Post if CCSVI treatment did NOT work for you

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

Postby pklittle » Sun Jun 20, 2010 8:06 pm

Cece wrote:I wonder if we shouldn't have a sticky of a tracking thread with negative results. Because I can see where they get lost in the general flow of positive results and high hopes and it does seem like important information...particularly those who've had new symtoms. Numb fingers or hands, even starting on the operating table, is the new symptom that seems to crop up for a few people.

We have a lot of stickies already, so maybe it's not practical.


Good idea Cece. What's the process to sticky a thread??
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Postby Rose2 » Sun Jun 20, 2010 10:15 pm

Mila,
After several months I noticed the numbness going and then gone from the bottoms of my feet. Both feet at the same time. also the numb spot on top of my right thigh at the same time disappeared.
Rose
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Postby mila77 » Mon Jun 21, 2010 12:40 am

Rose2,
I hope it will go away sooner or later but I am slowly loosing hope as it lasts 2 months now and I have never had it for so long.

lilsis,

If it was a question for me than the answer is: my all hand is affected by numbness, and all 5 fingers, i cant differentiate which part of fingers is more affected. However, my arm is not numb, just the hand
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Postby TMrox » Mon Jun 21, 2010 3:35 am

Hi pklittle,

As far as I know, I'm the first person who has had the liberation treatment and who does not have MS.

I've got Transverse Myelitis (TM), a demyelination of the spinal cord only (not the brain).

TM left me with severe tonic spasms (among many other symptoms). All sort of movement will trigger spasms (moving a finger, hand, leg so on). I tried quite a few meds and doses but none with success.

I heard of the success of the CCSVI treatment and wanted to be tested.

I had two bad stenoses. 100% in azygous and more than 90% in left internal jugular vein. I had a balloon angioplasty three months ago.

My spasms did not change right after the angioplasty. Nothing. However, I had other bizarre changes like my daily migraines stopped and my breathing improved quite a lot. But the spasms, the thing I wanted to get rid of did not change for about a month.

In that period, I emailed a few docs experts in CCSVI about my case. I was told that although the majority of people experience changes, a few don't and there is no clear correlation as why this is the case.

I was told that some patients have changes right away, others about three months after, but the majority report changes by the sixth month.

People with CCSVI are born with the conditon, so the vascular system adjusts at a different speeds if CCSVI is corrected.

My spams started to slightly change a month after the angioplasty and they have almost gone away three months after.

If I had written my progress here a week after the angioplasty I would have said that CCSVI did not work for me.

As you know there is the possibility of having restenosis in the internal jugular veins. One needs to be monitored on a regular basis. Stenosis does not happen right away (a day after the angioplasty).

I had a doppler ultrasound a month after the angioplasty (that was normal) and I will have a selected venography in three months time.

It is very important to know whether and why certain people do not improve after the angioplasty. But this info needs to be taken within a time context.

You can see how my symtoms have changed since the angioplasty at:
http://www.myelitis.org/forum/viewtopic.php?f=78&t=4921
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Postby pklittle » Mon Jun 21, 2010 5:06 am

Thanks tmrox. Very interesting. I will follow your link and read more.

I only mentioned that I was checked the next day following angioplasty, because my doctor had explained that some unsuccessful angioplasties are apparent right away, and that stents are considered at that time.
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Postby L » Mon Jun 21, 2010 1:25 pm

TMrox wrote:Hi pklittle,

As far as I know, I'm the first person who has had the liberation treatment and who does not have MS.

I've got Transverse Myelitis (TM), a demyelination of the spinal cord only (not the brain).

TM left me with severe tonic spasms (among many other symptoms). All sort of movement will trigger spasms (moving a finger, hand, leg so on). I tried quite a few meds and doses but none with success.

I heard of the success of the CCSVI treatment and wanted to be tested.

I had two bad stenoses. 100% in azygous and more than 90% in left internal jugular vein. I had a balloon angioplasty three months ago.

My spasms did not change right after the angioplasty. Nothing. However, I had other bizarre changes like my daily migraines stopped and my breathing improved quite a lot. But the spasms, the thing I wanted to get rid of did not change for about a month.

In that period, I emailed a few docs experts in CCSVI about my case. I was told that although the majority of people experience changes, a few don't and there is no clear correlation as why this is the case.

I was told that some patients have changes right away, others about three months after, but the majority report changes by the sixth month.

People with CCSVI are born with the conditon, so the vascular system adjusts at a different speeds if CCSVI is corrected.

