The Unmentionables..and Time

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

The Unmentionables..and Time

Postby mormiles » Fri Jun 26, 2009 6:57 am

Marie, Well, there are the symptoms of which we all speak freely---fatigue, imbalance, heat intolerance, impaired swallowing, foot drop, "franken-gait," spastic limbs, vision problems, slurred speech, weakness, muscle wasting, cognitive dysfunction and brain fog. But what about the "unmentionable" symptoms---bladder dysfunction, erectile dysfunction, chronic constipation and bowel dysfunction. Do you think the appropriate venous stent insertions could improve those problems? Even if they are long-standing problems?

It occurs to me that there may be a considerable time-gap for gaging how much recovery there will be when comparing the short-timers to the old-timers. For the old-timers who have more axonal damage, we may have to wait at least 2 years to allow for whatever nerve regrowth there will be (if any).
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby mrhodes40 » Fri Jun 26, 2009 8:36 am

may be a considerable time-gap for gaging how much recovery there will be when comparing the short-timers to the old-timers. For the old-timers who have more axonal damage, we may have to wait at least 2 years to allow for whatever nerve regrowth there will be (if any).


I agree. They did a study on Ottawa on MSers with a stem cell transplant where they gave them chemo as well as stems and they discovered that oddly a lot of healing suddenly took place 2 years post treatment they felt that was new nerves.... associated with the stem cells in their minds but hey we have stem cells too.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby notasperfectasyou » Fri Jun 26, 2009 10:37 am

I can only speculate. I think this approach will be found to coordinate well with the therapy Kim is on now. Kim's recovery of those symptoms are mentioned in my thread about her therapy. I speculate that folks who have had the procedure to relieve the blockage will recover from the symptoms you mention early in the recovery process.

For us it all begins with Kim's Neurologist appointment next week in Vanderbilt. I've not been here so much because we are getting ready for the trip. But, CCSVI will definitely be discussed. Ken
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Postby cheerleader » Fri Jun 26, 2009 11:49 am

Joyce...it appears the immediate results from CCSVI come from the new oxygenation and fluid level changes in the brain. Jeff felt an immediate clearing of "the fog" and this was not due to lesion healing, but to his brain's new ability to utilize the oxygen coming in via his arteries. His "perfusion time" went from slowed to normal, any intracranial hypertension was normalized, and this allowed for better heat regulation and less fatigue.

The "unmentionables" tend to be related to lesions, and more often are cervical and spinal lesions. The brain has more neuronal areas to recruit from, and better plasticity than the spine. Jeff's cervical spine lesion is more likely responsible for his leg pain, urgent bladder and spasms. Although these symptoms are remitting (they are no longer daily) -they are still present. Will be interesting to see if he has any lesion healing, since his newest ones are 2 years old. But I am confidant the grey matter damage (which isn't seen unless you get a 7Tesla MRI)- will be slowed, if not stopped- thanks to his new drainage.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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