Hi ya'll! My introduction

[JenK]

Where to start?
Well, I'm normally pretty shy so this might be the morphine talking but...
Hi ya'll! I'm SO excited to have finally found you.

A quick introduction without boring you with too many long confusing details...
1st: I'm Jen. I currently live in Atlanta, GA. I have the world's most fabulous husband and 2 grown children (note I never said perfect or normal) and I have finally been given real hope to live the physiological life that most others my age get to live. At an age where I can still get out and conquer the world semi-regularly. (Mind you, my hope and dreams ARE tempered with a dose of reality and a small bit of cynicism from the 18 year fight to get here).

2nd: I've lived with chronic (sometimes bearable with strong meds and sometimes off the charts, out of control excruciating even with meds) progressive pain, progressing nerve damage and 2 ruptured and desiccated discs (L4/L5 & L5/S1) since I was 22 (almost 20 years now).

3rd: I have been in a battle of patient (and patience) vs doctors & questionable healthcare since my 1st diagnosis of a pulled muscle in April of 1995. Although I've never in my life had a muscle pull put me flat into bed with debilitating pain unable to move or do much of anything by myself without screaming for weeks at a time. I'd truly rather go through unmedicated childbirth all day every day. This muscle theory somehow made more sense to my doctors than a 22 year old mom spontaneously rupturing 2 discs without injuring herself somehow. So, instead of an MRI and actually using that very expensive, highly specialized education, they figured a few Vicodin and a pat on my obviously overreacting, screaming in pain and stooped head ought to cover things for the next decade or so.

Anyway, I'll skip the rest of the spreadsheets & flow charts of the soap opera circus that has been my diagnoses (as in plural) and treatment plans for almost 20 years. I swear I'm really not as bitter (today) about this as I sound.
The fact is, I'm here now (thankfully). I received my approval letter for my L4/L5 & L5/S1 multi level ADR for 100% coverage yesterday (a miracle that I'm not going to question).
I should hopefully have my procedure date set by tomorrow.

I am a cornucopia of emotions. I've done my research (for years) and am absolutely certain of my position to have the surgery. I very much so look forward to learning from everything and everyone here. My goal now is to learn how to heal myself wisely & carefully, understand what to look forward to during the surgical & recovery process, and to share support from and with others like me.

Thanks for reading.
*Jen

[NJ Gene]

Jen, congratulations on your approval!! Hopefully this procedure will reduce your pain significantly (if not completely). If you don't mind my asking, who is the surgeon and what type of disc does he plan to use? Many people on these boards go overseas, because ADR is much more common in Europe. It would be helpful for readers to know the names of surgeons here doing ADR.

Furthermore, many people go to Europe because the M6, which is known to most to closely mimic the real thing, is used there. It is produced in Sunnyvale, CA, but not approved by the FDA. Most readers on this board believe that it has to do more with political reasons than anything else. The final question is what type of insurance do you have? A lot of people with BC/BS seem to have difficulty and have to go through multiple appeals.

Good luck with your surgery and keep us posted!!

Regards,
Gene

[JenK]

Jen, congratulations on your approval!!

Thank you so much! We (my husband and I, because after almost 20 years this is as much his pain as it is mine) are very excited and cautiously hopeful.

If you don't mind my asking, who is the surgeon and what type of disc does he plan to use?

I absolutely don't mind you asking but be forewarned, to me it's quite a tale that I certainly find ironic and love to share.
It's somewhat of a convoluted, it's a small world, make a short story long experience. 1st I have to explain how I discovered ADR in the 1st place. A friend in Sydney, Australia ruptured a disc and was in great amounts of pain. Strangely she never knew about my saga (I don't talk about it much with others/friends because I want happiness & fun not pity or "are you ok" questions). Anyway, we empathized with each other regularly and checked in often. When she told me her plan to become bionic (you have to have levity somewhere) I was stunned. A: By the speed of her injury, diagnosis, and treatment and B: by the fact that ADR existed at all because all any of my doctors had ever mentioned was fusion, fusion, fusion.

