HappyPoet wrote:Can anyone from CCSVI Alliance tell us why there's still no help on the Alliance website for those who need help to appeal Medicare's ruling that says CCSVI treatment won't be covered because it's investigational? cheerleader told the forum this problem would be addressed at the Alliance's then-next meeting. Patients have already restenosed with jugulars that clotted closed, and even more patients will restenose without another procedure.
DESCRIPTION OF PROCEDURE OR SERVICE
The Plan defines the terms "investigational" and/or "experimental" as medical, surgical, psychiatric, and other health care services, supplies, treatments, procedures, drug therapies, or devices that are determined by the Plan to be either: (a) not generally accepted or endorsed by health care professionals in the general medical community as safe and effective in treating the condition, illness, or diagnosis for which their use is proposed, or (b) not proven by scientific evidence to be safe and effective in treating the condition, illness or diagnosis for which their use is proposed.
]I'll be having a follow-up ultrasound soon, and if Medicare denies payment just because of past costs related to a diagnosis of MS, I'll definitely appeal because I'm not even sure I have MS -- I was not tested for all the differentials (I'll be testing for Lyme first). I was rushed through the MS diagnosis and rushed onto the DMDs (gee, I wonder why).
My neuro problems are best explained by CCSVI and CCVBP (misalignment of skull base and top of spinal column which impinges nerves, veins, and arteries; explains demyelinating lesions).
If I need to appeal, I'll keep the forum updated on my fight which is very important because I'll be needing USs at 3 mos, 6 mos, 1 yr., and beyond.
I'd like to add that even Medicare has denied coverage when Dr. Mehta specifically asked about coding for CCSVI.
We've talked about this before. Every patient who is denied MUST, MUST, MUST appeal even if the process is not easy.
Unless the doctors get involved in advocating for CCSVI testing/treatment, it may be a very long battle with the insurers in the U.S. Note that cheerleader has already informed me that the CCSVI Alliance will not help -- it's not their mission she said.
But why can't the Alliance create a web page that gives pointers/advice on how to appeal? And come up with other ways to help us. Otherwise, if patients can't get treatment, why is the Alliance even needed? To tell us about a procedure that we can't have?
If I knew last year before my first procedure that Medicare might change its mind, I would not have gone down this path. Ten thousand dollars a pop is too rich for my blood (both puns intended).
Best of luck everyone.
Cece wrote:I don't think it's too late for any of us.
I think Medicare would and should cover a retreatment in the event of a clot. That is a deep venous thrombosis and it is covered for anyone who shows up at a hospital with such a clot. If Medicare has a policy of denying any claim from a person with MS, then I would expect an appeal to be successful in the event of a clot.
HappyPoet, as far as I understand it, what you're facing is restenosis but not likely clotting, since clotting tends to happen early on. That's bad if I'm right that Medicare would cover treatment for a clot but it is good, because I don't want you or anyone to be clotting. (I'm still worried about Dr. Cumming's anonymous patient in the IVUS thread and whether or not a salvage procedure will be done. Probably the patient is away in Canada and financially etc won't be getting it done and that is an upsetting thought. I know the difference between having one open vein and two open veins, from when my left jugular needed re-opening, and two is better than one.)
It is scary to restenose and it is scary that Medicare and some insurance companies are pushing back against paying for procedures. I don't like it at all. I don't know if I'll restenose again. I was worried I had this past month and then the weather cooled off and suddenly I feel like a million bucks again.
Dr. Mark Haacke, Physicist: MS-MRI
Dr. Teri Jaklin, Naturopath: Waterdown Clinic
Dr. James McGuckin, Interventional Radiologist & Bioengineer: Vascular Access Centers
Dr. Trevor Tucker, Engineer: A Physics Link between Venous Stenosis and Multiple Sclerosis
Trina Clark-Feller, Certified Kinesiologist
Hosted by: Danielle R. Rhéaume, MFA; CCSVI Patient/Advocate & Writer
HappyPoet Post subject: Re: CCSVI, restenosis, and MedicarePosted: Mon Oct 17, 2011 7:11 pm Family Elder Joined: Thu Jul 09, 2009 3:00 pmPosts: 967
Anyway, at this point, I agree with you, I must admit--I truly wish I had never had a CCSVI procedure. I honestly should have waited for "peer-reviewed and published studies confirming that endovascular procedures are necessary." My MS and CCSVI got the better of me, though, and despite Lyon's and Scorpion's best efforts, I fell for the hype and hope.
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