RE: Re: Help with CCSVI questions please

[Guest guest]

Well Alan

It really all depends on where you have the procedure.

Here in the UK, there is no dye and no life long blood thinners if you don't

have stents. Dr Reid doesn't like to use stents anyway generally, so all most

are given is aspirin.

As you know, each person's procedure will be specific to their individual case

but generally, there isn't much stenting done here.

Yes it is an invasive procedure but is a low-risk one overall. I can't be

anything but positive about it and have had only positive experiences through

having it.

It is an 'Each-To-Their-Own' decision - I just wish you luck with whatever you

decide.

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

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: alansamston@...

Date: Fri, 4 Mar 2011 21:36:14 +0000

Subject: Re: Help with CCSVI questions please

This is tough to contend with, as for 5 years now since my MS onset I have

chosen only natural and alternative methods of dealing with MS.

[Guest guest]

The place I am considering says that they follow Zamboni's protocol to a T. I am

not sure if that is true, it is just what I was told.

I don't know if Zamboni used dye or not. You are lucky they didn't use dye.

I sent the place I am going an email and asked if they could do my procedure

without the dye. Am waiting to hear back on that.

As for the Plavix, they say that is only for a month, but when I see the doc I

will ask his opinion if he feels that is mandatory and tell him I'd prefer not

to.

Are you going to be on the aspirin for the rest of your life or just short term?

________________________________

To: MSCured <mscured >

Sent: Fri, March 4, 2011 5:17:00 PM

Subject: RE: Re: Help with CCSVI questions please

 

Well Alan

It really all depends on where you have the procedure.

Here in the UK, there is no dye and no life long blood thinners if you don't

have stents. Dr Reid doesn't like to use stents anyway generally, so all most

are given is aspirin.

As you know, each person's procedure will be specific to their individual case

but generally, there isn't much stenting done here.

Yes it is an invasive procedure but is a low-risk one overall. I can't be

anything

[Guest guest]

Hi Alan

I'm gathering you're responding to me, and no, I won't be on Aspirin forever.

As I said and as Janet said, Aspirin is only temporary after the procedure and

that's really just to ensure that blood clots didn't/don't form.

I go back to Glasgow in May for my follow up appointment and will know more then

- I'm pretty sure that they'll recommend me to get off the Aspirin then.

I'm already on Nifidepine anyway so I'm not worried at all.

You'll be fine! Try not to worry so much - the procedure has been done thousands

of time and if yo've researched the team you're going to be dealing with,

there's nothin to worry about.

Remember that stress and negtivity can make things worse and that going into it

with an open (but well researched) mind will only help you. I know it's a 'leap

of faith' but it's honestly not as scary as it seems - I felt so silly for

having been scared in the week leading up to the procedure when I was on the

table.

I truly reckon that not having expectations, or just having minimal 'hopes' is

probably the best way to go into it - and afterwards, just give your body time

to heal.

It took years to get us where we are now, it'll just take time and hard work for

us to get back to where we want to be if it's possible.

I'm feeling quite sure that you'll be fine!

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

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: alansamston@...

Date: Fri, 4 Mar 2011 15:04:45 -0800

Subject: Re: Re: Help with CCSVI questions please

The place I am considering says that they follow Zamboni's protocol to a T.

[Guest guest]

Hi Amy

I agree about the restenosing and the stenting. Dr Reid and I both made the

decision not to stent as we both felt that stenting was a bit of a risk due to

the location of the stent's placement (the Azygous) and whether or not I'd

restenose.

I'm nearly 4 months down the road now and am still OK. I will be checked again

in my follow-up appointment in May in Glasgow, so we shall see!

Is your husband on a special diet for his 'MS'?

I know that I stick to the Best Bet Diet (the BBD), and I'm a firm believer that

it has helped me keep from restenosing - it could be an idea for your hubby to

think about.

The whole 'diet as a tool' to prevent restenosis thing is also something I'm

pretty passionate about!

If you're yet to know about the BBD, here's a great place to get the run-down on

it: www.msrc.co.uk or www.ms-direct.org

Both will help underline the diet for you and will help you decide whether this

is something you'd be happy to stick to.

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

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: amynjunes@...

Date: Sat, 5 Mar 2011 12:40:43 -0600

Subject: Re: Help with CCSVI questions please

My husband was treated for CCSVI in August and November of 2010. Both times the

procedure worked well for 2 months and then he had narrowing reoccur.