Post if CCSVI treatment did NOT work for you

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

Postby Cece » Sun Jul 24, 2011 1:41 pm

Dr. Cumming said to me, at an ultrasound appt, that it has turned out that the jugulars are more fragile and easily damaged than expected. :(
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Postby Asher » Mon Jul 25, 2011 6:07 am

I visit the CCSVI forum every now and then, out of sheer curiosity. I have read thru both the Procedure Progress Reports and the Did not Work for You Stickies. I realize I should respect anyone's opinion and beliefs. And yet, my jaw can not help dropping at the persistence of the blind belief in CCSVI and the ease at which causality is being assigned (the 'Liberation Procedure' has CAUSED improvement or has CAUSED deterioration) with, to date, no replicable scientific evidence what so ever. The only thing we have is anecdotal evidence from a mixed (all MS forms) and non representative sample of 'it does or does not work'. The only thing we know for sure at this stage is that the procedure costs a lot of money and can potentially cause harm (scarring, clotting, etc.). I respect belief, but it is the business of churches and synagogs, not sound, fact based science or medicine.

No offense, I realize challenging a belief evokes discomfort and even anger. If this is the case, I sincerely apologize.
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Postby dania » Mon Jul 25, 2011 12:27 pm

Asher wrote:I visit the CCSVI forum every now and then, out of sheer curiosity. I have read thru both the Procedure Progress Reports and the Did not Work for You Stickies. I realize I should respect anyone's opinion and beliefs. And yet, my jaw can not help dropping at the persistence of the blind belief in CCSVI and the ease at which causality is being assigned (the 'Liberation Procedure' has CAUSED improvement or has CAUSED deterioration) with, to date, no replicable scientific evidence what so ever. The only thing we have is anecdotal evidence from a mixed (all MS forms) and non representative sample of 'it does or does not work'. The only thing we know for sure at this stage is that the procedure costs a lot of money and can potentially cause harm (scarring, clotting, etc.). I respect belief, but it is the business of churches and synagogs, not sound, fact based science or medicine.

No offense, I realize challenging a belief evokes discomfort and even anger. If this is the case, I sincerely apologize.

Not knowing if you have MS and how much you reallly know, I would just like to point out a few things.
First, it is no longer called the "Liberation Procedure" it is called angioplasty for CCSVI.
Second, a lot of symptoms that MS patients suffer from cannot be measured, brain fog, sensations like pins are needles, the ability to dream again after treatment. I could go on and on.
Third, you are right in saying it can cause harm (scarring/clotting) I had both. And my 3 veins are scarred so badly I have no blood flow. And I can say I am far more disabled than ever.
Fourth, there is, as you put it, no "sound, fact based science or medicine" of the autoimmune theory. Yet patients are prescribed medications that make them worse or kill them.
But, may I tell you I had many improvements after having it done. One that was visibly noticable was the swelling in my left foot was gone in 5 hours. My foot was normal. Before, it was so swollen I could not put a shoe on.
A friend of mine who was treated and had optic neuritis said her vision improved. Her opthalmologist confirmed this. An increase of 20-30%. He was amazed, could not beleive. This eye examination was done 3 months after her treatment.
As long as blood is flowing you have improvements. Keeping the veins open is the problem.
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Postby soapdiva884 » Mon Aug 08, 2011 3:44 pm

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. Oh well, did'nt hurt to try!
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Re: Post if CCSVI treatment did NOT work for you

Postby Cece » Fri Oct 07, 2011 12:27 pm

Someone has copied only the negative outcomes from here at TiMS and compiled them.
http://insider-ccsvi.livejournal.com/ta ... 0testimony
(page down to where it says "The Patient Experience: Part 4")
I recognise voices and stories.

A bad outcome is when the veins are damaged. A disappointing outcome is when the veins are successfully treated but no improvements happen. A good outcome is when there are improvements, and particularly lasting improvements. There are a lot of ideas out there for how to minimize bad outcomes; I like what can be done with IVUS, and anticoagulants, and avoiding aggressive ballooning, but there is some luck/bad luck involved too. Disappointing outcomes could be due to permanent pre-existing MS damage or if the stenoses were not severe enough to cause hypoxia, therefore no benefit from the lifting of hypoxia. With the lack of follow-up care and the extreme differences in technique, it is hard to know, when there is a disappointing outcome, if the veins were indeed successfully treated. Just some thoughts. I hope as the doctors improve that we see a great reduction in these sorts of outcomes, and we see solutions (such as perhaps RF treatment of clots) be successful for those who have suffered.
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Re: Post if CCSVI treatment did NOT work for you

Postby dania » Fri Oct 07, 2011 12:41 pm

Thanks for posting that link Cece.
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Re: Post if CCSVI treatment did NOT work for you

Postby duckfan » Sat Oct 08, 2011 9:08 pm

My husband had angioplasty at the Vascular Access Center in Seattle on Sept. 12th. Dr. Moya did the procedure. He hasn't experienced any improvement at all. At first it seemed like he could move his left foot better, he has foot drop but now it's back to business as usual.

