Those who had L.treatment, how much did you mobility improve

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

Those who had L.treatment, how much did you mobility improve

Postby adamt » Sun Mar 14, 2010 12:15 pm

Hi,

For those that have already had the Liberation procedure and that have/had severe mobility problems.

e.g. i can only walk 5 metres comfortably, after this my legs weaken, and balance gets poorer.

So did the Liberation procedure improve your mobility?

If so, by how much...

e,g, before the procedure you could walk ..... at .... quality walking.
After treatment you can noe walk ..... at .... quality walking.

thank you
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Postby Merlyn » Sun Mar 14, 2010 12:19 pm

AdamT-please do an iron metabolism panel, because that stiffness of gait could be related to an overload of iron. When I think back, I can relate my increasing difficulty in walking to a continual accumulation of iron. If you are overloading iron, you will have to be taking very expensive iron chelators... did you know that this Exjade is running around $4000 Canadian a month? Good luck with that.
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Postby adamt » Sun Mar 14, 2010 3:41 pm

thanks merlyn

i will see if i get have this iron metabolism test.

Are there any cheaper alternative to reduce the iron i have in me ? (if i have too much iron in me)

can anyone share their mobility improvements they had with the liberation procedure pleasE?

thanks
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Postby gibbledygook » Mon Mar 15, 2010 9:11 am

Hi adamt,

I had quite bad walking difficulties with an EDSS of 6.5 as assessed by neurologists. Mobility never really altered after the surgery in June 09 although the spasticity did improve at least initially. What was stunning was the change in bladder control and night spasms. However these improvements deteriorated after I became pregnant in October 09. I expect this is due to my dramatic drop in blood pressure with the attendant problems on shear stress/blood mean transit time etc. I expect that others may see their walking improve but very gradually and imperceptibly, perhaps. Don't get pregnant!
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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