This Is MS Multiple Sclerosis Knowledge & Support Community

Hi- Does anyone know any facts about this clinic.

1) How long have they been offering scanning?
2) How long have they been offering angioplasty?
3) Have results been good?
4) They seem to be very expensive.
Is there somewhere better to go if you live in the UK?
5) Why can they not do scanning and angioplasty at the same visit.
It is expensive and inconvenient to make 2 trips.

They seem to be hiding behind an information blackout which is worrying me.

Many thanks

Firstly read the following threads:-

http://www.thisisms.com/ftopict-15074.html

http://www.thisisms.com/ftopict-15012.html

To answer your questions in order:-

1/ Scanning started in June 2010

2/ The first treatments started Oct/Nov 2010

3/ As of this week they have only done a little over 40 procedures so it's early to start drawing major conclusions - However my partner was liberated there this week you can read the thread - I've linked to it above.

4/ Expensive compared to what and who? They are currently the only UK option that is open and up front. Having seen my partner treated there, there is nowhere else would prefer to have gone, the treatment and care were outstanding.

5/ Scanning takes place in Glasgow - the procedure in Edinburgh. Though they are currently in the process of opening a scanning facility in Guildford (very soon).

There is no blackout, this is very new indeed and before they start publishing findings and information they are being very careful about how they are compiled. They are still in the infancy of this procedure, the logistics have yet to get into full swing.

However the EHC are not great at publishing what's happening, that will come with time.

Any specific questions fire away.

This is a perfect answer.

Many thanks.

feeling a bit depressed about the fact that it may not help?

Depression is often an organic problem, because it comes with the disease. It's only money, though it is too much for many . The possibility of improvement can be an inspirational thing, compared with the pessimism 'MS' sufferers normally have offered to them, disguised as realism.

Welcome, GalDriver, I hope someone will be by with the current information for the UK. I'm more familiar with the US clinics. I am not sure if anyone is doing this in the UK currently.

You can get a doppler ultrasound to see if you have blockages. If you travel, you can get the ultrasound one day and the procedure the next. The cost varies from clinic to clinic, and so do the techniques used. Approximate cost is $9000 plus travel expenses with no guarantees that the procedure will work or that the veins will stay open once they are opened. For myself, though, it's 2 1/2 years post-procedure and I am very happy I had it done. Good luck.

Thanks both of you. I've heard the procedure is done in Edinburgh and that Charing Cross hospital are looking at it. I'll look into having that doppler ultrasound. I know there's no guarantee but at least that would inform my decision.

Re.depression yes I know only too well that it is part of MS too. I mostly keep upbeat and let it happen when I need to cry but this is just a bit nerve-wracking as I can't allow myself to get too excited in case I am either not right for the procedure or it doesn't work BUT I can't turn down an opportunity so I shall do the research and tests and go from there.

Thanks again.

Hi,
I was scanned over 2 years ago at Edinburgh but didnt go through with the op (although I did pass the criteria), as far as Im aware the clinic arent doing the procedure anymore. The cost was roughly 8000 at the time of my scan.

Thanks Luvsadonut (so do I, btw) that'd explain why I couldn't find any recent info online about them. That is more expensive than I thought it was too....eeek.

The EHC was the only (advertised) option in the UK.

The official line there now, is the procedure was no longer being offered due to a hike in insurance costs on the part of the EHC. It no longer made commercial sense to offer the procedure in so much s they couldn't charge enough to make it commercially viable as it was simply cost prohibitive to patients.

Off the record they were finding they were getting better results with jaw and skeletal realignment.

Having seen my partner, Emma, have both a CCSVI procedure and jaw/skeletal realignment, results would suggest there is an element of each treatment that has been beneficial.

CCSVI treatment helped tremendously with eyesight and fatigue issues, but this was transient.

Jaw/skeletal realignment treatment has removed neuralgia and fatigue so far (amoungst other improvements), both improvements have remained two years on.

Thank you, that is very interesting indeed. I am planning to have some Bowen therapy (a volunteer at the MS gym does it as his paid work) and I didn't know until last week that they concentrate on jaw alignment as this helps the whole body. Hmmmmm. I think I'm being led this way, don't you? I've always, and still do, lock my jaw not just when I'm concentrating, I catch myself doing it even when I'm trying to sleep. This makes a lot of sense and I was just saying to my partner that there must be another way of opening those arteries than an expensive, un-guaranteed, surgical procedure.

You'll find this thread interesting.

http://www.thisisms.com/forum/chronic-c ... 18706.html

GalDriver wrote:This makes a lot of sense and I was just saying to my partner that there must be another way of opening those arteries than an expensive, un-guaranteed, surgical procedure.

About 80% or so of the time, the problem with the veins is that there are malformed bad valves that are fixed in place rather than moving as they should, and the valves block the flow. There is no way to treat a bad valve except with a balloon, unfortunately. But I think there is value in some of the other things being tried: jaw alignment, upper cervical care spine alignment, healthy eating and exercise to get more blood pumped to the brain, possibly some pharmaceuticals that increase brain perfusion or decrease cerebrospinal fluid like Diamox.

What we really need is the surgical procedure proven and available under insurance for anyone with jugular or azygous vein blockages. The expense is out of reach for a lot of people, and then there is the possible need for repeat procedures. I think the lack of guarantee is especially a concern when people go with an inexperienced provider. If they underinflate the balloon in the vein, then it goes right back to how it was. If they overinflate, the vein can get damaged.

The doppler ultrasound should be around $200-300 unless I'm wrong on that. That's not spare change either but yeah for me it was amazing to get the doppler and an MRV done pre-procedure. Both my jugulars were almost totally blocked, it was really obvious.