Relapses after the liberation treatment?

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

Relapses after the liberation treatment?

Postby spiff1970 » Sun May 23, 2010 8:41 am

Hi all,

Assuming there's been people here who did the Liberation Treatment more than a couple of months ago let me ask what really matters: have you experienced any relapse or progression since the procedure?

thanks,

Spiff
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Postby mose » Sun May 23, 2010 9:07 am

From what I've read, there has been relapse/progression after the liberation procedure in several. This has been associated, in almost all cases, with restenosis.
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Postby magoo » Sun May 23, 2010 9:36 am

7 months post procedure...NO RELAPSES!
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 mila77 » Sun May 23, 2010 10:45 am

4 weeks after procedure
Going from no symptoms before treatment to numb hand just after treatment and continuing till this day.

Is it a relapse?

I will have the checkup in 2 months and then I can say if it is restenois or not but anyway it is strange to me that I entered operating room perfectly fine and left it with numb hand. Any thoughts?
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Strange

Postby fiddler » Sun May 23, 2010 12:08 pm

That is strange, Mila. How often were you having relapses before the they did the treatment? What did you have done in Katowice? Only venoplasty, or a stent, as well?
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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A relapse is............

Postby MarkW » Sun May 23, 2010 12:28 pm

Hello Mila,
The usual definition of a relapse is a new symptom which is caused by MS. As you are in Poland I suggest you have your veins rechecked and de-stenosed if required (hope you can afford it). You also need a neuro to exclude other possible diagnoses of a numb hand. If it is an MS relapse and your veins are clear you could consider a steroid pulse.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby LR1234 » Sun May 23, 2010 1:23 pm

I had vertigo relapse (also had nystagmus mini relapses)
Looking back at my CCSVI about a few weeks after the procedure I still felt well and not MSy but I started to get a huge feeling of pressure in my neck where I had my angio.

I still have improvements like my arms are no longer weak, but the vertigo is a nightmare I have occlipsia (sp???) now and nystagmus.

I am trying to get another venogram done to check the if I have restenosed (the blockage is too high for doppler to see)
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Re: Strange

Postby mila77 » Sun May 23, 2010 1:57 pm

fiddler wrote:That is strange, Mila. How often were you having relapses before the they did the treatment? What did you have done in Katowice? Only venoplasty, or a stent, as well?
...Ted


Hi Ted,

I had my first relapse 13 years ago, then 10 years nothing, and for previous 3 years I usually had relapses every 7-9 months and those were mild relapses, no hospitalization just steroids in pills and I was able to go work. I had my last relapse (both hands numb) in January while I was visiting Canada, but I took storoids just in case so in a week was back to normal. So far all my symptoms were backing after relapses and as I wrote I was 100% fine while going for the treatment so my thinking is:
I was in a perfekt physical condition (and I had narrowings in both jugular veins) so after opening theese blockages, even if I restenosed just after the procedure, I should still be in the same perfect condition.

I had balooning of left jugular vein and stent placed in the right jugular vein. My right hand, the one closer to the stented vein is numb.

Well this is all a mystery for me and something definitely is not right but I will try to call Euromedic tomorrow to ask if they can squeeze me in for a checkup earlier than end of July.

Mila
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Postby gibbledygook » Mon May 24, 2010 6:58 am

I had stents placed bilaterally at Stanford in both jugulars. I had terrific improvements in myoclonus and bladder control after the surgery. 3 months later I became pregnant and I've felt worse ever since. I had a relapse around week 20 of the pregnancy when the myoclonus became the worst it's ever been and I developed new mild weakness in the left arm and hand. Owing to this I had an ultrasound scan of the stents which showed that the left stent had a new narrowing to 3mm around the transverse process at C1. However neither Professor Dake nor Dr Simka thought that this was a problem as the flow still looked good. I suspect that the deterioration could be attributed to excessive cacao consumption, very low blood pressure and an anti-coagulant which I started in week 17 of the pregnancy. I still clearly have a lot of inflammation in the brain/spinal cord in spite of the opened jugulars.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby Billmeik » Mon May 24, 2010 7:08 am

this board has gone from no relapses after liberation to several. Its important to rule out restenosis because otherwise the logic is broken?
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Postby Cece » Mon May 24, 2010 7:26 am

mila77 wrote:I will have the checkup in 2 months and then I can say if it is restenois or not but anyway it is strange to me that I entered operating room perfectly fine and left it with numb hand. Any thoughts?

