Benicia woman fights for treatment

I am going through the same process with Anthem Blue Cross. I have had my Doctor, and second Neurosurgeon and my attorney tell them I have NO other options but to have this surgery! I have 2 levels that need to be done. Email me if you want to discuss this. sharonnunes24@comcast.net

Thank God we don't have government-run healthcare in this country, where a heartless bureaucart with no medical training can overrule the medical decisions of a person's doctor! Ohwaitaminnit...

Opponents of Obama's health care reform want to retain this status quo. They don't want a bureaucrat to stand between you and your doctor.

Ms. Nunes and Ms. Conger, I truly sympathize with you. But count your blessings, at least, you have medical insurance. How about the 50 million or so Amnericans who don't even have health insurance? I wish in letting people know about your plight, that you also urge them to write their senators and congress critters in support health care reform. Just be blunt. If they oppose health care reform, you'll work hard to vote them out of office.

I currently am living with the same thing!!! I too have CONSTANT PAIN.....
I do not recieve the Times Herald so I would NOT have been able to read this article, I was looking for the 10 day outlook on our weather and somehow came upon this! As I began to read the article I KNEW this lady has what I HAVE..
I DID have the THORACIC OUTLET SURGERY @ U C S F, with MANY COMPLACATIONS!!! Now I am left not only with the problems of; NUMBNESS, EXTREME EXUASTION, CONSTANT PAIN IN ALL MY MUSCLES AND JOINTS, but other complations (ie) BREATHING ISSUES, LEFT EYE PROBLEM etc.! I was FIRED from my job because I was missing so much work and I could not even carry my brief case most of the time! I was SO TIRED I could barely make it thru a day!! Besides it being difficult for me to fix my hair I have to REST after my shower because I am EXAUSTED!! I would LIKE some direction on this also PLEASE....

Mary -- I've heard nothing but horror stries about TOS surgery. My TOS specialist and I both vetoed that from day 1. What I CAN fix is to get proper artificial discs into my neck. I can also lead a campaign to get the FDA and our insurance companies (which ar FOR profit, remember) out of the way of us getting the well tested and used products we need. The M-6C disc is made Sunnyvale, for heavens sake, is approved and used in Europe at 3-levels. Why should US citizens have to go to Europe to get a proven product made in the US? Will you join me?

MARTI-- have you established Group on Facebook yet for wide-spread dissemination of this information? Can create links to any available info for other sufferers, links to House/Senate Bills/Votes coming up, on-line Petitions to White House, etc.

I'm in total agreement w/ you. Have some lesser degree but very similar problems developing I can only hope don't get too much worse. I'm one of those who's worked hard all my life, raised 2 kids as mostly- single mom and so never had health ins. But I now often think that may be just as well I'm not wasting $$$ on Premiums that will only go into CEO's vacation and host of Claims Agents who are encouraged w/ incentives to NOT approve any claims... Too bad you can't afford quality team of lawyers...

But perhaps massive Public Rebellion and serious threat to Cancel Blue Cross Policies could do the trick? Is there any support from AARP regarding the particulars of devices already in use elsewhere long-term, etc? hmmmm, perhaps some other Ins. Carrier out there would like the good PR image and flood of new enrollments via agreeing to honor other policy holders... or a kind of "transfer your credit card balances" approach...???

Very best wishes to you. Of course, I'm sure you have contemplated that this issue would not get any light upon it were you not forced into your situation... the "upside" to a very big downside for you, I know. Keep Heart <3

Mary, I'm so sorry that you are going through this. I had to go to Germany for a 2-level Artificial Disc Replacement in my lumbar spine (ProDisc-L) because my insurance would not cover it. In May, I had to travel to Germany again because I had to have another spine operation (not related to my ProDiscs) that my insurance would not cover. I had to pay out of pocket--both times.

I am the Founder of a non-profit society for Spine Patients called the Spine Patient Society™. We have a woman on our Forum that has TOS and cervical spine issues that is looking for help. Maybe the two of you could get in touch.

I wish you the very best and good luck raising your funds!

Justin
Founder, Spine Patient Society™
www.SpinePatientSociety.org

I'm sorry...my comment was directed at Marti Conger, not Mary. I wish you both the very best.

-Justin

Justin wrote:

I'm sorry...my comment was directed at Marti Conger, not Mary. I wish you both the very best.
-Justin

Thank you, Justin. I just registered as a member of your non-profit organization and passed the information on to a person who wrote directly to me. I'm looking forward to completin gmy registration. Am hoping we can figure out how to work together for the benefit of fellow sufferers and for our fellow citizens.

