Long time lurker...my journey begins Tuesday

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

Re: Long time lurker...my journey begins Tuesday

Postby Cece » Wed May 02, 2012 9:36 am

allynz wrote:...lesions on the brain vs the spine, the neuro says the spinal ones are our real problem - do you think it makes a difference in regards to CCSVI.
There was speculation early on that jugular blockages led to brain lesions and azygous blockages led to spinal lesions. That hasn't held up. But I would still advise that you want as thorough an examination of the azygous vein as possible. The more experience the IR has, the better. IVUS is indispensible, but I don't think there are any CCSVI IRs in Australia using IVUS.

Blockages in the jugulars can also lead to impaired cerebrospinal fluid flow, which affects the spinal cord. Blockages in the jugulars could be near to MS lesions in the cervical portion of the spinal cord. Some people with PPMS have lumbar veins (small veins that drain the spine) that are abnormally small. Those cannot be treated and not every doctor checks them, but as a patient it is helpful to know if you have this or not. There is also the possibility of renal vein stenosis. Not every IR checks for renal stenosis, but it has been suggested that a blockage in the renal vein redirects considerable flow into the cerebrospinal drainage routes.

It is harder to recover from spinal lesions because plasticity and recruiting new neural routes is a part of recovery and there is not much room for new routes or recruiting in the tightly-packed spinal cord. But improved blood flow could contribute to better nutrient levels at the neurons, waste removal, and less focal hypertension. It sets the stage for healing, if healing is possible.
Last edited by Cece on Wed May 02, 2012 2:28 pm, edited 1 time in total.
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Re: Long time lurker...my journey begins Tuesday

Postby numbness23 » Wed May 02, 2012 12:41 pm

No offense but r u in politics? That was about as vague and hypothetical as my senator :roll:
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Re: Long time lurker...my journey begins Tuesday

Postby Cece » Wed May 02, 2012 2:31 pm

Um, because how could being compared to a politician not be offensive?
Unless, that is, you're comparing me to Kirsty Duncan. :)
I edited in the question I was responding to. The assumption is that spinal lesions are caused by azygous blockages, but it's not been as simple as that.
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Re: Long time lurker...my journey begins Tuesday

Postby tiltawhirl » Wed May 02, 2012 2:52 pm

Cece wrote:Um, because how could being compared to a politician not be offensive?
Unless, that is, you're comparing me to Kirsty Duncan. :)
I edited in the question I was responding to. The assumption is that spinal lesions are caused by azygous blockages, but it's not been as simple as that.


As an aside, I have never shown any lesions anywhere on the spine in my MRIs, yet my walking and coordination were becoming more and more impaired. I can say unequivically that the lesions in my head were the only likely cause of motor skill deterioration, in my specific case.

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
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Re: Long time lurker...my journey begins Tuesday

Postby allynz » Wed May 09, 2012 11:49 am

Just watched your video - made my cry. So happy for you.
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Re: Long time lurker...my journey begins Tuesday

Postby allynz » Thu May 31, 2012 11:11 am

Tilt, and anyone else, where did you stay in Brooklyn? I'm leaning towards Best Western or Sleep Inn
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Re: Long time lurker...my journey begins Tuesday

Postby DougL » Thu May 31, 2012 11:40 am

allynz wrote:Tilt, and anyone else, where did you stay in Brooklyn? I'm leaning towards Best Western or Sleep Inn

last Sept - Holiday Inn Express. They have a deal with Dr S. Don't get a room in the basement and parking is not the best (and not free).
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Re: Long time lurker...my journey begins Tuesday

Postby Cece » Thu May 31, 2012 11:56 am

February 2011 - Marriott Brooklyn Bridge. Great views of statue of liberty but farther from the clinic.
July 2011 - Park Slope Super8. Worked well for us (and had free parking and breakfast) but it was not on the list that the clinic gives out. The one that is on the list (the Holiday Inn?) was around the corner and it may have better disability accommodation but was more expensive.
Good luck, allynz!
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Re: Long time lurker...my journey begins Tuesday

Postby tiltawhirl » Thu May 31, 2012 3:55 pm

allynz wrote:Tilt, and anyone else, where did you stay in Brooklyn? I'm leaning towards Best Western or Sleep Inn



Through a mis communication, we ended up at this Holiday Inn Express on Union St near 4th. They do not offer the American Access Care rate that the Holiday Inn Express on Butler St offers. We were happy in the end with the location as the Station Diner on the corner of 4th and Union had a wide selection of food available, had great service, and also delivered to the hotel if we didn't feel like going out. It was also a cheap car service ride to the clinic(I think it was $13 bucks or something). Google Streetview is great for getting your bearings before you go
Image

Google Streetview is great for getting your bearings before you go:
http://www.google.com/maps?ll=40.677993 ... 2,,0,-5.67


mmmm....skeghetti..
Image


All the best in your coming adventure!

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger
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