Hello, future 3 level cervical ADR patient

[robertr2112]

Hi Everyone,

My name is Bob and I'm currently scheduled to have a 3 level (C4-C7) ADR with the Mobi-C done by Dr. Blumenthal at Texas Back Institute on 12/6.

As the date gets closer I'm getting more freaked out about the surgery. (Maybe I'm reading TOO much on this forum.)

As a background, here is my history.

I was involved in a car accident in 1997 that ended up causing whiplash and two years later was diagnosed with a herniated disc at c5-c6. They recommended a fusion surgery but I declined. My initial symptoms were major muscle weakness in left shoulder/arm.

Instead I started an, almost, decade long approach of Chiropractic/acupuncture/rehab that has been mostly effective in managing my symptoms and returned most of my strength to the arm. Unfortunately, the problem continued to deteriorate and I started to have pain radiating down both my left and right arms.

In 2007, I finally went to a neurosurgeon who I had read was, finally, doing cervical ADR. Unfortunately, my MRI showed I now had a two level problem (C4-C6) and only one level ADR was approved in the US at that time. So, no luck.

I returned back to my rehab approach and waited. In 2013 my symptoms got more severe. Major pain along both arms (thumbs, elbows, and shoulders) as well as muscle spasms all over the same areas.

I started getting epidural steroid injections in November 2016 and they immediately relieved my of all symptoms. However, it didn't last long. I have been doing the injections every 3-4 months for the past 2 years. And recently I've had some new symptoms appear even after the injections, and the injections are not as effective as they were initially.

So, In October I went to see Dr. Blumenthal and after a review of the MRI I now have a 3 level problem C4-C7) And he recommended a 3 level ADR using the Mobi-C.

And now back to my freaking out....

I keep reading about all of the potential HO issues(never even heard of that until 2 weeks ago, Dr. Blumenthal never mentioned it) and other potential problems/complications from the surgery.

I am now terrified that having the surgery will have me leaving a manageable (although very life limiting and still sometimes quite painful) situation and enter a possible unknown one that is not manageable at all.

I'm not sure if I should be proceeding with the surgery or keep waiting it out while it is still mostly manageable.

I'm hoping some of you on the board can help steer me in the right direction, because at the moment I feel completely lost. I would love to get back to some semblance of normal life but I'm not sure surgery is a guarantee of that outcome.

Thanks for listening.

[phillyjoe]

I had 3 level cervical. Like you, I waited years and tried to stay fit and manage. I had hoped that FDA would act faster than I would deteriorate. That wasn't happening. Didn't want fusion, and knew that I would only get worse by doing nothing. Now I wish I had done it sooner, might have spared one level of the 3. So the choice is actually relatively easy when you step back from the details.

The longer you wait, the more chance something goes wrong that might disqualify you from ADR or that nerve damage becomes longer to heal, or not heal at all, following surgery. All surgery has risk, HO might turn your ADR into a less mobile device....but what does the research say about HO? Is it a risk that is apparent from looking at MRI's or does it really manifest itself in a practical problem like pain from a failed surgery? Plus, there are things that you might be able to do to lessen its possibility.

Yes, you might have vocal cord damage. Yes, you might get an infection. So many what ifs. But you do what you are already doing. Research, and picking a great doc like you have and a great place like TBI. It is a risk /reward trade off. Imagine if you are pain free for the rest of your life?

Does it make you feel any better that TBI disqualified me for ADR at any level, let alone 3. Clavel, God bless him, took me on as patient and gave me 3. I am recovering from a serious whiplash type injury 2 weeks following surgery, that gave me 8 staples in the back of the head to close the wound. But I am still doing better than I was pre surgery, and now I have peace of mind that these discs don't easily move out of place! Actually, I am a lot better than before surgery, since I have faith that things will get better with time, PT, etc and not just get worse.

Good luck with your decision. Trust your instincts. PM if you have specific questions. By the way, many successful patients, don't post often, since they are living their lives.

[JinSong]

Wait wait, how are you guys paying for this if 3-levels aren't approved? Self-pay? I'm curious because I'm getting back on board and trying to figure out how to just get a two-level revision done. Show me your ways!

[annapurna]

The basic couple of points:

You should be freaking out. This is a big surgery. If you weren't worried, there would be something wrong with you that no ADR could fix. Don't drag yourself down telling yourself that you shouldn't be worried. Take the energy that your worries give you and see what you can do to give yourself facts to deal with worry.

