CCSVI websites with numerous links for more information

Here is just one of the informative presentations available through the ccxvibook.com website links page :

Dr Gary Siskin: The Albany CCSVI Experience  (about 45 minutes Video of talk)     

http://www.youtube.com/watch?v=jSIE5LFGsS4&feature=BF&list=PLCC6FC04B417CC189&index=5<

The following link is a written account of a physician who had the CCSVI procedure done in Nov 2010.

http://www.drbillcode.com/CCSVI.pdf< 

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
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  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
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CCSIV Alliance website link : http://www.ccsvi.org/<

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
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Linking recent posts and comments on CCVSI:   http://www.cpnhelp.org/ive_had_3_ccsvi_treatment<
  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
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Ah, Louise, I wondered when you would find our ccsvi discussion of a few weeks ago!  I still hold exactly the same view as then: if someone feels that ccsvi intervention might help them, then they should go ahead, but don't expect miracles because the forum at  ThisisMS has too many people going back for more attempts to make it work, thinking  "Well, it must work eventually because these top vascular surgeons said it was the cause of MS."  (Subtext: vascular surgeons know very little about the brain.)    
    
My biggest worry is that someone on CAPi stops taking abxi in order to have this done.  They might be further advanced in their treatment than they realize.  I guess the vascular surgeon will prefer you to stop, but only so that you will know if his/her treatment is working.  I do know that you are encouraging people to carry on, but people by and large, are timid and will obey the doctor...................Sarah    
    
A Journey through Light and Shadow
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Louise thanks for your link. It has helped me to decide about the CCSVI treatment but maybe not in the way you wait. I read SammyJo´s story and I compared every word she wrote with me. The only difference between Sammy and me is that I haven´t had done CCSVI treatment.

Sammy´s and my state before starting the treatment (Sammy - CCSVI , me - abxi) symptoms were more or less the same. Maybe my walking was better. I have never used two canes. I was EDSSi 5,5.

Sammy´s improvements                                   my improvements

no cold legs and hands                                       the same immed. after starting abxi<

improved spasm                                             I think I´ve forgotten what it is-no spasm

 cognitive function                                           great improvements and still improving

 urgency                                                          during day 99%ok, at night 80%ok

household work                                               I can do more and more

 to tap right foot 10                                         I just did 20 times and I could more

jump on toes while support                              I did maybe 2cm

walk without support a few steps                    I can walk 2-10 steps        

 What I know for sure if it weren´t for abx treatment I would certainly go for CCSVI. I think that CCSVI isn´t the primary cause it´s an "intercause" or "interresult" leading to MS. The primary cause is cpni. And I want to hit and kill the primary cause. I still see big problem with my joints and lower back. I am afraid CCSVI for it doesn´t exist. And the next difference between me and Sammy is she does some exercises and I don´t. I think this is my disadvantage that  I don´t exercise. What Sammy noticed that exercising shoulders helps balance. I know this for more than 15 years. But not only shoulders and also all upper part of body. I think that even moving round the flat is enough for working legs but upper part must be also worked out to reach the balance. Sarah now I realized that your painting helped you much - you worked and work out your upper partWink.       

 

MSi for more than 30 years, WP since July 08, break Jan 09-March 09. NACi 2x600mg, Doxyi 2x100mg, Roxi 2x150mg, Entizol in pulzes, LDNi, supplementsi.Since May 2013 without abxi.

 
Exercise for MSi!  -  My painting surely helped me: after my 2003 diagnosis of SPMSi, I was unable to use my right arm at all but its use started to return after starting CAPi in early August of that year.  After my brain fog cleared if I hadn't been able to paint then I wouldn't wanted to have carried on living, so I worked on it.  Oil painting involves standing at my easel whereas watercolour involves sitting but often standing and leaning right over my painting table in funny postures.  I have to be able to balance for this to avoid falling over.  Working on my ellipse helps no end because it exercises all of your body.  One more thing is that we live in a three storied house, four if you include the basement and my studio is in the middle, so lots of steps to go up and down.  That is one of the best forms of exercise.     
    
Don't forget though, that apart from MS I have always been fit and healthy....................Sarah     
    
A Journey through Light and Shadow
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi Evita, I think that you misunderstand my posting of this link to mean advocating for CCSVI and that is not the intention. 

I posted it as a location to gather links on the general topic of CCSVI.  

I am interested CCSVI in a general way as I do not have an MSi diagnosis.  However, I do like to keep learning about new options in treatment of chronic illness. 

I know friends with MS who are not the least bit interested in CAPi which is unfortunate.   But they might consider CCSVI at some point.   I think it is early in development of the treatment and that to wait if your symptoms are rather mild would be good discretion. Certainly everyone must weigh and measure their own options.    Personally, as Sarah pointed out several comments ago, I have questioned people who think it must be just one or the other approach.   

