Conspiracy of CCSVI

the biggest scam in MS history revealed

Entries by tag: patient testimony

CCSVI: There is Money in Pseudoscience, and It Sells
Dr Zambo

"The basis for using venous angioplasty as a treatment for multiple sclerosis (MS), is the presumed pathophysiological mechanism of chronic cerebrospinal venous insufficiency (CCSVI).
No evidence has been found for the efficacy of angioplasty as a treatment for MS.
Using venous angioplasty to treat MS (with presumed CCSVI) does not comply with established medical science and medical practice."
- A. Veerman, MD; H.M. Gaasbeek Janzen, PHMD [College voor zorgverzekeringen (CVZ)]

"It is an unfortunate truth that there is money in pseudoscience, particularly medical pseudoscience. Money both attracts charlatans and also funds their activities, which includes marketing pseudoscience and defending their claims from scientific scrutiny. In this way the game is rigged in favor of pseudoscience...
The marketing strategy is three-fold. First, get naive professional athletes to endorse the product. Second, give live demonstrations (deceptive parlor tricks) that convince the unsuspecting that something must be going on. And third, wow the scientifically illiterate with a confusing barrage of medical techno-babble. The combination is sadly effective."
- Steven Novella, MD

"All scientific opinions create complex discussion, and the blend of passion and science that CCSVI and MS bring forth require tempered deliberation that should focus on data and facts. This necessitates a balance between scepticism and openness to new ideas. Although I am absolutely sure that there is no scientific proof for the existence of CCSVI and the pathologic relation in the development of MS, it is hard to believe that some of the people I have always known as honest scientists, with important contributions to the field of IR, have now adopted the habit of spreading false information, for whatever reason."
- Jim Reekers, MD [Amsterdam]

CCSVI Treatment: The Patient Experience, Part 4
Dr Zambo
May 31, 2011
Hi, i am after one liberation, still no restenosis (and i did the procedure more than a year ago!), but...i got a relapse, and from yesterday till friday i am on steroids... And? What you say?

Jul 17, 2010
For myself i've been liberated on 8th of july they hard a hard time finding one vein... (or have they find it)now i'm sittin home returned from Poland on the 12th of july with no improvement at all. anyone seen a restenosis in a week !!
I feel like crap with 13.000 less in bank account.

Jun 01, 2011
Mitch, I, too, had high hopes for the CCSVI treatments, but held off doing it without more 'proof.' Now, I'm not even thinking about it. My neurologist never hung a title on me -- I just figured I was RRMS. However, I've never had exacerbations, never relapsed, and never went into remission. I was on 2 different DMDs (Avonex and Copaxone) until I realized they were doing nothing. I really believe I'm PPMS, and as you said, no treatments are available.
So, I'm pretty much riding up that proverbial creek behind you, and no oars are in sight!

Jun 09, 2011
I just had an ultrasound on the stents in my neck. I already knew that my left stent was occluded in March. This time the IR discovered that my right stent is also occluded. I think this must be a new record. The odd thing is that much of the symptom improvement I noticed last September after my first procedure I still fell. Last summer I felt absolutely lousy, I'd say 100 where 100 is the worst I have felt. I went to zero (GOOD) in September. Now I am about 20 on my symptom scale. The IR I talked to (he is very good) told me that these are at the moment not fixable except with open surgery and he recommends against it. Maybe my neuro was right....
I took a risk and lost...

Jun 14, 2011
I am one of the frustrated ones. Joined in Dec. 09 and was in line for treatment at Stanford when they pulled the plug. Finally got treated in So Cal, but the benefits lasted only a couple days, and when I finally got follow-up check-up (at my own expense, of course) both jugs were restenosed with doppler showing reflux. My BCBS is refusing any payment, and I cannot pay the aprrox 10K out of pocket for retreatment that even the doc says will probably not result in little lasting improvement, so I am not sure what to do. I really don't want a stent. With PPMS I am sure that most of my nerve damage is permanent, but not sure what else good might come of retreatment.

May 18, 2011
We are back, sorry it has been so long, since Oct'10 when we went to Bulgaria..... So just a quick update ... L... is not doing well at all after Bulgaria, she had no benefits at all and is in fact worse than ever... We have now decided that she will be third time lucky and we fly to California to PI on June 29th(livabirds birthday), consultation with Dr Arata on June 30th, procedure on July 1st(Canada Day, quite fitting) We will then just relax and have a family holiday until July 18th.... As always we will keep you all up to date with her progress and our hopefully not so adventurous adventure this time, as you remember Poland was the volcana, Bulgaria was the robbery.... so California, well they are due for an earthquake Cool Cool Cool , but not while we are there... Anyways good to be back and sorry we don't have any better news... but we will keep going.....

May 18, 2011
I am annoyed at the fact that people making any negative comments about a treatment centre are criticised. There are many people who are still looking to be treated and I think it is important for them to have all the facts. L... hubby is allowed to comment that the procedure did not work for his wife and to criticise the centre if he decides to. I however will say not only did it not work for me but I got a P.E and clotted vein whilst still in Bulgaria...I called the emergency dr in 8 times that night plus I reported how I felt to both main Dr's at the centre and was not helped at all. I am fully mobile and do not lhave a physical disabillity so spent a lot of time chasing dr's and nurses around the corridor begging for someone to help me, when that failed I got on a plane risking death back to the UK where I was promptly treated with heparin and given oxygen as the P.E had severely affected my ability to breathe.
I am very annoyed at the treatment I received in Bulgaria and feel to this day I am lucky to be alive!! So sorry for the rant but I do want people to know if they are going to Bulgaria (which I strongly suggest they don't) to bear in mind my experience.
I did get robbed and injured!!

Jun 04, 2010
... I`m one that finds new issues post-procedure, but still have at least eliminated my limp. I see stories of so many who have `brand new lives`post-procedure, and hoped that for myself, but it doesn`t seem to be that way for me, at least not now.
There have been no answers as to if we can fluctuate from good to bad, and back to good post-procedure while still having clear-flowing veins.
So I wait, hoping that I have a future which includes a decrease of MS symptoms.

Jun 22, 2011
I had bilateral jugular blockage, was treated in Sept. 2010, had improvement for 2 or 3 days, developed very sore jugulars, and the improvements went away. I did not get follow up diagnosis until March 2011. at that time, I had bilateral jugular reflux , diagnosed per color doppler ultrasound. The testing was done at the American Access center in San Diego by a technician recently trained in the Zamboni procedure at Sclafani's center in New York, so I have good trust in the results. In consulatiation after the diagnosis, the interventionalist in San Diego, Dr. Rattner, said he didn't really think I would see any improvement if I had the procedure done again. I was originally hoping only that my progression would stop, but there is no evidence that that happened either. My insurance no longer covers this. I really, really don't want a stent at this time. I can't afford to keep paying for treatments out of pocket, and the longer I wait the better info we develop, my progression is very slow, so I have been sitting on the sidelines so far.

Jun 27, 2011
Well, I had round One and great but temporary results (few weeks, June 10, India), so round 2 with bigger balloons and great longer lasting results (6 months, Aug 2010, Mexico) and then Round 3 with no results Mar 11 PI California, US). My veins were already clear and open.
But symptoms had come back. I had no relapses from the first treatment (Round 1 on) until Jan/Feb 2011, and thought it was restenosis until Dr Arata told me it was not.

Jun 27, 2011
Treated Jan 3rd, 2010. Worse than before.

Jun 27, 2011
Treated by Dr McGuckin at VAC California, 80% stenosis RIJV 50% LIJV, Azygous 50% and 40%, Left Iliac vein 50% stenosed, Improvements= Less cog fog and better memory, HD like dreams, feel more rested in the morning, Numbness in leg and arms better, All over body weakness improved until after 6 days after procedure, Wen't to bed with pain in legs and woke up with a return of the weakness

Jun 29, 2011
i had the ccsvi procedure and well, i am not feeling any different. the doctor found 30% blockages in both my internal jugulars and azygous. they were all ballooned open. i am wanting to know if the changes are seen immediately or can it take time and if so how long?

Jun 30, 2011
Update: Had the procedure done in Poland in October last year, nearly 9 months ago. Both jugulars. In brief: No improvements, in fact it seemed to accelerate symptoms. Told to wait and see, waited and see'd - nup, not a thing except going downhill faster. Been too ill to go for follow up, so no idea whether I have re-stenosed or not but it doesn't really matter, I wouldn't go for the procedure again so soon. Would rather wait for the procedure and veins checked to advance than risk un-repairable scarring and ruining the veins beyond help. If I had had any benefits perhaps I would but I didn't so i'm not convinced that the right veins were covered.
Not worth the risk right now.

July 3, 2011
I've been treated for CCSVI 3 times... twice in Egypt and then in Newport beach. I am one of the unlucky ones that has experienced few good effects. I have been on a steep decline, from RRMS to SPMS, from being super-healthy and practicing yoga to being in a wheelchair.

