This Is MS Multiple Sclerosis Community: Knowledge & Support

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.

HP...we realize your frustration, but this goes far beyond the scope of our volunteer organization. Until we have peer-reviewed and published studies confirming that endovascular procedures are necessary, Medicare will not change their position. They need peer-reviewed and published research. Until then, they consider treatment "investigational" Here is their explanation.



We'll be discussing this with the doctors in Las Vegas later this week. It's all about confirming the science.
I know you are angry with me, personally....but I'm honestly doing the best I can for those with CCSVI.
Jeff and I could have walked away from all of this (gladly) two years ago, but we're still involved.
We give thousand of dollars away each year to further this research, and spend untold, unpaid hours working for more research. And I've always been honest that this is a procedure which needs to be done close to home, with lots of monitoring for restenosis and clotting. And that restenosis happens in half of all people treated.
Support CCSVI research, financially or in any way possible.
all the best,
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

But what can be done? What we need is research funded and underway. Well-designed research, multi-center prospective randomized controlled trials.

With Medicare and some BCBS companies, I believe our best argument is that angioplasty of central venous stenosis is covered for other patients.

Here is where Medicare HQ is. Occupy Medicare?
http://www.hhs.gov/about/hhh.html

Cheer added her post while I was typing up mine, and I see we are of like minds when it comes to the research.

Wow. You guys sure are fast!

cheer posted only 13 minutes after I started the thread. Super-duper fast.
Cece posted only 19 minutes after cheer's post. Super fast.

No, I'm not angry with you, cheer, but I did want to get a fast answer--thank you for coming through for me at record speed--about the Alliance's position on Medicare because you said the topic would be discussed at an Alliance meeting. Sad news for many, for the other 50% that no one likes to talk about. The situation all around is disheartening which is why I was hoping for creative solutions.

cheer, have you noticed that the atmosphere around TIMS today is virtually chilling with threads and posts being moved to where it's hard for people with disabilities to find them? Some people think some people are playing power games, but only narcissists would do such despicable acts, imo.

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."

Here are just a couple of your posts on the Medicare appeals process--Note that you mention I already answered you about Medicare.....we've discussed this before online.


post165774.html?hilit=Medicare#p165774



post163751.html?hilit=Medicare#p163751

The CCSVI Alliance is supporting research, collaboration between doctors and clinical trials.

cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

i'm very happy for everyone that the angioplasty is still at this point working for them. but for all those that had the procedure and are in a bigger mess with nowhere to go it is soooo sad. unless you are one of us that are experiencing this first hand--you just can't understand. and, most of us that this has happened to do regret having it done. how could we be happy about any of this? -----at this point.

everyone take a deep breath ....... everything will work out in time.

as much as we don't like it .......... there are always going to be periods
of time where it seems everything CCSCI has ground to a halt.

I can assure you this is not the case.

As we have all come to know ...... this is an uphill battle .

As posted above ..... TIMS pwMS must patiently wait until there is publication
in peer -reviewed journals . The health insurance industry cannot be faulted for
waiting for the green light from those health professionals they trust.

Mr.Success

I had forgotten about those posts and threads until I started to read them. I might read lots of posts from a year ago... someone in the forum was asking people about their predictions for a year from now--looking back in time is feeling like the opposite of that.

Oh no, seriously, what if I forget again about the Medicare situation and ask the Alliance to help again? Someone clue me in fast, please! It's such an upsetting and depressing topic which always seems capable of rattling my nerves. Excuse my bluntness, but having MS sucks.

cheer, it's too late for me, which Cece understood hours ago, but since you do have help to offer others regarding the appeals process, which is terrific, you could offer your help in a new thread. Think about it.

G'night, all.

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.

Cece, you are a lovely, classy lady who deserves to feel like a million bucks every day of her life.

There are times when I think it is too late for me: whistling Always Look On The Bright Side Of Life, by Monty Python, from the film Life of Brian doesn't seem to help, though I'm not sure why.

Dear HappyPoet, I know it is NOT too late. I still have big hopes for my friends Andrew and Rebecca, who were run over by the CCSVI train early on. I will be going to the November 5th event at the Ottawa Convention Centre (a new glass geodesic building) on Nov. 5, to see



They spelled Triana's name wrong! She is the kinestheologist I have been working with, whom I went cycling with a few times this summer (I tricycle -- that's funny because me and two other no-accounts I used to loiter around with a long time ago had a Mona-Guerrilla theatre group we used to call Tri-Cycle). She lost her bike when it blew off her car, but she has another one now.

Be of good cheer. I always found Pogo cartoons cheered me up. Failing that, Calvin and Hobbes. I know they will get real someday soon, and you will get fixed. My GP made a point of telling me I don't have a DVT so no blood test. Fight for what you know is yours. You will win.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Pam , hang in there . We just read of someone who had 10 venoplasty's.

Don't give up.

A smooth sea never made a skilled sailor .........



Mr.Success

I agree with Blossom. Though I can't agree with their way of conveying it, or with their recommendations, I have to agree with the "Skeptics'" attempts to prevent people from getting themselves into the kind of trouble she seems to be in. Maybe this comment needs to be elsewhere; I am not plugged in outside this forum yet. I had the kind of "MS" that makes you see everything in a pretty dim light. I am still like that a lot of the time.