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
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Yes, Sarah it´s excellent that you could and can do all this exercises while painting. The best thing is you do them unconsciously and exercises are often conscious and it ´s sometimes a struggle and one is then lazy to do them. But the fact is that without moving or exercising or doing an activity there is hardly any progress. 

Louise there wasn´t a misunderstanding. I know you pasted these links to help. I just realized when reading the story of results of the CCSVI intervention that I have reached almost all the improvements and I am still improving after each pulse. It strongly depends on how one is when he goes on the CCSVI intervention. It´s perfect that there are possibilities for improvement but the question is how long it will last. I have also read the story of a woman in my country. She was on the intervention in Poland and she was one of the first patients. She was eager to go there, she had great improvements after it but unfortunately within a year her state was the same as before the intervention. The fact is she has never been on abxi. So it isn´t really so simple to treat MSi. And if one once gets an improvement and then it is away it must really be a shock.

MSi for more than 30 years, WP since July 08, break Jan 09-March 09. NACi 2x600mg, Doxyi 2x100mg, Roxi 2x150mg, Entizol in pulzes, LDNi, supplementsi.Since May 2013 without abxi.

Evita, Bravo, so glad that CAPi has helped so much with your progress in healing from MSi may all who take CAP find the same response as yours. 

I too strongly value CAP in my personal situation.  I have spoken strongly for it's effect and on the return of my strength and wellness.  I have been off all CAP for over a year now.   It may be all I need or at some point I may be back for more treatment who can really say. 

There are many stories on both sides of CAP vs CCSVI, I see blending of approaches as likely the best of both worlds. 

None of our illnesses are simple that is for certain and each of us is an individual subset of symptoms.    Still I would rather have a one year reprieve if possible to not having any reprieve at all so there are many ways of looking at this big picture..

 Should I find more appropriate links over time I will post them on this link, not to creat debate but to create an archive so that I can follow the treatment over time.

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
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Journal and Vascular and Interventional Radiology article;

Abstract No. 257: The ipact of internet-based social networking on the evolution of endovascular treatment for multiple sclerosis (MSi) patients with chronic cerebrospinal venous insufficiency (CCSVI)

http://www.jvir.org/article/S1051-0443(11)00284-3/fulltext<

http://download.journals.elsevierhealth.com/pdfs/journals/1051-0443/PIIS1051044311002843.pdf<

 

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
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I wonder if CCSVI, or venous stenoses are not a defense reaction from the body trying to protect tissues as long as possible... on thisisms, i have seen people restenose right after surgery and others even get worse after `liberation`... those tend to prove that maybe venous blockage is actually a `good`thing, either because less blood flow, means less pathogens, or brain inflammtaion means more blood to repair tissues as in this study :

 http://www.medicalnewstoday.com/articles/168408.php<

who knows?  but i certainely do not think that CCSVI is a miracle cure....

Diagnosed with MSi on March 2009, started CAPi on Jan 2010. Doxyi 200mg- Roxyi 300mg- NACi and all major supplementsi.
 
Louise, here is another  bookmark posting for you, posted on Wordpress:
If you click on the author's name, you will find more.  He is a medical doctor, by the way, Colin Rose, a community cardiologist from Montreal, who trained at Mc. Gill University.  He will know the vascular system from the heart outwards......................Sarah     
    
A Journey through Light and Shadow
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Yes, Sarah, Information should contain both pro and con perspectives.  

This doctors comments seem a bit like so many MD's of various other disciplines, such as Infectious Disease Specialists, who disregard any credibility to the facts regarding the existence of persistent bacterial infectionsi such as C.Pn. and Bb, etc.   

There is certainly room for links here, both those containing supporting and non-supporting information regarding the spectrum of CCSVI treatment information.   

What I found interesting, somewhere along my brief reading on the subject, is that this anatomical variant of the venous vasculature could eventually play into perhaps an effect on other debilitating disease presentations,  some of the MSi community seem to be the first to demand exploration for it's presence.  Unfortunately I cannot say where I saw that comment, but anyway it was an interesting supposition. 

I do hope others will add supporting and non-supporting links as they find them to keep this thread up to date.

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
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Conclusions of the first annual meeting of the International Society for Neurovascular Disease, Bologna, 15 March 2011.<

Prof Zamboni’s co-chair was Prof Nicolaides who headed the vascular research team at St. Mary’s Hospital in London and had important roles as President of many vascular societies world-wide.

Latest information on research world wide and indications for future progress - including an animal model.

 

speedbird

 No association of abnormal cranial venous drainage with multiple sclerosisi: a magnetic resonance venography and flow-quantification study

http://jnnp.bmj.com/content/82/4/429.abstract<

MSi for more than 30 years, WP since July 08, break Jan 09-March 09. NACi 2x600mg, Doxyi 2x100mg, Roxi 2x150mg, Entizol in pulzes, LDNi, supplementsi.Since May 2013 without abxi.

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