Jul 03, 2011
Had my procedure about two weeks ago and have had the weirdest recovery. Bilateral jugulars were angioplastied but not the azygous. I was really sore after the procedure around the jugulars (normal). Then had pressure in the middle of my chest for about a week after the jugular soreness went away(abnormal). Then had bad neck soreness, felt like a pulled muscle or pinched nerve (abnormal ). This morning I am back to having bad left sided jugular soreness as if it was the first day of the procedure. Symptomatically, I felt great for about a week. I had increased sensation in my hands and feet, warmer hands and feet, better balance, better coordination, no more MS hug, no more restless legs and what felt to be better gait. Some symptoms seem to have gone back to pre procedure status.
Pretty disheartening.

Jul 03, 2011
I keep getting worse. It has been a year now. My legs tire so easily it scares me.
Tracking those of us worse? Heck no.

Jul 03, 2011
It has been a whole year since I had my first treatment that gave me wonderful improvements that only lasted a week. I tried again, never recapturing THOSE improvements and tried 3 more times but unfortunately Dr Siskin, who did the third try and Dr Arata who did the fourth and fifth try could not do angioplasty due to the scarring that was blocking all 3 veins.
I continue to become more and more disabled.
My left side is almost totally paralysed. I cannot move my left foot or even a toe. No longer autonomous, and I live alone.
Very scary.

Jul 05, 2011
The procedure is in it's infancy. It is still evolving. I am a perfect example of what can go wrong. I had my first procedure June 2010. And I did get great, immediate improvements. But the only lasted a week. I restenosed but NOW the stenosis was more than the original. Tried again, but I did not get the response like the first time. Tried again and this time the doctor said my veins were blocked with scarring. Nothing he could do. Tried again and another doctor said the same Blocked with scarring. I have zero blood flow in those 3 veins, plus the 1 stent I have is pinched and bent at 1 end. I am sooooooooo much worse. I regret jumping on the bandwagon so early. At that time there was no negative info available. As a matter of fact THEY said you may not improve but it will arrest the progression. Well, we now know that is not true. If you are to have it done, best to have it done once. Dr Arata says that with a 2nd, 3rd etc, you do not get improvements like the first time. Why I do not know. All I know is that when the blood is flowing you get improvements.

Jul 07, 2011
Hi fellow MSers, My veins stayed opened for 7 months. I'm going to Bulgaria for a second procedure. My procedure is August 8.

Jul 07, 2011
Devin has requested that in the spirit of full disclosure I share with you that after 14months, symptom free he has restenosed and had a recurrence of symptoms he had in 12/09. It seems to have occurred acutely after having been yelled at by someone. Stress has been the instigating feature in each one of Devin’s attacks. He had a short course of oral steroids. I know many of you have posted that taking oral steroids without the more standard infusions was not the best treatment. We conferred with Dr Burks and oral meds alone are now considered to be a viable option.

Jul 08, 2011
I agree with D... I am now without a functioning right IJV (fully scarred) It was 100% open and working before.

Jul 21, 2011
The man that had the vein graft in India is not doing well, living in a facility where he is being looked after. His transplanted vein collapsed. And I know of too many that now have one or more, scarred veins. I asked all of them if they had been treated with chemo or radiation and all said no, never. So, our theory that this was the reason for scarring, does not hold water. Luck of the draw I guess. I know only of 1 doctor that has treated 2 patients with vein grafts, Salvatore Spagnola in Monza Italy, successfuly.

Jul 23, 2011
..Dx with RRMS in '06 - fatigue, right foot drop 1st Angio in Poland Oct '10, a week of good results, walking "normal." However, sadly short-lived. Just returned from California following a 2nd Angio with Dr. Arata. I'm on day 9 post procedure and nothing, maybe even worse - cold right foot and part of lower leg, fingers on right hand cold and numb. I was told that the diameter of sections of my RIJ were the width of a strand of hair -"lots of scarring, possibly from 1st Angio or neck injuries in past.."
I'm investigating the whole vein bypass, grafting, transplanting with much frustration and all remaining hope is slipping away...
It's so true what you guys were posting about face transplants etc. I guess those docs are making more money??!!

Jul 25, 2011
I've had MS for over 17 years and I had the Liberation Procedure done in November 2010. I experienced remarkable improvements in fatigue, balance, numbness and my brain fogginess lifted. Over the past several months I have been experiencing a gradual increase in these symptoms with a marked worsening recently and I'm considering having the procedure done again.

Apr 12, 2011
First., they told us it is a safe procedure and the worse case scenario is your situation does not change. And there is the upside. This sounded really good. Smile Now, we find out that most of us get restenosed and many people's condition gets worse than it was before the operation. I am afraid that it is only the tip of the iceberg what we see here. Neurologists in the home countries of the patients talk about more serious cases. Even those who were enthusiastic about this procedure.
It is also interesting that talking to IRs not benefiting from CCSVI money have a much more balanced view on this procedure. I can also just refer to a well respected vascular surgeon whose hospital do CCSVI operations. He told us (and I can see he was reffered by others as well here on different threads) that he sees many of the neurologists concerns well founded and he sees risk in many of the currently used techniques, like using large balloon, breaking annulus, dilating veins unnecessary, etc. It would be good to draw in other doctors into the process from different fields (IRs, vascular surgeons, neurologists).
I still beleive that neurologists are key to this process, we need them. It also makes me think why those IRs who were doing these procedures did not have any concerns about the problems we are facing today.

Jul 28, 2011
I had scar tissue form in my LIJV where I was angioplastied (no stent) and, you're right, it's the same thing as a naturally-occurring stenosis as far as blood flow is concerned. I hope taking fish oil will help prevent further scar tissue from forming, which is what I'm doing post-treatment the second time around.

Aug 06, 2011
But by the second-month anniversary of my "liberation," I had still not had the dance with my stepmother that I had promised her. Heading into that third month, things began to slide. The chronic body pain came back, spreading like a stain from fingertip to toe. I gave up my stubbornness and embraced my pain meds. My feet were back to their familiar violent purple hue. I can only assume my veins had restenosed or closed in on themselves again.
So it seems I spent more than $10,000 to get pinker feet for two months.

Aug 08, 2011
Just posting after being away for so long. The thread said post if CCSVI did not work. It did not work for my boyfriend and he had it done twice.

Aug 10, 2011
--My husband is not back to normal, or symptom free. Venoplasty has not relieved my husband's neuropathic leg pain and occasional numbness, which is from damage that was done by his first flare. He still has a lesion on his cervical spinal cord, which may remain the rest of his life. This damage may be permanent, like stroke damage. What venoplasty has done for him is relieve his cerebral symptoms of fatigue, heat intolerence and spasms, and has slowed, if not stopped, progression. To call venoplasty a "cure" is to promise 100% return to normal...and we can't do that. It raises false hope, and leaves people disappointed after treatment if they cannot walk or return to life before MS. Damage to the CNS, especially spinal damage, is hard to overcome. But I still believe we need to understand the role that CCSVI plays in MS progression. Still, I will not call venoplasty a "cure."

Aug 17, 2011
10 months after a trip to Albany and getting some results (fatigue, cogfog) albeit for only 8 days, I thought I would try again. This time in Brooklyn, NY. Having followed Dr. Sclafani’s thread since day one, I was officially converted after reading about IVUS on several threads. Being able to confirm the location of stenoses while avoiding under/over treatment seemed pretty compelling to me. After a consult with Dr.S on Thursday (Aug 4th) I prepared to come in early Saturday AM but I did not hit the table until 4pm. Dr.S had a challenge on the Friday which subsequently needed more attention on Saturday morning. My procedure was not case-study material with only garden-variety valvular stenoses found in both jugulars. I got a chance to see IVUS in action. Got a bite to eat near our hotel and walked 3-blocks home (hotel). I felt as though I could’ve walked another ½-mile but thought I shouldn’t tempt fate. Next few days were interesting as I had improvement in a variety of areas beyond cogfog & fatigue.
• Spasticity completely resolved (as far as I could tell)
• Cogfog as well
• Fatigue improvement but not as dramatic as in Albany
• No improvement in balance Sad
• Bladder: little or no urgency after beer(s)
• Reduction/elimination of visual disturbance when twisting head
Heat & humidity was troublesome for this westcoast rainforest kid. Along with changing hotels, plane and car travel, the following week was a challenge. If I go back East again it will be in Spring or Fall! I’ve been back home for almost a week now and my symptom profile is pretty much where it was before embarking for Brooklyn.

Aug 21, 2011
I have no pride.
I am SO scared and indecisive!!
(I) was angio'd in Dec 2010, local Vas Surg...did pretty well--several improvements until 08 -18-11 new numbness that within days rendered me ambulatory ONLY with Walker--previously I used NO Ambulatory APPLIANCES! Hospitalized...MRI showed New 'Lesion' on this an unrelated to AngioPlasty FlareUP...? or part of MS ? Dear GOD, I was SO Hopeful!!