Marti Conger wrote:

<quoted text>Thank you, Justin. I just registered as a member of your non-profit organization and passed the information on to a person who wrote directly to me. I'm looking forward to completin gmy registration. Am hoping we can figure out how to work together for the benefit of fellow sufferers and for our fellow citizens.

Good luck Marti! There are many spine patients on the Society that have been denied coverage for their cervical and lumbar artificial disc replacement (ADR) surgeries that would be willing to help in this cause.

It really irks me how the insurance companies first denied coverage based on the fact that ADR was "investigational." Now, they've changed their tune and said they deny coverage based on the fact that there are no long-term (10+ years) studies in the United States. This is downright criminal in book.

-Justin

Hi Marti,
I just read your story.
Let me share my story: I had a Neck Fusion done on my C6 & 7 level. I had Spinal Cord Stimulator installed due to a pain on my left arm, after 14 days, I had meningitis and the machine was taken out. I am leaving with this pain as I am writing this e-mail to you. I am in pains 24hours, but I told myself that I will try and do something while I still alive.
My Motivation to you: Keep yourself busy. Don’t listen to the pain. Smile when the pain want you to cry. Say something when the pain want you to keep quite. Stand up when the pain want you to sit down. Do everything though slowly and take care of yourself.
May God bless you
Victoria Banzi in South Africa

Sharon Nunes wrote:

I am going through the same process with Anthem Blue Cross. I have had my Doctor, and second Neurosurgeon and my attorney tell them I have NO other options but to have this surgery! I have 2 levels that need to be done. Email me if you want to discuss this. sharonnunes24@comcast.net

Sharon -- I hope you received my email. If not please send an email to my address in the article: Marti@CongerResources.com

dave1021 wrote:

Thank God we don't have government-run healthcare in this country, where a heartless bureaucart with no medical training can overrule the medical decisions of a person's doctor! Ohwaitaminnit...

Indeed ... The heartless bureaucrats are in insurers head quarters calculating the "denial bonuses" their going to issue so they can pay the officers bonuses they want. In the mean time the FDA is worried about Lord knows what while American inventors have to go to Europe to test and get their products on the market for years and year, but have to spend MILLIons doing the same tests to jump through FDA hoops here while you and I are supposed to be satisfied with archaic methods that don't work, and when the news stuff finally comes back home it costs 10 times more than it needs to because of all the duplicate testing the FDA required. How different is my body than my European neighbor? Want to helo me change this?

Sharon Nunes wrote:

I am going through the same process with Anthem Blue Cross. I have had my Doctor, and second Neurosurgeon and my attorney tell them I have NO other options but to have this surgery! I have 2 levels that need to be done. Email me if you want to discuss this. sharonnunes24@comcast.net

I completely thought of you when I read this article!

dawnlorien wrote:

MARTI-- have you established Group on Facebook yet for wide-spread dissemination of this information? Can create links to any available info for other sufferers, links to House/Senate Bills/Votes coming up, on-line Petitions to White House, etc.
I'm in total agreement w/ you. Have some lesser degree but very similar problems developing I can only hope don't get too much worse. I'm one of those who's worked hard all my life, raised 2 kids as mostly- single mom and so never had health ins. But I now often think that may be just as well I'm not wasting $$$ on Premiums that will only go into CEO's vacation and host of Claims Agents who are encouraged w/ incentives to NOT approve any claims... Too bad you can't afford quality team of lawyers...
But perhaps massive Public Rebellion and serious threat to Cancel Blue Cross Policies could do the trick? Is there any support from AARP regarding the particulars of devices already in use elsewhere long-term, etc? hmmmm, perhaps some other Ins. Carrier out there would like the good PR image and flood of new enrollments via agreeing to honor other policy holders... or a kind of "transfer your credit card balances" approach...???
Very best wishes to you. Of course, I'm sure you have contemplated that this issue would not get any light upon it were you not forced into your situation... the "upside" to a very big downside for you, I know. Keep Heart <3

I'm working on it. Please email me at Marti@congerresources.com so I can let you know when it's up

I too suffer from a similliar (but not as extensive) spinal problem (the result of a drunk mexican, no insurance, no license, no immigration visa). I've heard some about the artificial discs but don't know if the procedure actually works, how expensive it is nor where it is perdormed. We would all like to know more of your work in this area. Under the current Uhbama administration older Americans with these types of expensive maladys will go untreated. Socialism is a tried and failed system of government control and it's current intrusion into our lives must be resisted with all our strength.

Wanglow wrote:

I too suffer from a similliar (but not as extensive) spinal problem (the result of a drunk mexican, no insurance, no license, no immigration visa). I've heard some about the artificial discs but don't know if the procedure actually works, how expensive it is nor where it is perdormed. We would all like to know more of your work in this area. Under the current Uhbama administration older Americans with these types of expensive maladys will go untreated. Socialism is a tried and failed system of government control and it's current intrusion into our lives must be resisted with all our strength.

