Ive been Liberated, but NO improvements! :(

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

ccsvi

Postby blossom » Mon Aug 16, 2010 8:00 pm

i was treated aug.3. i had small things for the good and 1 thing that was not good. now i'm kind of flipping with things. but for sure these dr.'s are on the right track because i feel no one would be getting any results good or bad if there isn't a whole lot to this. don't give up on the positive. while we wait hopefully these doctors are connecting the dots. believe me, i do understand your impatience and i hope we all can be reporting nothing but good soon. remember the dr.'s are connecting the dots but we have to help them. hang in there.
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Re: Ive been Liberated, but NO improvements! :(

Postby drbart » Mon Aug 16, 2010 8:43 pm

adamt wrote:i know its only been 24 hours since liberation but i see no changes and this bothers me as everyone else seems to see big improvements immediately.


I think you haven't been paying attention. According to Siskin, about 1/3 each have marked improvement, mild improvement, and no improvement.

This pretty much squares with the percentages I've seen personally.

The question is, why doesn't everyone improve a lot? There seems to be no predictor - RR, SP, PP, or physiology - so I'm guessing IJVx2 and AZY are only part of the story, and we don't know the rest yet.
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Re: Ive been Liberated, but NO improvements! :(

Postby Cece » Mon Aug 16, 2010 9:28 pm

drbart wrote:The question is, why doesn't everyone improve a lot?

Possibilities?

* missed stenosis in the vertebrals
* missed azygous stenosis (there may be a lot of this?)
* for liberations done prior to May-Thurner revelation or by a still-going-in-on-the-right doc, missed May-Thurner disease
* degree of permanent neurological damage (as opposed to compromised but not permanently damaged) limiting potential recovery
* missed stenosis that might've been found with ivus
* rapid elastic recoil restenosis
* thrombosis complication
* deconditioning

Adamt, it does seem unusual that such small percentages of stenosis in your jugulars had such a big effect. I can't say I understand it. Hope the next few months are good to you.
"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 whyRwehere » Mon Aug 16, 2010 11:47 pm

Hi Adam,
I am sorry that you have not found any improvement after the procedure. I think your MRV results probably hold the key:
Also the MRV results said:
The Right IJV is constricted between the transverse process of the atlas vertebra and the digastric muscle. On the left side significant compression of the IJV in the same mechanism, however the lumen of the vessel is visable on he entire length.


I don't know what they can do to reduce the compression, but it is probably what you need.
I am going to look into Rolfing/ IS, to help my husband 's very bad posture. He is already seeing a chiropractor...I think this will be the only way we can address compression for him.
Keep in touch,
Why
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Postby TMrox » Tue Aug 17, 2010 2:27 am

I agree with opinion above.

This link might help on Atlas correction.

http://nuccadoctordavis.wordpress.com/2 ... and-nucca/
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby manojag22 » Tue Aug 17, 2010 3:27 am

I was liberated on last wk of Feb, my right IJV was stented (60 * 10mm) just below the ear, for last two weeks I'm having weakness, stiffness in right hand from shoulder to palm.. Not sure what is causing this ?? is this be MS or due to stent, Anyone have any idea, pls advise.. (One of my MS friend mentioned that it co...uld be... due to acc nerve getting affected by size and location of stent).
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Postby adamt » Tue Aug 17, 2010 11:10 am

Is Rolfing a common treatment in most countries?
does anyone know if it can resolve the IJV compression?

maybe this is why i haven't seen improvements

Let me know how the Rolfing goes WhyRwehere,



Cece, after Dr Sclafani saw my images he said he thinks i have May Thurners, however i dont have any M-T symptoms like deep vein thrombosis,

my left thigh just sings a bit at times,
and my left leg is weaker than my right leg but that could just be a coincidence

im thinking if its worth getting the M-T (if i actually have it) treated when i dont have M-T symptoms?

thanks
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Postby Cece » Tue Aug 17, 2010 11:17 am

adamt wrote:Cece, after Dr Sclafani saw my images he said he thinks i have May Thurners, however i dont have any M-T symptoms like deep vein thrombosis,

my left thigh just sings a bit at times,
and my left leg is weaker than my right leg but that could just be a coincidence

im thinking if its worth getting the M-T (if i actually have it) treated when i dont have M-T symptoms?

thanks

I think so...because maybe it's causing those mild left leg issues and it would also be redirecting blood flow into the azygous. If you have any residual stenosis there it could be too much for the azygous. If it were me I'd get it checked out and let the doctor decide.
"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 adamt » Tue Aug 17, 2010 12:25 pm

Cece wrote:I think so...because maybe it's causing those mild left leg issues and it would also be redirecting blood flow into the azygous. If you have any residual stenosis there it could be too much for the azygous. If it were me I'd get it checked out and let the doctor decide.


thanks Cece,

i just done another search on M-T symptoms and one was tenderness of the leg, and that is a perfect way of describing the 'stinging' in my left thigh

once i get the Left illiac vein stented/ballooned should i expect my left leg to become stronger, and/or my mobility/symptoms to improve?
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Postby Nasti » Wed Aug 18, 2010 7:27 am

And it took 2 mos for me to notice any changes :)
I also started posting all sort of messages here to heva comparisons with other people, but everybody's story is different. I was in the middle of a relapse and everything went away with the same pace as before. One month after I started noticing more energy. Nothing else. But I think I am functioning just OK now. So, WAIT!!!
Best of all...
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Postby 1eye » Wed Aug 18, 2010 8:31 am

Cece wrote:I think if nerves are 'compromised' then the restoration of blood flow can make those compromised nerves functional again. But if it's permanent damage, then they cannot come back.


I'm hoping not to have no evidence that nerve restoration is possible. I know spinal nerves don't usually grow back but there are a couple of things:

1. nerve damage sometimes does repair. I heard it is like 1cm. per month.

2. there is tons of redundancy everywhere in the CNS (even in spinal cord). Stroke victims often rebuild lost function. I think I could, if my blood started flowing properly.

Never say never. Unless you're King Lear. He can say it as many times as he wants ;-)
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby PCakes » Wed Aug 18, 2010 8:42 am

1eye wrote:Never say never.
..end quote ;)
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Postby 1eye » Wed Aug 18, 2010 9:10 am

adamt wrote:thank you very much for all the replies, this has made
Everyone is right, even though i kept telling myself 'i am expecting the
worse' but deep down i expected immediate improvements.


No, the worst is much worser. And some people have got worser than they were. Not many, but enough that you know you done good. Hope you are better in time.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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