Open letter: Dear Insurance Carriers,

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Open letter: Dear Insurance Carriers,

Postby MegansMom » Wed Dec 21, 2011 3:36 pm

Last year, in September 2010, my daughter was found to have CCSVI. In latter May 2010 she went on a cruise. She felt fine. She was for intents and purposes feeling great.

Over June and July she was plagued with odd symptoms. In looking back her first symptom was a fall in the shower due to imbalance. Then progressive, oppressive fatigue that arrived like a blanket of fog. Some intermittent headaches were thrown in too. Then in July she had electrical shocks down both arms, fleeting but odd and scary.(we later learned this was L'hermittes sign). Some slight vision impairments and cog fog too.
Most of these signs and symptoms she chalked up to being a busy mom and being overworked. But i thought the electrical sensations were a pinched vertebrae from the bathroom fall... Seemed plausible at the time. So she went to a Dr. Her family care physician. He ordered an MRI and gave her. Neuro consult. Over the next 30 days she had more MRI's and a spinal tap... And a diagnosis of CIS, probable MS.
Duriing that 30 days she also had paralysis of her right face ( like Bell's Palsy) but alas, it looked like this all was due to MS.
Her new neurologist strongly encouraged that she go on one of the DMDs. He was very encouraging to her about the new oral "due out soon". All of these DMDs had high price tags, not very good track records statistically, they all had terrible side effects BUT they were not experimental and they were FDA approved. It still didn't sound too promising.
We heard about Dr P Zamboni and CCSVI and venous transluminal angioplasty. Good outcomes in early diagnosed patients, low risks.... Sounded good. Could she have this CCSVI.
So we looked for a local interventional radiologist, one that knew about CCSVI, and had years of PTA experience, and we found one. Sure enough, she had CCSVI. She saw symptoms improve on the table.
Fatigue gone, vision especially vivid color improved, headaches gone, balance normal, cog fog gone.
Over the next few weeks she had odd fleeting expressive aphasia, this waned disappeared by 2 months later. The only residual symptom were numbish pinkies. No DMDs were started. And it was covered by her insurance carrier. This has changed. Now most don't cover TPA if connected with MS.
Well its a mistake. She continues to do well.
A few months ago she started taking L'arginine and it has stopped the pinkie numbness. She takes a few suppliments ,vit D, folic acid and tries to eat right and exercise. Today she is completely symptom free.

She did not spend your insurance money on DMDs - $20,000-40,000 annually we hear. But we hear you are not covering the PTA anymore??? Are you people nuts? So short sighted??? If they have blocked veins and decreased cerebral perfusion, it needs correction. Please reconsider and do your homework, the research is there. Its objective data. Go to www.ccsvi.org.

Help us by making decisions in the best interest of patients and cost effectiveness, Stop supporting drug companies. Do not base your criteria on pharmaceutical research criteria. This procedure IS NOT experimental , its just new to be linked to MS.

Please support the research and encourage it as it will ultimately save you billions!
Hopefully my daughter may never need a cane or a walker or a wheelchair or a acooter, think of all the money we saved you and all the disability payments that she won't need if she can continue to work.
Doesn't every newly diagnosed patient deserve that chance?

Its a Merry Christmas at our home this year.....
Hoping that it can be in the future for all of your patients.

MEGANSmom
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Re: Open letter: Dear Insurance Carriers,

Postby frodo » Fri Dec 23, 2011 2:58 am

Just one idea. Maybe you could ask for the medication that the insurance covers and throw it secretly to the dustbin. After paying some thousands of dollars the insurance will be more willing to negociate.
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Re: Open letter: Dear Insurance Carriers,

Postby Cece » Sat Dec 24, 2011 9:02 pm

Most insurance companies are still covering the procedures, as far as I know. BCBS in some states and Medicare/Medicaid are the ones who are not. I expect it to get darker before it gets better, but we're not there yet....

It is wonderful as always to hear of her improvements. I too believe that this will be a cost-saving treatment in the long run. And even if it didn't save money, the QOL and health improvements are worth it, and are what insurance is meant to be for.

We will get there. I am itching to see more research underway, and to get CCSVI treatment elevated to the standard of care for everyone with CCSVI symptoms, such as I had.
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