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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Coolcatcarrie
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Post by Coolcatcarrie » Sat Oct 30, 2010 10:53 am

Join the essential health clinic facebook page the link is on there website, they seem to post some updates on there. To be honest I'm just very grateful to them for taking the initiative to start ccsvi in the uk! I gave up a couple of Poland appointments back in september to have the procedure in my country which in my opinion I'm much better off doing. I was scanned by them back in august, and am now waiting for my appointment, I'm 26 can't walk very well and am still very happy in the knowledge that I'm in safe hands and my turn will come! X

steviebhoy
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Post by steviebhoy » Sun Oct 31, 2010 4:01 am

Think you're being very unfair, they are doing so much work to get this up & running and regularly post on their website & FB page
I was scanned in June , procedure on 12 th Nov..... Huge backlog though :roll: Keep The Faith

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Coolcatcarrie
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Post by Coolcatcarrie » Sun Oct 31, 2010 6:49 am

I agree, they're fab and the info is out there if u look! Good luck with your procedure steviebhoy! Carrie x

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GiCi
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liberation procedure in UK

Post by GiCi » Mon Nov 01, 2010 8:30 am

I took part as a speaker to the conference on CCSVI held in Glasgow last Saturday.
Dr Gilhooly told me that they had done two successful liberation procedures in Edinburgh last Thursday.
During the conference the experience of Bulgary, Jordan and Poland were presented by dr Petrov, dr Omari, and dr Simka and the results were encouraging.
I am sure everybody would join me in appreciating the open-mindness and the courage of Dr Gilhooly and his team. Another step forward.
GiCi

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Coolcatcarrie
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Post by Coolcatcarrie » Mon Nov 01, 2010 8:37 am

Hi GiCi

Thanks for the info! And yep I deffo join you in appreciating Dr Gilhooly!!! :) Carrie

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Jasper9
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Post by Jasper9 » Mon Nov 01, 2010 10:07 am

Me too! Its great EHC is taking a lead in the UK and I've also been impressed with how professional they seem to be.

GiCi - Do you know if any of the presentations will be going online?

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ConstableComfortable
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Post by ConstableComfortable » Mon Nov 01, 2010 10:09 am

I sent an email to the National Institute of Health Research, they provide funding for trials and research for the NHS, enquiring if any research was planned regarding ccsvi.
I have just got this reply.

http://constablecomfortable.blogspot.co ... ccsvi.html

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EJC
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Post by EJC » Mon Nov 01, 2010 1:34 pm

I appreciate what EHC are doing and have so far done. However it isn't entirely altruistic, it's a business, and one charging a reasonable (but not excessive) amount of money for it's services.

It would be prudent (and polite) for the EHC to inform it's paying customers, even if by generic email to those already scanned, what the state of play is, rather than generic emails for the entire waiting list.

I don't use Facebook, but I do keep an eye on the EHC website for updates.

EHC are inundated with phone calls about CCSVI, when we sat in their reception waiting for Emma's scan, the phone rang non stop with questions on CCSVI as people find their website on a daily basis. I simply don't want to add to this by emailling/phoning etc to get some idea when all this is going to occur.

Not only is there the small matter of when we're going to have to come up with £5,500, but I also own and run a business and need to organise cover for time I'm not there.

I am delighted EHC decided to take on this procedure, just a little more information for those in the system would help tremendously and probably reduce thier workload on a daily basis also.

As little as 5 minutes a day would be enough.....

Something simple like this:

1st Nov 2010

We are now booking patients scanned in week three of June for appointments in mid November.....

Our Next set of appointments for those scanned during week one of July will start in Early Decemeber.

Can you see how something so simple keeps people abreast of the progress, simply for the sake of a paragraph a day/week on the website.

Do not for one minute think I am criticising what they are doing or thier methods.....just tell us where things are too, being kept in the dark is horribly frustrating.

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EJC
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Post by EJC » Sat Nov 13, 2010 1:58 pm

Latest email recieved today from EHC:-

Emma was scanned on July 12th, we have yet to have any communication for further procedures.

Following the very successful conference on CCSVI, we are now working our way through the waiting list for the CCSVI angioplasty procedure. The Edinburgh Clinic is an excellent venue for these procedures with a fully equipped vascular theatre with imaging equipment suitable for CCSVI treatment.

