Out of Options and very depressed...
 

Hey Everyone,
I saw Dr. Zigler today. The clinical trial for the Freedom Disc has finally started, which was what I have been waiting for. I signed up for the trial and did the paperwork today. The research team said that everything looked great and I was a good canidate and would have an answer today. Well, I got my answer.... I qualified for all of the criteria; except previous litigation. Since I hired an attorney and settled (out of court) for my wreck, I am disqualified. I am so upset, I have cried my eyes out. :( I talked to Dr. Zigler's administrative assistant after this and asked about other options. She said that Unicare, my insurance carrier, is not paying for any ADR's. So, I can wait until they do start paying (chancing my mild/moderate facet arthritis to get worse), pay cash (not an option, unless they will take my big savings of $1,500), or have a fusion. I don't even know what to do. I am almost willing to have the fusion just to get out of this pain, even though I know I will end up with more problems, especially since I'm only 28. So, I guess this is it for me, either have a fusion or suffer for the rest of my life. I am so sick of fighting for approval, not just insurance; but trying to get social security disability and being denied twice; just life in general. I wish I could just be knocked out and not have to deal with this.
Kathy

That Sucks
 

Hi Kathy

I am so sorry. Wish i could pay for your surgery,Please be strong, positive,we all care about you.I know others will chime in.
I am pulling for you with prayers.

Talk soon

Gil:(

Gosh Kathy, I am sorry about the news. You have a full plate that sounds stressful and very emotional. Health issues can interfere with every aspect of your life, and when you find a "solution," it is devastating to be shot down.

My insurance did not cover my ADR. I had to sell my brand new Toyota Tacoma at the time, and I had to borrow money from family to afford my surgery.

I wish I could offer an easy solution. However, what I can offer is from personal experience: don't make any decisions while you are emotional. Give yourself some time to process all of this and what your plan of attack / next steps will be.

With all of the smart people here, we'll pull together and find other paths for you to pursue in your quest for proper (and necessary) medical care.

God bless you and your family. My wife and I will be praying for you.

Litigation exclusion is to remove 'secondary gain' patients who may benefit more from a poor outcome.

I don't understand how a case that is not pending puts you into an exclusion category???

I just checked Axiomed's website. They list any previous or current litigation related to spine. Was your litigation related specifically to your spine?

Yes, it was for the T and C spine, not even the L spine. They wouldn't cover the L spine, because I was in a second accident. They said the second accident caused the L spine and since my idiot dr's didn't do an L spine MRI until after the second accident, there wasn't much too argue.

It sucks, I don't even care about the money, I just want to be better. Sad thing is, the little bit of money I got, just barely paid my out of pocket costs. No reprucussions for ruining someone's life.

settling out of court
 

Kathy,
I don't mean to pry tho I'm just wondering if by settling out of court this allows you the amount money that you would have been given for the fusion surgery? If so would you be able to consider traveling to have surgery done somewhere (another country) where it might be half the price or something like that? ** oops I just read your reply above so think I have the answer there.

The good news appears to be that you are a candidate for the ADR surgery so hopefully something can be worked out financially, somehow, somewhere, someway.

I'm so sorry to hear you weren't informed sooner as to that litigation clause or it wasn't emphasized or bolded or something to make one inquire as to whether it would matter or not. I hope something wil work out for you soon but don't lose hope. This is all just one more hurdle to get thru

Hang in there

I agree Kathy--forget the freaking money, I want a new spine. I was awarded a settlement for my 2nd MVA and it didn't even cover my out of pocket expenses.

It's amazing how fast morons in cars can completely change your life--for the worst. :mad:

Kathy,
I am so sorry for your denial. I know this may not make you feel any better but I've had two friends who have fused the L5-S1 discs and they did extremely well. I hope that you can find a trial to be in and I don't understand the litigation thing because it was from your accident. I wonder if they have a compassionate side and you can still get the disc. I do believe in fate and sometimes things happen for a reason. Maybe you will get a better disc or surgery? I hope you can be out of pain soon.
Phylly

Reply
 

Kathy, what about other ADR trials with other doctors across the US? I wonder if all of the trials list the litigation as an exclusion criteria?