So my quest began.
After several particularly frustrating and tearful doctor appointments and a few more venting/empathy sessions with my fabulous friend, she mentioned me and my history to her surgeon in Australia (Dr. Matthew Scott Young in Queensland).
Thus began a surprising scenario of 6 degrees of...
Since I obviously don't live in Australia, Dr Young suggested a colleague he was visiting the following week in Plano Texas. Where strangely my husband happened to be spending that week on a business trip. His colleague at the Texas Back Institute in Plano, Dr Blumenthal agreed to see my case and possibly fast track my treatment if he deemed it worthy. In the meantime I kept my second opinion appointment here in Atlanta with my surgeon, (Dr Paul Jeffords, Atlanta GA) who after researching his credentials carefully, apparently completed his fellowship at the Texas Back Institute in Plano under Dr Blumenthal. After all of this, I'm pretty confident that the universe is trying to tell me something and I have faith that this is the path I am intended to follow. Not that my decisions are usually made this way.
So to actually answer your question and sum up my tale of irony, my doctor is Dr Paul Jeffords in Atlanta GA (for those that want to look him up for more info he can be found online at pauljeffordsmd(dot)com) and he'll be using the ProDisc.

Many people on these boards go overseas, because ADR is much more common in Europe. It would be helpful for readers to know the names of surgeons here doing ADR.

We did spend some time considering going overseas. In the beginning of our search, we weren't aware that ADR was available in the US and we were no longer willing to consider/accept the fusion option.
After that we believed we'd never be able to find a US surgeon willing to do more than 1 level (amazingly we did and from what I see he offers ADR surgery for those out of state too. Similar to travel overseas).
Moving along in the list of obstacles we discovered that our health insurance (United Healthcare) officially stated in a memo (I forget the year but its fairly recent) that ADR was unequivocally not covered and of course even if we DID manage to get them to cover one level, a second level was most certainly out of the question. The doctor even warned us that they probably wouldn't cover it and it would most likely be a long process for approval if at all.
In the end we decided that no matter how great overseas care seemed to be, due to personal commitments of both a time and financial nature (building out and moving our business to a new more expensive location, our daughter's upcoming wedding, son's college etc...) we simply first had to try to get care in this country and had to risk insurance approval or denial. Our backup plan was Australia which wasn't going to be any cheaper than paying outright for the procedure here in the US but where we felt we would get amazing care (through Dr Matthew Scott Young).

Furthermore, many people go to Europe because the M6, which is known to most to closely mimic the real thing, is used there. It is produced in Sunnyvale, CA, but not approved by the FDA. Most readers on this board believe that it has to do more with political reasons than anything else.

My doctor will be using the Prodisc L. I have seen the M6 but from the research I've done into all of the discs available (overseas and here in the US), I am satisfied that its also an excellent choice. I don't doubt the politics of medical and healthcare but I'll refrain from stirring that pot because once I get going I can build a pretty good rant rather quickly. ; )

The final question is what type of insurance do you have? A lot of people with BC/BS seem to have difficulty and have to go through multiple appeals.

LOL... Are you sure you want to know? Because this is where things get freaky and really really really strange. Our healthcare provider via my husband's job/work is United Healthcare whose official stance is that ADR is absolutely 100% NOT covered. Nope, noway, no how so don't even ask.
However, (keep in mind this part may not be included in every UHC plan) our plan through United Healthcare also offers a supplemental plan called CarePlus (for an amazingly almost sickly low nominal monthly premium) which DOES cover ADR and other emerging "experimental" medical treatments. It's so inconsequential of an amount and we've never needed it so we didn't actually realize we had this coverage until a co-worker pointed it out. It wasn't a simple task to get the ball rolling since it took an act of congress to just discover the phone number to contact them (which happens to be the UHC customer care phone number number) let alone figure out how to begin the approval process but we managed it after days of digging through lots of paperwork and confusion. After that, the process was amazingly simple. I've put a general map to the process below.

In general to file a CarePlus request/claim:
1: YOU (not your doctor) call UHC and tell them you're filing a CarePlus approval request/claim.
2: Give them a few answers to generally simple questions (don't worry about account or ID numbers, its your UHC ID) Be sure you have your doc's contact info because you may not have the answers to every question such as diagnosis codes & treatment codes.
3: They send this completed info off for assigning you a rep & within 72 hours your rep calls you to introduce themselves, ask any extra questions they may have and give you their direct phone line number.
4: Your rep IS your case manager and will be the person you talk to for everything. From claim submission (your doc does this) to mileage reimbursement & hotel/travel (if your treatment is more than 50 miles from home) etc... No random call center people. They are "the man (or woman)" for literally everything.

Anyway, back on track since I'm rambling, we began the approval process and were fully prepared to pay out of pocket for and be denied the second level since the FDA only approves 1 level as far as we know. Like it says in my intro, we were stupefied to get our approval letter a few days ago and learn they would be covering both levels at 100%. We're grateful and aren't going to give them time to change their mind (Surgery is scheduled August 23, 2013).
I'll happily keep ya'll posted on how things go and what actually happens once the claims start getting submitted but so far so good and we can't complain (then again, I haven't had the hospital food yet).