CCSVI Treatment: The Patient Experience, Part 3
Dr Zambo
Apr 17, 2011
I would like to know if any others had any similar experience: had the procedure July 2010, good results (better balance, no fatigue, no brain fog, greater stamina, didn't need cane, could write well and easily again) but in a few weeks symptoms came back. Had it done again Aug 2010, great results again. Lasted 6 m...onths, then symptoms came back harder than originally. Had it redone March 2011, little change, but veins open. Very confusing! I'd like to hear about similar stories. Why would it work well and then not so well?

Apr 26, 2011
I had my first procedure done August 13 2010 and was basically symptom free for seven months so went in for round two on March 28, 2010. Doctor found narrowing in my iliac and asygos veins and ballooned them open, but my right jugular that was 80% stenosed the first time was still open. Needless to say, I see no improvements now seems like they are all back, can I get any suggestions?

May 3, 2011
I started this group the day I had the procedure ast June. I wasn't one of the MS Rock stars who had miraculous results and I was very disappointed.

My results were improvement in energy level but really none in my weak right leg.... Now 10 months later it seems walking is getting more difficult. I can see a wheelchair is in my future. I was hoping progression would stop.

I go back for a check up in Albany in about 7 weeks. I'm going to ask about venography again. Dr Siskins office typically does sonograms for checkups. But I know these are not as effective as venography. I hope he is willing.

I also hope that more has been learned. The past 20 years of MS treatments for me has had little to offer. CCSVI procedure and diet changes are really the only thing coming down the pike.

May 3, 2011
it's one year this month for me and I still have not had any improvements in my walking. I still use my cane and wear a leg brace. I'm grateful the overwhelming fatigue has not returned. I still have days that my walking is worse. I'm still hopeful for the future.

May 3, 2011
After 1st angio. I was 100 pct normal. After 1/2 hour, I lost it all. Went back to the dr, he checked n found vein "stormy". Re-angio'd. Same as above happened. Seems after an angio, my veins insist on narrowing. Each time quicker. Unfortunately, I didn't get to the clinic I originally wanted to or I would have had 2 ...stents at that time. it's a battle. I hope you all get well soon.

May 16, 2011
Last June i had an MRV and i was told i didn't have any CCSVI - My veins were normal.

I then showed Dr S the images and he kindly assessed them and saw stenosis in my IJVs, Azygos and possibly May Turner.

So in August went abroad and had balloon dilation of both IJVs but not azygos as they didnt see stenosis.

Had slight mobility improvement - mainly spasticity and balance,

but one month later the improvements went away,

so in December went to a different country to get the IJVs re-ballooned and azygos/MT checked.
They ballooned the IJVs And azygos but didnt see MT.

This time there was slight improvement in balance/bladder but not spasticity.
So i was unsure whether the IJVs were correctly ballooned.
I showed Dr S the IJVs images post ballooning and he believed there was still stenosis!

So tomorrow i am having my 3rd procedure (4th MRV) but this time have images to show them exactly where to balloon

I was wondering if anyone has any advice on what i can ask the new IR to check/ make sure is clear?

- I read many CCSVI Post procedure reports from patients who have an EDSS like mine (6.0) and see great improvements in mobility.
i only have spinal/lower body problems, upper body and brain work like a healthy person.

- I would love to be treated by Dr S but dont have the money. But this will be my very last MRV, if this time isnt done correctly then I GIVE UP on CCSVI

May 17 2011
I got great improvements with my first procedure. they only lasted a week. Had second, I now had clots in the 1 stent and the other 2 veins were now closed 98% (worse than before). Got minimal improvements but the disappeared too. Tried 3 more times but the veins are 100% occluded and the doctors were unable to do anything. Veins are blocked with scarring. The last doctor said my only option is a vein bypass.

May 18, 2011

I am 43 and have RRMS. I was liberated on Nov 8,2010 and was feeling fantastic. I am going to get my second treatment next month. All my symtoms went away for 5 months, but are now returning. They have been coming back slowly. Not in a day or two, but just slowly getting worse. I am not scared to get a stent if that is what it takes. Tell someone that has been on dialysis and needed one to live. I wonder when the CRAB drug companies will be rolling out some new type of stents?

May 18, 2011
i was treated aug. 3,2010 in albany by dr. englander. had no improvements. woke up with a novicane numb leg. i had never experienced numbness. got no explanation why and it still persist. i am worsening at a faster speed. my ultrasound follow ups say i have flow. i am due to have one soon and am holding my breath. i am watching the progress and hope they soon can help us all. the clotting and scarring that is happening is scarey to me-but so are the symptoms they call ms. so???? i am ppms no brain lesions. i have 1 lesion on my cervical spine.and my thoughts are the spinal veins are more involved and at this point i don’t think they can be treated. i’m in a wheelchair and pretty bad so time is my enemy.

May 21, 2011
So in a high stress moment I went for a walk to the end of the walk. My noggin was hot hot hot...did I mention hot? Laughing
Shortly after stopping and cooling down, my feet and legs up to my mid shin are numb and tingly and I have a band of numbness at the crotch level.....a really odd sensation let me tell yeah Embarassed I don't like the feeling that my ass cheeks are glued together.... Rolling Eyes
It has been almost a year since I had the CCSVI and up until this little event have been largely symptom free (Headaches gone, fatigue at " normal levels" and Cog fog almost at bay).

So I am wondering what the conventional treatment would be for this (if there is one) and should I try to get in for another angio adventure?

May 22, 2011
My veins are occluded with scarring. Not with blood clots. If you can imagine an incision from surgery like open heart surgery you get a scar. That scar is sometimes thick and raised. Vein bypass is my only hope.

May 24, 2011
I had my first procedure Oct/10 in Mexico with ballooning of rt & lt jugulars. I had significant improvement a week later - able to walk with a walker (been in a wheelchair for four years). The improvement only lasted for three weeks however. I had a second procedure Mar/11 in Tukwilla. I had restenosed and this time had stents put in rt & lt jugulars and azygos. Unfortunately I have seen no improvement this time and I'm confused how I could be better with just ballooning the first time, and no better with stents the second time. Do you have any explanation for that? Also what, if any, would be my next plan of action? Has this happened to anyone else?

May 25, 2011
Hi everybody,
One of my best friend who lives in Europe was diagnosed with MS. Last December he traveled to Bulgaria and went through ballooning(?) whereas his neck vein (I think) was "stretched" if I use the word correctly.
However, he opted out of getting a stent. Initially, in the first couple of months he was a lot better the procedure seemed to work. His speech and balance was better. But now he gradually fell back to the state where he was before.
My question is shall he get a stent to achieve a longer lasting result? Should he wait for the new absorbable stent still under clinical trial or sick to the permanent one? Would be any better if I try to arrange a trip for him to the US and go through another operation here vs. Bulgaria?

May 25, 2011
I just worry about the exposure to radiation from X-ray fluoroscopy that is on your body throughout the procedure. It’s not like getting a quick x-ray. The dose is much greater. Then if you’ve had this procedure multiple times it adds up. I wonder if 20-30 years from now they will look at these people to determine if it raised their radiation risk.

May 25, 2011
...I have had it done 5 times and I am worse than ever as my veins are now 100% blocked with scarring due to having the procedure done. Every time the vein is treated a little damage is done to the vein's wall.

May 26, 2011 vascular surgeon watched yesterday and spoke as the tech did the US. He said I have stents in my Left jugular and they are working well. (Huh?)

He sees flow through them. Then he came back in and said he sees a bit of a narrowing higher up and to call my IR who did the procedure to have perhaps another Venogram and balloon the top under the ear which has a slight narrow part in stent. He says it looks like Intimal Hypoplasia. (sigh)

Should I leave it alone? Will it worsen? I have flow now, since I started a higher dosage of aspirin on my own after the warfarin was stopped. I don't have clots, it seems that is the good news, just the narrowing.

I thought maybe the narrow part was the normal shape of the top stent???

I had two procedures already, almost back to back, and have three stents in the left IJV. I hate to do it again and chance blocking the three working LJV stents. I scar and clot easily. I had a heck of a time keeping my INR within range of 2-3 weekly.

What would you suggest I do? I have a skinny neck, you can see the stent bulge on left outside of neck and feel them too. (Yucky)

May 26, 2011
. .. and sure enough, I did not benefit from 2 CCSVI treatments.

May 26, 2011
I fit the profile fairly well. Female, but late 50s, secondary progressive diagnosed over ten years ago, EDSS about 5. Despite angioplasty of five stenoses almost three months ago, no perceptible improvements (yet?). Still hoping for long-term potential benefit of slowed or stopped progression of MS, and glad to have better blood flow through brain.

May 27, 2011
Anybody get better results from their second procedure compared to their first time. My Wife ended up worse than before she had her first procedure right from day 1, over 8 months ago. Strongly considering a second go around. Feedback would be very appreciated.

