Here is my first installment on my series on the newest theory behind multiple sclerosis (MS): CCSVI or chronic cerebrospinal venous insufficiency.
These articles are short and fairly simply presented, which is by design. This is a very new theory and in many of the stories that I have read about CCSVI, many assumptions have been made and facts (and hypotheses) skimmed over in the rush to get people excited about a potential new "cure" (a word that I am reluctant to use at this point). My goal is to take it slowly and get everything that is known out there, so that we are all on the same page for fruitful discussion.
Here are the first couple of steps in our journey, with more to follow:
Im not yet convinced that CCSVI is a sole causitive factor in MS.But Im excited about the news none the less. As skeptical as the medical establishment is it still remains this is the fist step to anywhere(forward,backward,to the side) in I dont know how long. 30 years ago when my mother was diagnosed with MS the NMSS was touting that ‘A cure is just around the corner’. How far away is this corner? Now that Ive been drafted as a second generation MSer that question angers me even more. What is ‘they’ are researching? 30 plus years of studies trials and nothing substantial to show for it. This poalo guy works on it for 5 years and comes up with this whole CCSVI concept.And does it while dealing with his own neurological condition.What gives?
I may seem a little bitter but thats only because I am.To my mind the true reluctance is not in being unsure of the treatment but in not wanting to be shown to be wrong. going against party lines and all.we can jump start and expidite R&D work on a flu vaccine. We’ll be waiting 20 years for ‘further research’ to be done.And its because of one or the other….
lack of faith that there truly could be something to this.the pot of gold at the rainbows end, or the want of profits.
I had the diagnostic tests & then a “veinoplasty”for stenosis of the L Jugular vein in Poland on Dec 29,2009. My worst symptons were severe fatigue,vision problems,headaches,bladder,
balance,etc.etc.Considerable improvement since the treatment.I,m sleeping better,&feeling so much better.Medical care & the facilities were Ex. Glad I went.!!!!!
Ruth
My sysmptoms are just like yours, was diagnosed 10 years ago…it sucks, turned my life upsaide down. I have the surgery booked for June 1st in Caloifornis, too nervpous to be excited afraid to be disappointed, how are you now?
Dana
I live in Italy (home to Dr. Zamboni) and two days ago spoke to my neurologist about Dr. Zamboni’s discoveries. From a clinical point of view there still is much study to be done on the matter given that Dr. Zamboni’s studies are practically based on his sole experience and have not been clinically tested according to the established testing procedures (against placebo in controlled groups, etc.). My neurologist did admit that there are good medical grounds for his theory but they need to be proven in medical environments other than his.
Randall Shreve your comment leaves many questions that i have been trying to find an answer, first of all Julie the ”(and hypotheses) (a word that I am reluctant to use at this point)” is a good answer for this, we leave in hard age the one that is controlled by money and because wealthy countries search for people that can find cure a lot of scams surface and a lot of people doing research on MS are going in deferent paths the thing that angers u about ”the cure is on the corner” is a typical thing because ms does not cut the life spam and so “doctors” are not in a hurry as one might say. The time we leave in may be the cause of ms but then what and how can we help ourselfs is the answer but the more important question is do we want to help ourselfs when living in agony for a long time.
I had the treatment in Poland as well on 25 Nov’ ‘09
My left jugular had an inverted valve and the right one was blocked with a membrane.
Both problems are visible on my MRV scans.
Both were corrected with angioplasty.
There have been at least 12 major improvements with symptoms, some immediate.
One of the members of the CCSVI forum on Thisisms.com had his jugular vein issues caused by internal jugular veins that are too short. This makes me think that it must be CCSVI causing MS rather than vice versa as I can’t imagine a way MS would cause him to develop short internal jugular veins.
Hi Julie, all,
I read that not all MS sufferers are candidates for the treatment, but at least four different hospitals in North America are recruiting people for clinical trials. This includes St. Josephs Hospital in Hamilton, Ontario; the University of Buffalo team lead by Dr Robert Zivadinov recruiting 1100 people to test Zamboni’s theory, University of British Columbia and Professor Mark Haake from McMaster University and Wayne State University in Detroit, Michigan collaborating with Dr. Zamboni. So there is great interest in proving/disproving the theory and I hope important conclusions come out of the studies.
Ruth, I am happy to read what you wrote. I am looking forward to my appt. in Poland and now am reassured that I have made the right decision to do so. Thank you for writing. I hope you continue to improve and get your life back!!
Hi does anyone know of any other Doctor’s that are performing the Liberation Treatment other than in Poland? I heard that they made Dr. Zamboni stop doing the procedure in Italy is this true? We are a Medical Tourism company based in Vancouver, Canada and we got in contact with Dr. Simka in Poland and she said they are not accepting any new patients at the moment until they get a larger location. She said they are already booked up for 2011. I thought this was amazing. Any comments would be appreciated.
Thanks
Travis
passportmedical.com
Hello,
i had the liberation procedure done in Poland on the 5th of January 2010.
The results are absolutely amazing and some of them happaned pretty uch right after the procedure. i also do continue to improve on daily bases. My husband tells me that he has goten his wife back. I feel like a reborn being who might in time forget about MS altogether.
