Medicare coverage for ADR?

[betsyb2]

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

[epiphaknee]

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.

[betsyb2]

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

[Terry]

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

[ZorroSF]

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.

[betsyb2]

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

[betsyb2]

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

[Justin]

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

[Terry]

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

[LBP]

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.

[ZorroSF]

Thanks so much for replying. Stick with this forum a little while and someone will reply back in a similair situation that your daughter has with medicare. Every situation here, no matter how grueling and frustrating always sheds a little more knowledge on this shadowy insurance industry, regardless of provider.

[LBP]

Betsy

What happened with your daughter and Medicare coverage?

after a very long wait, I just won my appeal before the administrative law judge and will hopefully be getting my checks and medicare information soon.

Did your duaghter's Medicare cover a 2 or 3 level ADR? or a hybrid ADR/fusion surgery? where did you have it done? which surgeon?

I'd also love to hear what plan your daughter elected...did she stay on the Original Medicare plan or one of the HMO/PPO privately administered Medicare approved plans?

[Harrison]

Congrats, LBP...you've worked hard for this!

[LBP]

Thanks Harrison.

BTW...does anyone know the ins and outs of Medicare and how to best maximize my chances of getting ADR approved????

So my question is..if you sign up with Aetna's Medicare plan, does Aetna influence the claim process with the gov't system? Is it easier to get ADR approved if I sign up with a Medicare Part C plan through Aetna vs a Medicare Part C plan through BCBS, UHC or other horrible companies?


Part A Medicare (hospital coverage)
Part B Medicare (health care coverage)
Part C Medicare (private medicare approved plans which supplement A & B and sometimes D plus other goodies for higher premiums)

Part D Medicare (prescription drugs)

[LBP]

does anyone have experience with a medicare private fee for service plan? (PFFS) Did you have trouble getting drs to accept you as a patient with a PFFS medicare insurance plan?

[epiphaknee]

I think the following post sheds insight on getting approved by Medicare with an Aetna PFFS plan.

See:http://adrsupport.org/eve/forums/a/tpc/f/3511036081/m/8871082803?r=8871082803#8871082803

This individual was approved for a two level Pro Disc with Aetna's Medicare PFFS plan, in the March or April 2008 timeframe.

As of April this individual is recovering from surgery but once they heal a little more I hope we can learn more from their experience - first hand.

In the interim we can all research if we can secure the Aetna insurance in our state, whether there is a specific enrollment period, etc. I was reviewing Aetna's site on the web and it looks like you can enroll online and/or discuss the plan with an Aetna representative M-F.

Just wanted to throw this information out there and hope others will comment. This would be a great asset for those on Medicare that need multi-level ADR. Of course, your mileage may vary.

[LBP]

Yes, it's me. I just had a 2 level prodisc at l4/5 and l5/S1. I was pre approved under a private Medicare contracted health ins plan.I know my particular plan was offered only in limited areas, and I selected the most expensive monthly premium plan offered by this company. It's a premium over and above the monthly medicare costs but in comparison to many Cobra premiums it's much less in total.

Also, I selected one of the surgeons that was one of the investigators of the Prodisc, I have no idea if any of this matters or that it's been 7 years since I was injured. Who knows.

I was shocked when I got the approval. I didn't know what was going to happen but when I looked at the list of companies offering comprehensive medicare plans, I selected the one that I've read here has been most consistent in covering ADR.

The Aetna Medicare plan offered in my area, was a PFFS which stands for private fee for service. It allowed me to go anywhere and to anyone that accepted Medicare. there's no network/out of network or out of state issue. It's just up to the individual provider/dr to decide whether they will agree to accept me as a patient and the provider/dr can change their mind at any time I seek additional care.

[sahuaro]

Congratulations, LBP! You did it! I hope you are doing well.

