I should just pay for the Mobi-C out of pocket? Are they that much better any idea how much they cost?)

Thank you all for listening. Please let me know what you think I should do! I welcome any and all feedback or if you have links to other threads you think I should read through, I would really appreciate it!

-Mike D(isky)

[jss]

Mike,

What a story! Welcome.

I've often wondered if some doctors don't test us, by telling us that we don't need treatment; to see if we do just because of the quality of life issue (as in your case). From what you've posted, it certainly sounds like surgery is warranted, and I'd encourage you to pursue it; preferably ADR.

That's too bad that your carrier won't cover the Mobi-C. But if your surgeon specializes in the ProDisc, then you don't want to go in and demand something with which he's not familiar. If all things were even (and they're not), I'd hands down opt for the Mobi-C.

I'm not familiar with the issues of arthritis and DDD in the same patient. I had both and have done very well five years after a double ADR. That's my 2 cents, and I know others will chime in with theirs.

Good luck!

[colorado babe]

Disky: I would appeal the Pro-disc and ask for the Mobi-C if that was denied by your insurance. The mobi-C is not investigational now so there shouldn't be any issues. When you do your research, try to find evidence-based practices on the Mobi-C. If you need help with research, I would be happy to help you.

As far as costs concerns with the mobi-C, your surgeon's billing office may be able to help you in that regard. You may want to discuss that with your insurance because they may not cover future problems if you use something they don't approve. That is why I recommend you try and appeal it and show them it is used now in the United States.

[Kelly4ADR]

Welcome Mike! You found the right place for some sound advice.

I read your story and I could relate on a couple things. Should or shouldn't you have the surgery?? That is really between you and your surgeon but here's my take... I have personally been through the rounds of severe pain then feeling better, thinking it wasn't that bad. But it was that bad. I let it go for so long that my scope of activity got smaller and smaller and I didn't even realize how my life was being affected. I think the longer you put up with it, the slower the change and pretty soon pain and limited movement just become the norm. There is no way for a surgeon to judge your quality of life. That is your call, with the input of the people in your life that can see you suffer. Often times when DRs looked at my films, they were shocked that I didn't have worse symptoms such as balance issues and dropping things, but I didn't. My point there is that the films can be looked at objectively to say this or that, and it is a very important piece of the puzzle, but we are not flat images on a screen, and you need to take into account all the info, quality of life being a big one. Don't wait until you are really really bad, like I did. If I would've had surgery a few years ago like suggested, I may have only needed one disc replaced , not two.
That being said, it sounds like you have tried conservative measures first which is good, and often required by your insurance. I would look up what your plan says about artificial disc replacement so you are in the know. They will often want certain symptoms to be present along with "patient has failed 6 weeks of conservative treatment" etc. they want to see that you have exhausted all other possibilities. If you need help looking it up PM me with your insurance and I'll help you. Also, I have never heard of an insurance paying for ADR but not covering the Mobi-c. I would check on this too. The pro disc has served a lot of people well, but I would lean toward the mobi-c. I am a little biased, since I had two shiny new ones put into my neck last week.
Lastly, the claustrophobia, ugh. I too suffer from this, and as my neck symptoms got worse, so did my fears. T think it has to do with loss of arm function and feeling like I can't protect myself. Once I slid into a booth at a restaurant and my husband slid in next to me. I went to take my coat off and my arm got stuck. I panicked and I had to go outside. I was so embarrassed, I cried and I couldn't even eat my food. I have had several panic attacks since then, it's the worst feeling. Not too long ago I walked out of the grocery store, there was a couple behind me and when I tried to turn to see them I couldn't (my neck wouldn't turn very far). I got so panicked that when I got to my car I got in, locked the doors and sat for a while until I calmed down. Now that I've had surgery I'm planning on taking some self defense classes and shooting my gun a lot at the range to make up for 10 years of panic and stupid anxiety, jeez!!!