Also, might you be willing to reconsider Fibrin? Linda on the other board said that 80% are getting long term relief with the fibrin sealant. She only got worse again (5 months later) cause she has a super messed up spine (6 previous surgeries with misplaced ADR's) I can get you the ph# of the person that is running the fibrin trials at Dr Pauzin's office in tyler. This fibrin looks like it could be the "REAL DEAL". Linda swears by it. Why not try it if you are out of other options? I think you should. Im still reconsidering it. My risk is that if I am one of those it doesnt work on, Ill have to spend $25K to go to germany to get the ADR done. As it is now, my Aetna will pay for ADR but I have to decide soon as my Aetna runs out in Feb 28th. The cervical ADR's seem to very successful so I am still leaning towards ADR as a long term fix rather than gambling on fibrin working. Also, if I need revision surgery later, cervical revisions are easy. Lumbar revisions are life threatening! So, if I was you, Id try the fibrin. WHy not? You can fuse later if it doesnt work, right'
? Anyways, they told me to send my discogram results to tyler if I am interested. It wont cost you very much from what I was told by the lady running it. ($3000 I think)

Oh Kathy, I'm so sorry to hear that. Justin's right, don't make any decisions while you're emotional. Just *breathe* for a while and take stock.
Easier said than done, I know, but you still have choices so at least there's that to be thankful for.

Wish I had something more to offer. So sorry.
Take care,
Adrienne

Kathy, you have been given so much good advice, I can hardly give more. Just know that we are all pulling for you. I am really not getting that litigation clause either. Sounds like they think you're trigger happy, and don't want to chance you might sue them after surgery on your back. It's just nonsense. I went into a serious depression after my 3rd appeal was denied. We do get how rough these waters are to tread. So please hang in there. And like others said, don't make any big decisions till things calm down. God bless!

Cindylou

Kathy,

Sometimes life just plain sucks! You're caught between a rock and a hard place and there's little you can do about it. I have no words of wisdom and no advise other than calming yourself may not be as possible as everyone else is advising. You're angry, you're frustrated and you're in pain. Until your pain goes away, you can't think clearly but if you get yourself all drugged up, you can't think clearly. )*Q#$$%^*!!!!!

I feel for you and I'm sorry. I hope your solution is just around the corner, Dale

Thanks Dale, I just needed to be mad, sad, angry, pissed, and hating life yesterday. After a good drugged night of sleep, I feel better. It almost makes you feel bi-polar being on this up and down ride. One minute, life is looking good, the next it crashes down. I hate this and it sucks!

I may have found the light at the end of the tunnel, trying not to get my hopes up. I did find an active L trial happening in Florida, which is the original trial I wanted in; but it was closed in Texas. Dr. Garcia in Aventura Florida is doing it and there are 8 spots available. They don't have the litigation exclusion either. I talked to the research leader and it sounds like I will be a canidate, God willing. I am hoping to fly out next week to have a visit to sign up, be screened, see the dr and pre-op. Then, I could go back in mid March and have surgery. I may even be able to follow up with my own dr. Pray that this works out for me, if it is in God's will.

I do believe that God has a plan. I know that everything happens for a reason, who knows the freedom disc could never make it through trials. Maybe it isn't the best for my body. I may or may not ever know why this didn't work out. It still sucks when a door is closed. I pray that the active L is the path that I need to be on. I really don't want a fusion. I have had at least 5 dr's tell me to never have a fusion. From early on in my injury to current surgeons, I have been warned against it. I'm sure a lot of it has to do with my age which increases the likelihood of needing more and ending up with a spine fused from C to L. Anyways, if you pray, pray for me.

Thanks for all the support. (Kinda makes one feel crazy having to go through this; starting to question the little bit of sanity I have left.)

Well, that's encouraging news. I will be hoping for the best when you go to FL.

I have a question in general though, for anyone who knows the answer. When Kathy made the statement that she couldn't pay out of pocket for ADR, as she only had $1500 in savings, can a person not use a credit card? I am asking because this is what I was thinking about doing, if I chose to have the hybrid surgery and being told that my insurance won't cover ADR. I just figured that I would pay it off after surgery. Hmm, maybe with the risk that a person won't make it through surgery, they don't allow it. EEK.

The Little Train Who Could
 

Kathy,

I've got my fingers, toes, eyes and everything else crossed! :D This is going to work. :)

And yes you can use credit cards. I found several of those 0% interest for a specific time, my mother even borrowed for me and was 101 so guess they don't worry about not being able to pay. I'm still paying, driving used cars, etc., etc. But if you can't enjoy your money, it doesn't do you any good. I am very fortunate that I can afford the monthly payments.

Another thought for those who can't afford to pay out of pocket. Churches and organiztions sometimes will help people if you ask, either thru fundraisers or available funds. Asking is pleasant, but it won't kill us.