May 27, 2011
... I got great improvements with my first but they only lasted a week. The second got very little improvements but they too are gone and I am worse than ever. Tried again, this time with Dr Siskin (first 2 times in Bulgaria) and my veins were 100% blocked. Nothing he could do. Tried again with Dr Arata and again could not help because my veins were totally blocked with scarring. I have talked to some and their second did little and I know of one that the second did wonders.
I can bet dollars to donuts that you wife, if she got worse after angioplasty, her veins stenosis is more severe than before the procedure.

May 27, 2011
After you posted last time, I heard from someone who had also gotten worse the evening of their procedure. Veins were still open. I don't get it.

(Stress of travel? Stress of the procedure? Hypoxic damage from long/overseas flight? Ballooning the jugulars cutting off blood flow to the brain, causing some damage to already damaged cells? Contrast from the procedure leaking into the brain and getting cleared out by the immune system? Inflammation in the veins as a result of being ballooned triggering a greater inflammatory response which affects the brain as well? Coincidental ill-timed relapse?)

It wasn't a situation where spasticity got better and then without the stiffness of spasticity that caused walking to worsen?

May 27, 2011
i didn't get worse after the 1st procedure but after my 2nd one i did feel a bit worse in mobility,

i later found out this was because he didn't balloon the correct area of my IJVs so there was still stenosis, even more so as they opened the azygos but not the IJVs

i have since had a 3rd procedure and the deterioration i had from the 2nd one have improved back to my state after the 1st procedure

So there is a possibility your IR ballooned incorrectly.

May 30, 2011
i have had 2 procedures. With good results the first time, relief of many symptoms. These benefits only lasted 2months and at 6 moths back where I started so had 2nd procedure. This time had NO improvements. After 7 weeks now I have been progressively getting worse. Are now unable to care for my self and have progressed beyond where I ever was before. Are afraid to do again, fearing Scar tissue could be the problem.

CCSVI Treatment: The Patient Experience, Part 2
Dr Zambo

Mar 01, 2011

I am sorry you have had no positive results from the CCSVI procedure.
I had it done on 3 January only my left jugular was ballooned.
Felt a little better a day or two afterwords but since then have gone downhill.
I was walking with a cane the day I had the procedure now I can barely walk with a walker.
I am going back to check the right jugular to see if it closed back up and also see if they can balloon the azygos next Monday.
They told me the left jugular is normal.
I am disappointed as nothing else seems to be working either. I had IV
steroids last week which did nothing and have been on LDN since October which helps me sleep but hasn't helped my other symptoms.

Mar 02, 2011
J...., I feel for you and understand what you must be going through. It has been 9 mos. now for me. I have had a 2nd venogram but no subsequent treatments since last June. Overall, I am still worse than I was pre-angio. I have more leg numbness that is more widespread, and my balance and weakness is worse. I too have a walker now for occassional use, although I am trying not to get too dependent on it.
I keep reading stories of people clotting up as I did but what is really scary to me is the thought that more than one vein could clot up. That is why I hesitate to try again. I suppose I am "fortunate" that only one of mine is blocked. I had an US last week that confirmed this.

Mar 03, 2011
Thanks for your message N....! This is the craziest journey to say the least. I am not feeling any improvements 36 hours after the procedure. I know the first time I had the procedure I did. Are you still able to work? I know you said you had no phys. improvements after the 2nd procedure but did notice the smallest difference in your walking? ...

Do you feel comfortable with having the procedure multiple times? For some reason I feel nervous about doing this repeatedly, I almost feel like I am single handedly collapsing my own system b/c of my impatience.

March 06, 2011
MS has been a constant battle as of late.
I'm guessing it's due to all of the weather changes.
I can tell that I am going through restenosis, and am quite bummed about it.
I had dropped much of my medication, but have had to re-up some of it due to major nerve pain. I've felt like my left arm was literally on fire.
We knew that restenosis was a strong possibility, but had hoped that it wouldn't happen so soon.

March 07, 2011
A close friend, a consultant neurologist specialising in the treatment of MS and in research into new treatments for MS was just relating a sad tale to me. A patient, against advice, had decided to go abroad to have this 'treatment' but following its complete failure to give any improvement in their condition had become depressed and had committed suicide. Its risky, unproven and considered by the vast majority of experts to have no effect on the disease.

February 07, 2011

ll I had the angioplasty on 16th jan. Had a temperature afterwards then nausea and didn't eat for a week. (food poisoning ?) I could walk after the angio but 3 weeks later I am struggling with 10 metres and my balance has gone. My GP has suggested a virus, possibly labrynthitis . I think maybe whatever sickness I had has ...caused a relapse. My GP said give it time. He was really good when I told him what I had done. I said I wasn't going to tell him and he replied "why on earth not, because it's unconventional ?"

February 23, 2011
I went for a followup last week Thursday. I noticed before that that a lot of us feel great for 3 weeks, then we crash. That happened to me and it too. Took me about a month to get better, but neverfelt like I did after angio. Then when I told the nurse at my doctor's office she said she noticed that many of us feel worse. I have restenosis and am having my 2nd angio next week. Do you have strents? I do. Had my original angio in May of 2010.

March 11, 2011
My doctor had me on the table to fix my stenosis but didn't fix it because I am only 40% stenosed! I need to be at 50%, this is insane! All of my improvements are gone now, but he says that could be caused by the ms. Very sad. My feet are on fire, can't stay awake, you know the routine...

March 11, 2011
I had my 9 mos check in with Siskin yesterday. No big news. I've had more numbness in my feet. Walking still sucks, but I still have energy and am generally happier...

March 11, 2011
I went to Katowice in July. I was on the mend for 13 days and then all was worse than ever. I have steadily declined with all NEW symptons. One of my worst is that I am shaking uncontrollably down my right side. I'm in Canada so doctors don't care a wick about me. Have you heard of others having this symptom or similar?

March 14, 2011
My wife T...  SMPS was liberated 24 Sept. Received 2 stents which clotted and have since cleared as she has flow, per Barrie vascular. Since she got off the table can not control her legs, can not turn over in bed at night, needs assistance with all transfers and her left hand is virtually useless, can not walk or stand. Prior to her procedure she could move her legs, turn in bed, and handle her own transfers, limited walking with walker. Her feet are not so swollen and discolored as before the procedure. Fatigue slightly better, and cog/fog never was an issue.

March 16, 2011
J.... left jugular clotted after his first procedure and Dr. Sclafani could not get through during the second procedure, so he went through the neck and still could not get through. That made for a long painful day for John and Dr. Sclafani I might add!
Very sad situation for everyone experiencing this. And this was with Arixtra for 20 days. He did mention that some people have a natural clotting disorder that requires more than Arixtra. I just hope Johns right does not clot off like his left, then what????

March 17, 2011
It's been a month since my procedure. Both Jugs ballooned. No Improvements so far. Still hoping for some improvements. Oh well. Diagnosed in 1978 so I wasn't expecting too much. We'll see what the follow up US tells us to do next. I'm not giving up on ccsvi.

March 18, 2011
It's been 11 days since my second procedure. RJV now closed up and AZ
Was opened.
I have no improvements and have gotten weaker.
It was such an effort to go and get this treatment an now such a letdown that it didn't produce anything positive.
Napping more and longer.
Have lost 10 pounds since January without trying.

March, 2011
I am much worse as all 3 veins are now 100% blocked with scarring after 5 procedures. They have been this way since the second procedure. Doctors were unable to do anything with the last 3 procedures. And I am not the only one who has had a negative outcome.

April 03, 2011
1 year and 5 months after
- I am getting worse, not fast but I am - to say it exactly I am getting weaker, especially my arms
- I feel like I was SPMS but I do not know where is the exact border between RRMS and SPMS
- My neck is stiffed and it is painful
- Even my spastic back hurts quite a lot - on the right side only

April 04, 2011
In January this year I had one of the most severe relapses in my MS "career". Before I go further let me present recent time line.

August 2010 - going off Tysabri after 21 infusions because of side effects
November 2010 - follow-up with Dr. Simka - IJVeins are patent
January 2011 - The Relapse
March 2011 - follow-up with Dr. Simka only to learn that my RIJV has restenosed.

I'm now wondering which was first. The relapse or the restenosis. And which caused the relapse? Rebound effect of going off Tysabri or the stenosed vein? Or maybe both?
Let me just add that it seems that Tysabri had really halted the disease and this relapse made it all even, as if I had never taken it. I can barely walk 10 meters now.
Does anybody know in which area I should seek answers to these questions?

April 07, 2011
Hi, got my procedure done, was good for about 3 weeks...had steady gait, balance was better, and i could stand for longer, spasticity was well improved also... Dr. and I decided to wait for more research being that i had a venogram and then a venogram with now i wait...wondering who is going to be the scientist to come up with stent's for vien's....and so i still wait....thinking that waiting is better than doing irreversible damage to the viens...

April 11, 2011
I am so sorry I had it done. I know the procedure works (it did for me) but it did not last and I am now worse than ever as all 3 veins are 100% blocked with scarring. And, I know I am not the only one. I wish there was a registry of all who had it done and reports how they are 3, 6, 9, 12 months afterwards.

