Re: CCSVI--Janet and others

[Guest guest]

Hi Janet,

Congatulations on your success in the treatment. That must be so

exciting/encouraging. I did want to clarify something though. Prior to the

treatment you had stated often that due to the BBD you had very little symptoms

other than mobility--for example you had said you had no brain fog and I was

under the impression your upper body had no deficits and that your mood/coping

was very good.

But in your post CCSVI message you say the brain fog is gone after the procedure

and that you have more uppper body strength, etc. So that leaves me a little

confused.

Were there symptoms you had prior to the procedure that you hadn't realized you

had?

I am particularly interested in the brain fog issue because that is my main

problem. Did you have brain fog before the procedure and not realize it and now

you are at a higher level of a clearer brain?

On another note, I am in the U.S. I am under the impression there are two sites

in the US offering this--that being Albany NY and Arizona. Can anyone confirm

this?

I am also wondering if people's U.S. health insurance is covering the testing

and treatment?

Thank you.

>

>

>

>

>

> Treatment late Monday night. 100%!!!! stenosis left jugular when seated, 65%

when lying. Hands not only got warm but sweated as they ballooned the jugular.

I looked up at the ceiling thinking some moisture was falling down as it had

been so many years since I'd perspired I had forgotten about it.

> Total upper body strength and balance restored, normal hands (and I can snap

my fingers which I have never been able to do), clear, clear head, no brain fog

whatsoever. a different way of seeing things - no panic, no worry, all totally

serene. And that was all immediate. NO pain and so many other things.

> Constipation gone, incontinence too - so much so that I have just flown from

Warsaw to Barcelona (3 hour flight) with no toilet on board that I could reach,

stopped at Barcelona airport before the 2 hour car journey up here and couldn't

even pee! Sorry for the graphic info but I know a lot of you would do CCSVI

treatment to cure constipation/bladder issues/pain alone.

> EVERYONE should do this. If you can't afford it, sell something, don't buy a

new car, forego your holidays/Xmas/birthdays, re-mortgage...

> If anyone wants further info, I'd be happy to chat to you off-list.

> Liberated Janet )))))))))))

>

>

>

[Guest guest]

I know for sure that Albany is doing it because I'm sched. to go Dec 3rd. Dont

know about Phoenix. As for ins covering it, what is needed is for the facility

doing it to be treating this as a vascular disorder. I believe this is how they

are even permitted to begin with which opens the door to ins covering it.

-M

[Guest guest]

After the BBD and before CCSVI I " thought " I had no brain fog/cognitive

issues/depression. It had cleared so much more for me, I really thought I was

normal. However, as they ballooned not only did my hands get hot but it was as

if a 2 inch cloud had been removed from my forehead and any remaining brain fog,

etc. just melted away. I feel totally normal, my hands are totally normal too.

I haven't had one second of cognitive problems, am sharp and fast again. It is

as if I have gone back to teenage years. I now realise this had been creeping

up on me over years and years. I feel that pre CCSVI I was talking, writing and

thinking in shaky capital letters wheras now it is all in joined up adult

writing and fast.

Before CCSVI my upper body was pretty good but I had no balance at all and if I

leant to pick something off the floor I would have to grab the chair with the

other hand or I could only use one hand at a time to wash my hair/pull up my

pants/pick up a drink, etc. as I'd just fall if I didn't hold onto something.

Now after CCSVI I have total upper body balance.

I have just enjoyed eating out with friends to celebrate and amazed my husband

in getting ready in half the usual time.

I cleaned my teeth with vigour, I washed my hair with 2 hands, I plugged in the

hairdryer myself, dried my hair with the dryer and brush held high, put on my

boots just like that instead of the usual half hour performance of my husband

trying to get my feet in them and giving up and having to change outfits at the

last minute causing incontinence, stress and a non-communicative lunch. I

enjoyed my first meal out properly in goodness knows how many years.

Sorry to go on but you only know what it feels like to be liberated when you

have got out of that prison cell yourself.

Go for it!

