CCSVI gives results right away?

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

CCSVI gives results right away?

Postby Rosegirl » Fri Aug 20, 2010 10:44 am

The doctor that treated me a Georgetown said that it could take a while for improvements to show up. I got a second opinion from someone who has done over 25 CCSVI venagrams and he said that if you don't see results right away, the procedure probably didn't work.

Of course, both said that you need time to build up muscle strength to take advantage of things like less spasticity.

Anyone have a doctor's opinion or experience of whether symptoms change quickly? If yours changed slowly, what changes finally happened?
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Postby JCB » Fri Aug 20, 2010 12:19 pm

Check out ths thread by adamt

http://www.thisisms.com/ftopict-13330.html
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Postby Cece » Fri Aug 20, 2010 1:20 pm

Dr. Siskin said at the symposium that he is seeing a group that does not show improvements right away but then starts to show them over a course of a few months.
"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 jimmylegs » Fri Aug 20, 2010 6:47 pm

from everything i've seen so far, and without tallying up and taking percentages, it looks like:

-some see immediate improvements

-sometimes all the bonuses seem to stay

-i haven't heard of anyone who does not have some residual awareness of their illness (that does not mean there is no one out there who has felt tip top 100% since surgery - i just don't read everything)

-sometimes there is a short term improvement and then things revert to previous 'normal'. restenosis? something else? as yet uncertain.

-sometimes there is no immediate improvement and then things start to get noticed. (it could be a couple days, it could be a few months or longer before you really know how the treatment has affected you.)

-some see no real improvement. i think it will be a 'wait-and-see' situation to discover if relapses are diminished or disappear altogether.

-sometimes there are side effects (at very least recovery from procedure, of course)

-unfortunately, some patients seem to feel worse after treatment

i'll assume you know about the rest of the spectrum.

i don't think we are at the point of absolute certainty for individuals right now, about the aftereffects of CCSVI treatment.
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Postby CureIous » Fri Aug 20, 2010 7:30 pm

jimmylegs wrote:from everything i've seen so far, and without tallying up and taking percentages, it looks like:

-some see immediate improvements

-sometimes all the bonuses seem to stay

-i haven't heard of anyone who does not have some residual awareness of their illness (that does not mean there is no one out there who has felt tip top 100% since surgery - i just don't read everything)

-sometimes there is a short term improvement and then things revert to previous 'normal'. restenosis? something else? as yet uncertain.

-sometimes there is no immediate improvement and then things start to get noticed. (it could be a couple days, it could be a few months or longer before you really know how the treatment has affected you.)

-some see no real improvement. i think it will be a 'wait-and-see' situation to discover if relapses are diminished or disappear altogether.

-sometimes there are side effects (at very least recovery from procedure, of course)

-unfortunately, some patients seem to feel worse after treatment

i'll assume you know about the rest of the spectrum.

i don't think we are at the point of absolute certainty for individuals right now, about the aftereffects of CCSVI treatment.


I think that is about as accurate a synopsis as we can possibly have right now. All the more reason for the going-to-be-treated to be informed of all of the above, in writing, that they have to read, and sign, before being treated or even evaluated. Not to CYA the establishment, to really make it sink in that you need to give it time. Humans are easily swayed by feeling x at point y in time. I celebrated my improvements, gosh darn who wouldn't after feeling like their body was a prison that only let the "real you" out on special occasions. But, I always always always had an eye towards 1 month, 3 month, 6 month, then 1 year as a kind of personal check point. What happens post-op, honestly, is great for some, and all other modes as you astutely listed, but should not be taken as any indication of that 1-3-6 month or 1 year place of standing. That can ONLY be self-assessed accurately at 1-3-6 month or 1 year, not any sooner.

Very well put Jimmylegs. Can we make a sticky? lol. j/k but it is worth a printout and highly recommended for the newcomers!

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby selkie » Fri Aug 20, 2010 7:48 pm

Puts us all in a tough spot - if we wait for them to perfect the procedure, we run the risk of the disease getting worse.

If we rush into it, we are obviously participating in the medical field's learning curve about CCSVI so our outcome is far from guaranteed... but we all hope for great improvements and will probably settle for any improvement.

The reality of course we won't know until as Mark said we all need to do our own individual evaluation over time.

And after hearing Dr. S remark on how vastly different the veins are in each CCSVI patient, we're bound to see a wide spectrum in outcomes.

