Re: CCSVI and insurance and other thoughts

[Guest guest]

Can you send me the info on where you are, where you're getting the

procedure, and what insurance you have? There's no way I could get the

procedure in a million years without insurance.

> I live in the U.S. and my insurance is covering the tests and the procedure

> for CCSVI here. The diagnosis they will put to get the coverage is " CCSVI " .

> They can't write " MS " as the diagnosis for CCSVI treatment, otherwise it

> won't be covered since CCSVI is not an FDA approved treatment for MS.

> Therefore, I will be considered a person with CCSVI by them and the MS is

> just going to be a condition not considered part of the insurance process.

>

> I still am really iffy about the CCSVI, but since my insurance is covering

> it and some people did get benefit I am just willing to try. My quality of

> life is so low with about 10 symptoms daily for 5 years now, I feel I have

> not much to lose. But I am not thrilled about the dye they are going to use

> in the venogram or the Plavix. Also, there is a chance my venogram and

> doppler will be negative, in which case the procedure will be cancelled

> anyway.

>

> For 5 years now I have heard " amazing " stories about LDN and BBD, yet

> neither helped me. The only thing that helps somewhat for me is juice

> fasting.

>

> I can relate to a lot of the recent posts.

>

>

[Guest guest]

I think it'd be terriffic if you can share your information with Aerika Alan.

One thing I must underline for you both is that the procedure isn't strictly a

treatment for 'MS' - it is primarily a procedure to open up the stenosed,

malformed or twisted veins which amount to an individual being dxd with CCSVI.

'MS' is thought to be an off-shoot of the CCSVI condition which is congenital.

Alan I have my fingers crossed for you in reference to your scans and (fingers

Xd) procedure - I hope you go into it with little to no expectation and with a

hopeful and positive outlook - just be open to having whatever change your body

can give to you.

Healing takes time so just stay as positive as you can be and try not to give

yourself any pressure about any expectations......I know so many who have wound

themselves up over it all prior to the procedure and after, and have made the

psychological component of their 'MS' worse.

Positivity is the only way!

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: aerika.keith@...

Date: Tue, 8 Mar 2011 15:51:11 -0800

Subject: Re: CCSVI and insurance and other thoughts

Can you send me the info on where you are, where you're getting the

procedure, and what insurance you have? There's no way I could get the

procedure in a million years without insurance.

use

[Guest guest]

-- In mscured , wrote:

>

>

> I think it'd be terriffic if you can share your information with Aerika Alan.

,

I'm not sure why you wrote the above comment? You know much more about CCSVI

than I do, as you have pointed out you have been researching it for years,

whereas I am not even convinced it is anything more than a placebo. But because

you made this comment, I did want to respond that I have been helping Aerika to

the best of my ability off line in direct emails between her and I.

I know you and I have often clashed in regard to personality here. Hopefully

that won't happen again.

As for CCSVI, yes my expectations are low but hopeful at the same time. If

insurance was not paying for it, I wouldn't do it. But since my insurance has

approved it, I figure why not. The risks are pretty low in contrast to the

possible rewared if I am one of the lucky ones who gets benefit from it.

I still do have concerns about the dye agent, the Plavix, re-stenosis, and

long-term outcomes. But in weighing my quality of life/symptom level, I decided

that it is time to take a chance.

By the way, my theory is the MS and CCSVI are two different things and that it

is simply that people with MS are more likely to have CCSVI, just as other

diseases often are more likely to go together. My other theory is that CCSVI is

a consequence of MS. I still don't think CCSVI is the cause of MS.

>

> One thing I must underline for you both is that the procedure isn't strictly a

treatment for 'MS' - it is primarily a procedure to open up the stenosed,

malformed or twisted veins which amount to an individual being dxd with CCSVI.

>

[Guest guest]

Alan, I was being 'nice' and being what I thought was 'encouraging' and

'positive'.

You've made your dislike of me clear in your emails to me outside of the group

and I've ignored them coz negativity, stress and restenosis go along hand in

hand generally, and the improvements I received from the procedure mean too much

to me to allow stress to impact them.

My remark was just my encouraging your helping Aerika, and I was just being

myself....a positive and actually very friendly person who tries to aid and

encourage others - especially when it's regarding something I know well.

I just hope it all goes really well for you - as I do for everyone who has the

tests and procedure.

I'm weird like that - I wish the best for everyone. lol

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: alansamston@...

Date: Wed, 9 Mar 2011 18:08:31 +0000

Subject: Re: CCSVI and insurance and other thoughts

-- In mscured , wrote:

>

>

> I think it'd be terriffic if you can share your information with Aerika Alan.

,

I'm not sure why you wrote the above comment?

[Guest guest]

,  I appreciate your thoughts.  It's always good to have share an

encouraging word, some days more than others.

Edie

________________________________

To: MSCured <mscured >

Sent: Wed, March 9, 2011 5:59:45 PM

Subject: RE: Re: CCSVI and insurance and other thoughts

 

Alan, I was being 'nice' and being what I thought was 'encouraging' and

'positive'.

