looking for someone liberated and still getting worse

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looking for someone liberated and still getting worse

Postby thisisalex » Thu May 06, 2010 3:40 pm

Hey everyone

I am looking for someone who has been liberated (but not restenosed), someone who has normal blood flow but still getting relapses or getting worse than before.

Is there someone?

Rici doesnt count :( because his blood flow is not normal

alex
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Postby lucky125 » Thu May 06, 2010 5:05 pm

You ask a great question.

I doubt that you will find anyone like that here, I'm afraid. I think anyone who fits your description has little incentive to participate. It must be brutal to have everything go "right" then not get any benefits, or continue to decline.

I met a woman like that this weekend. She is a Dake patient who has had little to no improvements. I do not know any more details than that.

She doesn't come here. I can understand why. :(
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby cah » Thu May 06, 2010 5:27 pm

lucky125 wrote:I met a woman like that this weekend. She is a Dake patient who has had little to no improvements. I do not know any more details than that.


But as sad as this is, it's not "worse than before". But you're right, such a person isn't likely to be here.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Re: looking for someone liberated and still getting worse

Postby EnjoyingTheRide » Thu May 06, 2010 5:54 pm

thisisalex wrote:Hey everyone

I am looking for someone who has been liberated (but not restenosed), someone who has normal blood flow but still getting relapses or getting worse than before.

Is there someone?

Rici doesnt count :( because his blood flow is not normal

alex


It's a tough question to answer, because most of us don't know for sure if we've restenosed or not.
Mitch
Please visit my blog at www.enjoyingtheride.com
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Postby eric593 » Thu May 06, 2010 10:01 pm

I know there are quite a few that have not perceived any benefit from treatment. Fiddler was the latest one that posted on the tracking thread, but it's too early to tell whether he's helped long-term. CostumeNastional also did not experience any improvement.

There are only 2 that I can recall off the top of my head that reported that they worsened immediately after treatment, ClaireParry and TheGreekfromtheD. Whether they were in the midst of an exacerbation that could not be stopped or treatment triggered one, there is no way to know.

As has been said, so many others do not continue to follow up so it's impossible to say their status. I would hazard a guess that there are quite a few that have not sustained improvements, just based on what we do know and what Dr. Sclafani has said of his own follow up. Because RRMS typically fluctuates over long periods of time and there IS a placebo effect going on too (and the denial of a placebo effect only entrenches the placebo effect more strongly), I would say you'd probably have to wait a couple years to really know about any true benefit. I know that people seem to HATE the word placebo, but the fact remains that placebo patients experience 30-40% reduction in progression, relapse rate, etc. in drug trials. So between what we know of placebo effect in MS patients, what we know of the reported cases of those who have worsened or not improved or had only temporary improvements, I think it's important to be realistic in one's expectations when one goes for treatment. There are a lot of people who it does not appear will be helped by this treatment. That's just the bottom line based on what we DO know. Maybe if treatment methods are improved, enduring success rate will improve too, we can't say at this point.

And no one has reported any objective measures demonstrating improvements - if people begin reporting those as time passes, they may also give us further clues as to what the liberation procedure is doing to our disease process.
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Postby ikulo » Thu May 06, 2010 10:54 pm

Keep in mind that many of the people getting worse did not know whether they re-stenosed. To my knowledge I haven't read of anyone being liberated, getting worse, and having their veins remain open. could be wrong though.
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Postby eric593 » Thu May 06, 2010 11:15 pm

ikulo wrote:Keep in mind that many of the people getting worse did not know whether they re-stenosed. To my knowledge I haven't read of anyone being liberated, getting worse, and having their veins remain open. could be wrong though.


Yes, that's right. There is that pregnant English lady (gibblygook?) who is getting worse but it looks like she re-stenosed. There may be more.