Oct 19, 2010
I would like to advise everyone planning on getting liberation treatment to please think it through well. If you are in the advanced stages of MS I would do it, but if you are like me, with minimal symptoms and trying to 'get things fixed early', I would advise caution.

Since returning from another country (I don't want to name the country because they did everything right) and liberation treatment, I have not been back to work....of course I only had the procedure last Thursday with three other individuals from Canada (who all had good results), but I am unable to funtion as I was before. I have been in bed since I returned. I feel we were well taken care of and the procedure was done professionally by great doctors, but you never know what will happen afterwards....I was fine for two days until I got home and I am assuming that my jugulars have re-blocked. Now I regret my rush in getting the procedure done knowing full well there would be no help available in Canada. I do not know where to turn now. I cannot afford another trip to a foreign country for more treatment and right now I am not able to work, which I had no trouble doing before. I thought I was doing the smart thing by getting treatment early, but myself and my husband are regretting that I am not sure what the future holds for me at all and I am at a very low point in my life. I cannot keep my eyes open as I type this .

Apr il10, 2011
I am very happy if we see more and more successful cases; however, we all know that nothing is proven yet and we all see many problems and regrets after the operations. We can educate ourselves but we are not doctors; how can we make an informed decision when even IRs and neurologists can not? Do not forget that there are many IRs who are not sold for CCSVI.

I would be the happiest person on earth if CCSVI operations would work. So, I understand if someone who can afford to do so waits a few months or a year, but I also understand if someone is not in that position.

I remember, when first, dr Zamboni came up with the cure for MS and we said that neurologists' concerns are not warranted. Now, it turns out that CCSVI operation is not a single cure for MS and many of the neurologists' concerns about safty issues are legitimate. So, we have to be careful.

April 12, 2011
... It seems an awful disappointment for you. I hope there is some way forward. My friend has no further options because no doctors will go near her. She has clots in both stents, that by now are permanent. Another guy I know went to India and they would not even treat him. He is worse than ever. His feet are terribly swollen. Both of them have young kids. I think those that are well and those that are only mildly affected by CCSVI, and those that have been successfully treated, need to be reminded periodically that some are still suffering, and even dying. It is not always a pretty picture.

April 15, 2011
... I have a stent in my left jugular vein. My valves were inverted. It will be 1 year and 6 months soon.
As many know I am slowly getting worse - I am weaker, especially my arms and now I have more damages in my right eye.
I think my stent is OK. I am not so sure about the flow. It has been very slow. My MRI shows no change after more than one year but I do not care because I have more limitations. ...

April 15, 2011
... I was treated April last year in Poland - results a little disappointing - have a stent in left jug and last time I was checked out - Sept 2010 - no restenosis - initially did feel a lot better after angio, but it never really touched my fatigue problem, which continues to ruin my life. I still believe that this is the answer to our symptoms, but that unfortunately more time is still required to finese technique, esp for those who have had ms for over 5 yearsl
Anyway, suppose we just have to keep the faith, and hang on in there. Now I feel worse than ever ...

April 17, 2011
Hi ... I understand your hesitation because I am in the same situation. Mine was done in December but it got already restenosed. I've already had an appointment with dr Sinan but I got a cold feet when I read about so many thrombosis occuring with large balloons. Dr Sclafani's approach seems to me the most viable at the moment, but I must say I am still learning about the procedure everyday.

April 17, 2011
Well I updated my blog with my last CCSVI entry until something else shakes loose and if/when new ground is broken. It's my last since you all know who read my blog that I've had some progression in my left leg. Well going by everyone else's stories of progression post treatment, I could have re-stenosed. Well I didn't at all. Matter of fact my jugulars were kind of novel to the Dr. since they were flowing so incredibly well. I guess lots of folks have even had problems with clogging stents. Not me! And my azygous was flowing fine too.

April 17, 2011
man im sorry that sucks. Im glad to hear your blood is flowing but sorry for performing all you have and still progression. Goes to show there is something else messing with us. Hang in ther Loobie and keep the faith. Hopefully the science will catch up..
One day we will find that these diseaseas(rrms,Spms,PMS are completely different.

I went throuhg the procedure a year ago and was fully ambulatory. Now i am in awheelchair. Believe much as i wish it was "it" its not.

April 17, 2011
I would like to know if any others had any similar experience: had the procedure July 2010, good results (better balance, no fatigue, no brain fog, greater stamina, didn't need cane, could write well and easily again) but in a few weeks symptoms came back. Had it done again Aug 2010, great results again. Lasted 6 m...onths, then symptoms came back harder than originally. Had it redone March 2011, little change, but veins open. Very confusing! I'd like to hear about similar stories. Why would it work well and then not so well?

Apr 17, 2011
I only allude to it here because I am not certain yet (of the efficacy of the protocol), but I have been convinced of a bacterial factor in "MS" since before I was even definitively Dxd in 1993. It took me a long time to get the information together, and then to find a doctor willing to participate, but I finally got started on an anti-biotic protocol in September 2010 - 4 months after my first angio (brilliant results that faded over a couple of months) and 1 month before my 2nd, (completely ineffective) angio. By December, I was getting quite messed up . ..

April 20, 2011
had the treatment no good results

April 21, 2011
Good result's initially with balance, spasticity, bladder, gait. Lasted less then a month. At 3 month doppler, just got the result's in the mail...3 out of 5 zamboni protocol positive for CCSVI. is mild but there.

1) Thickened valves on right and left IJV's
2) Reflux with postural change: positive on left only
3) Asymmetric flow in deep cerebral veins: positive at 0 and 90 degree's

Don't really know what to do at this point...think going in again is risky with damage to vein's...but waiting on more research...

April 23, 2011
I am a CCSVI procedure veteran and it has done NOTHING to stop a slow but crippling progression of the disease. So who’s right, you or me, huh??? someone??? Errrrhhhh...

April 24, 2011
I had a balloon angioplasty procedure in December 2010. The only problem found was a slight flow impairment (50%) in the valve in the LIJV, this was ballooned. After the procedure I felt really good, better balance and coordination, with much less fatigue. However, the improvements appear to have worn off after about 3 months.

April 25, 2011
I was an early patient of Dr Siskin's, no blood thinners, no stents. Although my only improvement was/is vision, my MS symptoms became worse than before venoplasty Sad I never felt any kind of neck/vein problems though to indicate thrombosis. It was silent as far as that goes.

April 25, 2011
I did not have a stent and was prescribed Plavix for 6 months It was explained to me that I would be on Plavix longer than my daughter (we had treatment on the same day) because of problems with May-Thurner. I believed I had restenosed 2.5 months after treatment due to a gradual loss of improvements to balance and foot drop. During 2nd angio (with Dr S... this time), the LIJV is completely occluded due to clotting or scar tissue and he was unable to access.

April 25, 2011
The first two weeks I had improvements and they started slowly and seemed to hold and continue. The symptoms that were noticeably improving were ataxia, bladder issues, numbness in hands, some of my vision problems, and foot drop. There was a slow loss of these improvements after the two week point. The only way I knew or suspected was that I was losing my improvements.

I was on Plavix and aspirin and there wasn't a stent put in. Just a very loud pop when the vein was opened and a slight tear in the vein wall.
I didn't have any outward signs of the vein collapsing, there wasn't any pain, headaches, or swelling.
A follow-up U/S at 1 month showed the LIJV was occluded. At that point I still had good flow in the RIJV.

How many people have lost both IJV? I had restrictions over 50% in both veins and now I am wondering what will happen if the RIJV collapses as well.

Do any of the Dr's know what can be done for those of us with these problems?

April 26, 2011

I knew because all the improvement's went away...was good for almost a month...325mg aspirin daily. Got 3 month report back and it just confirmed what I already knew...3 out of 5 criteria for CCSVI again! I had very good improvement's and I had strong hope of even more to come...balance, spasticity, bladder, gait...IMPROVED! I noticed when I started to lose what I had gained. I am not any worse (praise God), just emotionally train-wrecked, I suppose...but that is the chance I took...Now I have to pray for something to keep these open with-out stent's...(they are typically made for artery's, they are a lot thicker then flimsy here we are........

CCSVI Treatment: The Patient Experience
Dr Zambo
How much does patient testimony matter? You decide.