Something that happened in the operating room caused the numb hand? It fits with the same question as those who have immediate improvements: what to make of these immediate changes, when it's been thought that it's the demyelination causing these symptoms, and the demyelination is still there? Did the numb hand happen during the procedure, when the doc could still see the blood flow, or immediately after? For it to happen so quickly, I'd say it was elastic recoil (springing back to original shape), although I don't think this can happen in the stented vein...and the doctor would've seen it if it happened during the procedure itself. I suppose another possibility is if you've ever had a bad reaction to the contrast dye before? Or to the stress of the procedure? Or any anesthesia that was used?

A couple weeks ago I experienced a numb hand for the first time ever...it scared me! And it only lasted less than an hour.
Billmeik wrote:this board has gone from no relapses after liberation to several. Its important to rule out restenosis because otherwise the logic is broken?

Maybe some well-designed scientific studies are needed. ;)

I think we're getting a lot more reports than there used to be, so more range of responses to the treatment?
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby mila77 » Mon May 24, 2010 1:58 pm

Cece wrote:Something that happened in the operating room caused the numb hand? It fits with the same question as those who have immediate improvements: what to make of these immediate changes, when it's been thought that it's the demyelination causing these symptoms, and the demyelination is still there? Did the numb hand happen during the procedure, when the doc could still see the blood flow, or immediately after? For it to happen so quickly, I'd say it was elastic recoil (springing back to original shape), although I don't think this can happen in the stented vein...and the doctor would've seen it if it happened during the procedure itself. I suppose another possibility is if you've ever had a bad reaction to the contrast dye before? Or to the stress of the procedure? Or any anesthesia that was used?


Hi Cece,
I can not say exactly when I started feeling this numbness. In the operating room I had IVs in hands and everything was so exciting that I wasn't paying attention to my symptoms. But just after they moved me back to the hospital room and all the emotions were gone I felt it.
As for your second question I never had bad reactions to dye. I had MRI with contrast very often while I was in clinical trial for BG00012 and then I had CT scan with the same dye which they use during liberation procedure so I dont think that it could cause any problems.

I called Euromedic today to ask for an earlier checkup but they couldn't squzee me in right away so Marta is supposed to get back to me if she finds earlier date.

Mila
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Postby Badger » Tue May 25, 2010 3:39 am

8 weeks after surgery -

I still benefit from my initial improvements, like standing with my eyes closed, a steadier stride, better balance but I am still struggling when walking long distance, over 500 yards.

I spoke with a friend of a friend who is a DR and she advised that the nervous system does repair but you have to be patient. She estimated that it will take 2-3 months for 1" to be repaired.

So I am looking future with confidence!!! :wink:
<em>Badger
RRMS 2004</em>
Appt Katowice 23/24th March
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Re: :

Postby ErikaSlovakia » Tue May 25, 2010 4:10 am

Badger wrote:I still benefit from my initial improvements, like standing with my eyes closed, a steadier stride, better balance but I am still struggling when walking long distance, over 500 yards.


The same in my case.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby mmcc » Tue May 25, 2010 5:19 am

Hi Cece,
I can not say exactly when I started feeling this numbness. In the operating room I had IVs in hands and everything was so exciting that I wasn't paying attention to my symptoms. But just after they moved me back to the hospital room and all the emotions were gone I felt it.
As for your second question I never had bad reactions to dye. I had MRI with contrast very often while I was in clinical trial for BG00012 and then I had CT scan with the same dye which they use during liberation procedure so I dont think that it could cause any problems.

I called Euromedic today to ask for an earlier checkup but they couldn't squzee me in right away so Marta is supposed to get back to me if she finds earlier date.

Mila[/quote]

The dye used in MRIs is not the same as CT dye. I have had MRI dye lots of times with no problems, but had a bad reaction to CT dye.
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