You've made your dislike of me clear in your emails to me outside of the group

and I've ignored them coz negativity, stress and restenosis go along hand in

hand generally, and the improvements I received from the procedure mean too much

to me to allow stress to impact them.

My remark was just my encouraging your helping Aerika, and I was just being

myself....a positive and actually very friendly person who tries to aid and

encourage others - especially when it's regarding something I know well.

I just hope it all goes really well for you - as I do for everyone who has the

tests and procedure.

I'm weird like that - I wish the best for everyone. lol

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: alansamston@...

Date: Wed, 9 Mar 2011 18:08:31 +0000

Subject: Re: CCSVI and insurance and other thoughts

-- In mscured , wrote:

>

>

> I think it'd be terriffic if you can share your information with Aerika Alan.

>

,

I'm not sure why you wrote the above comment?

[Guest guest]

Ok, is there some place in california that will do the procedure?  I have blue

cross.  How much is covered by those who had insurance help out?

________________________________

To: mscured

Sent: Wed, March 9, 2011 9:15:54 PM

Subject: Re: Re: CCSVI and insurance and other thoughts

 

,  I appreciate your thoughts.  It's always good to have share an

encouraging word, some days more than others.

Edie

________________________________

To: MSCured <mscured >

Sent: Wed, March 9, 2011 5:59:45 PM

Subject: RE: Re: CCSVI and insurance and other thoughts

 

Alan, I was being 'nice' and being what I thought was 'encouraging' and

'positive'.

You've made your dislike of me clear in your emails to me outside of the group

and I've ignored them coz negativity, stress and restenosis go along hand in

hand generally, and the improvements I received from the procedure mean too much

to me to allow stress to impact them.

My remark was just my encouraging your helping Aerika, and I was just being

myself....a positive and actually very friendly person who tries to aid and

encourage others - especially when it's regarding something I know well.

I just hope it all goes really well for you - as I do for everyone who has the

tests and procedure.

I'm weird like that - I wish the best for everyone. lol

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: alansamston@...

Date: Wed, 9 Mar 2011 18:08:31 +0000

Subject: Re: CCSVI and insurance and other thoughts

-- In mscured , wrote:

>

>

> I think it'd be terriffic if you can share your information with Aerika Alan.

>

,

I'm not sure why you wrote the above comment?

[Guest guest]

Joy,

I was thinking it was being offered in San Diego.  My daughter is there and my

sister in NJ, and I'm smack dab in the middle.  I've made contact with the

people in NY but from all the pros and cons I read on here,  I'm afraid to take

that step.

Edie

________________________________

To: mscured

Sent: Thu, March 10, 2011 9:31:39 PM

Subject: Re: Re: CCSVI and insurance and other thoughts

 

Ok, is there some place in california that will do the procedure?  I have blue

cross.  How much is covered by those who had insurance help out?

________________________________

To: mscured

Sent: Wed, March 9, 2011 9:15:54 PM

Subject: Re: Re: CCSVI and insurance and other thoughts

 

,  I appreciate your thoughts.  It's always good to have share an

encouraging word, some days more than others.

Edie

________________________________

To: MSCured <mscured >

Sent: Wed, March 9, 2011 5:59:45 PM

Subject: RE: Re: CCSVI and insurance and other thoughts

 

Alan, I was being 'nice' and being what I thought was 'encouraging' and

'positive'.

You've made your dislike of me clear in your emails to me outside of the group

and I've ignored them coz negativity, stress and restenosis go along hand in

hand generally, and the improvements I received from the procedure mean too much

to me to allow stress to impact them.

My remark was just my encouraging your helping Aerika, and I was just being

myself....a positive and actually very friendly person who tries to aid and

encourage others - especially when it's regarding something I know well.

I just hope it all goes really well for you - as I do for everyone who has the

tests and procedure.

I'm weird like that - I wish the best for everyone. lol

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: alansamston@...

Date: Wed, 9 Mar 2011 18:08:31 +0000

Subject: Re: CCSVI and insurance and other thoughts

-- In mscured , wrote:

>

>

> I think it'd be terriffic if you can share your information with Aerika Alan.

>

,

I'm not sure why you wrote the above comment?

[Guest guest]

It is offered in San Diego by The Hubbards and In Pacifica by someone else. We

used the Hubbards and our insurance covered it for my husband and our son. They

do not use stents unless there is no other choice and prefer not to use them.

Dr. Hubbard is with Dr. Zamboni all this week in Italy and he is treating under

a IRB approved national study.

Hope this helps, we were very happy with them just really couldn't afford the

trips out there. We live in MN and thankfully found someone local. Try to stay

local because you should have follow up and usually will need to be retreated

down the road. If you are one of those that responds you will want to be

retreated because it really isn't that big of a deal to get treated. Lots of

misinformation out there on a minimally invasive procedure that is very safe if

done correctly.

Amy