(Editorial: each testimony is genuine, different formatting used for publishing purpose only)

Nov 22, 2010
I had angioplasty in Poland in June, and then again in the first week of October. Two days ago, I began to experience dull pain in my LIJV (where an 18 mm balloon was deployed). I also seem to be having an "MS" exacerbation. I was concerned about possible clotting, so I went to ER in Vancouver tonight. I had a full blood work-up, and an ultrasound of my LIJV. There was no evidence of clotting, and infection, dissection, etc. were also ruled out. No idea of the cause of the pain, but I was admonished to return immediately if there were any changes for the worse. So, at least at Mount St. Joseph's Hospital in Vancouver, you will not be turned away, and you can expect to be investigated promptly, completely, and with all due concern. I did inform them of my angioplasty for "MS"/CCSVI history.
(the exacerbation is definite, and nasty)

Nov 29, 2010

I didn't have the experience that it moved the first months, but now I seem to be regressing pretty fast, and one of the symptoms is pins and needles all over my body. This might be one reason why I feel this. Another thing that I feel is the inappropriate movements of the muscles surrounding the right jug in the neck. And the pain. I used to experience pain in one position, now in another.
Actually, I think that I am confused. A lot. And maybe mostly scared. With 1000 scenarios in my head. I think that I had a rough year concerning my CCSVI procedure and its effects. First two failure procedures, than the third one, from which I saw the effects 2 months later. Then relapse...
I think that I can't keep on switching my disposition from 'sick without cure' to 'sick with cure' back and forth all the time. It drains my strength.

Nov 30, 2010
Thanks for the advice, but I do not need it. I was and am fully aware that there are no guarantees with this procedure. I went in May knowing that it was not a cure, I hoped that my MS stablised and did not progress. I also hoped that I may experience some reduction in my daily symptoms.
When I had the procedure I was satisfied that I was doing all I could to help myself, that was a great feeling after years of frustration and feeling that I was on a slippery slope and there was nothing I could do about it.
If I look back at my journey since finding out about CCSVI I can say that I have been liberated quite a few times already...
Firstly for the first time since being diagnosed over 10 years ago I was given hope with regards to my MS. The hope spurred me on to read as much as I could and I made the informed decision to follow my gut feeling, it all made so much sense to me. (Liberation 1).
Secondly, Once I had decided that I wanted to follow this route I was on a high but was brought down to earth with a bang once I found out how much this was going to cost. I tried to find someone in the UK who was willing to perform the procedure and I was met with a dead end. I was totally deflated and the frustation was overwhelming. However, my lovely family stepped in and said that they would cover the cost if I was sure that this is what I wanted to do. (Liberation 2).
But don't forget there is big money tied up in CCSVI also. So many for-profit clinics are gathering in millions for doing a treatment and then sending people away to cope on their own. It's a huge money spinner for them and while you can fault big pharma (and I'll agree with you - especially Teva, who makes my Copaxone, who has been taken to court for price gouging, found guilty, agreed with the verdict and then kept the prices EXACTLY the same as they were), big surgery has its own blame to wear. There have been SO many tests and surgeries and procedures done of all sorts that were of no clinical benefit and caused harm that cost the healthcare systems and the poor patients
money and their lives. I'm not talking about CCSVI here, necessarily, so don't blast me, people, but I am talking about the surgery once used to redirect blood for stroke patients, about total mastectomies, about the test that show so many false positives that people go through unnecessary surgery to "treat" (mammograms being one, prostate testing another).
Big medicine has LOTS of interest in the CCSVI thing working, you bet. And they are every bit as grasping and venal as big pharma.
So I share your frustration in many directions. But I'm not willing to accept one money-sucker as inherently better than the other.
Thirdly, once I had made the decision and was given the financial resources to follow it, (something that I am well aware that other MSers do not have the privilege of, and that saddens me deeply), I made an appointment with my Neurologist to keep him informed.
Only to be told that I was making a big mistake, that he was against the idea, and basically that I should not go. After listening to his advice I informed him that it was my body and I was willing to take the risk. I thanked him for his concern and told him that I would keep him updated. That in itself was so liberating! For once I was able to make my own decision regarding my own health. (Liberation 3).
I went to Poland in May with a feeling of hope and dread. Hope that this could help me in some way and dread thinking that they may perform the tests and tell me that I did not have CCSVI, what then?? They did the test and confirmed that I did and that feeling of dread lifted, there was something they could do!! (Liberation 4).
The following day I had the procedure, I was nervous but excited at the same time. The sense of expectation was quite exhilarating, what did the future hold, this was something I had not felt for a long time with regards to the MS. I was not disappointed in the days/weeks that followed. I experienced a reduction in many of my everyday symptoms and had more energy than I knew what to do with. My balance was 90% better. My head was clearing, my tremour was less, my feet and hands were warm. This brought home to me just how much the MS was affecting me and I could feel improvements! (Liberation 5).
Slowly over the past 6 months or so I have been noticing that I am experiencing more fatigue and my head is not as clear as it was. This was something that I was aware could happen, but hoped that it would not. Although I did feel down about it for a short while, I was also aware that the same options were available to me. I made the follow up appointment and am going again on Wednesday. My family have come to the rescue again and are funding the second visit, for which I am truly thankful. Again I have hope and am excited about the future. (Liberation 6).
That said, I think that this may have to be my last trip as I cannot expect my family to keep putting their hands in their pockets. Hopefully, this trip will keep me going until the procedure is available here.
Although this is a long winded answer, I suppose I can sum up by saying that I am going for the second, fully aware that there are no guarantees and although I cannot afford a third or fourth I would have the procedure done every month if it was available, accessible
and near to home.
Unfortunately this is not the case yet. I say yet, because I truly believe and hope that there will come a day when this is available to all. I just hope that the experiences of those of us who were willing to take the risk in these early days will be of benefit to those who come after us.
As you can see, this has been a rollercoaster of a ride for me and those close to me so far. I do not know what is around the corner, I just hope that it is one of those steep inclines and not one of those stomach churning dips. We will see...

Nov 29, 2010
I have had PPMS for about 4/5 years (or since diagnosed anyway).
Anyway I had the "liberation treatment" in Poland recently and have just returned from a 2 month checkup. The 2 month reason was becuse I had 2 stents fitted in my left jugular and as it was the first time they had done it they wanted to check it was still ok. The improvements I was having after the procedure were amazing but they started to tail off so I was keen to see if there was a reason. There was....
The uppermost stent had closed, this was due to a "bulbous part" of my carotid artery pressing on the stent and deforming it to the extent it was closed. Just to add insult to injury, the vein in between had also re stenosed. They angioplastied the stent a number of times but the following day it had closed up again. The surgeon was most apologetic and said that until a new stent was designed then it was not possible to do anything further. He explained in great detail what had happened and that they had never come across it before, I believe him too. I came home with all the paperwork and dvd's and instructions to see my doc as soon as possible as I was on 3 months worth of fraxiparine plus other tablets to keep my blood thin so it wouldnt clot and could get through the gap that was left. Its sods law that I would be one of the minute percentage who had a problem with a relatively simple procedure but hey ho. I am now stuck a little,
my GP is concerned with the risk of thrombosis and has referred me to a vascular surgeon, I got an appointment within a week!
So my question if anyone has any clues is, Can a jugular be replaced and if it can, does anyone do such a thing?

Nov 2010
Thanks for your update Peaches. Sorry to hear of your clot. I can definitely relate. I was treated in June by Dr Siskin too and presently am clotted in my left ijv, confirmed by all tests. I just spoke with the doctor and he said there is nothing that can be done.

Nov 2010
I'm three months post-liberation and am in an exacerbation, so regarding CCSVI, I'm just going to ride out the next year or two "waiting for more research" just like you.
But I've also been trying chiropractic medicine (Atlas Orthogonal) which has helped greatly by stopping the numbness in my feet by 100% and by reducing my MS Hug symptoms by 75%. I still have some other neuro symptoms, but given time, these might be helped, too.

Nov 2010
1 year after my CCSVI procedure in Poland (EuroMedic, Katowice).
I feel the same as before my procedure. My main problem is and was fatigue. It depends on how much action I do during the day. I am not worse, I do not have any new symptoms. I have not had any relaps. I had more energy only the first 33 days. I still take LDN. Never on DMDs. My stent if fine, without a clot, without intimal hyperplasia. My blood-drainage is very slow but it was zero before.

Dec 05, 2010
I've spent a lot of time over ccsvi also. Propaganda is flowing on both sides and it comes down to money.

You cant have one without the other and both sides are as bad as each other.
There was a post the other day about a woman selling her house to pay for an unsucessful treatment.

There are many flaws on both sides of the so called professionals. Some of the attacks are coming from people's frustrations at being shunned for giving an honest point of view.

Places like Facebook have become a minefield for relevant information, basically skeptic or CCSVI sales teams.

Unless there is full disclosure there is going to be disagreements and neither side wants to give up the golden goose to look after patient interests. Patients as ever are stuck in the middle while these greedy dropkicks argue over territory.

I'm searching for creditable answers from either side and finding very little.
Both sides are to blame.

Dec 09, 2010
I should do a little update.
I am having a relapse. It started late afternoon Dec. 3 - it means exactly 13 months after my procedure.
It was really bad the first 4 days. I even wanted to call the emergency but I was not able to move to open my eyes, nothing. The burning sensation was really strong. I do not know if I fainted or not, or just fell asleep. I had stupid nightmare. I saw flame all over my body even on my face. I really wanted to call 911. I woke up. There was no flame of course. Moreover we have no 911 number in my country. I was dreaming in English including saying "oh sh...".
It was very intensive, I was 4 days somewhere out. I am better now but of course not as well as a week ago.
Well, this was just question of time. I felt I was balancing on the edge.
I still have very strong pain behind my left eye. I do not know what to do with that but perhaps nothing.