What I find interesting is the huge panoply of problems with our veins. Not just ONE kind of problem, but a whole variety of DIFFERENT problems being found. We all seem to have problems with our veins, but the # of different KINDS of problems confounds it all the more.
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Postby se1956 » Thu May 06, 2010 11:30 pm

My proposal (again):

1st step: All get ballooning
2nd step: Every patient calculates his MSIS value every week
3rd step: Control checkup every (2-3) month(s) (doppler/MRV?)

The patient doesn't know the results of the controls and the physician doesn't get the MSIS-values.

4th step: After 12 month, on unblinding, there should be a (time delayed) (cross)correlation between the MSIS values and the occurrence of restenosis.

R.
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Re: looking for someone liberated and still getting worse

Postby thisisalex » Fri May 07, 2010 12:40 am

EnjoyingTheRide wrote:
It's a tough question to answer, because most of us don't know for sure if we've restenosed or not.


I mean im looking for a person, who is not restenosed, and this is proved by a doctor.
My aim is to find a person like that.
That would mean Zamboni was wrong
as soon as we dont have anybody like that Zamboni was right.

Up until now Zamboni is right...

alex
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Postby whyRwehere » Fri May 07, 2010 12:43 am

I think, that if the problem is clear cut, there will be definite improvement. the problem comes with missing veins or faulty untreated valves, or perhaps another problem where no one was looking...these people will not noticeably feel better until there is an option for new treatment. If everyone was treated, that would focus the science on the bunch that is left over....I am hoping for development of man made veins/implants and perhaps stem cell treatment.
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Postby thisisalex » Fri May 07, 2010 12:54 am

Thank you Eric, I absolutely agree with you. Just trying to play with this a littlebit. Of course it would be nice to know the status of the first 65 patients, treated by Zamboni... I hope there will be a 24 month follow up, which must be this summer i guess...

alex
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Postby gibbledygook » Fri May 07, 2010 5:04 am

Hi Alex,

I had stents bilaterally one of which has a new narrowing from 11mm to 3mm. To my surprise Professor Dake is happy that there is sufficient flow and a big enough opening not to warrant any ballooning. I am now 32 weeks pregnant. From week 20 or so as my blood pressure collapsed and after circa 20 weeks of excessive and probably harmful cacao consumption I started to suffer an ongoing relapse. Or at least the myoclonus which had magically disappeared after the stent operation have come back even worse than they were before. So I have now clearly deteriorated since the operation. :?
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 » Fri May 07, 2010 8:35 am

There are a lot of people who it does not appear will be helped by this treatment.



I think there is a big confusion between ms symptoms and ms progression.
If your progression is stopped it is a huge help.

All of dake's patient get a follow up mri 2 months after liberation. I'd like to see a paper that looks at disease activity over that time and the 1 year.
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Postby Billmeik » Fri May 07, 2010 8:35 am

There are a lot of people who it does not appear will be helped by this treatment.



I think there is a big confusion between ms symptoms and ms progression.
If your progression is stopped it is a huge help.

All of dake's patient get a follow up mri 2 months after liberation. I'd like to see a paper that looks at disease activity over that time and the 1 year.
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Postby patientx » Fri May 07, 2010 8:44 am

eric593 wrote:And no one has reported any objective measures demonstrating improvements - if people begin reporting those as time passes, they may also give us further clues as to what the liberation procedure is doing to our disease process.

Eric,

You make a good point. And for all the disdain directed toward neurologists, they would be in a good position to make these objective measures, through neuro exam, EDSS score, etc. Unfortunately, I don't think we've seen anything reporting like this.

Like you, I tried to breakdown the status of those who underwent the procedure and reported back here, at least for the Stanford group. Only about half that group reported anything here, and as you noted, not all showed improvement. Of course, that might be expected, since neurological damage could take a long time to heal, if it heals at all. But then again, this wouldn't explain some of the reports of immediate improvement in neurological symptoms.

On the re-stenosing, it would seem this could definitely be a concern after angioplasty. But if stents wre installed, one wouldn't think they would thrombose so quickly.
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