The trip was very hard for him and he's still on Plavix. I'm hoping that when he can quit taking the Plavix he may feel better.

It was worth the try to him but I'm praying that the procedure doesn't make him worse. One of these days the Dr's will find a treatment that truly works.
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Re: Post if CCSVI treatment did NOT work for you

Postby jimmylegs » Fri Oct 14, 2011 10:26 am

duckfan, forgive me but has hubby ruled out all the known nutritional factors in ms? if not there may be some areas where additional light could be shed. if you have questions i'm here.
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Re: Post if CCSVI treatment did NOT work for you

Postby CureOrBust » Fri Oct 14, 2011 5:19 pm

I do not think I have posted here already, but it has now been almost 2 months since my last procedure, which was performed by Dr Sclafani using IVUS and Standard venography.

I have not worsened nor improved. My MS is still on the same path as far as I can tell. Sometimes I'm worse, sometimes I'm a little better. And no, I do not feel there are any more or less "good times" now.

This last procedure was my third. All three procedures were performed by different surgeons in different locations with the last using IVUS, so I feel that I have had as good treatment (as in coverage) I could possibly hope for. The only thing that remains in my mind now is for a follow up Ultra-Sound after this last procedure.
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Re: Post if CCSVI treatment did NOT work for you

Postby NormB » Sat Oct 22, 2011 8:29 am

My first post on this thread. I had my first intervention last Oct 2010. The results were great, strong gain in my legs energy and much better balance. This lasted four months.
Had a second intervention with IVUS this time last May 2011. This time no change, I was back to pre 2010 intervention. I am spms since 2005. I had an US this last July and it showed reflux in both jugulars. I have no more financial recourse to have another try.
Back to sp mode with my ms.

Take Care All

NormB
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Re: Post if CCSVI treatment did NOT work for you

Postby dania » Sat Oct 22, 2011 8:43 am

NormB, this seems to be an all to common occurrence. Getting improvements then restenosing. And even with another procedure we do not recapture those improvements. For the lucky ones that have not restnosed so far, only time will tell if their veins will remain open. We were all so hopeful that angioplasty was the final answer. So, all we really know is that as long as the blood is flowing we see improvements. The question is HOW do we keep the blood flowing?
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Re: Post if CCSVI treatment did NOT work for you

Postby Cece » Sat Oct 22, 2011 2:12 pm

dania wrote:So, all we really know is that as long as the blood is flowing we see improvements. The question is HOW do we keep the blood flowing?

I tend to believe this too, but I know someone who worsened within a day of the procedure, with a severe migraine that is still there months later, and going from a very low lesion load on the MRI to many active lesions, and she has been tested with an ultrasound and the flow is there. Maybe the most accurate test would be a repeat venogram.

NormB, I am sorry to see you posting in here.
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Re: Post if CCSVI treatment did NOT work for you

Postby CureOrBust » Sat Oct 22, 2011 5:00 pm

dania wrote:Getting improvements then restenosing. And even with another procedure we do not recapture those improvements. For the lucky ones that have not restnosed so far, only time will tell if their veins will remain open. We were all so hopeful that angioplasty was the final answer.
What concerns me more are those that are found to have CCSVI, are treated, do not re-stenose, yet do not see any improvements. Or I guess worse, is the case CeCe mentioned.

I personally think that when we can explain these cases, we will have a significantly better understanding of CCSVI and MS.

dania wrote:So, all we really know is that as long as the blood is flowing we see improvements.
Dania, I think the premise of this particular thread is tracking of those where blood was corrected to flow, but did NOT see improvements. So I think we can not say this statement so forthrightly. And yes I understand, some would have restonsed.
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Re: Post if CCSVI treatment did NOT work for you

Postby dania » Sat Oct 22, 2011 5:37 pm

CureOrBust, I have pondered with the question of why some do not see improvements and tests show blood is flowing. I think possibly that there is a stenosis somewhere else that has not been addressed. Perhaps it is has not been located?
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Re: Post if CCSVI treatment did NOT work for you

Postby Cece » Sat Oct 22, 2011 8:19 pm

CureOrBust wrote:What concerns me more are those that are found to have CCSVI, are treated, do not re-stenose, yet do not see any improvements. Or I guess worse, is the case CeCe mentioned.

I personally think that when we can explain these cases, we will have a significantly better understanding of CCSVI and MS.

One theory of mine is that the improvements that can be felt immediately are those that are associated with relief of hypoxia. Hypoxia may play a greater role in some people's CCSVI/MS and a lesser role in others. There is also normalization of CSF flow that might happen right away. If someone had one working jugular, perhaps their CSF flow could drain into it, and they wouldn't be affected by that (or see improvement in it)?

If the flow has been restored but there are no improvements, then it's back to the neurologists for answers.
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