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A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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peekaboo
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Post by peekaboo »

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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patientx
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Post by patientx »

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?
LR1234
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Post by LR1234 »

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Last edited by LR1234 on Tue Mar 06, 2012 7:21 am, edited 1 time in total.
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patientx
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Post by patientx »

That sounds like a pretty reasonable approach.
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Last edited by LR1234 on Tue Mar 06, 2012 7:21 am, edited 1 time in total.
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gibbledygook
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Post by gibbledygook »

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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Post by LR1234 »

Good luck with that Gibb! Hopefully you can get them motivated to start their own investigations in to the theory!
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peekaboo
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Post by peekaboo »

Gibbs & LR You two are doing a great job over there! Somethings going to give :)
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gibbledygook
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Post by gibbledygook »

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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Post by LR1234 »

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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Last edited by LR1234 on Tue Mar 06, 2012 7:22 am, edited 1 time in total.
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peekaboo
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Post by peekaboo »

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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gibbledygook
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Post by gibbledygook »

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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whyRwehere
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Post by whyRwehere »

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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Jamie
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Post by Jamie »

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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