CCSVI treatment for MS in the UK

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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EJC
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Post by EJC » Sat Nov 27, 2010 11:38 am

Fantastic news.

Did you notice any eyesight improvement (if indeed this is an issue for you)?

Emma's big problem is eyesight, more specifically her eyes working independently of each other.

When was your original scan? Emma was seen early July and we're still yet to get an appointment.

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EJC
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Post by EJC » Sat Nov 27, 2010 11:41 am

silverbirch wrote:
Coolcatcarrie wrote:Neither can I, sorry to be a pain but a link would be great if u could? X
Im not so good on FB myself, but I do get by

Do you have a FB account ??

Maybe its time to get an account


look me up Silverbirch Theresa from within the search bar of FB then I can link you in from there
I did open an account when Facebook was a new thing, before it got popular.

I find it the on line equivalent of Big Brother with a less useful interface. It's beyond my comprehension that it became so popular.

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BalsaBoy
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Post by BalsaBoy » Sat Nov 27, 2010 12:01 pm

<Did you notice any eyesight improvement (if indeed this is an issue for you)?>

I didn't have any eye problems, thankfully.

<When was your original scan? Emma was seen early July and we're still yet to get an appointment>

I was scanned on July 8th but had to go back to the EHC the day before the procedure for another scan because the guy doing the scans said he couldn't write up a report for me because someone else scanned me in July.

I hope everything works out for you.

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silverbirch
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Post by silverbirch » Sat Nov 27, 2010 12:40 pm

EJC wrote:
silverbirch wrote:
Coolcatcarrie wrote:Neither can I, sorry to be a pain but a link would be great if u could? X
Im not so good on FB myself, but I do get by

Do you have a FB account ??

Maybe its time to get an account


look me up Silverbirch Theresa from within the search bar of FB then I can link you in from there
I did open an account when Facebook was a new thing, before it got popular.

I find it the on line equivalent of Big Brother with a less useful interface. It's beyond my comprehension that it became so popular.
Ha Ha
EJC I think its time you got back on the horse .... their is alot of MSERS on their now with information that you will find very informative e.g EHC and some paitents reviews . Gone on !!! open a new account up and look me up my account is only to do with MS and I think that is the case with lots of MS people.

As I have said before Im not really up to speed with FB but I get by and I will help you once your logged on ....

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EJC
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Post by EJC » Sat Nov 27, 2010 1:05 pm

BalsaBoy wrote:<Did you notice any eyesight improvement (if indeed this is an issue for you)?>

I didn't have any eye problems, thankfully.

<When was your original scan? Emma was seen early July and we're still yet to get an appointment>

I was scanned on July 8th but had to go back to the EHC the day before the procedure for another scan because the guy doing the scans said he couldn't write up a report for me because someone else scanned me in July.

I hope everything works out for you.
Thanks BB.

Emma was seen 4 days after you, We have our fingers crossed for an early Jan appointment and no snow!

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EJC
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Post by EJC » Sun Dec 05, 2010 2:19 am

Any updates on procedure results for the EHC?

Over 40 procedures undertaken and the silence is deafening.

Still no news for Emma on an appointment (scanned 12th July).

I've regularly looked at the shambles that is facebook for the EHC and there is the odd sentence about "mixed results - patient dependent but all procedures fine so far" and that's it.

We're finding this absolute lack of any information whatsoever exceptionally frustrating.

I realise this is in it's infancy, but really, some form of communication would be helpful.

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VeeBee
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Post by VeeBee » Sun Dec 05, 2010 5:38 am

EJC wrote:
silverbirch wrote:
Coolcatcarrie wrote:Neither can I, sorry to be a pain but a link would be great if u could? X
Im not so good on FB myself, but I do get by

Do you have a FB account ??

Maybe its time to get an account


look me up Silverbirch Theresa from within the search bar of FB then I can link you in from there
I did open an account when Facebook was a new thing, before it got popular.

I find it the on line equivalent of Big Brother with a less useful interface. It's beyond my comprehension that it became so popular.
There's a downloadable program that steals cookies on unencrypted pages allows people to hijack accounts and log in as user. Beware

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Jasper9
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Post by Jasper9 » Wed Dec 08, 2010 11:50 am

EJC - any news on the procedure yet? looks like you were one of the earliest to be scanned, so it should be soon.
Have you contacted the clinic direct? we did a while ago and they got back very quickly, even if they didnt have much of an update. Hopefully we will get a newsletter soon.

I was scanned early October, so I guess I'm still in for a long wait.... hopefully they will get to Surrey clinic open soon, and apparently they are setting up a place somewhere on the Med!?!

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EJC
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Post by EJC » Wed Dec 08, 2010 12:33 pm

The last communication I had from them was 17th November:-

It is very likely that you will be offered an appointment early in the New Year. It is our intention to give patients about a month's notice of their appointments but this has not proved possible for the first patients due to the short time frames we have been working with.

The surgeon has not yet given us his scheduling for January so we are unable to predict how many patients will be seen and how quickly. Twenty patients have now been operated on over four weeks so you will appreciate that we are not yet running to capacity yet at the same time we do not know when this may be either.

