RE: CCSVI risks

[Guest guest]

There are risks to any procedure. The dye is used for numerous procedures daily,

for instance MRI's with contrast yet no one goes into detail about the risks of

that. It is a minimally invasive procedure and so worth a try. They need to

disclose all the risks but the Hubbard Family said that if their son needed it

every month they would do it every month like a tune up because it is safer than

most of the medications out there being used to treat MS. He has only needed it

once. My husband has had it done twice and is actually having a third procedure

in a couple of weeks. My son has had it once, both with no complications. Try to

stay local and use someone who prefers not to stent. We are in MN and went to

the Hubbard Foundation in San Diego. Thankfully we will be getting treated

locally this next time with a doctor who also does not use stents. Hoping the

veins will stay open longer this time. My husband has PPMS and the procedure

worked great for a little over 2 months each time. Both doctors we have meet

with said stents only last up to 5 years or so and then plug so the risk of

having a vein closed by a blocked stent down the road isn't one they want to

take.

Amy

[Guest guest]

I thought exactly the same Amy and am still glad that I didn't get a stent

inserted.

My procedure was in November of last year and fingers Xd, I'm still doing OK. My

check up's in May so we have our fingers crossed and are keeping to what works -

Diet, the supplements and the new stuff that we've found too (thanks to Janet

for encouraging me to get onto iHerb for the IP6 - it should arrive within a

week from now!).

I didn't have dye put in my veins as they had foun my malformed veins through

using he scanner beforehand. Whilst in my venous system they fixed the valves

which were causing the blood to run backwards and then found the stenosis in my

Azygous and left jugular behind my ear. *shrugs*

I think I was just lucky for once!

Whilst every surgery does indeed have risk, I'm with you Amy in regards to this

one. Just as vascular surgeons have said all along to families and patients,

this surgery when done knowing ALL a patient's health risks etc, is one of

minimal risk. The important thing to do is to let your doctor know ALL about you

- every single thing.

My docs get sick of me telling them everything, but better they know ALL than

them give me a procedure or a medicine which would react badly to my situation.

Good run-down Amy. Nice to hear someone else who is confident and positive

about it too.

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

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: amynjunes@...

Date: Mon, 14 Mar 2011 11:02:19 -0500

Subject: Re: CCSVI risks

There are risks to any procedure. The dye is used for numerous procedures daily,

for instance MRI's with contrast yet no one goes into detail about the risks of

that. It is a minimally invasive procedure and so worth a try.

[Guest guest]

Of course they list every possible risk, especially over there where sueing is

common-place. Even in Poland I had to wade through pages of possibles and sign

them all before they would do my procedure.

Don't let it worry you. Life is all about taking chances and in this case it is

a small gamble.

I'd not sign to have a stent but other than that, I don't think there is a

particular problem.

Hey, you probably have to cross a road to get there and that is probably more

risky

Make a decision and stick to it - you'll feel much better when you know which

side of the fence you are on.

Janet

To: mscured

From: alansamston@...

Date: Mon, 14 Mar 2011 00:45:28 +0000

Subject: CCSVI risks

I just receieved the packet from the center where I am to get CCSVI. There is a

list of risks listed in the materials, which does not thrill me. These are what

is listed:

--Problems due to the contrast medium (gadolinium contrast or iodine), including

allergic reaction or kidney damage

--Side effects from the blood thinners given after the procedure

--The possibility in some cases where angioplasty is not enough and a permanent

stent will have to be placed

--Infection or bruising around the catheter inesertion site

--Inflammation of the vein (phlebitis)

--Worsening of clotting

--Skin damage to the contrast fluid leaking from insertion site

--Damage to the vein, including worsening of blockage

--Restenosis of the artery, often within 6-18 months

I have to say, for someone like me who can still walk unaided, I am not sure the

risks are worth it, even though I do have many other symptoms of MS. Not happy

with the list, especially knowing I seem to have many sensitivities.

The worst thing, I think would be the gad contrast and getting kidney damage and

the rare disorder associated with the gad contrast. I have written to the

facility to ask if they would consider doing my testing without they dye. I also

asked if I would be allowed to refuse the stents and take only the balloons. Am

waiting to hear back.