ADR dilemma, seek advice

[Jack]

My insurance company finally, after getting bounced around, gave me their general criterion for disc replacement. They said that if the device is FDA approved and is deemed medically necessary, they will pay their part with limits as stated in the policy. In general, it seems insurance companies tend to cover more stuff if it is in network vs out of network. Does anyone have information on a spine specialist on the east cost that does disc replacements?


My options at present seem to be:

Go to Stenum at get disc replacement or go to India. Stenum has seen my records and said they could do either the M6 or Maverick. After losing so much money in the recent housing collapse, I could come up with the cost but would have to finish off my home equity and sell equipment in a down market. We could pull the money from my wife’s retirement but I can’t ask her to do that, especially with penalties. Since construction is in the dumpster and I can’t work as a PA while taking narcotics, my wife has to work full time. For the time being, I have been the mister mom (I hate housework). Our son has schizophrenia and depression and is just now getting stable on meds (psychiatrist and psychologist once a week and 10 days in a psychiatric hospital earlier this year for suicide threat, a cutter) since he started having symptoms two years ago. Mental health is $$$ with very little covered by insurance (2,000.00 year, $10,000.00 lifetime cap). We adopted him from a very poor orphanage in Bulgaria when he was four. He had never been in a car or seen a flushing toilet. There were 14 others in his group, all the same age. Wish we could have kept them all. Just goes to show how unfair life is for kids. If God made one mistake it was making reproduction so pleasurable. In worst cases, the innocent kids pay for their parents (poor choice of words) desires, rape being the exception. Anyway, my wife would have to take off from work and stay with our son. I would travel alone to Germany. As much as I would chose to pack up and go tomorrow, stuff is not always about me. I am very impressed with Stenum to date.

Try to find someone within our in network to do ADR with insurance approval at a $5,000.00 deductable.

Find someone out of network in the USA with insurance; pay $5,000.00 deductable and ½ of what is billed. This could equal the total of going to Germany.

Get fusion and pay $5,000.00 deductable.

Go back on high dose narcotics.

I waited close to two months for my aptointment with a neurosurgeon only to find out he does C-spine ADR but not L-spine.

The status quo is not acceptable. I’m at the end stage of tolerance.


I’m open to any and all suggestions.

[Harrison]

Jack,

A few quick thoughts, ideas & questions…

• Are you “at peace” with your spinal diagnosis? What is it?
• Do you have enough opinions from different spine surgeons?
• Did you get enough evidence to show that your facet joints ARE NOT arthritic? (Read the first topic in this forum again, if you can stand it, on contraindications and risks).

I recall that one of your recommendations is a one-level ADR. If this is the case, there are many qualified & experienced arthroplasty surgeons on the east coast, even in your state. Given your concerns, and if it’s paid for here, why not have surgery state-side?

[cls]

Jack,
Would you consider being a part of an ADR clinical trial in order to help with the financial aspect? I am sure that this has crossed your mind so maybe there is a reason why you have not added this to your options list. I wish you well and may you find the best solution soon. When you know that you need surgical intervention then I do think it is best not to prolong the procedure. Just my humble opinion.

[Jack]

Harrison,

Thanks for the reply. As far as being sure, I figure disc replacement is my best option, it is just a matter of where and when. You were right in that my current problem is L5-S1. The discogram was interpreted as 10/10 concordance with pain. Discs have sensory nerves too and can hurt. Recent MRI revealed isthmic spondolisthesis of L5 on S1 with potential trouble at L4-5 and L3-4. This is why I have put fusion as a last resort. I read, with interest, the discussion here on ADR vs fusion, at L5-S1 noting that this level doesn’t move much but it does move. With two more levels limping along, I don’t want to put any more on them if I can help it. In fact I had the following discussion with the neurosurgeon’s PA that I saw last week. She said “Oh we have had people with backs like yours that have made it as long as 12 years before they have to have more fusions done”. Maybe I took that the wrong way but the fact that another fusion later on is in the cards for the next levels makes me want to avoid the first one. Except for my age, and a bit of facet disease, I can easily meet the rest of the current standards. The facet disease was not quantified; however facet injections and medial nerve ablation didn’t have any effect on back pain.

I think sometimes those that perform studies on medical devices tend to try and cherry pick the patients for their studies with stringent exclusion criterion like the age 60 or over rule to get results in a more favorable light. This would be hard to prove but considering human nature and the money involved I would be suspicious. Another perceived problem with strict exclusions is that the standard of care use by insurance companies and surgeons is set higher than need be leaving many patients stuck with 40 year old technologies like fusion. Given enough time and successful outcomes, the less than perfect patients have a chance. I am (or was) an active male, in fact before this very active, and still not overweight, etc. I am in better shape than most 40 year olds.

Multiple sources have indicated that ischemic spondy most often occurs early in age (6-12). Isthmic spondylolisthesis also has what’s called a pars defect that is really a fracture of the thin boned pars interarticularis. The ligaments and visceral muscles holds things into proper alignment until age allows the disc to dry out, disc height shrinks and puts strain on the facets they were not designed to handle. If I had progressive slip progression I would probably skip disc replacement and fusion and go back on higher doses of narcotics. I have had no slip progression and MRIs of four years ago and at present are the same in all areas. What I have found out is that once a new replacement disc with normal disc height is in place, it takes some of the strain off of the facet joints, etc. As a side note, I was reading earlier in a doctor’s office about a procedure now coming on line for facet joint repair.

My insurance company has told me if a procedure is FDA approved and medically necessary there is good chance they will approve it. I am now searching 1st for someone within a reasonable distance who can do the procedure and accepts my insurance, 2nd anywhere that accepts my insurance, 3rd anywhere in the USA who would be considered out of network but insurance pays 50%, 4th span the globe.

I have talked to one of the three spine specialists I say in 2006. He is at a highly regarded teaching hospital that conforms to the state of the art. He admits he has not done lumbar disc replacement but wants to get into doing it. I told him my search is on going and I trusted his skill and judgment, respected is candor but naturally would prefer experience as well.

cls,

I’m not exactly how to go about getting into a study but my best guess is my age would keep me out. I would love to do it if available.

[cls]

Jack,

I just did a quick search for ADR clinical trials and found one on clinical trials dot gov -- http://clinicaltrials.gov/ct2/show/NCT00589797

I just quickly looked at some of the criteria and they are accepting patients in the 18-60 year old age range. Did I ready you are 60? If so, perhaps this is worth exploring.

Hang in there and keep searching for the best solution.

Oops, just read it more thoroughly and it says that the study is on going but not recruiting. BUT this is for just one type of implant. Surely there are others.

[beasage03]

just saw your message...our son had adr in phila with pennsylvania hospital.
if interested in additional information, please contact us.
hope you are feeling better!