Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby jimmylegs » Wed Jan 21, 2009 9:14 am

measuring flow was therapeutic?
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Postby wobbly » Wed Jan 21, 2009 9:30 am

i am not sure or r they if it will help with current symptoms or help stop further attacks/ i am not really supposed 2 talk abt it but we with ms REALLY need hope / i do no that stents r in the works and EVERY1 tested had this problem even kids from what i have gathered it is being thought of as of genetic/ by the way zambonis wife has ms / he is dedicated 2 finding a cure that much i no --PEACE :?:
Last edited by wobbly on Thu Jan 29, 2009 2:10 pm, edited 1 time in total.
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Postby notasperfectasyou » Wed Jan 21, 2009 9:43 am

silly question ....... Kim just has an MRI with contrast, Gadolinium. Now, the contrast is supposed to work it's way through the veins to help the MRI. Do we know if the folks who are experts in this have info about how for some mysterious reason "MS people don't get the contrast pumps around as well as others" or "MS people require more contrast in order to make it work the way it does for weveryone else". Hummm........
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Postby CureOrBust » Wed Jan 21, 2009 7:10 pm

wobbly wrote:any questions just ask
Be careful what you wish for... :oops:

wobbly wrote:hi all /i am 1 of 4 americans who just went 2 italy 2 have this procedure done/ it is a joint venture with the research team in buffalo
Welcome to our site, having you read / post here is absolutely brilliant, I am glad you found us and decided to be visible.

wobbly wrote:I ... have this procedure done ... but i will tell u it was no big deal... i do no that stents r in the works
Did you actually have a procedure performed on yourself? or were you just tested?

wobbly wrote:i am not really supposed 2 talk abt it
I can understand your position, and if we ask questions you are not comfortable with answering, please feel free to say so.

wobbly wrote: however i got 2 no dr zamboni very well
I am trying to get the tests performed on me, with the results coming out either way (ie pass or fail Zamboni criteria) I plan to send them to Zamboni; your relationship may help this process for me. 8)

wobbly wrote:i have mri s and dopplers 4 sat 2 check what happened
Are your dopplers being performed at the Zamboni related labs in Baffalo or simply at a general sonography lab?

wobbly wrote:also i feel clearer and my intense heat sensitivity has gone away 4 now
Have you or any others seen EDSS improvements? Do you know if Zamboni is preparing any results showing de-activation of MRI conditions? and no re-activations etc etc?
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Postby wobbly » Thu Jan 22, 2009 3:52 pm

this is all new 2 me / i just got back from italy on sat/ the next tests will be performed here in buffalo as we i guess have very superior mri s / this is a joint deal w/research team here / that is the main reasen i was chosen and willing 2 go through the whole study/ funding is a big issue but i will tell u i met some big big shots 1 w/ms who r behind this / as i stated i am very bad w/computers so bear with me / but i do feel better head wise but my legs r still wobbly but i go everyday 2 the gym and my legs seem a little stronger/ i may behind in communication but info between the sides r being shared/ as 4 not saying anything i did sign a confidential agreement so that is why i am leary but we w/ms need HOPE/ SO I WILL TRY 2 UPDATE ALL ----PEACE 8) 8) 8)
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calcium dobesilate

Postby gibbledygook » Fri Jan 23, 2009 10:54 am

Was calcium dobesilate the stuff that people thought effective? Or was it calcium epa or coral calcium or something? At any rate calcium dobesilate looks good for chronic venous insufficiency. I found the paper on about page 35 of the 140 pages on this topic, in pubmed of course.

1: Angiology. 2008 Jun-Jul;59(3):352-6. Epub 2008 Apr 2. Links
Randomized, double blind, placebo-controlled clinical trial to evaluate the lymphagogue effect and clinical efficacy of calcium dobesilate in chronic venous disease.Flota-Cervera F, Flota-Ruiz C, Treviño C, Berber A.
Centro de Diagnostico de Enfermedades Cardiovasculares, Merida, Yucatan, Mexico.

The aims of the present study were to investigate the effect of calcium dobesilate on lymph flow and lymphovenous edema in patients with chronic venous disease. It was a randomized, placebo-controlled, double-blind clinical trial. Patients received 1 capsule of 500 mg calcium dobesilate every 8 hours (1.5 g/day) or placebo by 49 days. By the end of the treatment period, only the patients treated with calcium dobesilate had normalization of lymphogammagraphy (capture index and speed of lymph flow; 80 and 78%, respectively). Only patients treated with calcium dobesilate had statistically significant reduction in the perimeter of leg, calf, and ankle. Twenty-two out of 25 (88%) calcium dobesilate-treated patients presented clinical improvement versus 5 out of 24 (20.8%) in the placebo group. One patient on calcium dobesilate developed rash and one patient on placebo complained of vomiting. In the present study, calcium dobesilate normalized lymph physiology and improved symptoms in patients with chronic venous disease.