No absolutes. No guarantees. But hope nonetheless.
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Postby drbart » Fri Aug 20, 2010 8:55 pm

selkie wrote:Puts us all in a tough spot - if we wait for them to perfect the procedure, we run the risk of the disease getting worse.

If we rush into it, we are obviously participating in the medical field's learning curve about CCSVI so our outcome is far from guaranteed... but we all hope for great improvements and will probably settle for any improvement.


Go ahead and rush. Not all doctors are up on the latest, or have the curiosity, skill, diagnostic cleverness .. whatever .. to find non-obvious stuff.

If you get done now, you will at least have a venogram that shows something. You might get lucky and get a huge improvement. You might be in the "not yet" class, where you have something correctable, but nobody know's what. Or you might have something that doctor A doesn't know how to deal with that doctor B does.

It's not like you can't go back after the body of knowledge and technique has grown.

Nearly everyone I know who's be done thinks there are issues left to address, or has re-stenosed. They're all going back, perhaps not to the same doctor, but they're going back. Maybe they'll get the stents they refused the first time, maybe they'll get ballooned or stented in places that got missed the first time.

There's not much downside to being an early adopter. Maybe you'll be out some money. But the potential upside is huge.
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Postby Rose2 » Mon Aug 23, 2010 7:53 pm

hi!
I really disagree. I am coming up on one year Liberation. I still feel better everyday. Strenth is an obvious conclusion, yes. but there is more than that.
it was more than 6 months post Liberation that I noticed the bottoms of my feet were no longer numb.
Today my husband walked in after work and said, Why isn't the A/C on? Then we both looked at each other and laughed and laughed!!! No more heat intolerance! I have been sitting in this hot house working away on the computer and I never even noticed the heat!
Me, who was never without a glass of ice water for 10 years!
Sure, I knew my heat intolerance was better soon after treatment, but things like this, a whole day with no notice of the heat!! This is something that has been getting better with time.
Do not be discouraged if you do feel like SuperMan or SuperWoman the day after Liberation. That is unrealistic.
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how long does it take?

Postby Rosegirl » Tue Aug 24, 2010 1:21 pm

I was surprised to hear an IR say that you'll know right away if the procedure was successful. I should have asked him to define "right away"!

Maybe he means a few days? But in my case, the only problem I have is walking, and several times over the years, for a few minutes at a time, I would suddenly walk perfectly, so I understand his concept.

Now, about 7 weeks after my procedure, there are no changes except that my feet aren't purple any more.

Do you really really think that IN THIS CASE there's any hope that things will change eventually?
Last edited by Rosegirl on Tue Aug 24, 2010 5:04 pm, edited 1 time in total.
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Postby Rose2 » Tue Aug 24, 2010 1:40 pm

I believe there IS ALWAYS HOPE.
This is such a weird disease. I do believe you can get stronger. I don't know what that means in your overall picture but I sure wouldn't throw the baby out with the bathwater at this early point in your healing.
Sincerely,
Rose2 ;)
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Postby Motiak » Tue Aug 24, 2010 2:44 pm

drbart wrote:
selkie wrote:Puts us all in a tough spot - if we wait for them to perfect the procedure, we run the risk of the disease getting worse.

If we rush into it, we are obviously participating in the medical field's learning curve about CCSVI so our outcome is far from guaranteed... but we all hope for great improvements and will probably settle for any improvement.


Go ahead and rush. Not all doctors are up on the latest, or have the curiosity, skill, diagnostic cleverness .. whatever .. to find non-obvious stuff.

If you get done now, you will at least have a venogram that shows something. You might get lucky and get a huge improvement. You might be in the "not yet" class, where you have something correctable, but nobody know's what. Or you might have something that doctor A doesn't know how to deal with that doctor B does.

It's not like you can't go back after the body of knowledge and technique has grown.

Nearly everyone I know who's be done thinks there are issues left to address, or has re-stenosed. They're all going back, perhaps not to the same doctor, but they're going back. Maybe they'll get the stents they refused the first time, maybe they'll get ballooned or stented in places that got missed the first time.

There's not much downside to being an early adopter. Maybe you'll be out some money. But the potential upside is huge.


I think CCSVI is a big part of the MS puzzle but you can't say there's not much downside because there are some people who actively got worse after the procedure. It's a big risk to take for people who currently have little disability, not so much for people who are more disabled.
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