CCSVI results

[Guest guest]

Hi. Well my CCSVI is scheduled for next month--the testing and the treatment if

indicated. At the doctor I am going to the vast majority qualified for the

treatment based on the testing.

I know there are at least 2 members in this group --if I may use names--Janet

and --that have had good results.

, could you remind me what benefits you have experiened.

Janet, could you tell me if all your benefits have been maintained.

Also, I saw about maybe 5 - 7 people wrote in to this list that they had CCSVI

and have had no changes at all so far and one person wrote that he felt worse.

As my appt is coming closer I have still not made a decision if I want to

continue because of various concerns such as restonis or being one of th 3% of

people that my doc had to use stents for because the balloons weren't working.

I would be very interested in hearing more feedback from anyone on this group

who has had CCSVI as to whether or not it was helpful.

I am considering canceling or postponing my appt but I want to give the doc some

notice, so I have to try to make my final decision within the next week or two.

I know they have a waiting list so someone else can be bumped up to my spot, but

still I don't want to tell them at the very last second.

I have been somewhat disappointed that there are only two members on this group

who are really excited about their CCSVI results. If there are others on this

list who have some good experiences to share, I would really appreciate hearing

them.

Thanks. Alan.

[Guest guest]

Yes ALL my benefits have been maintained and I am in month 5 and a half.

Now I can add being able to stand for 30 seconds, hands in the air, walking with

the walker 5 to 10 metres and doing some exercises that before were impossible

(lying on my side with bent legs and raising and lowering the upper leg at the

knee (can only do one side so far); lying on my back raising each leg high).

My fatigue is ZERO as is my pain. Today I did more than I have done for the 15

years of having MS (resorting wardrobes, cupboards, etc.) and didn't flag once

in the 8 hours and didn't remember to stop for lunch, and knew what I was doing

throughout, no brain fog at all. Yesterday I was gardening (from my wheelchair)

and had a bathroom break right after breakfast then actually forgot to go there

again until about 8 pm. Unheard of!

I haven't read all your post on restenosis as I don't want to know. When the

going is good ...

Everyone is different and you might or might not restenose is my view. I don't

think about it, I just enjoy the " be here now " situation.

I am SO glad I had CCSVI treatment.

Janet

To: mscured

From: alansamston@...

Janet, could you tell me if all your benefits have been maintained.

[Guest guest]

My benefits have been a bit too many for me to list thoroughly again.

lol

My many benefits have stayed and have improved even further since my procedure

in November.

If you're on Facebook, go to my group (Michelangelo'S Angels) and if you go back

throgh the posts to November '10, you'll see my report on my straight away

improvements and a report I did after a few wks to tell of impovements.

The procedure gave me many benefits, but the best one is to be able to have the

opportunity to walk again with strength and surity of footing. I know this will

only improve from here and I spend my days getting my muscles back into the

shape they were before I met Avonex and the intramuscular injections! lol

I ride 5-10 kilometres per day on my exercise bike and walk down the end of our

garden and back each day which is a big deal as it is very uneven ground. I

could never have done either of these things before the procedure and every day

I see in the mirror eyes of azure blue again and not the murky grey they had

ended up being prior to the procedure.

Every day is close to being like life was 10 years ago, back before I even knew

anything about the thing Neurologists call 'MS'.

Remember that every person's improvements will be different because we are all

individuals. Janet gained benefits that I didn't and I gained benefits that

Janet didn't and yet there are some improvements which we have both had.

It's not something to get carried away with the 'comparing' thing - all that

matters is YOUR improvements at the end of the day because all that matters is

what happens in YOUR life individually and what will be in your day-to-day.

I'm sure you'll be fine - keep positive thoughts circling round your mind and

don't let the self-sabotage in (self-sabotage is my biggest challenge in life

when it comes to things like how I mentally went into the procedure).

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

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: alansamston@...

Date: Tue, 5 Apr 2011 19:26:21 +0000

Subject: CCSVI results

Hi. Well my CCSVI is scheduled for next month--the testing and the treatment if

indicated. At the doctor I am going to the vast majority qualified for the

treatment based on the testing.

I know there are at least 2 members in this group --if I may use names--Janet

and --that have had good results.

, could you remind me what benefits you have experiened.

[Guest guest]

I know this is not the same procedure and off topic, but I though I would

share. 

Back when I was in college I saw a caroid endarscopy where the doc opened up the

vein in the patients neck. 

First the doc started snaking a tube up through the patients leg up to the neck

and other areas to view the areas to be worked on under flourscopy I think. 

Its

been many years.  You could see the event on the x-ray machine across the

room. 

I stood on a step stool right next to the doc as he operated on the patient. He

opened up the caratoid artery in the neck.  I watched him pull out the plac

from

the vein.  It looked like yellow hardened stiff straw.  He removed as much as

he

could reach.  The rest is left in the vein.  This patient was on the heart by

pass machine and the 2nd doc hadn't shown up.  He called him and he was out

golfing.  He told him the pt. only had an a certain number of min.s left on the

by pass machine before the brain damage started in.  The other doc showed up

just in time.  Then he had me step back across the room in the farthest

corner. 

He took sewed a bit and then took the clamp off.  The sewing job wasn't very

good so the pluming blew and blood shot across the room.  It poured on the

floor

making a big mess.  Then they fixed it up the rest of the way properly.

I realize this isn't the same procedure.  But they did put stents in to keep

the

vein open.  3 in all.  They don't fix the plac that is in the rest of the

vein. 

Also when people are on coumadin they said after a number of years the veins,

arteries, and heart calcify.  That when they operate it is riskier as sometimes

parts crumble.  That was from the RN instructors. 

I won't even say what the anesteologist did. . .   Use your imagination as to

what can go wrong. 

________________________________

To: mscured

Sent: Tue, April 5, 2011 12:26:21 PM

Subject: CCSVI results

 

Hi. Well my CCSVI is scheduled for next month--the testing and the treatment if

indicated. At the doctor I am going to the vast majority qualified for the

treatment based on the testing.

I know there are at least 2 members in this group --if I may use names--Janet

and --that have had good results.

, could you remind me what benefits you have experiened.

Janet, could you tell me if all your benefits have been maintained.

Also, I saw about maybe 5 - 7 people wrote in to this list that they had CCSVI

and have had no changes at all so far and one person wrote that he felt worse.

As my appt is coming closer I have still not made a decision if I want to

continue because of various concerns such as restonis or being one of th 3% of

people that my doc had to use stents for because the balloons weren't working.

I would be very interested in hearing more feedback from anyone on this group

who has had CCSVI as to whether or not it was helpful.

I am considering canceling or postponing my appt but I want to give the doc some

notice, so I have to try to make my final decision within the next week or two.

I know they have a waiting list so someone else can be bumped up to my spot, but

still I don't want to tell them at the very last second.

I have been somewhat disappointed that there are only two members on this group

who are really excited about their CCSVI results. If there are others on this

list who have some good experiences to share, I would really appreciate hearing

them.

Thanks. Alan.