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The Big File All issues not easily categorized in the above forums are here. Comments on general health, diet, "getting comfortable," and more are here.


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  #1  
Old 07-26-2005, 12:26 AM
Laura C Laura C is offline
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Today I wrote a letter to Dateline NBC proposing that they cover this issue of FDA approval and insurance denial - as some of you may have noticed, I have posted many times in the past few days. This is so terrible that there is something out there to help us lead a better life. I resent that people have to go bankrupt in order to get medical help. I will not stop until there is a resolution. I have a few choices: to live like I am on meds or pay for the surgery myself - with a 1 level fusion and 2 leved ADR, it will run approx. $100,000. I can hold out for a bit longer, but I need to assess what all these drugs are doing to my system. Also, I am afraid of the fact that my back is so bad that it must be putting wear and tear on the other discs...

Anyway, I am going to contact all the other shows of this nature - if I strike it lucky, you will all be the first to know - keep your fingers crossed.
__________________
Laura

Missing Facet Joint L5-S1
Collapsed Disc L4-5
DDD L3-4
Severe Stenosis
Disco + 3 levels
Sched. Oct. 11 - 2 level ADR & fusion
Dr. John Regan - L.A.
Awaiting approval!
[URL=http://www.lauracedar.com/XrayGallery]www.lauracedar.com/XrayGallery[/U
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  #2  
Old 07-26-2005, 12:41 AM
letteski letteski is offline
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Laura,

Do you have the link or info to send a letter? I have one drafted all I need to do is send it out. I emailed Opera 2X but no response. I like the mass email idea. Anyone else on board? Lets pick a date to email them all at the same time.
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Paulette
ProDisc L5-S1 W/Dr Delamarter Aug 23, 2005
L5-S1 DDD Diagnosis 12/04
T-12 Compression Fracture 10/04
C-7 Spines Process Fracture 5/99
http://prodisc2.blogspot.com/
You are my Rock God in you I can do anything
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  #3  
Old 07-26-2005, 12:50 AM
Laura C Laura C is offline
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Paulette,

Click on this link:
http://www.msnbc.msn.com/id/3303518/

At the right is will say, "How Do I contact NBC News or MSNBC TV" and then I just clicked on Dateline NBC"

I encourage all who are interested to write in.
Thanks!
__________________
Laura

Missing Facet Joint L5-S1
Collapsed Disc L4-5
DDD L3-4
Severe Stenosis
Disco + 3 levels
Sched. Oct. 11 - 2 level ADR & fusion
Dr. John Regan - L.A.
Awaiting approval!
[URL=http://www.lauracedar.com/XrayGallery]www.lauracedar.com/XrayGallery[/U
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  #4  
Old 07-26-2005, 02:08 AM
Poncho Poncho is offline
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I'm In !!!!!
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Sincerely,
Poncho (aka Prodisc Poster Girl)
2 level ADR (Prodisc)
Dr. Bertagnoli May 22, 2004 Rudolfinerhaus Vienna, Austria.
Currently DRUG FREE and living life again!
Knowledge is Power!!!
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  #5  
Old 07-26-2005, 07:01 AM
Judy Judy is offline
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Laura I also had the ADR/Fusion combo due to lack of facets (doctor removed them by mistake). My surgery was approximately $40,000 plus expenses for my husband and I.
Back in October Dr. Yue was not allowed to due my surgery in the states by FDA laws. If that has changed great, good news for you.
Did you ever consider going to Europe to have it done. Dr. B was many years of experience.

Judy
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Surgery Vienna by Dr. Bertagnoli Oct. 16, 2004
ADR L3/4
Fusion L4/5
ADR L5/S1
Diagnosed with Arachnoiditis 11/06
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  #6  
Old 07-26-2005, 08:36 AM
JL JL is offline
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Is this the show where they have a live camera outside? Can I bring my picket? If you thought I was fighting before, you should see me go now. I'm in and on it. Bill
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(Bill) 14 yrs L5-S1 pain & tear
Discography 2003 DDD
10 yrs. chiropractic
6-14-05 L4/5 & L5/S1 Prodisc Yale New Haven CT Dr. James Yue
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  #7  
Old 07-26-2005, 02:02 PM
letteski letteski is offline
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Hi All,

