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A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby peekaboo » Thu Jul 16, 2009 8:02 am

Here's to Friday! Can't wait to find out what your Doc says about misreading your scans. This is very promising for the UK and the folks over there.
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Postby patientx » Thu Jul 16, 2009 6:15 pm

peekaboo wrote:Here's to Friday! Can't wait to find out what your Doc says about misreading your scans. This is very promising for the UK and the folks over there.


Who says the scans were misread?
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Postby LR1234 » Fri Jul 17, 2009 12:51 pm

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Postby patientx » Fri Jul 17, 2009 4:24 pm

That sounds like a pretty reasonable approach.
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Postby LR1234 » Sat Jul 18, 2009 1:23 am

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Postby gibbledygook » Sun Jul 19, 2009 5:45 am

Well done L!

What a slog this is. I'm still waiting for Dake's recommendation at ST Thomas'. I'm seeing another doctor tomorrow with the scans but they are in radiology not neuro-cardio-thoracic-vascular...but it is university college london so maybe something will happen.
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,
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Postby LR1234 » Sun Jul 19, 2009 6:13 am

Good luck with that Gibb! Hopefully you can get them motivated to start their own investigations in to the theory!
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Postby peekaboo » Sun Jul 19, 2009 6:50 am

Gibbs & LR You two are doing a great job over there! Somethings going to give :)
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Postby gibbledygook » Tue Jul 21, 2009 1:00 pm

Right well University college London hospital now has my scans on the Pax system which means that any doctor who is interested can have a look if they search on my name, Alexandra Gibbs.

I'm still trying to get a name from Dake for the contact at St Thomas' but I guess he's pretty busy with balloons and stents right now!
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,
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Postby LR1234 » Tue Jul 21, 2009 1:41 pm

Well done Alex!! We now need to make more of the neurologists and vascular dr's who can access the system aware of your scans.

I have my dopplers Thursday so I will keep you posted on that.
Anyone have an idea what a duplex doppler is? Apparantly I am having one of those.
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Postby LR1234 » Wed Jul 22, 2009 8:23 am

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Postby peekaboo » Wed Jul 22, 2009 8:31 am

Do you have any examples of CCSVI dopplers? there were some on Zamboni papers. That might help the guy/gal doing them..

Regardless...fingers, toes, eyes you name their crossed for you and fir results that mean something :!:
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Postby gibbledygook » Wed Jul 22, 2009 12:23 pm

good luck L! I had shocking pain in my left cheekbone after the stent was put in so I think many of the veins in my face may have been trying to take the load...
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,
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Postby whyRwehere » Wed Jul 22, 2009 3:57 pm

If they say there is nothing wrong, don't dismay...they may just see it as being nothing wrong. Ask them to be very honest to you about what they DO see.
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Postby Jamie » Wed Jul 22, 2009 4:40 pm

Agreed, they are hard to read.

However it would be ace if local places could start to follow a standardised check that cut out all the travel for everyone.

Hope it comes up positive.
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