The clinic has excellent disabled access from the car park and there is a lift to the upper floor where the operating theatre is located. One issue which has arisen is temporary difficulty with access to the theatre for patients with limited mobility. There are five stairs to be negotiated from the lift to the theatre and although a ramp has been put in place, the angle of descent is too great for safe passage of a wheelchair. A platform lift will be installed during the Christmas break which will solve this problem. It does mean however that patients with severe mobility difficulties will not be listed for the procedure until after this installation is complete. We appreciate that this will disappoint some patients but hope you understand that safety is of paramount importance.

Consequently we are offering appointments to patients who can safely use the existing facilities and therefore not following the list of scanned patients in strict chronological order. Everyone who has a positive scan and wants to have the procedure will be offered a place when the new arrangements are in place. It is important to bear in mind that fitness for the actual procedure will be determined at the pre-operative assessment with the anaesthetist and surgeon. Already one proceure has had to be delayed due to a medical problem. Medical fitness for a procedure is vital to the success of the treatment; which can last over two hours. Patients must be able to lie flat for that period of time and the anaesthetist will make the final decision on fitness.

The Edinburgh Clinic is not an inpatient facility, so patients will have to make arrangements to stay nearby for at least three days. The surgical team will carry out a pre-operative assessment as described and also a post operative check the day after the procedure. These appointments are an important part of CCSVI treatment in the UK and are a requirement of the surgical team.

For some time we have been looking for suitable premises in the South of England for scanning and treatment. We have now identified such premises within a well established vascular clinic in Surrey. This has excellent disabled access and is all located on the ground floor. We plan to commence scanning in the new year at this site but it would be very helpful if you would prefer a scan at this site, to let us know by email. We will then mark our list accordingly. We have no plans at present to offer the intervention procedure at this second location. Please do not phone the clinic as we are still experiencing high volumes of calls.

We are in touch with colleagues internationally on potential research collaborations and on the formation of a European Society for CCSVI. These contacts will be crucial in developing the case for CCSVI to become a standard treatment for MS in the UK and beyond. We have also had numerous contacts regarding research possibilities within the UK and will be exploring these in the coming months. Good quality research on treatment outcomes is vital for development of CCSVI in the UK.
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EJC
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Post by EJC » Sat Nov 13, 2010 2:00 pm

steviebhoy wrote:Think you're being very unfair, they are doing so much work to get this up & running and regularly post on their website & FB page
I was scanned in June , procedure on 12 th Nov..... Huge backlog though :roll: Keep The Faith
Let us know how things went yesterday Stevie. There's been no actual feedback from EHC on the procedures so far, so your point of view is going to be a first.

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EJC
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Post by EJC » Wed Nov 17, 2010 10:34 am

I emailed EHC in Glasgow this week to get a rough idea where we are on their list for "liberation".

I received the following reply:-

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.
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I suggested that is might be very helpful to those already scanned to get information similar to this so we have a rough idea where things are. At least we now know we're not going to get a short notice call to go up before Christmas and we can plan.

If any of the first 20 would care to share their experiences there are hundreds/thousands of people interested in how EHC and the Edinburgh clinic handled everything.

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Jasper9
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Post by Jasper9 » Wed Nov 17, 2010 11:07 am

there are some comments on their facebook page, including one or two from people who've had the procedure - they seem very positive about it.

It looks like facebook is the first place they would put any further information -
I don't think you need an account to view this page:

http://www.facebook.com/pages/Healthy-T ... 6786356077

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Coolcatcarrie
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Post by Coolcatcarrie » Wed Nov 17, 2010 11:17 am

Then from that link Jasper posted click on discussions then reports and a lady called Sarah Robertson has posted on page 2 about her procedure only yesterday! All sounds great!

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EJC
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Post by EJC » Wed Nov 17, 2010 11:34 am

Yup, found it, I don't need to sign up to read it.

I found the comment you refered to:-

Had surgery yesterday - noticing small improvements already : ) as were the other patients I spoke to, so a very positive experience. Staff at clinic were lovely and Im so pleased it went well!!! Thank you all for your good wishes, they worked - all the best to you guys too when the time comes.

I'm still looking forward to a "trip report" if anyone is willing to take the time to type one up.

steviebhoy
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Post by steviebhoy » Wed Nov 17, 2010 2:19 pm

Had procedure on Sunday, no great issues, really tired that day & the day after, great staff at the Edinburgh Clinic, so professional and Dr Reid and the Anaesthestist are fantastic.
Having minor issues with MS, fatigue, numbnes etc, it's hard to say wether things are differant, but not yawning as much, so fatigue may have dropped & my eyesight may be better, but really hard to to say....early days but looks promising :D

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