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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Interrupted
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Post by Interrupted » Wed Nov 17, 2010 3:00 pm

The doppler guy told me yesterday that they had performed (i'm pretty sure he said) 21 procedures to that point.
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.

steviebhoy
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Post by steviebhoy » Thu Nov 18, 2010 1:14 am

That's about right, I was No 14.....Still good today, fatigue has definetly dropped...significantly :P

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EJC
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Post by EJC » Thu Nov 18, 2010 6:10 am

Great News Stevie.

How did it all work for you?

Did you go in for a venogram one day then back a day or two later for the procedure or was it all one event?

What kind of follow up was there (a scan to check things are still open?)

Were you given any meds (or any suggested) for the immediate period after the procedure?

questions questions.

steviebhoy
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Post by steviebhoy » Thu Nov 18, 2010 12:06 pm

Was scanned back in June, 1st to get done, photo on EHC website.
Have been anxiously waiting for the procedure, hey it's taken alot talking and a few brick walls by the sound of it, but it's all been worth it I think!!
Azigous vein blocked and 2 blockages on R ight side of head & 1 on left. No stents....kinda glad of that, on Aspirin for a few months.
I think eyesight is better, everything seems in focus, like watching in HD :) Fatigue is far far better, would normally be yawning all day...hasn't happenned since Tuesday....early yet :D
will be checked in 6 months at the EHC in Glasgow
Wonderfull people at the EHC and the thorough professionals at the Edinburgh Clinic.
Can't wipe the smile off my face :D

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EJC
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Post by EJC » Thu Nov 18, 2010 12:32 pm

Sounds really good Stevie.

Do post updates as and when you feel up to it.

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Coolcatcarrie
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Post by Coolcatcarrie » Thu Nov 18, 2010 2:56 pm

Thanks Stevie! Loads of congrats! :D

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Coolcatcarrie
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Post by Coolcatcarrie » Thu Nov 18, 2010 2:57 pm

Thanks Stevie! Loads of congrats! :D

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Post by steviebhoy » Sun Nov 21, 2010 2:56 pm

Update on symptoms....well lack of them :D
Was at friends of ours this afternoon for their eldest boys birthday...house was extremely hot and I would usually be in and out of the door trying to cool down, heat tolence is very low...well...never happened..was able to stand the heat when others were complaining about it..another symptom bites the dust... happy days :D

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EJC
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Post by EJC » Sun Nov 21, 2010 3:11 pm

That is good news, I hope you continue to show further improvements.

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Jasper9
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Post by Jasper9 » Sat Nov 27, 2010 2:42 am

sounds promising steve. any update on your progress?

or does anyone else have any feedback on procedures at Edinburgh? I've had a positive scan and am on the list for angio. just wanting to gather as much info as possible before then

I keep checking the EHC website for any updates - they havent yet published the videos of presentations from the conference last month. it would be very interesing to hear them.

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silverbirch
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Post by silverbirch » Sat Nov 27, 2010 3:02 am

Jasper9 wrote:or does anyone else have any feedback on procedures at Edinburgh? I've had a positive scan and am on the list for angio. just wanting to gather as much info as possible before then
Some of the EHC paitents are reporting in UK forums

ms friends & ms-ccsvi-uk

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EJC
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Post by EJC » Sat Nov 27, 2010 4:07 am

silverbirch wrote:
Jasper9 wrote:or does anyone else have any feedback on procedures at Edinburgh? I've had a positive scan and am on the list for angio. just wanting to gather as much info as possible before then
Some of the EHC paitents are reporting in UK forums

ms friends & ms-ccsvi-uk
Maybe it's just me, (I am terrible with facebook - it's layout is a shambles)

But I can't find posts on either of those sites reporting procedure results from EHC.

Any chance of a link to something?

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Coolcatcarrie
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Post by Coolcatcarrie » Sat Nov 27, 2010 4:15 am

Neither can I, sorry to be a pain but a link would be great if u could? X

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silverbirch
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Post by silverbirch » Sat Nov 27, 2010 5:55 am

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

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BalsaBoy
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Post by BalsaBoy » Sat Nov 27, 2010 9:57 am

Had the CCSVI procedure on November 23rd at the Edinburgh Clinic. Great staff there. Had stenosis left and right and valve problems on left side. Azygous not too bad. No miracles so far but improvements in walking, climbing stairs and lifting feet in general. Haven't experienced any pain in my feet since either. Sleeping better, head clearer too. Come to think of it it is pretty miraculous. Here's hoping my veins stay open.

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