Liberated Janet

To: mscured

From: alansamston@...

Date: Mon, 1 Nov 2010 00:21:57 +0000

Subject: Re: CCSVI--Janet and others

Prior to the treatment you had stated often that due to the BBD you had very

little symptoms other than mobility--for example you had said you had no brain

fog and I was under the impression your upper body had no deficits and that your

mood/coping was very good.

But in your post CCSVI message you say the brain fog is gone after the procedure

and that you have more uppper body strength, etc. So that leaves me a little

confused.

Were there symptoms you had prior to the procedure that you hadn't realized you

had?

I am particularly interested in the brain fog issue because that is my main

problem. Did you have brain fog before the procedure and not realize it and now

you are at a higher level of a clearer brain?

[Guest guest]

HI Janet,

Thank you very much for the clarification....I suppose MS is subjective for all

of us to an extent---Sometimes we may think we are doing good or bad and

something comes along to shift that a bit.

Anyhoo,,, Where can a person read other testimonials of people who got CCSVI

treatment? I am much more interested after reading your experience and would

love to know the range of what could be expected--What happened for others?

Also, is this a procedure that has to be repeated periodically and how many

stints or balloons did you personally need?

Thanks.

________________________________

To: MS-Cured <mscured >

Sent: Mon, November 1, 2010 2:48:00 PM

Subject: RE: Re: CCSVI--Janet and others

 

After the BBD and before CCSVI I " thought " I had no brain fog/cognitive

issues/depression. It had cleared so much more for me, I really thought I was

normal. However, as they ballooned not only did my hands get hot but it was as

if a 2 inch cloud had been removed from my forehead and any remaining brain fog,

etc. just melted away. I feel totally normal, my hands are totally normal too. I

haven't had one second of cognitive problems, am sharp and fast again. It is as

if I have gone back to teenage years. I now realise this had been creeping up on

me over years and years. I feel that pre CCSVI I was talking, writing and

thinking in shaky capital letters wheras now it is all in joined up adult

writing and fast.

Before CCSVI my upper body was pretty good but I had no

[Guest guest]

Facebook has many CCSVI sites, YouTube has many videos of pre and post CCSVI

people.

I was ballooned, stents not needed. They inflate the balloon then remove it.

That took 5 minutes (whole operation half an hour and painless). Stents stay.

At the moment more are being developed particular to veins rather than arteries

and ones that can administer blood thinning drugs if needed for a while, others

that will be able to self-destruct (I forget the correct term) when no longer

needed but it is early days with the use of stents in veins so they are not used

routinely by all doctors.

If you re-stenose you can be re-ballooned. There were several where I was who

had their first treatment about 5 months ago but had re-stenosed. It is

individual. Others return and get stents. Some need no further treatment after

the initial procedure.

Janet

To: mscured

From: alansamston@...

Date: Mon, 1 Nov 2010 13:01:45 -0700

Subject: Re: Re: CCSVI--Janet and others

Where can a person read other testimonials of people who got CCSVI

treatment? I am much more interested after reading your experience and would

love to know the range of what could be expected--What happened for others?

Also, is this a procedure that has to be repeated periodically and how many

stints or balloons did you personally need?

[Guest guest]

Thanks. I did not realize that with the balloons, they don't have to stay in. I

would much prefer that, as opposed to the stents that have to stay in. I do not

like the idea of a foreign object staying in the body.

________________________________

To: MS-Cured <mscured >

Sent: Mon, November 1, 2010 4:50:16 PM

Subject: RE: Re: CCSVI--Janet and others

 

Facebook has many CCSVI sites, YouTube has many videos of pre and post CCSVI

people.

I was ballooned, stents not needed. They inflate the balloon then remove it.

That took 5 minutes (whole operation half an hour and painless). Stents stay. At

the moment more are being developed particular to veins rather than arteries and

ones that can administer blood thinning drugs if needed for a while, others that

will be able to self-destruct (I forget the correct term) when no longer needed

but it is early days with the use of stents in veins so they are not used

routinely by all doctors.