PMID: 18388097 [PubMed - indexed for MEDLINE]
link
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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Postby mrhodes40 » Fri Jan 23, 2009 2:40 pm

Yet another study by Zamboni and his team of researchers sent to me by a friend. I'll post it here for everyone

MORE patients and again 100% concordance:

The value of cerebral Doppler venous haemodynamics in the assessment of multiple sclerosis

Paolo Zamboni, Erica Menegatti, Roberto Galeotti, Anna Maria Malagoni, Giovanna Tacconi, Sergio Dall'Ara, Ilaria Bartolomei1, Fabrizio Salvi1


Received 14 September 2008; received in revised form 25 November 2008; accepted 27 November 2008. published online 14 January 2009.
Corrected Proof

Abstract
Iron stores in the white and deep grey matter in course of multiple sclerosis (MS) have never been explained and could be related to abnormalities in venous drainage, but this possibility has never before been investigated.

From an initial cohort of 320 subjects, after application of exclusion criteria, we selected 109 patients affected by MS, and 177 controls respectively composed by age- and sex-matched, healthy aged, and patients affected by other neurological diseases. They blindly underwent transcranial and extracranial Color–Doppler sonographic examination (TCCS-ECD), aimed at investigating five parameters related to normal cerebral venous outflow haemodynamics.

Overall we analyzed 1430 TCSS-ECD parameters. In controls we found 861 normal parameters of cerebral venous return vs. 24 anomalous, whereas in MS 288 parameters were normal and 257 anomalous, respectively. Consequently, each of the considered Doppler haemodynamic parameters, when compared to revised McDonald criteria as a gold standard of MS diagnosis, showed separately a highly significant sensitivity and a noteworthy specificity. However, the detection ≥2 parameters in the same subject, never observed in controls, perfectly overlapped the diagnosis of MS (value, 95%CI: sensitivity 100%, 97–100; specificity 100%, 98–100; positive predictive value 100%, 97–100, negative predictive value 100%, 98–100; p<0.0001). Moreover, this study demonstrates a significant impairment of cerebral venous drainage in patients affected by MS, a mechanism potentially related to increased iron stores
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Postby CureOrBust » Tue Jan 27, 2009 10:01 pm

AAAAARRRRRRGgggggggg! I just sent "my guy" an email to see if he had a date for me, then I realised I had used a BAD email address. He never got the first email! :oops: :twisted:

And NOW that he got it, he responded in 10 minutes!!!!!! ARGGGGHHHHH!!!

WITH A POSSIBLE APPOINTMENT FOR THE TESTS!!!!!!!!!!!!!!!!!
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Postby jimmylegs » Wed Jan 28, 2009 6:24 am

nice work cureo :)
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Postby Artifishual » Wed Jan 28, 2009 8:11 am

Last edited by Artifishual on Wed Jan 28, 2009 4:00 pm, edited 1 time in total.
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Postby wobbly » Wed Jan 28, 2009 12:58 pm

hi all--had follow up mri s and doppler sat/ got nothing abt mri but my veins in my neck as per the tech looked amazingly good compared 2 the doppler b4 the procedure more 2 come as it comes HOPE 8O 8O
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Postby mrhodes40 » Wed Jan 28, 2009 1:09 pm

Wobbly,
I know you recognize how much your info means to people, but I just want to say thank you so much for sharing what you can! It really does mean a lot.

I would have expected that the procedure to relieve the stricture would result in better blood flow, but the million dollar question is whether or not that means your "MS" becomes inactive. I hope it does!
Thanks so much!
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Postby mrhodes40 » Wed Jan 28, 2009 1:10 pm

Cur-o can't wait to hear what happens! I'm very excited for you! :D
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Postby DIM » Wed Jan 28, 2009 2:03 pm

wobbly wrote:hi all--had follow up mri s and doppler sat/ got nothing abt mri but my veins in my neck as per the tech looked amazingly good compared 2 the doppler b4 the procedure more 2 come as it comes HOPE 8O 8O

Thanks for sharing with us your personal experiences Wobbly, although we - here in Greece - are quite close to Zamboni's team it's big decision to go for the surgery or isn't this what you have done?
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Postby cheerleader » Wed Jan 28, 2009 2:53 pm

OK...I had to pop in today (so hard to stay away :) )and I'm so glad I did. Thank you, Wobbly. You've given us all great hope. We realize you have to be discreet, but thanks for the encouragement. I'm sending you good thoughts for continued healing. Hope your MRI has wonderful news for you!

From what Zamboni has told me, this is an endovascular procedure, meaning it is with local anesthetic only and uses a catheter to open the vein. Not a major cutting open surgery, it's an outpatient procedure. It sounds like stents are in the works, according to Wobbly. This would provide a permanent solution to keeping the vein open and might involve a more complex operation. Not sure.

Now knowing that Zamboni's wife has MS explains so much to me. The amount of research and published papers he has generated show the determination of a "man possessed."
We're still dealing with resistance at our vascular dept. I'll keep checking in.
sending good thoughts to all (and a hetero hug to Arti),
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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