Our biggest barriers are the incompetent FDA and greedy insurers. Both are the friends of the big-money party and will be here long after you, I, and Obama are gone. There are 15 artificial cervical disc manufacturers out there, most from the US, and only 2 who've slugged their way through the FDA. All manf. have approved discs with successful track records at multiple levels in trusted European countries -- most who have socialized medicine; not that I promote socialized medicine in any way. Spinal Kinetcs M6-C is the best in my opinion; yes artificial discs beat fusion ANY day for long term everything. Not to mention recovery time, no serial future fusions, etc. We have to change the FDA, get SOME international standardization in approval requirements to speed up approval processes up from years to months, and cut costs from millions to hundreds of thousands, and force insurers to pay for FDA approved medical devices. THEN we'll get better care for better prices. Will you help me? Marti@CongerResources.com

My perspective on artificial disc replacement changed radically after I wrote an EU researcher who had done one of the few long-term studies on European artificial disc replacement recipients. His response indicated two things not commonly mentioned in the American press. First off, the University Hospital in Berlin where the artificial disc I was interested in was created NO LONGER OFFERS THE PROCEDURE. Secondly, the result of a long-term European patient study indicates that many were not fairing as well as had been hoped some 20 years earlier. The patients whose bodies had spontaneously fused the artificial disc site, thereby losing range of motion, were actually better off on the whole, whereas the patients who had what would be considered the more desirable, functioning artificial disc, ironically, were worse off (debilitated). Finally, I learned that the ADR procedures common in Europe today are not the ones that were common 20-30 years ago. The impression I came away with was that the EU's discarded devices are being "recycled" in the United States. Only after the EU regulatory agencies make the first move, thereby unleashing a tide of negative media reports that find their way into the US press, does the FDA "reconsider" the evidence.

One of the areas that will always be dicey is spinal surgery. The odds break down like this: Following surgery you either: 1) stay the same; 2) get somewhat worse; 3) get better; 4) End up completely crippled with a degree of pain that overshadows anything you ever experienced to begin with. You're basically looking at a 1 out of 4 chance that the best, most time-tested procedures will give you the kind of results you hope for. And even supposing you feel a lot of relief, most studies comparing aggressive intervention to the "conservative", non-operative sort find that patient outcomes 10+ years after the fact are virtually identical. So even if we assume that the results of back or neck surgery will be favorable, improvements are not permanent. One surgery often leads to another surgery.

Not that I want to rain on Mrs. Conger's parade. Even so, I would urge anyone considering such an invasive procedure to proceed with caution. When you learn that US surgeons are implanting prosthetic devices European physicians have abandoned, that ought to say a whole lot. Anthem Blue Cross has access to all of the relevant studies on which to base their decisions, far more so than the average medical consumer. Entire departments are devoted to risk-benefit analysis and though I have no inside information, my personal ADR research suggests that what we here in America hear regarding European complication rates and long-term success is frightfully inadequate. We assume that because such-and-such has been used in Europe 20+ years that it is presently favored. Not so fast. Once an artificial disc is implanted, it is there for life. Whether there are any NEW patients receiving identical 20-some-year-old devices/designs in Europe is the smarter question because it reveals whether patients and surgeons continue to give the product a vote of confidence. Understand, also, that if early adopters abandon a given implant, the manufacturer will seek other markets. Those markets are quite literally the bodies of American patients. Finally, patients often forget that the most aggressive surgeons are often those who run clinical trials. They do so not only for the prestige but the financial incentives. In recent years there have been several investigations by the Department of Justice that have resulted in hefty fines for kickback schemes. I urge anyone who is dealing with a surgeon who makes a regular practice of pushing a certain product to ask if he/she is receiving incentives.

P.S. Go to SpringerLink and download the European studies, particularly anything geared toward a long-term follow up on a specific spinal prosthesis you are contemplating. You will have to pay for each medical journal article, but if the FDA is going to approve a device here you might as well see what they've been saying about it overseas firsthand. Surprisingly, some of these artificial disc implants, despite their long history in Western Europe, have very little long-term efficacy/study to back them up. Secondly, I neglected to mention that spinal surgeons consider modest improvements in the neighborhood of 30 percent pain reduction "successful outcomes" for spinal surgery. What a patient imagines as success may not be the same definition the surgeon holds.(Example: Returning to weight lifting or snow boarding after spinal surgery. An honest doctor can't promise you'll be up to the task even if your surgery is a "success".)