This Is MS Multiple Sclerosis Community: Knowledge & Support

Same as most of the other centres, baloon first, cutting baloons if option one doesn't work.

Emma had both her jugular valves balooned. She had no narrowing at all, simply valve issues.

I was told that EHC intends only to use balloons at the current time and not cutting balloons, when I asked. It is too early to say balloons will not treat valves even congenital ones, if they exist.

MarkW

PS I don't know my queue position as I waited for Guildford to commence to have my 6 month follow up scan.

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

sorry if this is taking the thread a different direction, if so let me know and Ill start another, if not...I was scanned in Sept in Edinburgh and it seems I have problems with my valves. The way understand it is that, I may for eg, have a cyst like growth on my valve which is stopping it open and close correctly so what I dont understand is how ballooning the valve will help? If the valve is malformed wont it stay malformed after the ballooning? Also, does anybody have any idea of the turnaround time from scanning to procedure?
thanks

When we had the pre procedure chat with Dr Reid I asked specifically how the valves would be treated.

He did explain they would be balloned using the usual procedure and that if all else failed cutting balloons were an option. I got the feeling that would be final option if all else failed.

For want of a better description they "rupture" or "burst" the valve open until it's pressed flat against the sides of the vein wall.

That, hopefully, is the end of it and it stays where it's been put and is eventually incorporated into the vein wall in a permanantly open position.

Emma had a malformed jugular (the entire vein was much narromer than it should have been) and they had to be careful not to overtreat and possible damage the vein itself.

Emma was scanned 12th July and the procedure took place 27th December. However we were right at the beginning and procedures didn't start until October so that's not entirely representative.

Thanks for the info [/quote]

I noted that Edinburgh worked a Saturday appontment. Does anyone know if they allow any flexibility on dates wen offering an appointment, or is it a case of 'This is your appontment date/time' and that's it?

I was scanned on Jul 13th and have been told this morning that procedure won't be for another six weeks as they have to fit step-lift down five steps to operating theatre at Edinburgh.This was with building-control at the council for 10 weeks and the clinic have only just ordered this lift hence the extra delay.
So I've had 9 months of deterioration that I probably won't get back. The lovely girl at EHC was very angry and upset by this news on the phone and has the horrible task of ringing everyone to let them know.I was the first to be told,had a good cry with her on the phone and did what women do-a cup of Earl Grey and 15 ginger nuts. Feel a bit better now but have to remember that EHC are feeling very let down by matters out of their control.

I guess what I'm trying to say is the six weeks WILL pass,we WILL have the procedure and the sun WILL shine again soon.

Ginger nut number 16...... :

Hey Debbie!

I'm glad you're giving CCSVI treatment a go. I'm convinced that it can help people and has certainly altered the trend and deficits in my bladder control and myoclonus. I also don't notice humidity so much and am sweating more.

I reckon we've tried a pretty wide range of treatments by now!

I'm going to be treated around May time for problem valves in both jugulars which was missed at Stanford. I'm kind of hoping that there is a problem in the azygous vein too. The EHC seems extremely competent. Anyways, I'm glad to see you posting here again. Good luck for 6 weeks.

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3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,

Thanks Debbie. At least I'm forewarned! I'm a wheelchair user so it will affect me. My scan, in the #720's, wasn't until the end of October, so goodness knows when they'll get round to me!
All we can do is to presume that it won't affect the able bodied, and so by the time our turn comes they will have built up more experience! Either that, or, everyone will be delayed six more weeks. Did you get a date, before your recent phone call?
So, it seems at this rate I'll be waiting untill June!

To put things in perspective, I'm PPMS - though nobody has actually said so.
I'm a 69 yr/old male, first symptoms mid 1970's, dx'd mid 1980's.

So, I'm one who's tried most things over a long period. And I can tell you that a positive outlook has really helped me cope. I don't have good days and bad days - I have good days and better days!

And apart from two seperate one week courses of steroids - 100mg prednisolone - the first of which put me back on my feet in 2004 after two tablets, and the second, more recent course put me in hospital from June to September last year, I've never had any drugs for my MS.

So, we'll all get there in due course!

The Edinburgh clinic is beautiful (I think Georgian) stone built house in the Morningside area of Edinburgh (the nice bit).

It has an elevator to all floors and they've fitted ramp access around the side of the building for permanent wheelchair users.

But there is a small flight of steps from the waiting area to the theatre and recovery room.

What a nusinance something as silly as this has held everything up.

Thanks for your replies. Alex (hope you don't mind m e calling you that) bladder control and lessened clonus are the two things at the top of my shopping list too! Please,please please.........
Yes,I think we have tried everything going in the past 5 or 6 years!

Yes,the Edinburgh clinic looks beautiful from the photos but for these 5 bloody steps.... Michael (my husband) said he would happily carry me very gently up them after two hours in the recovery room but that's not allowed as we are the responsibility of the doctors after the procedure.I think they were worried in case he drop-kicked me,though I 'm sure he's felt like doing that on many an occasion.

So, the 6 weeks WILL pass, we WILL be liberated and life WILL be better xx

Is Donald Reid or A N Other surgeon also working at the Guildford clinic undertaking the proceedure? Will this reduce the waiting time overall at Edinburgh?

At present Guildford is for scans only. All procedures are taking place in Edinburgh still.

The EHC are looking for a second site in the South East (preferably London).