Again, my point is, quality of life can only be measured by you. Are your symptoms going to get better by waiting? Probably not. Are your symptoms going to get worse over time? Probably. If they don't get an ounce worse, are you content with dealing with the bouts of pain? It doesn't sound like you are.

So there is my long winded round about answer. I hope something I said was helpful!

[Disky]

Thank you all so much for chiming in! I think I'm going to pull the trigger this week but want to give it a little time to be certain. I guess if I had a few specific questions they would be:

1. Is the Mobi-C worth fighting for? What is the difference between the two? I intend to go and look this up myself but for those of you out there that have had one or the other, why do you recommend specifically?

2. For those of you that have had the procedure, how did it do for you in terms of alleviating pain, restored range of motion and stopping crippling muscle spasms/trigger points.

3. How long was the recovery? How long did it take to tell if it 'worked' at least in the short term?

Thank you for sharing your experience with me! It is tremendously helpful!

[jss]

Mike,

As someone that doesn't have either of the devices you're looking at, I'll go ahead and answer.

I don't know if the Mobi-C is so much better than the ProDisc-C that it's worth the hassle of insurance appeals (that you'll almost certainly loose) to try and get it. The Mobi-C was designed to address one of the problems that is inherent in the ProDisc; overloading the facets on cervical extension. I haven't seen any engineering or kinematic comparisons to how much better it is; only that it was designed to be better in that area.

I woke up (from all three cervical surgeries) with all pre-surgical symptoms gone. A lot of us have that experience and a lot of us take weeks and months to get over the pre-surgical symptoms. BTW: that is not a result of ADR, but a result of the neural decompression, which is done when you have fusion or ADR.

For me I knew that decompression worked before I left OR recovery. To know if it works long term requires, well, long term time. I know my double ADR is good for five years. I won't know if it's good for six years until Nov 25, 2015.

You're going to do great. Good luck!

[drewrad]

How good are the condition of your facets? You mentioned arthritis. This is important, even moreso if you are considering ProDisc.

Were bone spurs mentioned? You want a neuro who can artfully deal with the entire spine and not just ram an ADR in you. One who can get in there and clean and debride the entire area. You want enough clearance for your nerves with all of your anatomy, not just a flat disc.

If you are a one level, I would see if you can get into the cervical M6 trial. Then you wouldn't have to worry about insurance altogether.

[Disky]

Thanks for your reply! My understanding is that the facet joints look really good so there doesn't seem to be an issue there thankfully. I got this from multiple surgeons so hopefully they're right.

Yes, I do have bone spurs also but my understanding is removing them is standard procedure for ADR is it not? Either way, the surgeon I'm inclined to go with Dr. Bae is a prominent ADR surgeon from what I undertsand so I don't think he's going to be 'ramming' anything I hope!

Still trying to get more data in the Mobi-C is it really that much better? How much long term data is there for it - does anyone know?

Thanks!!

[Dema]

Hi Mike, from your initial post, it sounds like Dr. Bae prefers Mobi-C, and may help to ask his opinion on this. From my reading, the Mobi-C does not have much of a keel, compared to the significant keel of the Pro-Disc. This helped the Mobi-C get FDA approval for 2-levels (probably only one!).
There is also a clinical trial of the M6 in USA, but it is for patients with only 1 disc level with damage (I have 3 levels, so I was disqualified), not sure if Dr. Bae is participating in the M6 trial, I applied with Dr. Lauryssen in Los Angeles area.
Best wishes,
Dema

[Disky]

Thanks, Dema! Bae does prefer Mobi-C but, full disclosure, he's somehow involved in that making and/or marketing of it. He's said he's completely comfortable with the Prodisc but I'm trying to figure out if it's worth it to fight insurance for Mobi-C. One surgeon I saw said he would only do Prodisc since it's the one we have the most data on, for example.

I think I might call and schedule today or tomorrow so if you or anyone else has more thoughts or idea, please chime in!

THANKS!

Also, Dema - are you still holding off on surgery for any particular reason?