Is this something that a "group like us" could do? Ask companies like the device manufactures, etc. or other spiney's to donate to a fund to help when insurance won't pay. I know most people here have enough expenses with their own problems, but there may be people who could afford to help. Well, thinking doesn't help much, but seems like there should be some way to help people like Kathy.

Kathy, my dear young lady, think positive thoughts, we are all here for you.

I'm sending those 100 hugs by airmail along with a couple of cheek kisses ;). Good thoughts and prayers are coming your way, Sandy

Not only can you use credit cards but there are medical lending companies that specialize in medical care loans, though credit is tight... maybe a co-signer if you can't qualify. Also, the hospital bills you for the ADR. Maybe you can work out a payment plan with them?

Thanks for the clarification, it's a big relief. My surgeon told me that the portion of the cost, which insurance wouldn't pay, if I wanted the hybrid surgery would be about $8000.00. That is for Prodisc-L at L4-5 with insurance paying for fusion at L5-S1. Having the surgery all at once means that insurance would end up paying for all the incidentals for spine surgery in general, and all I would have to pay would be those things that are specific to the ADR. I guess that helps a little.

Kathy,
Have you been to Texas spine and Joint in Tyler yet? I am having better luck there so far. I understand what you are going through right now, and it pisses you off when there is hope and then it is ripped away. My wife is currently given up on me as we speak. I just hopes she remembers that I am not the same person during this ordeal because of the pain, drugs, and emotional roller coaster. You are in my prayers, and I hope you find help. soon.

It's hard for spouse's and loved ones to understand as they may not have been there themselves. There is also such a sense of impotence and powerlessness when you cannot help a person that you love. Suffering is something that gets in the way of a good relationship anyway. How can you be there for someone else when your entire life is consumed by mind numbing pain. There is nothing that can describe the feeling of just wanting to take your own life just to have some escape from how much agony you are in. I have definitely been there where I prayed to die as life had no hope, no joy, no future.

I hope you guys can work your way to the other side. Giving up is such a permanent solution to a temporary problem.

Hang in there and we will be like your extended family for support for what you are going through.

Terry Newton

I haven't been to the Texas Spine and Joint in Tyler. I am hoping that this clinical trial in Florida works out. I am so sorry about you and your wife. This pain is hard on relationships, even the most loving person can't truly understand what we are going through. I know I'm not the most pleasant person to live with, almost feel like 'Debbie Downer' at times. Even as our spouses love us and have compassion, they are only human and I'm sure it gets old for them too. I doubt any of us are the same person we were before. It changes every aspect of your life to live like this. I've been so depressed at times, that I do just want to die, want to escape my reality. My husband has taken this as something he has done wrong, an insult to him, like he is so bad that I want to be gone. He can't understand that it is nothing to do with him or my children; but everything to do with the pain, I'm tired and sick of fighting. It feels like I just can't take another day at times. We have had our fair share of fights over it and everything else. It's hard being just married, then add this to it and it is a recipe for disaster. I wish I had some magic advice; but I don't, hang in there and know that I will be praying for you and hope that you and her can work this out and come out stronger because of it.
Best Wishes,
Kathy

All of life's trials are difficult. Personally, my husband was wonderful yet I could have found plenty to complain about. The key, as in most of life, is communication.

I've seen too many chronically ill people turn against those they love and know it's an easy course of action. I promised myself I would not do that. How you ask, by waiting until I was no longer angry and then I would talk to him. Sometimes he'd get defensive and I'd ask him to think about it for a later discussion. While discussing anything with all the anger gone, you both tend to keep an open mind. A little humor goes a long way too.

Just remember, if you must argue, always argue naked!

Argue naked.......I came to this site for information and advice on back pain. Little did I realize I would find the key to happiness in some of these posts. I just wonder what my boss will do the next time we have a disagreement. There may be company rules I should look into.........

Thanks for the laugh!

Bob

laughter is the best medicine
 

So I guess this is the reason to argue naked after the age of 50:D:eek:

Mom to dad "I don't know why you aren't listening to me"
Dad to mom "Wow, your breasts look great"
Mom to dad "you think so, you're looking pretty hot to"
Mom and dad 'make up'
Child coming to see what the ruckus is "Daddy, why is your privacy touching mom's privacy?"
mom "daddy and I were just 'wrestling' "
Yeah, that would pretty funny to explain, better start saving for psych visits for the kiddos :D