This is the opening to my letter to NBC. I encourage all of you to cut this and add your own story to the bottom. Or use it as a jump off to get started. I sent the letter to as many emails on the above link that may be interested. The more they receive at one time the better. I also put Artificial Disc Replacement Surgery in the subject area:

Dear NBC

There are thousands of people in the US that suffer tremendously from back pain and there insurance companies will only pay for fusion A surgery that takes away your mobility and cause the adjacent discs to fail in the future requiring more surgery. This is an outrage and we need your help to bring this to the attention of the American public. When I was first diagnosed with Degenerative Disc Disease I thought I was all alone but in the last few months I have realized it is not just about me but it is a much bigger, it is about thousands of Americans that are being denied health treatment for back problems because the insurance companies will not pay for Artificial Disc Replacement Surgery. This is an outrage and we desperately need your help to get the word out.....................
__________________
Paulette
ProDisc L5-S1 W/Dr Delamarter Aug 23, 2005
L5-S1 DDD Diagnosis 12/04
T-12 Compression Fracture 10/04
C-7 Spines Process Fracture 5/99
http://prodisc2.blogspot.com/
You are my Rock God in you I can do anything
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  #8  
Old 07-26-2005, 03:04 PM
letteski letteski is offline
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FYI I have already gotten a reply back from the local affiliate in Reno, Nevada They are very interested in my story. Maybe they can help us go even bigger.
__________________
Paulette
ProDisc L5-S1 W/Dr Delamarter Aug 23, 2005
L5-S1 DDD Diagnosis 12/04
T-12 Compression Fracture 10/04
C-7 Spines Process Fracture 5/99
http://prodisc2.blogspot.com/
You are my Rock God in you I can do anything
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  #9  
Old 07-26-2005, 03:04 PM
Laura C Laura C is offline
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Join Date: Jul 2005
Posts: 86
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Here is my letter:

Dear Dateline,

I am writing to you on behalf of thousands of people in need of an Artificial Disc Replacement (lumbar, thoracic or cervical). Since the FDA approval in October of 2004, hopes of severe pain sufferers have been shattered to find that most insurance companies are denying coverage for this procedure.

I have been suffering from severe back pain for over 2 years. I was born with a piece of a facet joint missing and now have 2 collapsed discs in my back. I am 45 years old and my daily activities have been diminished greatly and can only be tolerated by taking narcotic pain medication on a chronic basis. The operation that has been recommended by 3 of the top surgeons in this field (in Los Angeles) will cost approximately $100,000.

There are people who have paid for the operation out of their pockets, taken money from their 401K, retirement fund, credit cards, loans from family and friends. Some have been left financially ruined and ultimately filed for bankruptcy. There are many who have gone to Germany (where the Charite Disc was developed) to have the surgery because the cost is more efficient.

There are a few insurance companies, such as Aetna, Blue Cross of Mass. and a few others that are covering the ADR, but clearly not enough. I feel that this topic is worth publicizing as there are millions of people that suffer from chronic back pain.

Detailed information on the Charite Disc can be found at www.charitedisc.com

Thank you and I look forward to your response.
__________________
Laura

Missing Facet Joint L5-S1
Collapsed Disc L4-5
DDD L3-4
Severe Stenosis
Disco + 3 levels
Sched. Oct. 11 - 2 level ADR & fusion
Dr. John Regan - L.A.
Awaiting approval!
[URL=http://www.lauracedar.com/XrayGallery]www.lauracedar.com/XrayGallery[/U
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  #10  
Old 07-26-2005, 03:10 PM
Dale S Dale S is offline
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OK... my letter is already on it's way. There is power in numbers but I fear 500 +/- internationally will do little to encourage insurance companies to reach into their tightly sealed pockets.

As I mentioned in previous posts, to fight successfully, we need to combat the excuse used in denying coverage... which is that ADR's are EQUAL to fusion. A study proving superiority on some point is desperately needed. While telling NBC might bring our problem to the limelight... telling Johnson and Johnson that their profit is jeopardized every day until such a study is conducted might be even more effective. If they are just as greedy as the insurance companies, maybe our numbers will have an impact.

I was also thinking about consulting with an attorney. The problem is the cost to take this to a lawsuit would be prohibitive... maybe I'll start a fund!

Johnson & Johnson'e email address is DePuySpine@dpyus.jnj.com

Please include them in your emailing petitions.

Dale
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