[LBP]

Thanks sahuaro. I am doing fine. It is such a painful recovery. more than I expected even after reading all the posts here. I am supposed to be mobile but something I did today way overdid it....took about 8 hrs to get back into the lower level of pain on percocet. I am absolutely dreading the plane ride home next week. I cant imagine how difficult it will be and how long it will take for the nerves to calm down once I am able to lay down in my own bed.

Well it has been a very long and very frustrating road to get this surgery. To others still fighting, keep looking for ways to get what you need. Don't give up. Look for new alternatives whether it's applying to a different insurance plan at your current job, changing jobs to get different insurance, research what plans are avail to individuals in your state and paying premiums out of pocket on an individual plan, see if you qualify for Social Security Medicare Disability and if so what plans are offered in your area etc. Do what you have to, to get to where you need to be to get the right insurance, right surgery, and right surgeon! It took years to finally get my SS disability award after being denied and filing an appeal. Once I won the appeal it still seemed to take forever to get my Medicare health insurance benefits and monthly checks. It's by no means a quick or easy fix but for me I was at rock bottom with no other options and so I just had to wait it out.

For now I am focusing on my recovery and then I will have to start putting my life back together including dealing with the financial disaster I am in as well as the damage to my career I've endured because of this stupid delay in getting my health back. I'm just taking one step at a time.

[Terry]

LBP:

Congratulations on a successful surgery and getting someone else to foot the bill. That is awesome. I know how it goes though with having enough money come out of your pocket you wonder who else is standing in line to take your last dollar.

Hang in there with the healing process. It is common to overdo it. I payed my dues down that road.

Please keep us informed.

Terry Newton

[CindyLou]

LBP, I ditto Terry. One day at a time. Focus on your recovery first. And big congratulations on making it to the other side! It is a long time coming and well-deserved, that's for sure. Keep us posted by and by.

[phylly]

LPB,
More congratulations! Take it easy, it is a painful recovery and you are just starting but you should feel better soon. Please let us know how you are doing.
Phylly

[Liz]

congrats LBP! your perseverance is very inspiring to people, but it shouldn't have had to be that way. US healthcare infuriates me.

hang in there... i had a difficult surgery too. i can't imagine those that wake up "pain free" especially with 2 keeled ADRs. how much did you grow? i grew an inch and that hurts in ways no one can explain until you feel it yourself. you become so aware of how everything in your body is connected after ADR surgery. you can also separate muscle, disc, bone, nerve, facet, ligament, SI pain. i wish i was not part of this elite group of company!

if you're still struggling next week i'd recommend "borrowing" a pillow from the hotel if you don't have an extra. i'd also recommend reserving a wheelchair at the airport to get you from the curb to the gate which can be a very long walk (but then walk on the plane)... also will let you bypass security line. you can then sit on the pillow in the wheelchair and use it on the plane. i rec pressure against your incision on take off/landing.

i hope your pain levels start to drop soon.

best,
liz

[LBP]

Hi Liz,
Good ideas. I have called the airline and asked for wheelchair assistance. I will be taking my walker on the plane as far as they let me. I do have a pillow from home with me. I wasn't going to bring it on the plane but now I think I will!

I cant remember how much my surgeon said I grew but I told him that I was experiencing very stong painful growing pains in the hip flexor thigh area in addition to the constant sciatic numbness up and down my left leg/foot. It's improving ever so slightly.

The surgeon said he had one patient surfing 10 days after surgery! I couldn't imagine that! Just walking a few blocks 4-5 times a days is exhausting for me.

All in all I am staying postive and feel good about the recovery even though it's difficult. I do feel like these issues will resolve. I've wanted this surgery so bad for so long and my surgeon stresses giving it 6 weeks before considering a pain management physician, so that's what I'll do.

[Terry]

LBP:

You just had major butt kicking surgery. I remember being exhausted and worn out very quickly and having to go back to the hotel room to sleep. I wanted so bad to see more of Germany as it is such a beautiful country. The primary thing is to take care of yourself and listen to your body. You are absolutely correct that these issues will resolve themselves. It just takes a little time.

