Relapses after the liberation treatment?

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

Postby L » Tue May 25, 2010 8:04 am

Wouldn't the course of the auto immune component of MS remain unchanged for a period of time after CCSVI intervention? Iron build up won't go away over night.
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Postby Billmeik » Tue May 25, 2010 9:30 am

to be honest I dont get why people see so much improvement. It almost weakens the arguement, since after liberation none of the damage is gone.
And yes I think the lesions could have some lasting 'momentum' .


The only case that sticks in my head here is an attack without restenosis. That is something Ive been waiting for and fearing and it seems to be here.
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Postby mshusband » Tue May 25, 2010 9:46 am

Where do you get this was an attack without restenosis?

She (or he - but I get the impression she) says the hand numbing started immediately after liberation. Not a length of period after liberation ... right after - as she was in the recovery room.

That to me would suggest she was about to go into an attack (so there is an attack WITH inflammation right now).

She was liberated but that didn't stop the inflammation ...

Once the inflammation of the attack dies down ... we should see where she nets out.

I don't see relapse after liberation at all. I see relapse coming on - liberation that day then inflammation staying around.
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Postby mila77 » Tue May 25, 2010 10:46 am

mmcc wrote: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.


mmcc

I know that MRI dye and CT dye are different, I had both of them before procedure. However, dye used during Venous CT was the same which they used during liberation procedure so if I didnt have bad reaction during CT scan than I should not have bad reaction to dye during procedure. That is why I am assuming that my hand numbness is not caused by dye

Mila
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Postby mila77 » Tue May 25, 2010 10:52 am

By the way,

I was called today by Marta from Euromedic and thay managed to squeeze me in for an earlier checkup with dr Simka, so in half a month I will know if my blood flow is causing those problems with hand numbness or it is something else.

Mila
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Postby L » Tue May 25, 2010 10:53 am

mila77 wrote:By the way,

I was called today by Marta from Euromedic and thay managed to squeeze me in for an earlier checkup with dr Simka, so in half a month I will know if my blood flow is causing those problems with hand numbness or it is something else.

Mila


Good luck Mila. Hopefully, by then, it will have just disappeared..
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Postby North52 » Wed May 26, 2010 11:54 am

Dear Mila,

I found it interesting that you developed a numb hand after the procedure, as I had the same experience. I had balloon angioplasty one week ago and will be posting details of the experience shortly. I had two lesions, one in the azygous that was ballooned but another bad one of the left jugular related to a congenital abnormality of duplicate superior vena cava. This second lesion could not be ballooned. I still, however, derrived benefit from the procedure. Hands warmer, improved gait and improved energy level. A day after the procedure, however, I noted numb fingers of my right hand. This is a symptom I never had before. I suspect I know why this happens. By improving circulation in one vein and therefore pressures, you might be impairing flow in another vein. In my situation, it was evident that flow from my left jugular ended up going directly to my azygous through an extensive and elaborate system of collaterals. When ballooned and flow and pressures increased in my azygous, I suspect this may have impaired flow of collaterals into my azygous that were downstream of the obstruction. This in turn could cause refux in new areas of the brain and spinal cord.
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Postby nicko » Wed May 26, 2010 12:26 pm

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?


I agree, when did it go from completely stopping relapses to this?? I guess this is truly why we need rigorous trials. We cannot solely go off of what people are saying. It may be more important what people are NOT saying.

I want ccsvi to be the real thing.. but this does put some doubt in my mind.
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Postby BooBear » Wed May 26, 2010 12:35 pm

Can we ask those who have had relapses post-liberation whether or not they have stopped taking their medications?

I suspect that we will need to continue the meds for some time to control inflammation until things restore to normal, but I don't know if an antibiotic with anti-inflammatory properties would be just as effective as one of the CRABS here.

Any info is very much appreciated.
Three veins angioplastied.  One renewed life.  
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Postby mila77 » Wed May 26, 2010 2:12 pm

BooBear wrote:Can we ask those who have had relapses post-liberation whether or not they have stopped taking their medications


Boo Bear,

In my case I was not taking any drugs for almost 2 years.
Just after diagnosis 2.5 years ago (first onset 13 years ago) I joinde clinical trials for BG00012 but I didnt like the attitude of my neurologist so I quit it after half a year. Then I was on LDN for 2 or 3 months and then I decided to quit all the meds and see what happens (hoping for another 10 years break).
So in my case I dont think it was related to stopping taking medications.

North52,

Thanks for your post. It is really interesting what you suggest. I honestly cant say if it is the case or not. I hope I will know more after meeting dr Simka for an earlier checkup in half a month.

Mila
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Postby gibbledygook » Fri May 28, 2010 8:11 am

I am pregnant and obviously not on disease modifying meds which I hadn't taken for a few years prior to the stent operation anyway. My relapse coincided with extremely low blood pressure, 20 weeks of cacao consumption and recent uptake of low molecular weight heparin. Unfortunately all of these things are likely to have very adverse effects on the damaged blood brain barrier. I'm now at week 35 of my pregnancy, well into the 3rd term and my blood pressure has once again collapsed and once again I'm feeling significantly worse in my MS symptoms.
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 Rokkit » Fri May 28, 2010 8:14 am

Good grief, Gibbledygook, I for one can't wait until you have that baby! :D
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Postby gibbledygook » Fri May 28, 2010 8:57 am

Rokkit, I am with you there!!! I can't believe my blood pressure is now at its lowest once more. This baffled the obstetrician as well. He was worried about placental hypoperfusion. I'm worried about cerebral hypoperfusion! My nosebleed is back so I reckon low blood pressure just opens up those endothelial "tight" junctions like nothing and out pours the iron, inflammatory mediators etc etc etc. so much for pregnancy being good for MS. Pah!
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 ErikaSlovakia » Fri May 28, 2010 10:27 am

gibbledygook wrote:Rokkit, I am with you there!!! I can't believe my blood pressure is now at its lowest once more. This baffled the obstetrician as well. He was worried about placental hypoperfusion. I'm worried about cerebral hypoperfusion! My nosebleed is back so I reckon low blood pressure just opens up those endothelial "tight" junctions like nothing and out pours the iron, inflammatory mediators etc etc etc. so much for pregnancy being good for MS. Pah!

I have started to follow your story last July. I follow all your post.
I strongly hope you will be happy soon with your baby.
I admire you a lot. I would not be able to be as strong as you are.
GOOD LUCK!
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 Whitey » Fri May 28, 2010 3:16 pm

Billmeik wrote:to be honest I dont get why people see so much improvement. It almost weakens the arguement, since after liberation none of the damage is gone.
And yes I think the lesions could have some lasting 'momentum' .


The only case that sticks in my head here is an attack without restenosis. That is something Ive been waiting for and fearing and it seems to be here.
One theory of mine is that perhaps the veins become more stenosed over time, and thus slowly and slightly starving the brain of oxygen, thus the symptoms start appearing.

I think it was Dr. Sclafani who wrote:
"Consider the brain to be like a barrel with two openings. take two hose and place them in the openings and push water into one hose and let it drain through the other hose by regulating input and output you can get a steady state to keep the fluid in the barrel to the same level. Now block the drainage. Either less water can go into the barrel or the barrel will explode. In the body, if you reduce the amount of blood getting out of the skull, then the amount of blood that gets into the brain must be reduced."

On that theory, the less blood that drains, the less blood that enters, thus putting the brain in a slightly "starved" state. When that is alleviated, some of the symptoms dissapear, like the "Cog Fog" and circulation issues.

These are only my guesses though...
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