If you re-stenose you can be re-ballooned. There were several where I was who

had their first treatment about 5 months ago but had re-stenosed. It is

individual. Others return and get stents. Some need no further treatment after

the initial procedure.

Janet

To: mscured

From: alansamston@...

Date: Mon, 1 Nov 2010 13:01:45 -0700

Subject: Re: Re: CCSVI--Janet and others

Where can a person read other testimonials of people who got CCSVI

treatment? I am much more interested after reading your experience and would

love to know the range of what could be expected--What happened for others?

[Guest guest]

Hi Alan

I'd start with Facebook for other people's testimonials and also ThisIsMS as

well. There are a lot of groups on Facebk which can also give people's

experiences for you too. The MSRC (www.msrc.co.uk) has some of the people's

stories and experiences too.

CCSVI is caused by stenosis. This is still being researched but at the moment,

this is thought to be caused by the ferritin levels in our blood etc - I've

recently started to do a lot of research on this, but restenosis is only thought

to occur in 27% of people thus far.

It is important to cut stress from our lives and manage our diets to ensure that

the stenosis is limited and to ensure the proper flow of our blood.

I'm aware that I've given you just a very quick answer but would be happy to

share the information I have (collected over the past 2 and a half years) should

you wish.

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

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: alansamston@...

Date: Mon, 1 Nov 2010 13:01:45 -0700

Subject: Re: Re: CCSVI--Janet and others

HI Janet,

Thank you very much for the clarification....I suppose MS is subjective for all

of us to an extent---Sometimes we may think we are doing good or bad and

something comes along to shift that a bit.

[Guest guest]

Hi Janet

They're called dissolving stents as they dissolve gradually over time.

They're being created/tested at the moment from what I've read.

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

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: janetorchard@...

Date: Mon, 1 Nov 2010 21:50:16 +0100

Subject: RE: Re: CCSVI--Janet and others

others that will be able to self-destruct (I forget the correct term) when no

longer needed but it is early days with the use of stents in veins so they are

not used routinely by all doctors.

[Guest guest]

Hi Alan,

For some stenting is the only option - generally speaking the Interventional

Radiologists will always balloon first and they do prefer this method but where

the dilation continues to fail they have no option other than to use a stent.

Cheers,

Pinda

>

> Thanks. I did not realize that with the balloons, they don't have to stay in.

I

> would much prefer that, as opposed to the stents that have to stay in. I do

not

> like the idea of a foreign object staying in the body.

>

[Guest guest]

There are some IRs that do not stent at this point in time either by choice or

legal restrictions. These include Dr Tariq from Kuwait and Dr Sclafani has also

said he would not stent at this point in time. Dr Tariq uses larger balloons

and repeated longer inflations to stretch the vein more to keep it open. There

are just many approaches and opinions out there right now. Some feel that it is

safer to risk restenosis of just a vein that can be reopened than a damaged

stent that could require vascular surgery.

> >

> > Thanks. I did not realize that with the balloons, they don't have to stay

in. I

> > would much prefer that, as opposed to the stents that have to stay in. I do

not

> > like the idea of a foreign object staying in the body.

> >

>

[Guest guest]

MY PRAYERS ARE WITH YOU

________________________________

To: mscured

Sent: Wed, November 3, 2010 8:55:02 AM

Subject: Re: CCSVI--Janet and others

There are some IRs that do not stent at this point in time either by choice or

legal restrictions. These include Dr Tariq from Kuwait and Dr Sclafani has also

said he would not stent at this point in time. Dr Tariq uses larger balloons

and repeated longer inflations to stretch the vein more to keep it open. There

are just many approaches and opinions out there right now. Some feel that it is

safer to risk restenosis of just a vein that can be reopened than a damaged

stent that could require vascular surgery.

> >

> > Thanks. I did not realize that with the balloons, they don't have to stay

in.

>I

>

> > would much prefer that, as opposed to the stents that have to stay in. I do

>not

>

> > like the idea of a foreign object staying in the body.

> >

>