Hang in there http://adrsupport.org/groupee_common/emoticons/icon_biggrin.gif

Terry Newton

[chasswen]

lbp
give your body at least 6 to 9 months. my leg and feet stuff are still improving 19 months out.
just hang in there listen to your body and let the force heel your body force (god) http://adrsupport.org/groupee_common/emoticons/icon_smile.gif
at 6 weeks you should see improving and again at 6
then it slows abit but over time you will see it.
hugs chuck

[eileen gallagher]

HI LBP,
I also wanted to let you know that not everyone wakes up painfree, but don't fret. I had a 3 level ProDisc ADR (Bertagnoli/Oct 06) and my lower back pain was gone shortly after surgery, I still have some leg pain. My son had a 2 level ActivL surgery (Zeegers Jan 08). He was in great pain as soon as he woke up from the surgery. Even Dr. Zeegers said 'this is not usual'. However, my son could not bend at all before his surgery. He had not had any physical therapy and was like a board. He did have PT post surgery and one day he woke up and the pain was "gone". He went back to work in 2 months to the day. so there is hope. From speaking to patients and Drs there is an issue when the ligaments, tendons and muscles shrink due to DDD. When you stretch them during surgery, they can be very painful. I had extensive PT and something called Graston Technique. It involves stretching and releasing the above using instraments. I know several ADR patients that have used this to relieve the pain post surgery. I also recommend equipment based Pilates. Good Luck!!!!

[LBP]

I am familiar with Graston tech and a big fan of pilates equip based exercise/stretching so that is what I hope to do when I'm allowed to start PT! That's what I hope will make the difference!

[Deborah]

We have Medicare primary and a standard 'medigap' add-on insurance to pick up the difference (between % between what Medicare approves and total amount Medicare has approved). Hub is 42 years old and meets criteria for ADR; we discussed at length 2 level ADR v. hybrid, but decided hybrid made sense (jury still out on if there is a definite preferred for those 2 levels done together, in my opinion).

Hub had hybrid surgery March 3 - L4/L5 Prodisc and L5/S1 fusion. It was discussed at length with Medicare prior to surgery (Nov 12 - Jan 22) with myself, the doctor, CMS and the doctor/contractor for CMS. The doctor worked very hard proving it was necessary, but did win a tentative 'we would cover if done as described' decision.

We all still held our breath - the total bill was well into 6 figures. This week we got notification Medicare had paid, and the add-on paid the difference as required by law/contract (the amount paid was based on Medicare contract, which was the amount the hospital billed for all services).

It would have been impossible to do without the coverage, unless we sold our home. As it is, we cashed in most of savings to cover incidentals along the way. Surgery took place March 3, and hub is off meds (other than occasional muscle relaxant) for 2 weeks now. Prior to surgery he was on 60mg oxycontin 3xday plus break throughs; after surgery it was 20 mg methadone 2xday, within a week 10mg 2xday (plus dilaudid break throughs) and taper from there.

He's still quite weak and is just about to get into PT (he honestly hasn't been able to go regularly yet). He is able to putter around the house a bit most days and he's 'all there' mentally. We can have friends visit again, and life feels so much more normal, with his strength and abilities improving every day.

2 years prior to surgery he had hit the low of being basically bedridden - accident causing injury was in 2001 and he'd tried it all from minor surgeries to electro stim implant 2x, all kinds of meds, all kinds of PT. Tests in Sept 2008 (CT, MRI and discogram) all pointed to the problem being L4/L5 and L5/S1 with the rest looking healthy. All of this I would assume contributed to the approval. I have no doubt the results would be the same with someone of any age ... the age cutoff seems ridiculous.

I hope the information can help someone else!

[Jack]

Am I right to assume that those of you with Medicare are 65 or older?

[LBP]

Jack,
No, I have MEdicare starting in my late 30s through Social Secruity Disability. I was forced to file for disability when my employer provided insurance via COBRA refused to pay for my surgery. I found an Aetna Medicare Advantage plan and they ended up paying for 2 level lumbar Prodisc surgery in 2008.