My spams started to slightly change a month after the angioplasty and they have almost gone away three months after.

If I had written my progress here a week after the angioplasty I would have said that CCSVI did not work for me.

As you know there is the possibility of having restenosis in the internal jugular veins. One needs to be monitored on a regular basis. Stenosis does not happen right away (a day after the angioplasty).

I had a doppler ultrasound a month after the angioplasty (that was normal) and I will have a selected venography in three months time.

It is very important to know whether and why certain people do not improve after the angioplasty. But this info needs to be taken within a time context.

You can see how my symtoms have changed since the angioplasty at:
http://www.myelitis.org/forum/viewtopic.php?f=78&t=4921


Excellent! I am so happy for you. And intriguing that it helps a TM patient. I wonder what other disorders have been treated to date?
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Postby IHateMS » Mon Jun 21, 2010 3:37 pm

@Tmrox
2 lesions only on spinal cord here.....= yet I have MS....no changes in 12 years no brain lesions
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Postby TMrox » Tue Jun 22, 2010 12:19 am

Hi IHateMS,

Thanks for your comment. Not that I want to divert the importance of this thread. But thought that this will be an important clarification.

There are clear markers to differentiate TM from MS. In TM there are no lesions in the brain. The demyelination occurs in the spinal cord only, but this is monophasic, only one lesion (mine c3-c5). In addition to that I do not have o-bands, common in MS.

It is unclear in the medical literature the probability of a TM patient to develop MS, it ranges between 15-80%. I think CCSVI might be involved in that, that is why I got tested :wink:

Before doing the test I was actually looking for a MS patient with your characteristics (no lesions in the brain) who have done the liberation procedure. I did not find any in the sticky thread. I thought that if this type of MS patient improved, then I would also have a chance. I know the answer now.
Last edited by TMrox on Tue Jun 22, 2010 2:56 am, edited 1 time in total.
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Postby BBE » Tue Jun 22, 2010 2:39 am

Remember that no improvements can also mean that the procedure was not done the right way and small improvements could have been bigger improvements if the procedure was done even better. So at the moment no one can be sure he has any CCSVI or that "real" liberation has no effect on him.

I have not seen many cases where one person was diagnosed by more doctors to compare the findings.
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liberated?

Postby THEGREEKFROMTHED » Tue Jun 22, 2010 6:58 am

Procedure March 3,2010.

70% stenosis IJV's. Balloon angio. No improvements. Insted three months of solumedrol maintenance to calm things down. Vertebral vein had a septum dividing it in two. Azygos had a bad valve. There is more to this story than a simple balloon. IF they would start doing procedures instead of just arguing we could all find out sooner than later. Its obvious while this turf war continues so does our progression. Maybe our kids kids will get the answers.
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Postby rssugg » Tue Jun 22, 2010 7:21 am

There is more to this story than a simple balloon.


Like a stent.

IF they would start doing procedures instead of just arguing we could all find out sooner than later. Its obvious while this turf war continues so does our progression.


What does this mean?
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Postby Billmeik » Tue Jun 22, 2010 11:08 am

I hope it does not regress into posts trying to convince them they are wrong.



Kind of ironic coming from the person who I've watched regress dozens of threads over the last six months.
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Postby magoo » Tue Jun 22, 2010 3:38 pm

pklittle,
It has only been 6 days since your procedure if I am correct. It took 5 days for me to feel any improvement. Everyone is different and none of us knows what our treatment really means to our individual bodies and disease. There are no standards when it comes to testing or treating. Maybe this won't work for you, but I would still have hope. Many people saw improvement weeks or even months after treatment. And many who have seen nothing are still hoping for no progression. I have high hopes for you.
BTW, did you find a local doctor for follow up?
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby girl69 » Wed Jun 23, 2010 5:12 am

I had my liberation procedure end of March, both IJV stenosed, stent on the right side. No improvements what so ever :cry: I'm leaving tomorrow for Poland for my 3 months check-up and although only a doppler is planned, I wonder if a repeat venography wouldn't be a good idea... One reads so much about the azygos vein problems being so hard to detect, (need to move the x-ray machine around to see the problem like Dr. Sclafani mentionned...) or use an IVUS to detect things otherwise missed ! I know that they don't use the latter yet in Poland, but maybe concentrating on the azygos wouldn't be a bad idea. Anybody else feels something could have been missed there ?
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Postby mshusband » Wed Jun 23, 2010 5:15 am

86% of Zamboni patients had azygos problems ...

So yes, I'd say there's a better than 8 in 10 chance something was missed.
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