Dec 09, 2010
So here it is. I leave tomorrow for my treatment on December 13th. I have been told by one nurse at Albany that only 15-20% have marked improvement and by another nurse that she has not seen someone who doesn't walk get up and walk after the procedure, that is takes months. So, what am I saying? Some of my hopes feel dashed.

Dec 2010
Arlene Hubbard posted some very positive results, but she said they are not collecting this kind of information. Patients are self-reporting, but their comments are scattered over many sites and are inconsistent in both timing and terminology. [?????]

Dec 2010
We are all different.
I was 100% for Liberation in January this year and even prepared a presentation for my neurologist.
No. I've been around the MS world for 10 years now and only encountered one person who has had a lasting benefit from Liberation. I have doubts.
This is not pure skepticism, (so don't do your usual personal attack on me, please), but more of an agnostic questioning.
Also, you criticise people for not congratulating those who have been fortunate enough to have had a great result post-Liberation, but I can't remember a single sympathetic message on the sticky tracking thread for bad outcomes from you.
This works both ways you know.

Dec 11, 2010
Facebook is a gossip column.
Dr. Sclafani's post would get lost, as do all others.
Easy to use Spam Bots.
Weak security.
Most CCSVI groups are 10 a penny and run for business reasons.
Most groups have Numerous Posting accounts.
Most groups have Numerous groups so dilute their value.
Most groups talk to themselves because people get put off with constant games.
18,000 is a false number hence low posting rates.
Facebook is pretty much a self promotion site.
Every forum/social site has their problems but Facebook is riddled.

On the positive side, facebook is a marketers wet dream. It doesnt cost a penny and you can post from 1000 accounts a day, each with their own auto running group.
Your Facebook mob made me realize I need to completely distance myself from all of this.
Take care

Dec 10, 2010
johnson, i'm kinda in the same boat. i got a doppler back home. they say no clots. i got a script for another one because albany wanted follow ups every 3 mo. for a yr. i want to be smart about all this but i feel so stupid and admit at this point i feel kinda like "chicken little". i know we can all restenose but how long should we be concerned about clots or perhaps damage that can result to the veins? i had no stents. have you stopped progressing? i seem to be progressing faster.

Dec 2010
i might add, i had the procedure done and noticed immediate relief of the following three symptoms in this order. and i had the procedure done with absolutely no sedatives.
cold hands, warmed as soon as they pulled the wire out of my vein cog fog lifted 10-15 minutes after the wire was pulled, balance was nearly 60-70% better and hour after procedure,
but all symptoms came back three hours after procedure as well...

Dec 19, 2010
I was treated October 11, 2010. I have had no improvement. I was thinking that I was a slow healer and that perhaps improvement, or at least no further decline, were in my future. Unfortunately I am experiencing another relapse which makes typing difficult so I'll keep this short.

Dec 20, 2010
If Trine Tsouderos and Pat Callahan are in need of a new subject to investigate they should look into the CCSVI/Zamboni liberation therapy for multiple sclerosis, a very dubious theory and treatment that has suddenly become very popular thanks to some very poor reporting by a Canadian news channel at the end of last year. As a result of this thousands of people with MS have spent tens of thousands of dollars each to have angioplasty performed on their neck veins...a pointless and potentially dangerous practice.


CCSVI advocates have been lobbing the usual "pharma shill" accusations (and the occasional death threat) against scientists and doctors who have urged caution or argued against the theory that CCSVI plays an important role in MS, though I suspect that if anyone took a close look at the activities of a companies involved with CCSVI detection and treatment they would uncover some interesting relationships. I've also heard that the Italian freemasons are somehow involved, though just how deep the rot runs in the Italian government is not clear.
At the moment the reporting is very biased in favour of the so-called "Liberation therapy", despite the lack of scientific evidence for CCSVI being a cause of MS, and a lack of clinical evidence for "liberation therapy" having a beneficial effect. It would be good to see this imbalance corrected!

Dec 21, 2010
Last Monday was my birthday and I was hopping for it to also be my RE-birth... but no!!
nothing happen!!
This was my FIFTH and LAST procedure - some of those venograms were not to treat CCSVI but to repair complications: blocked stent, thrombosis, collapsed vein.
I said before that I could not end my CCSVI journey while feeling undertreated. My IR was always reluctant to watch Dr Sinan presentation but the week before he did and he picked up some tricks... I have no more excuses hence no more hope for this treatment, it just does not work on me! Everything that could be done was done:

Dec 13, 2010
clean up my 4 stents in LIJ and angio 12mm (even if stents are 10 mm)
Azygos: 2 waists were angio with 10 mm (a kink was repaired in a previous procedure)
RIJ: angio 14mm high pressure
In my specific case those are very big ballons because my veins are very small and stenosed by radiation of previous tongue cancer.
My LIJ was 5 mm before it collapsed down to 1mm (the size of the catheter) they
increased the size to 10mm with the stents!

I did everything by the book, I stayed in bed at the hotel most of the time for 4 days to make sure to have good blood flow thru the jug.
Do I have some regrets? NO, for the past 10 months I did not think about death everyday! Now people around me know I did everything possible, I did not give up.
One thing I don't understand: how come I never got back the "moderate" improvements I experienced for 6 weeks in April after my 1st procedure in Poland? They were not placebo, I would NOT unconsciously regulate my bowels, bladder, saliva, body odor, skin complexion! I did not know then that they were related to ms. I also had no more headache, warm hands and feet. The only improvement that stock is no more hip compensation when tire or after sitting or exercise.

Dec 22, 2010
Thank you everybody for your support and your good words!
At this point I am more frustrated than depressed (yet). I know that I am not the only one without results and least I am lucky to have been treated before it was too late and my veins shut tight irreversibly.
I figured my story was worth telling for those who start that journey thinking it is a one shot deal. Know that multiple procedures may be required and be prepared to spend a lot of money!
I choose to have the 1st procedure and the last, the 3 others: candy wrap stent stenosis let me in a worse state than pre-procedure with new symptoms, the collapsed vein made me feel horrible - I did not leave my bed for 3 weeks, the thrombosis was a no brainer.
People have to know it may cost them way MORE money than their budget for one procedure or they may end up WORSE than they are!
As for Lyme disease, I was tested in Poland. Dr Kostecki rejected around 5% of patients because of positive test.
I read there are different tests for it, it may be worth checking again.
Question: my MRI show 10 big lesions + zillions of small ones (like sky constellation at night) + lesions at the base of the neck + lesions lower spin. Is that possible with Lyme?

Dec 24, 2010

V..., I think I know how you feel. I had the procedure done twice (in Bulgaria), I got great improvements with the first but they disapeared after a week. With the third attempt. Dr Siskin said everything was now blocked 100% and there was nothing he could do. I am trying one more time with Dr Arata, January 19. He thinks he can help.
Hope he is right. Our stories seem very similiar. The frustration and knowing what I know now I would not have started this journey as it has made me more disabled than ever.

Dec 29, 2010

Okay guys, I need your guidence/advice I am not sure where to turn, if there is anywhere to turn...
I was treated Nov 30, and I didn't experience any improvments. In the days after I convinced myself it was ok, at the very least opening up my veins will slow the progression!?? Sadly I am 2 weeks into a full blown exac...erbation, prednisone RX finished and still the attack marches on...

Dec 29, 2010
I have RRMS, treatment in Florida on Nov 2nd. Came back to Ontario on Nov 4th and pain was gone, color returned and my balance improved greatly. I was still quite numb on my right side and the following week (Nov 8th-12th) I w...ent over on my ankle about 5 times. I have been in the biggest attack I have ever experienced. MS hug from my ribcage down to my toes. This past week I have finally been able to walk without the aide of a cane or walker but not for very long, the pain in my legs have finally diminished some.
I have read that sometimes an injury can cause a flare-up, but I never expected this to happen. I've been to physio twice and been faithfully doing the exercises he has given me and I think they are what's helping me.

Dec 29, 2010

My husband has received repeat angios (2) and checkups five times at Stanford. This is over a course of almost 2 years. You need an ongoing relationship with your IR, GP and neurologist. This is the same as seeing a cardiologist for a heart condition. Joan B

Jan 02, 2011

Hi, I am only patient number 2 done in Poland. I will be 14 months after the procedure tomorrow. I felt better only the first 33 days. I had a relaps one month ago.
So, I am worse. I do not know exactly what is wrong. I had follow up twice. It showed very slow flow in my stented jugular but my stent was fine, without hyperplasia, without thrombosis.
I am still able to walk with one cane but my brain fog is strong, my fatigue is a big problem, I am almost constantly sleepy, my muscles are weak...
But I was only the second...

