Hi Everyone,

It's been a long time since I visited here, but now that my daughter (29) is finally covered by Medicare, I was hoping to see that others on SSDI (disability) are having ADR covered. I've read some older posts and have seen some press about Medicare covering people under 60, but no one seems to be discussing actually having been approved or having the surgery.

If anyone has any suggestions on who to contact to get more definite information, I sure would appreicate your help. Reading your stories of successful ADR surgery gives us hope that Emily will someday be in the same category.

Thanks so much!

Betsy

This is a question that I have been thinking about too - a lot. My question is whether Medicare will cover a single level L4 or L5 ADR for a Medicare beneficiary under 60 years old. According to their own ruling they are "only" excluding those 60 or over. We know by reviewing 'ADR-Friendly Insurance Companies' in this forum, that Medicare has already approved ADR, for at least one person.

Therefore, if your daughter meets the criteria, L4 or L5, under 60, single level, I think Medicare must follow their own policy. Obviously, they just used this 60 year old "myth" to get out of paying for coverage, for the majority. The research did not cover this group, so Medicare promptly excluded the majority of their beneficiaries. Very typical for SSA. No research of their own, just an easy way to achieve non-coverage.

I would just contact Medicare and read their policy back to them (you can Google it) and ask them to cover one of the two FDA approved ADR's. They must follow their own policy, it's in their POM's. You may have to hire an attorney to have SSA "own up to" their own policy but it should not take too much legal time. Frankly, I think the media would love this story. The key in my mind is that you must be a single level at L4 or L5 or SSA will weasel out of it by being inconsistent with the FDA approval language... I think an SSDI attorney would contribute free legal time to facilitate this process if the media was involved.

Once several single levels have been approved by Medicare, my next question is whether a two level will be covered? The FDA studies allowed for two level procedures and they were successful. Once several single level successes have occurred, I think SSA will have a hard time not covering two levels.

I hope others comment.

Hi Epiphaknee (love that name!)

Thanks so much for responding. Sorry it took so long for me to get back to you.

I'm really surprised that there aren't more disabled people on Medicare looking for information about ADR coverage here.

My concern is also about coverage for a 2 level ADR since my daughter has definite DDD at L4-5 and L5-S1... even L3-4 has been a little suspicious during one discogram (not on a second one) although it still looks pretty healthy on MRI.

If Medicare will only approve a single level (say for L4-5), I wonder if they would also approve fusion for L5-S1 at the same time. That may be one way to get around the single level dilemma right now. If I understand what I've read here and there on the internet, motion preservation at L5-S1 isn't as critical as at L4-5. And, ADR at L4-5 might be somewhat protective of L3-4 in my daughter's case.

Again, thanks for your comment. I hope others will chime in also.

Betsy

I've heard the same about SI-L5 not being so critical about being fused. Especially with a motion preserving disc on top of that which will probably stop the progressive nature of DDD that occurs after fusion. Hopefully she will get straightened out. She is too young to be debilitated. Good-Luck.

Terry Newton

I don't want to be personal but exactly how did your daughter of 29yrs receive medicare? I think a lot of us here would like to know what the procedure is when our CORBRA runs out.

thanks for your help.

Hi Terry,

Thanks for the input and for the kind comment about my daughter. She developed lumbar pain when she was 18 but wasn't sidelined with it until she was 25. Now she can hardly stand, sit or walk for any length of time without the pain being so bad that she has to lie down.

She's had just about every treatment from least invasive injections to a spinal cord stimulator trial last month. No real relief from anything so far. Looks like ADR is her best bet for some kind of normal life.

I hope you're fully recovered from all of your surgeries.

Betsy

Hi Zorro,

I'm happy to fill you in. If you don't ask, you might never know what you really need to know.

For Emily, being approved for disability was a long process. She was turned down twice and finally approved by the Administrative Law Judge in Nov. of 2006. This is often the course of the disability process in Georgia. And, when the person is young, they want to stall as long as they can (IMHO).

She has several disabling illnesses in addition to DDD, the worst being interstitial cystitis. There's some consensus among the doctors she's seen that some of the severe pelvic pain and bladder symptoms she has may be due to both the lumbar DDD as well as the IC.

Regarding filing for SSDI... with spine problems, your medical records must be extremely thorough in documenting how your problems prevent you from functioning normally. Of course, pain and the inability to sit or stand for any length of time pretty much covers that. It would be awfully hard to work any full time job with those kinds of limitations.

Having a supportive doctor is a huge help, too. The doctor's notes as well as any letters that he/she might write on your behalf are VERY important. The more doctors you have seen who suport your need for disability, the better.

In Emily's case, she went to a disability attorney after her first denial. Eventually, the attorney received 25% of the back pay due to Emily as payment, but it was worth it as the attorney had a lot of experience with the judge that would hear Emily's case.

Once she was approved for disability, she automatically qualified for Medicare. Since she was indigent by that time, she also qualified for Medicaid which pays her premiums for Medicare part D (medication plan).

I don't know where she'd be without the help that Medicare is providing now as well as the small monthly check she gets from SSDI. As it is, she can't live on her own with such serious pain (or on her very small check), so she's living in my basement apartment. Some days she can't even stand long enough to take a shower. Other days she can't rise from a sitting position without help because her back "locks up." On a good day, the ton of pain meds she takes just takes the edge off the pain that she has in just about every spot from her waist to her toes. So, it's great that she can be close by for when she needs my help.

I strongly encourage people who will need disability to file for it as soon as possible. If you're still working, then you can't prove your case, but if you've been unable to work, you need to file ASAP because it's such a long process to approval.

I'll be glad to go into the specifics of the filing process and the different stages of consideration if you're interested. Just let me know how I can help.

Betsy

Betsy,

Thanks for sharing Emily's story. My heart goes out to your family.

Your help is invaluable to other members in pain and your selflessness deserves a standing ovation.

Justin

I agree:

My heart also goes out to you. Your sacrifices are commendable and I hope your daughter gets the surgery she needs to have a fulfilling life.

I've worked with people with disabilities for years and it is maddening to go through the process. They almost get you to the point of giving up as the process takes so long.

Hang in there.

Terry Newton

Hi,

I applied for SSD but was denied, now I am on a 2 year waiting list to hear my appeal.
If I get approved, I have so much back pay owed to me that I could go to germany and get it done even if Medicare didn't pay for it. Of course I'd rather have Medicare pay for it so I could afford to support myself again. I too am living in my parent's basement. It was a long fall for me...I'm much older and was a working professional when I got injured.