I will have my Valves Crushed, anyone ever have this ?

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

I will have my Valves Crushed, anyone ever have this ?

Postby LymeNurse » Sat Apr 23, 2011 10:51 pm

Had extensive talk with my IR. As I reported earlier, I was first MRV patient at imaging center and they screwed up on my Azygos pics., so we won't see those problems until 5/2, procedure day.

However, when I asked about Cutting Valves vs. Ballooning, my IR says he can "Crush" them and he can actually hear the "Cracking" sound during the procedure.

In this way, he can use a larger balloon and achieves the same results one would get with a Cutting Balloon. Has anyone ever heard of this ?

Thanks in advance,

Gary
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Re: I will have my Valves Crushed, anyone ever have this ?

Postby drsclafani » Sun Apr 24, 2011 12:48 am

LymeNurse wrote:Had extensive talk with my IR. As I reported earlier, I was first MRV patient at imaging center and they screwed up on my Azygos pics., so we won't see those problems until 5/2, procedure day.

However, when I asked about Cutting Valves vs. Ballooning, my IR says he can "Crush" them and he can actually hear the "Cracking" sound during the procedure.

In this way, he can use a larger balloon and achieves the same results one would get with a Cutting Balloon. Has anyone ever heard of this ?

Thanks in advance,

Gary


i believe that sound ma be tearing of the annulus of the valve. I prefer not to hear it, as i think from m experience that it may be associated with increased risk of thrombosis.
crushing the valve sounds implausible to me. the valve is fused into a cylinder with a narrow outflow. it is more likely that a llarge balloon may stretch it open.
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Re: I will have my Valves Crushed, anyone ever have this ?

Postby Johnson » Sun Apr 24, 2011 1:26 am

drsclafani wrote:
LymeNurse wrote:Had extensive talk with my IR. As I reported earlier, I was first MRV patient at imaging center and they screwed up on my Azygos pics., so we won't see those problems until 5/2, procedure day.

However, when I asked about Cutting Valves vs. Ballooning, my IR says he can "Crush" them and he can actually hear the "Cracking" sound during the procedure.

In this way, he can use a larger balloon and achieves the same results one would get with a Cutting Balloon. Has anyone ever heard of this ?

Thanks in advance,

Gary


i believe that sound ma be tearing of the annulus of the valve. I prefer not to hear it, as i think from m experience that it may be associated with increased risk of thrombosis.
crushing the valve sounds implausible to me. the valve is fused into a cylinder with a narrow outflow. it is more likely that a llarge balloon may stretch it open.


Okay, so I can ask the question now, rather than in the consult: have you moved away from cracking the annulus? I was always a bit sceptical of that. In my blissful ignorance, I think of the annulus as a cartilaginous-muscle-type structure. I have had trepidation, in light of Rici's plight. Having 18mm jugulars, with funky valves at the confluences, I have been wondering about jumping from the pan into the fire. I have had episodes of "turbo-"MS", and I don't want to go there again. I don't know how the (insert expletive of your choice) Rici bore with that for as long as he did.

So what happens? Do you balloon to the diameter of the distal healthy vein within the annulus? If the annulus is not "cracked", is there an element of elastic recoil anticipated? Is your approach different depending on INR, a PTT, patient's age and over-all presentation of health? I sense that you are artistic in your craft, and that you are intuitive. Is that a factor in individual instances?

Disclaimer:
Blame the high-altitude Chilean for any rambling - I am. My keyboard has been drinking, not me.
My name is not really Johnson. MSed up since 1993
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Postby Cece » Sun Apr 24, 2011 7:26 am

The cutting balloons are experimental in the treatment of CCSVI and may result in greater incidences of clotting. The big balloons are experimental too in angioplasty of any sort. I used to be a real fan but we have heard from patients who have had collapse of the vein, then the vein clots closed and is permanently lost. It's speculated that this is a result of the too-big balloons, we don't know what the risk percentage is, it doesn't happen to everyone who gets the big balloons but these veins are valuable and no one wants to be the person it happens to.