Should anyone be interested to hear details about the procedure and my specific improvments pls contact me at tillmann.e@gmail.com.
Additonally i i would like to pass on here a good news that a new facilities will be open for MS patients in Warsaw Poland.
Here is the website :: http://www.ameds.pl , as far as i have learned the clinic will be admitting patients since early April 2010, but they are already open to book procedures. ms@ameds.pl
Eva
hi im happy for you my doughter has ms we just did the test @ fals creak surgical center in Vancouver bc Canada still waiting for results. So fahr we can see it has blockages and we are shopping for a surgen. Can you tell me about the price and how was it, accomodation state of the hospital and was staff and doctors speaking english.
please sighn on wwww.gopetition.com/petitions/theliberation-procedure.html
Folks,
I am more sceptical than most people but I’ve had a very mild form of MS for decades and it is now progressing such that I have difficulty with walking and a lot of cognitive issues.
I have followed the debate for weeks, read all the relevant papers and discussed with my family doctor. Just in case I asked him to send me to a radiology outfit for a Color Doppler Ultrasound based on the CCSVI Menegatti 2008 protocol.
My Doppler ultrasound report came back as follows verbatim:
1. Internal jugular veins too small to see in the erect position.
2. Marked low flows demonstrated in both right and left internal jugular veins in the supine position. Low flows also demonstrated in both vertebral arteries with also low dimensions.
3. Inverted valve of the left internal jugular vein with mild wall thickening.
I am shocked but not surprised and consider myself lucky that the doctor and radiographer had an open mind, which I’ve found is a rare commodity amongst medicos and scientists.
I am now waiting for vascular assessment and hopefully angioplasty to correct my very narrow veins and arteries as well as the inverted valve.
Logic is telling me that if this blockage is only found in MS Patients, it’s not such a far cry to suggest that it’s safe removal can only lessen the dangers. Thank you for keeping this topic in the limelight because any delay in the acceptance of CCSVi is only, likely to result, in endangering, the quality of lives of many of the estimated 2.5 million MS sufferers.
We need to stop arguing about who is right and who is wrong and re-program our pre-programmed ideas about MS. The critics have yet to offer a better solution. Drugs only slow down the attacks. This could be the start of a new understanding of how MS works. Until then, keep up the good work, keeping this issue live. MS is a race against time, Dr Zamboni is beginning to transform how we view and treat this illness.
Dr Stachowiak, could you please re-add the link to the website, which I feel is very relevant to this topic. My goal is to raise awareness of CCSVI in a manner my peers will understand. All proceeds of the site is going directly to MS patients.
If you believe the information on this site to be inaccurate, please contact me and give me your reasons, I will view it as a positive contribution.
As a webmaster, I have no interest in competing with another site for expose, my aim it to relay the best and most accurate information, relevant to this illness.
This is my mindset from a personal point of view:
http://multiplesclerosissurgery.com/contact-us.html
This is what I am concerned about:
http://csvi-ms.net/en/content/hope-elation-frustration-anger-fear-loathing-contrasting-emotional-responses-revolutionary-d
This is a topic we should all be working together with. 100% of MS patients wan’t the same thing, and I am doing the best I possibly can, to give them a fighting chance.
can anyone tell me where in poland the ccsvi operation is available, Re sky news report last week, someone must know where this operation is available, my wife is getting worse with primary progressive ms and is willing to try anything and go anywhere , someone please help
New CCSVI examination and treatment is going to be open in April near Warsaw, Poland.
Inquiries can be sent to: ms@ameds.pl
How important is a second chance for people with MS?
Has anyone had the CCSVI test done because of a myriad of neurological conditions that are unexplainable but not exactly diagnosed as MS? My Mom has MS and had the test done which showed blockages. I’ve heard that CCSVI can be hereditary.
My symptoms are numbness/tingling in extremities, head gets extremely hot and face flushes, low/middle back pain that builds during the day to almost unbearable (after $20k of tests no explanation whatsoever), pain in hips that comes/goes, odd sensations all over the place, vision disturbances that are getting worse, weakness/trouble walking sometimes, trembling of hands/legs, awful sleep disturbances, and there is more. I also have lichen planus that won’t go away, amblyopia in the left eye, hyperhydrosis all over, and I forget the rest. Extreme fatigue too.
Anyone have any ideas? I’m getting the CCSVI test next Thursday.
32 yr old male.
Critics and opponents of CCSVI seem to be missing a few very important points. First of all, this is not a new surgical procedure, it’s simply a new way of looking at MS. Second, it’s safer than many of the drugs used to “treat” MS (and I use the term “treat” loosely). Finally, time is not on your side if you’ve got MS. Many of the CCSVI researchers, including Zamboni himself, assert that the procedure is more effective if it’s done early on. Can you blame us for not wanting to wait? The best news any of us have heard regarding treatment is, “Well, this will slow down the progression, but you’re still going to get worse eventually.”
My only wish right now is to be able to WALK across the stage when I get my master’s. The Liberation surgery seems like my best bet, and I’ll go to the ends of the earth to get it. And I’m a neuroscience researcher. Funny how your perspective changes when you’re the patient.