I am done crying about my kids leaving home. You can't say I didn't try. Many things, I expect, have still to go wrong for me, and I can only hope it is a smooth enough slide down the hill I am somehow now on the far side of. I used to think, expect the worst, and you will never be disappointed: you can only be pleasantly surprised. Now I think things are more random than that, and that's kind of my expectation for how things will turn out. Nevertheless, I know that there are many people like cheerleader and Dr. Sclafani and Ceci and thousands of others who aren't as public but are just as committed, working so, so hard to make things work out better for more of us. I don't know how to celebrate, congratulate, or thank them. All I can do is send out as many good vibes as I can muster.

No, I can't walk yet and it's not looking too gloriously optimistic. It's been too long things have been unused, and lose them I have already done. And the pain: well I have decided to risk more heart problems for the sake of keeping on top of that with certain drugs. You have to weigh risks, make trade-offs. So far we are enjoying the empty nest.

I count my blessings. I am able to tolerate loud fast obnoxiously repetitive music when it is also done by maestros who know a lot about structure and design and achieve complexity when interpreting the work of master songwriters and composers. That's one of the things Jazz is all about. I count Jazz as among my principle blessings. It makes up for a lot.

And there is also electronics. I live in 21st century North America in an electronic playground. All the seers in the nineteen-fifties who thought the future was going to be a labour saving heaven were wrong about that. My dishwasher doesn't cook me dinner yet. But they could never have imagined the kinds of doodads we do have. It reproduces music and movies, young and old, better than anybody thought, so now are tiny nano-boxes with ear-buds that will play you a rhapsody while you are watching Humphrey Bogart on an elliptical trainer graphing your heartbeat at the gym.

I know there are many suffering as I write. Many who can't stop the pain, who can't get to the bathroom on time, and you know the rest. I count among my blessings the curses I know they have, that for the moment, I don't.

What else have I to offer you besides my litany of self-congratulation?

I think there is one thing, today, anyway, and I will say it to my CCSVI friends before I'll wander off the forum. It's about vestibular balance.

One of the considerations when I almost voluntarily gave up my drivers' license was that I was losing my balance. That has improved a lot since my procedure, but once in a while I still stumble or fall. Even, and maybe especially, people who have been there through my worst times of bad balance still move quickly by reflex when I seem unsteady.

I think my inner ear is affected, as well as some proprioception.

The book that I have mentioned here a couple of times, "The Brain That Changes Itself", I think has a passage about a woman who got too much of an antibiotic that robbed her of almost all of her vestibular balance. The doctor said, so sorry, it's permanent. She lost her job and was in a state of permanent vertigo, where even when lying down and perfectly still, she felt nauseatedly like she was falling down a hole. Malice in blunderland. Then came a doctor with a hat. It provides feedback by a gizmo you put on your tongue, about what your head is doing. Roll, pitch, and yaw, the things the three circular canals in the inner ear measure. It had accelerometers you wore inside a hat. After a few minutes, the dizziness was gone! After progressively longer times, culminating in forever, she could take off the hat. She had trained her brain to use the tiny bit of vestibular balance she had left.

She now can drive. Meanwhile, cameras, phones, and pad computers have accelerometers built in. Some double as laser-levels. The hat is now a pair of glasses. I think you still use your tongue. I want to try this, as I believe it will help me walk, and even drive.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

blossom, dear blossom, you speak the truth better than anyone else ever could. TIMS needs you. Thank you!

1eye, your very insightful help, support, and understanding are very much appreciated. You've given me a great idea that will be good for me and makes me happy--to start reading again the comics page of my daily newspaper, starting today. Thank you!

MrSuccess, you're so right--a smooth sea never made a skilled sailor is a great analogy which reminds me of another one: a good captain never abandons ship. I won't give up on hope, on myself, on the future. Thank you!

1eye, I don't know where your post belongs, but your words are welcome here. You should consider yourself among the "committed ones" you speak highly of because you invest much of your time here at TIMS helping people. Do try to meet Dr. Trev Tucker at the upcoming conference--you two have much to discuss!

Happy Poet, please don't blame yourself or beat yourself up or feel guilty. What we knew then and the information being presented was a lot different than what we know now. I too would make a different decision with the new and better knowledge we have available now - much of what we read early on has turned out to be untrue, information I relied on in my decision-making.

I guess what I've learned is early research and understanding should not be relied upon when a paradigm shift is underway. We really do need a lot of doctors with hands on experience, replicability, experiential versus theoretical knowledge. And double blinded, randomized objective trial data on safety and efficacy.

I too trusted the early information, as little as we had, not appreciating that it could be inaccurate. Unfortunately, I'm not a scientist so it was outside of my realm of contemplation that the little that we did think we knew could even be wrong.

I'm grateful to have gotten out without any harm (thus far), but I would definitely wait now given what we've learned since my treatment. I feel terrible for those that WERE harmed who also based their treatment decision on faulty information. I think their cautions are justified, as is cheer's concern. But we know more now. We can't judge ourselves based on what we know NOW, only what we thought we knew THEN. And given how safe and uneventful we were led to believe the procedure was, there should be no reason to feel bad about your past treatment decision.