There may be some situations where an annulus should be popped if it is a hypoplastic annulus but even then it's experimental. One person I know who had this done worsened immediately after the procedure. She had a new MS symptom that night and has new lesions in the two months since. It's anecdotal and we don't know for sure what caused what but I am seeing reasons for caution.

Gary, how bad is your health right now? There is a whole range from cautious to aggressive when it comes to IRs. Where in that range do you see yourself wanting to be?
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How sick am I ? What am I looking for ?

Postby LymeNurse » Sun Apr 24, 2011 8:59 am

My symptoms have been progressive over the last 4 years, but I never felt sick until about 2 years ago.

I wake up every morning shaking in my sleep. Feels like my brain is shaking. Even with coffee, I can't seem to wake up. I ache all over from the head down. Pain I can take, but when it's in the head, it's another ball game. I have pains all over my head. Some of it feels deep within, other pains are tender spots on the scalp or over the occipital notch.

My right eye gets real blurry at times. My CNS is non-exhistant at times. I can tolerate very little stress. Bright lights, loud noises will send me into a flury of head symptoms. I even get what some call Lyme Rage, but it's more of the over stimulation that causes severe irritability.

Themoregulation has been a big factor. Hormones and Neurotransmitters are all screwed up and confirmed by lab testing.

Stiff neck, Postural tachycardia without Orthostasis, shortness of breath that comes from nowhere. And the crying that comes when I treat is ridiculous 2 y.o. crying that makes me look like a Psych case. All I have to do is stop treating for a week or so and much of the severity of these symptoms ease up, but they are always there no matter what.

So, if I was offered bypass, I would jump at it. I want the most aggressive approach with the best results to date.

I am not wheelchair bound by far. I do lack energy and fatigue easy, but my legs are strong for the most part as are my arms. They just don't stay that way for long. It all feels like blood flow problems to me.

So, whats the best way to go... ?
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Postby Cece » Sun Apr 24, 2011 12:07 pm

You've been through a lot with this disease. Most aggressive with best results...the two might be at odds, but we don't have any data.

Stents are aggressive with better immediate results but don't hold up well long-term, maybe. Breaking the annulus or using oversized balloons may give good immediate results with less than good long-term results depending on how the vein reacts to the injury. When the IR is doing the procedure, he'll have a moment when he chooses the balloon. There is a possibility of undersizing it and having the results not last. But there is the possibility of oversizing and doing more harm to the vein.

I wish this were easier, I can't say what to advise, although if Dr. Sclafani advises that he does not break the annulus (and make that 'crack' sound your IR described), then that to me seems safest. But then what do you do? Tell your IR these concerns and see if he'll agree to a maximum balloon size (16) or percentage of oversizing (10%)? Trust your IR and let him do what he wants? Go to a different IR? These are options.

Anyone out there who heard that 'pop' sound that had a good outcome? Or a not-good outcome?
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Postby jamit » Sun Apr 24, 2011 1:21 pm

Look at the Newport Beach facebook site for PI patients they are all getting the o-ring popped and lots are reporting improvements. Doc Sclafany seems to think it is not a good idea and PI seems to indicate that not popping it is the biggest reason for all the restenosis along with undertreatment and use of inappropriate stents.
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Re: I will have my Valves Crushed, anyone ever have this ?

Postby DrCumming » Mon Apr 25, 2011 8:22 am

drsclafani wrote:
LymeNurse wrote:Had extensive talk with my IR. As I reported earlier, I was first MRV patient at imaging center and they screwed up on my Azygos pics., so we won't see those problems until 5/2, procedure day.

However, when I asked about Cutting Valves vs. Ballooning, my IR says he can "Crush" them and he can actually hear the "Cracking" sound during the procedure.

In this way, he can use a larger balloon and achieves the same results one would get with a Cutting Balloon. Has anyone ever heard of this ?