Second: ADRSupport (Thank you Rich for creating this board) is a great place to learn and give you questions to ask your surgeon. It is a lousy place to figure out the probabilities of a successful surgery or likelihood of any given problem showing up. People who have successful surgeries may not even join the forum. Instead they read posts as a guest, have a successful surgery, and move on in their life without any record in the forum of the success story. What you're seeing is primarily those who have complex problems going in or less than perfect successes coming out. It's like getting your surgery success statistics by reading over the list of those who've sued the local hospital. Or, given the recent elections, like calling 100 people in Alaska and 100 people in Massachusetts then going on the air and talking about how your poll showed the country is deeply divided.

As for when to get surgery: I can't tell you this but I can point out that you're no longer in a stable situation. Steroid injections are seriously damaging and should not be used for long times. Even if they weren't, they aren't helping you now as much as they did to start, so your condition is deteriorating. To me, that says you either need to commit to the surgery or find another conservative care route that picks up where the steroid injections are no longer working. I can't think of anything to suggest but that's the way I'd look at it if it were me.

Side note: most of the really seriously bad stuff that can happen during and post-surgery become more likely as the damage in your back increases. ESIs, in particular, are linked to arachnoiditis, which could seriously mess up your life even if you did have a successful ADR surgery. You've unfortunately reached the point where every path before you has some real risks, even doing nothing.

[phillyjoe]

AP, you are correct and I did not intend to minimize the OP's concern. He should however focus on facts and weighing of risks. As you point out, things are not likely to get better on their own as time passes in his case.

to answer JinSong, many of us, including me, self paid. Yes, I likely gave up a few new cars in my life! but I hope to regain quality of life that makes me enjoy walking more and being able to turn my head without pain to look at landscape from the window of my older car!

[Harrison]

Bob, you can see some helpful posts from your new friends here. I hope we can help you in all the days ahead.

Dr. Blumenthal is one of the few spine docs that I know personally and professionally -- you are in good hands.

Now, your homework:

http://www.adrsupport.org/forums/showthread.php?t=11053

[robertr2112]

Thanks for all of the input everyone! It has been very, very helpful.

JinSong, my surgeon (Dr. Blumenthal) is telling me that my insurance (Blue Cross and Blue Shield of Texas) will pay for a two level cervical disc replacement. I'm coming up with the money for the third level (which is just the surgeon's time and the cost of the device itself.)

Of course, they have yet to approve the procedure so I'm just going by what the surgeon's office is telling me.

After all of your input and speaking with Dr. Blumenthal again, I'm convinced this is the right path. The only thing keeping it manageable at this point is the steroid injections and I've already pushed that beyond the point where I'm comfortable. Which is why I scheduled surgery. I just needed a little more factual data on outcomes and Dr. Blumenthal helped me through that.

Thanks again for all of the information and I'll keep everyone posted on how it goes. I know others post surgery stories sure helped me.

And Harrison, I'll get my homework done today.

[JinSong]

Originally Posted by robertr2112

Thanks for all of the input everyone! It has been very, very helpful.

JinSong, my surgeon (Dr. Blumenthal) is telling me that my insurance (Blue Cross and Blue Shield of Texas) will pay for a two level cervical disc replacement. I'm coming up with the money for the third level (which is just the surgeon's time and the cost of the device itself.)

Of course, they have yet to approve the procedure so I'm just going by what the surgeon's office is telling me.

After all of your input and speaking with Dr. Blumenthal again, I'm convinced this is the right path. The only thing keeping it manageable at this point is the steroid injections and I've already pushed that beyond the point where I'm comfortable. Which is why I scheduled surgery. I just needed a little more factual data on outcomes and Dr. Blumenthal helped me through that.

Thanks again for all of the information and I'll keep everyone posted on how it goes. I know others post surgery stories sure helped me.

And Harrison, I'll get my homework done today.

Hi Robert--I actually spoke with Dr. Blumenthal's office as well. I'm glad you got your procedure covered--that's a huge win. I'm out of luck because I already have one level fused (even though it's failing), and they told me they can't reverse the fusion, and if they add an ADR above and/or below the fused level, it's considered experimental, and no insurance will cover it. I'm screwed.

[phillyjoe]

have you contacted dr michael chang yet?