Post if CCSVI treatment did NOT work for you

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

Postby dania » Sun Jul 03, 2011 10:35 pm

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.
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Postby munchkin » Mon Jul 04, 2011 6:40 am

Hi Dania

I was just thinking about you and wondering how things were going, you hadn't posted for awhile.

It must be very scary for you and I hope the Dr's figure something out for those of us who have had our veins severely damaged during the learning phase.

Was Dr. Cumming able to determine if you had SVC syndrome? I don't understand how we can't have these veins bypassed or graphed when the dr.s are doing things like face transplants and arm transplants.

Was your MS aggressive prior to your treatments?
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Postby dania » Wed Jul 20, 2011 7:47 pm

Hi. Dr Cumming reviewed my case and was unable to determine if I have SVC syndrome but suspects I do have it because of my jugulars being blocked. Yeah, you think if they can do a face transplant why not a vein bypass? I still cannot find a doctor that will take a chance and do the surgery.
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Postby Cece » Wed Jul 20, 2011 10:24 pm

There has to be something that can be done. If you get diagnosed as SVC syndrome, is there anything that follows that as a treatment? I thought someone got a vein graft done in India last year, does anyone know anything about that doctor? If US doctors don't want to touch this because it is risky, but you are willing to take the risks?

I know we've had our differences in the past, but I am really sorry this has happened. I've heard from three people who had both left and right jugulars scarred down and lost. It's horrible.
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Postby dania » Wed Jul 20, 2011 11:15 pm

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.
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Postby ozwannabe » Thu Jul 21, 2011 12:30 am

Hi,
One of our Docs here in Oz is trying to mount a research study aimed at finding the cause and subsequently preventing vein collapse post angio. Will keep my ear to the ground. I believe his theory is that there is an inflammatory and/or infective process leading to CCSVI and ongoing problems.

Cheers,
Vicki
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Postby Cece » Thu Jul 21, 2011 4:38 pm

Have they seen a similar inflammatory or infective process cause malformation in other valves in the body?
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Postby ozwannabe » Sat Jul 23, 2011 12:46 am

Hi Cece,

They have seen thickened neck vein walls on ultrasound. It is hypothesised that this is due to inflammation. I know they had a small sample of patients treated - around 60 - before the hospital shut them down. I'm guessing that they saw a pattern in those that restenosed. They were routinely doing follow up ultrasounds at two months post procedure.

I'm due for a follow up too. After reading your experience (thankyou) I am noticing some subtle changes in my improvements and will have an ultrasound sooner rather than later. Will ask the good Doc for more information when I see him :)

Cheers,
Vicki
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Postby Anize » Sat Jul 23, 2011 9:55 pm

Hi, I'm a "newbie," at posting but not reading...
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??!!
Any similarities out there?
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Its good to talk

Postby fee001 » Sat Jul 23, 2011 11:58 pm

Hi!

I have no doubt whatsoever that some diagnosed with ms have restricted blood flow in their neck. I also believe ccsvi is neither a symptom or a cause of ms.

This is because of my own experience only. For years I knew that I had somewthing wrong with my neck (cervical spine) After much research, I decided to go to a Chiropractor to get my Atlas checked, and yes it was out, more or less immediately my blood flow significantly increased to my hand, tthis was a total surprise and very unexpected. How I knew this had happened is I inherited my Dads veiny hands, and hadnt noticed their absence until they returned. Also I had two little lines on my upper left arm, which were like someone had caught me with a blue pen. it went after a day or so.

I have been reluctant to comment at all on ccsvi because it is such a sensitive issue to some, which is totally understandable in the circumstance.

I have been seeing John my Chiropractor for a year or so, to correct misalignmets and a twisting of my spine which has happened over a 10 year period.

So I have no doubt that a stent will increase blood flow and correct circulatory problems but it will NOT correct misalignments which in my case prevents me from walking at this present time.

Thank you for reading, I feel so much better for getting that off my chest.

goodbye!!
I do my own research, and find my own answers Its good to talk
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Postby Cece » Sun Jul 24, 2011 7:03 am

Anize wrote:Hi, I'm a "newbie," at posting but not reading...
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??!!
Any similarities out there?

I am very sorry to read this. Scarring like that can definitely result from a first angio procedure, especially if the balloons happened to be too large or the vein was more sensitive, we don't really know the reasons but we hear these reports. :(

Vein bypass of the jugulars might not available or perfected at this time but I think it will be coming. We had a Dr. D'Souza from Arizona post the other day, he is a vascular surgeon, has anyone heard from him about the possibility of vein grafting? Our other CCSVI vascular surgeon is Dr. Mehta in Albany NY, although he has been concentrating on percutaneous procedures (the usual, through-the-groin procedure), he would have the skills to attempt a jugular bypass. He talked about it as a possibility in the CCSVI Alliance talk that was videotaped and up on their site (ccsvi.org).
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Postby elyse_peace » Sun Jul 24, 2011 7:44 am

hi everyone -
thank you all for continuing to post, in the face of disappointing outcomes. (pklittle, cece, glad to see your pix, fee i'll miss your posts until you return). i have not done the angio yet, and your feedback gives me the necessary pause to continue my caution.
i wish you healing and peace in your hearts.
elyse
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Postby dania » Sun Jul 24, 2011 8:15 am

Wise choice elyse. If you can wait, do so, until there is more info. You want to get it done once with lasting good results. You definetly do not want to end up like me and others that have only become worse due to increased stenosis from scarring.
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nearly gone

Postby fee001 » Sun Jul 24, 2011 8:35 am

Eiyse

Just one last thing I have scoliosis, flatback syndrome, misalignments and sciatica, but in time these are reducing in there severity.

A stent would not help any of those at all.

I'm truely off now

Fiona
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Postby Anize » Sun Jul 24, 2011 12:09 pm

Thanks Cece, I appreciate your feedback. I've spent sometime reading the research you've posted...
I guess it is just a matter a time, just like we waited for all the CCSVI research etc, now some of us are presented with these unexpected vascular issues.
I was lead to believe that veins were so elastic that they would accommodate a variety of balloon sizes. Why all this scarring and collapse?
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