Jan 02, 2011
Went to Sofia to have treatment all three veins were narrow and after treatment a day or two later I felt Better,for one whole month. And then it went back to how it was not really worth £5500 + £600 (meds) for a month of feeling better what to do i really like Sofia and i get it my vain must have closed but if i go back and have it done again thats plus £6000 and what if they close again
i don't print cash!! (though i wish i did)

what do to do anyone someone?
help please

Jan 04, 2011
I had my Liberation procedure on the 27th Dec 2010, in Edinburgh right after it both my hands were tingling , and have stayed that way ever since, and have became quite sore, the tops of both legs are also tingling on and off, I was practically symptom free pre procedure. I am very despondent and need some reassurance that it may get better after time.

Jan 04, 2011
After my last procedure I found a few things got worse before they got better. I think the body is sort of shocked by any invasive procedure, even my colonoscopy caused MS to bug me.

Jan 04, 2011
I underwent the CCSVI procedure 6 months ago. I felt bad before the procedure and 2 weeks after started to feel a lot better. Now the symptoms are back. No some of the ‘scientists’ and well-intentioned self proclaimed doctors on this forum will rush to respond: “oh Asher, so sorry to hear you are feeling worse. Did you have your veins checked? Ultrasound? It must be re-stenosis. Else how come you felt better and now the symptoms are suddenly back?” Well, sorry guys, the Doppler showed no trace of a flow problem.
Well, I admit I too was hoping for a quick fix for my MS. It is a simple and intuitive explanation for a complex and illusive Autoimmune disease. The treatment is relatively simple, painless and cheap. It sounds so great, so please, do not confuse me with the facts.
‘Misguided speculation’ because the CCSVI and an MS connection is not the kind of science that is responsible for the huge advances that humanity made: fact based experimental science.
One of the fundamental attribution errors human beings make, and that is why we need solid science, is the attribution of causality. If I dance and it starts raining, it must be my dancing that caused the rain, right? These are the myths that guide many of our rituals, and much of our behavior. That’s fine, except this is not fact and not science.
Consider the post procedure improvement was a remission, and that the return of the symptoms was a relaps? And consider the possibility that this may have been the explanation for Zamboni’s observed phenomena?
I honestly mean no offense, and I don’t want to hurt anyone’s feelings, but if this is what it takes to speak out what I believe to be the truth, so be it.
As it stands, CCSVI as a causal factor in MS is at best a not very solid theory that yet needs to be proven in a REPLICABLE and controlled scientific experiment. I believe we owe all the pharmacologists, scientist, biologists, neuros etc. who are working hard and are dedicating their lives to help us MS sufferers a sincere apology. They cannot be blamed for not embracing our rain dance.

Jan 05, 2011
My procedure looked like yours. Before: symptom free. After: immediate numbness in right hand which continued for 4 months. Additionally during those 4 months some numbness in legs and torso. MRI showed many active leasions so I had to take steroids. Fornunately after steroids treatment I am symptom free again.

Jan 2011
I go for my 3rd procedure on the 5th. Blood clot in left ijv.
David McGarry Okay, can NOT get the wire through...NO WAY. Dr. tried for about 4hrs. on Wednesday. Anyone know if surgery is an option? If so, Who/Where is the best in the USA? Clot is about 2-3 in. below le...ft ear lobe. Gawd am... I sore.

Jan 09, 2011
The procedure had its placebo effect on me for 5 mos, the last two I have been on and off with relapses. As soon as you realize this, you won't torture yourself with searching for answers.
They are not available yet.

Jan 10, 2011 
I had a few days of improvements about a week after the treatment and then back to whrwe I was if not a little worse. I had my procedure one month ago.

Jan 15, 2011

You may have read that I traveled to Egypt and received treatment with Dr Tariq's (Dr Sinan's) team late December. You might also be aware that I suffered a thrombosis, (a mild thrombosis I was told by the Kuwaiti/Egyptian team) in my left jugular vein. I received an appointment letter the day before yesterday at half past eleven for an appointment that was itself the day before yesterday at eleven, to have this checked out by an NHS vascular specialist. It's to be rescheduled for next week.When I have more news I'll tell it - hopefully, at some stage, my left jugular will be clear of the thrombosis and I'll experience greater benefits than the modest ones which I have already experienced.
Anyway, what I am writing about here is that, worryingly, I received a message from a man who was treated in Alexandria late last year and also suffered a thrombosis. He said that he thought at least one, perhaps two of his month's group did so too . On further investigation I have found out that another man suffered a blood clot that required prompt first-of-its-kind surgery.

Jan 14, 2011
Unfortunately, I am one of those few challenging patients that had awesome improvements after my first balloon in Sept. and no improvements after the second in Dec. I am working with Dr. Saxon at Del Mar Vein Clinic through the Hubbard Foundation. Now I have to decide if a third time will do the trick or if a stent is the only option.

Jan 17, 2011
I had my first procedure done last Monday, left jugular and azycos chest vein. I went for second procedure today to have right jugular done. It was discovered that my left jugular had clotted and was showing colatterals for the blood flow. I asked my Doctor last week if he used blood thinners, and his reply was no, just asperin. Unfortunately now I need to go on blood thinners, Lovenox, 2 shots a day for the next 3 months to make sure my right jugular doesn't clot as well as making sure my left jugular doesn't clot even more.
The reason he suggested Lovenox is that it doesn't require any blood testing while using it.

Jan 17, 2011
I did it Dec 24 2010. Dr. Arata told me it will take a few months but no guarantees. So far I feel my mental fatigue is less BUT my physical fatigue has increased significantly. EVERYTHING ELSE - pretty much the same, though I am told I look better (less glazed). This could be fatigue from the surgery.

Jan 2011
Hello everyone! I got my CCSVI procedure on Oct. 27, 2010 and everything was fantastic! On January 12, 2011 I believe I have re-stenosed in my left jugular. :( All my symptoms have come back at once.I am putting together a Valentine's day basket to raffle off to help raise money for the $8800 procedure in Seattle..., WA. (at least I don't have to travel out of state again!) I have no insurance and need help. I have also set up a PayPal account just for this-if anyone is interested in helping me out. :) Thanks to everyone so far that has helped and donated things for the basket!

Jan 26, 2011
Well, John was doing great for about 6 weeks after angio and now seems to be regressing! He is walking worse than before the procedure and the headaches have returned.
John is going back for another procedure with Dr. Sclafani. Hopefully he can get this darn jugular opened and make it stay open! The first procedure was pretty aggressive with a large balloon too.
I do want to mention that John's fatigue is still GONE though! So, that is a good thing.
Any thoughts on why elastic recoil happens?

Jan 19, 2011
D... is now more than 2 months post-CCSVI-procedure.  The benefits from the procedure have either plateaued or perhaps regressed a bit.  The severe spasticity has returned, together with the pain resulting from it.  Her energy levels continue to be at a higher level, which we attribute to the procedure, but there are cognitive setbacks as well.
From the numerous friends that we have who have had the procedure, we have learned that they have all restenosed and I’m concluding that Deanna has restenosed as well.  Those same friends are having another IR / angioplasty procedure.  So we are considering it.

Feb 03, 2011
Hello, I had 30% stenosis in LIJV and 50% in RIJV...had procedure on the 20th of Dec. did quite well with result's...balance, steady gait, bladder much improved, MUCH LESS the last week steady decline...question being: Is there better result's getting the procedure done again the second time? Or is it likely for the stenosis to happen again so quickly?

Feb 10. 2011
CCSVI in Multiple Sclerosis Frent--Dr. Zamboni's patients had a 47% restenosis rate in the jugular veins. The other half of his patients' veins remained open at 18 months. My husband's right jugular has remained opened at 2 years...but his left did not. It's important to work with local doctors who can follow you and give you ongoing treatment....just as you would see a cardiovascular doc. Joan

Feb 16 2011
So my Neurologist called yesterday and tells me she has news about my MRI/MRV that was done at USC, She tells me I still have a lot of stenosis in both Jugulars, At least she admits I have stenosis, That's good she's coming around to CCSVI, Bad news is she says I have a new Lesion in the Pons in my Brain

Feb 14, 2011
Had the procedure on 16th jan in egypt. No change/improvements. I have had the ms symptoms 4 1/2 years. Bladder urgency and frequency and only able to walk 5 or 10 min.
This last year I have noticed my balance is not so good either. Do I regret having the procedure ? don't know...I would be always wondering if I hadn't but now I am in debt.

Feb 19
I had the procedure done and a few days later had a fairly bad relapse. In fact, most of the improvements I realized from my stem cell procedure had returned. Now, about 6 months after the procedure, I seem to be progressing, even though I was RRMS before the procedure.
My objective isn't to deter you from treatment, that decision is yours. I just hope to inform all those reading that not everyone experiences great results. In fact, some do get worse after the procedure. Those who have gotten worse have mostly stopped posting, or their threads have moved so far down that virtually no one reads them.

to be continued ...

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