Post Treament People w/ Good Results-Banding in Spinal Tap?

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

Good results from CCSVI treament and....

Yes, I had the banding in my spinal fluid
2
29%
No, there were no bands in my spinal fluid
3
43%
Don't know - never had a spinal tap
2
29%
 
Total votes : 7

Post Treament People w/ Good Results-Banding in Spinal Tap?

Postby jacksonsmommy » Thu Jan 20, 2011 3:43 pm

Just wondering about something.

I had great CCSVI treament results. I had clinically definite RRMS, but my spinal tap did not show the bands.

For others who have had successful CCSVI treatment (ie. feeling better), did you have the bands in your spinal fluid? I realize that many people who have been diagnosed with MS have never had a spinal tap/lumbar puncture.

Maybe only those of us without the banding do well with treatment? This line of thinking follows the whole MS is more than one disease theory.
CCSVI procedure May 31, 2010
RRMS - Official diagnosis January 2009
MS symptoms since at least 2000 (EBV trigger 98?)
75 - 80% Resistant Stenosis in Left Jugular - Stent
Tokuda Hospital, Bulgaria (Dr. Petrov)
Immediate and substantial results!!
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Postby Cece » Thu Jan 20, 2011 4:08 pm

Well, I had no bands in my spinal tap, but that was five years ago. I've been stable, but I can't say for sure that there are still no bands. I'll be sure to post in here once I have the venoplasty done (next month).

How would this fit with CCSVI theory? Would no banding mean our damage is all purely done by CCSVI? And banding is an indication of the immune response, meaning that a cascade of possibly excessive immune responses is in play? It's an interesting theory. My memory may be faulty but I think it's about 90% of pwMS who have the oligoclonal bands. Indicative of inflammation of the CNS and it doesn't have to be recent inflammation, it can be already past but the banding will still show up. So to not have bands would mean we did not have much of an inflammatory response?
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Postby jacksonsmommy » Thu Jan 20, 2011 4:16 pm

My very non-scientific thinking is maybe only a sub-set of MSers will be helped my CCSVI.

Reason being that we don't all actually have the exact same disease?
CCSVI procedure May 31, 2010
RRMS - Official diagnosis January 2009
MS symptoms since at least 2000 (EBV trigger 98?)
75 - 80% Resistant Stenosis in Left Jugular - Stent
Tokuda Hospital, Bulgaria (Dr. Petrov)
Immediate and substantial results!!
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jacksonsmommy
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Posts: 28
Joined: Sun Nov 14, 2010 4:00 pm
Location: Alberta, Canada

Postby silverbirch » Thu Jan 20, 2011 4:29 pm

I had a spinal/LP May 2009 low oli bands DX with RR MS june ?2009
I had CCSVI July 2010 LIJ my seven month follow good and as far as looking for the collaterals.... via screening tool no sign of them this was further backed up by the blood flow rates

Prior to the attack 2009 (paralised right hand side) I had suffered migraines since a car accident I was in 20 years ago (or near that ???)

Im good although since attack Ive never had another migraine !!!!!

prior to CCSVI - my right leg was heavy after procedure my leg was only heavy from knee down over the 7 months the knee down has lifted now at 98%

Edit - Neuro Spinal tap carries 10/15% towards DX of MS
Hope the above helps
Last edited by silverbirch on Fri Jan 21, 2011 8:15 am, edited 1 time in total.
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Postby HFogerty » Thu Jan 20, 2011 5:33 pm

I had numerous bands that showed up on the results of my spinal tap. I have had the procedure done in October with many improvements that have lasted to date. So maybe the bands make no difference in whether treatment will help or not.
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