Thanks in advance,

Gary


i believe that sound ma be tearing of the annulus of the valve. I prefer not to hear it, as i think from m experience that it may be associated with increased risk of thrombosis.
crushing the valve sounds implausible to me. the valve is fused into a cylinder with a narrow outflow. it is more likely that a llarge balloon may stretch it open.


i completely agree.
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Postby DrCumming » Mon Apr 25, 2011 8:36 am

jamit wrote:Look at the Newport Beach facebook site for PI patients they are all getting the o-ring popped and lots are reporting improvements. Doc Sclafany seems to think it is not a good idea and PI seems to indicate that not popping it is the biggest reason for all the restenosis along with undertreatment and use of inappropriate stents.


both sal and i have seen severe restenosis after aggressive ballooning. we are moving away from this. sal has pioneered the use of ivus and has sold me on it completely.

my understanding is that PI does no follow up US. we follow every patient that is local with US. i have had 3 of my patient development severe restenosis within 1 month of the procedure and i have seen 3 other patients treated elsewhere with the same result. this has to be a result of the ballooning causing too much injury.
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Postby LymeNurse » Mon Apr 25, 2011 8:51 am

DrCumming,

So what is the answer. When you use IVUS, then what ? How would you recommend the procedure be performed ?

I want this done the best it can be done.

Thank you from my heart for your input.

Best,

Gary
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Postby DrCumming » Mon Apr 25, 2011 8:57 am

LymeNurse wrote:DrCumming,

So what is the answer. When you use IVUS, then what ? How would you recommend the procedure be performed ?

I want this done the best it can be done.

Thank you from my heart for your input.

Best,

Gary


Thanks to Dr. Scalafini, I am an IVUS convert.

IVUS offers several advantages.

First, it is very useful for identifying the location and the cause of the stenosis. Especially valuable for finding azygous vein stenosis.

Second, it allows accurate balloon sizing.

Third, it allows evaluating the success of the venoplasty.

The main downside is time. It now takes 90 or more minutes to do the procedure. Not good if you are running a ccsvi factory.
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Postby bretzke » Mon Apr 25, 2011 11:22 am

DrCumming wrote:
LymeNurse wrote:DrCumming,

So what is the answer. When you use IVUS, then what ? How would you recommend the procedure be performed ?

I want this done the best it can be done.

Thank you from my heart for your input.

Best,

Gary


Thanks to Dr. Scalafini, I am an IVUS convert.

IVUS offers several advantages.

First, it is very useful for identifying the location and the cause of the stenosis. Especially valuable for finding azygous vein stenosis.

Second, it allows accurate balloon sizing.

Third, it allows evaluating the success of the venoplasty.

The main downside is time. It now takes 90 or more minutes to do the procedure. Not good if you are running a ccsvi factory.


Taking potshots at other IR's is not a good strategy for advancing the science. CCSVI factory?

Let's work together to solve the riddle.

Brian
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Postby Cece » Mon Apr 25, 2011 12:25 pm

The most patients I've heard of being done by an IR in one day is six. That seems like a lot to me.

The shortest procedure I've heard of was less than 30 minutes. The longest, around four hours.
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Postby MegansMom » Tue Apr 26, 2011 9:28 am

Seems to me that IVUS is the way of eliminating hunches or guesses.

If the procedure is done with IVUS and it takes longer then it will cost more.
Period! And it certainly will be worth it.

If it's the answer to preventing "under"treatment and restenosis it's a good thing!

Maybe DrCumming or Dr Sclafani would be kind enough to start an educational thread about the advantages of IVUS !
Thanks!
Cat (Catherine Somerville on FB)
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby DrCumming » Tue Apr 26, 2011 11:26 am

a seperate ivus thread would be nice....

here is a single image to show a good example.

yellow and purple are the normal vein.

cyan shows the maximal opening diameter of the valves.

Image
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