Many thanks for your patience and understanding.


Still no update since this, I'm assuming the poor weather isn't helping expedite matters.

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EJC
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Post by EJC » Sat Dec 18, 2010 2:15 pm

Emma will be liberated on Monday 27th December.

We got a call on Thursday 16th Dec asking us if we can make a pre op appointment on Saturday 18th Dec, some slots had become available and a small group of patients were squeezed in between Christmas and New Year.

Our schedule is:-

18th Dec - Pre op and blood tests (completed this morning) in Edinburgh
22nd Dec - Rescan - Glasgow - to get extra measurements that were not picked up on the original scan.
27th Dec - Procedure - Edinburgh
29th Dec - Follow up - Edinburgh

6 month follow up to be confirmed.

Now bear in mind we live near Gatwick airport, this was a tall order for us, in fact we just couldn't get a flight so I drove up on Friday, through blizzards, Ice, the lot - it took 12 hours, 440 miles. We were lucky to make it up a couple of stretches of the M6...but we arrived at 10pm.

We're leaving our car here at Edinburgh, flying home for Christmas, flying back to Edinburgh on boxing day, then driving back home later in the week. I'm tired already!

We met the surgeon, Mr Donald Reid and the anaesthetist, Mr Raj Velu this afternoon whilst they were between procedures.

Appointments for those already scanned are being released as and when slots become available.

Mr Reids enthusiasm for the Zamboni procedure shone through in our discussion, he truly believes this is one of the rare moments in medicine that a groundbreaking discovery has been made.

He is currently not in favour of stents, which is at odds with his existing experience of arterial stenting, something which makes him quite objective. His views on this may change with time and the advent of new stents desgined specifically for this procedure.

We discussed the pros and cons of the medical intervention itself as is required in standard medical practice.

You are encouraged not to expect too much from the procedure itself, that way you're not dissapointed if you don't suddenly spring up off the couch and want to jog into the centre of town. Standard psychology I guess.

We met two patients who had been liberated today in the waiting area, I will not mention names.

One chap was absolutely over the moon, for the first time in years he was able to write, his MS had reduced his motor control to a point where he couldn't grip and operate a pen. The first thing he asked for post op was a pen and paper and he continually wrote his name. It was great to see.

The second lady had literally just come out of theatre and was still recovering, as much as we wanted to grill her she needed time to sit and recover.

Once we've made it through to the end of next week I will write a full trip report, I'll do a brief medical one, then a seperate one for the logistics on travelling and hotels if anyone is interested.

In the meantime any questions just fire away and I'll answer what I can.

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Jasper9
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Post by Jasper9 » Sun Dec 19, 2010 3:36 am

Great news EJC. All the best to you and Emma with the procedure and all the travelling!
Look forward to hearing all about the medical procedural side and the logistics.

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Coolcatcarrie
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Post by Coolcatcarrie » Sun Dec 19, 2010 7:55 am

That's great news! What a Christmas present! Look forward to hearing from you! Carrie, x

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EJC
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Post by EJC » Wed Dec 22, 2010 11:21 am

Emma was re scanned in Glasgow today. We were amoungst the early scans at the EHC (July 2010) and after a bit of practice they are now doing a more thorough job.

So those that had early scans are getting another one as a matter of course.

Today it was clear that Emma had no stenosis whatsoever, however the blood flow was apalling in her right jugular and almost static in her left so with a little more investigation malformed viens were discovered on both sides severely reducing flow.

It was suggested that they would also expect to find similar malformations in Emma's Azygos vien. We'll find out on Monday.

Back to the hotel, more waiting......We did manage to get Christmas dinner booked though.

Unfortunately the hotel we're in closes on Christmas Eve so we check in to another for three days, then a third hotel on boxing day for a further 4 nights....So that means you'll get a low down on three of the hotels that are within 10 minutes drive of the Edinburgh Clinic. All Best Westerns, as much as I'd like to stay in the Sheraton, it's nice for a treat, but £200+ a night is too much to stomach on top of the treament costs as our last minute schedule meant were staying here 14 days.

We were going to fly home, then fly back to Edinburgh on Boxing day, I even booked the flights, but with the distruptions and bad weather we felt it was to risky and we'd be better off staying here until it was all done.

We have a dissapointed 12 year old now spending Christmas with her grandparents. It's worth it though.

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BalsaBoy
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Post by BalsaBoy » Mon Dec 27, 2010 4:00 pm

I hope it's all been worthwhile EJC. I'm afraid my initial improvements are all just about gone now. I'm due back for another scan in February and I'll see what the score is then. Keep us informed.

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EJC
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Post by EJC » Tue Dec 28, 2010 2:09 am

Emma was treated on 27th Dec, I started a new thread:-

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

I'm sorry to hear your improvements have faded.

Let us know how the second scan goes, we are after all, test subjects.

The fact you'[ve had some improvements is good, it's now just working out how to make those improvements more permanent.

I'm guessing you've restenosed.

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