DrSclafani answers some questions

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

ccsvi

Postby blossom » Tue Apr 05, 2011 5:51 pm

happy poet, now that's the kind of news we all love to hear. so happy for you!!

thank you "dr. sclafani"
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Postby drsclafani » Tue Apr 05, 2011 8:13 pm

Liberation wrote:
i am sorry, Liberation, in truth, the images that you show are so bad that one cannot really make accurate comments about them. There do appear to be segmental narrowings (?hypoplasia) but the area of the valve is not visible at all. Also you state that a 6x20 balloon was used. seems rather short, possibly rather thin. Might i guess that your IR was a cardiologist? just a guess and with no bias intended.


Almost, the head of the CCSVI program is a vascular surgeon. :) I have a great respect for him, just like I do for you. :) I just heard from him that they try to do dilation four times a year to avoid stenoses.

That is true that the upper parts are not indicated in the images. Could it be that they did not see those parts?

I think we should always try to see the ENTIRE vein, and, ideally, see the connection between the dural sinuses in the head and the jugular veins in the neck. Just last week i had a case of segmental hypoplasia which did not show reflux into the head. I sent the patient for a BRAIN MRV (not MRV of neck) and it showed clearly a number of dural sinus stenoses.


It seems to me me that they not treated the upper part of the IJV in the past as I just heard that they start dilating IJW all the way from now. Was it thought more dangerous treating the upper part? I guess there must have been a reason why they did not do it in the past.

If I understand correctly mostly valves are the cause of stenosis.
I try to get the MRV images that were prepared half a year before my operation those should be much better quaility.


ok. but perhaps your scan of your venogram is the problem. do you have the images? or do you have paper prints?
MRV just isnt as good as venography, but perhaps that will help us all understand what you are trying to show us.


Yes, I only got the print of it and the bad quality is due to my scanning. I have the MRV of the brain and the cervical. I can send you an access to a link where you can look at the full CD. Your help is greatly appreciated :)


i cannot imagine routinely doing four dilatations a year to prevent restenosis. i have never heard any evidence that this is a good idea. Be careful.
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Postby drsclafani » Tue Apr 05, 2011 8:16 pm

Cece wrote:
drsclafani wrote:cece
just because you think that the narrowing is scar tissue, doesnt mean it is. In fact, i do not think it is when the narrowing is in the vicinity of the valves.
i was just making the statement that most IRs believe it is scar until proven otherwise and thus are over dilating.

I think it is not and have backed off on sizeing balloons to conform to the diameter of the vein to start.

I see what you were saying, you were talking about the original stenoses.

In a different scenario, we are hearing reports of patients who have scarring as a result of the procedure. Depending on what is exactly going on with those patients, as long as the vein does not close completely, it can still be ballooned again? I had thought scarring sounded so severe, this would not be possible.
sent the patient for a BRAIN MRV (not MRV of neck) and it showed clearly a number of dural sinus stenoses.

What next, for such a patient? Will the dural sinus stenoses be treated and by whom?


we will be consulting a neurointerventionalist who has considerable experience with dural sinus stenosis that causes hydrocephalus. He is a disbeliever in ccsvi. he will remain anonymous for obvious reasons.
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Postby drsclafani » Tue Apr 05, 2011 8:17 pm

HappyPoet wrote:Hi Dr. Sclafani,

A very happy update for you! :D

My follow-up US showed strong flow throughout my left femoral vein which had been occluded by clot [from 1st procedure, different doctor].

Your post-procedure protocol of using Arixtra dissolved the very scary clot (DVT) and saved my leg and my life for which my family and I can never thank you enough. You will be forever in our hearts.

Thank you for everything, Superstar.


Superpatient....how is the rest of you?
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Postby HappyPoet » Wed Apr 06, 2011 1:15 am

Superstar,

I'm very happy to report that I'm doing very well. :D

The follow-up US showed strong flow throughout my IJVs (90% and 99% blocked!). Your great skill and vast experience (30 yrs in Brooklyn!), and anticoagulation therapy at work.

I'm still enjoying much brighter vision which gives me much hope that progression of my bilateral ON will be slowed or stopped. Also, I'm still enjoying having my balance restored -- no more bumps 'n bruises!

My daughter sends a big hello and reminds me I forgot to say that our family made the best decision of our lives in going to you, Superstar. :D :D
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Postby WeWillBeatMS » Wed Apr 06, 2011 6:27 am

Dr. Sclafani,

What vein or veins are normally responsible for draining the ears?

I suddenly lost my hearing in my right ear in 2003, a year and half before the diagnoses of MS. I am left with dizzyness and tinitus from my right ear. Multiple ENTs offer no help or hope. In the past year or so I notice my left (good) ear feeling plugged at times, especially at night while trying to sleep. I'm hoping that the Liberation procedure will help me in that area.

Thank you,

WeWillBeatMS
<div>WeWillBeatMS<br /><br /><br />Zamboni for President!</div>
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Postby Liberation » Wed Apr 06, 2011 2:20 pm

drsclafani wrote: I think we should always try to see the ENTIRE vein, and, ideally, see the connection between the dural sinuses in the head and the jugular veins in the neck. Just last week i had a case of segmental hypoplasia which did not show reflux into the head. I sent the patient for a BRAIN MRV (not MRV of neck) and it showed clearly a number of dural sinus stenoses.


I inferred from what they said that they did not treat the upper part of the IJV. I was just told that from now on they are treatining the full IJV. What could be the reason why they generally did not treat the upper part. Could it be more dangerous to do so? Are everyone else has treated also the upper part of IJVs?

i cannot imagine routinely doing four dilatations a year to prevent restenosis. i have never heard any evidence that this is a good idea. Be careful.


I guess what he meant is that so far they waited circa half a year with the follow-ups and with repeating the procedure. With four times a year they must have meant that if restenoses occurs then they would repeat the procedure in three months. So, if it is neccessary four times a year. Would that make sense?

perhaps you are misunderstanding dr cumming
I agree that one should not use extra large balloons in the upper IJV because it will be a mis-sizing and ballooning may cause more harm that good WITH A BALLOON THAT IS TOO LARGE. Doesnt mean that using a properly sized balloon cannot improve flow in the vein.


Is my understanding is correct that with your technique you still benefit from using large balloons but without (at least less) the risk of using large ballons?
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Postby Cece » Wed Apr 06, 2011 3:46 pm

Liberation wrote:
perhaps you are misunderstanding dr cumming
I agree that one should not use extra large balloons in the upper IJV because it will be a mis-sizing and ballooning may cause more harm that good WITH A BALLOON THAT IS TOO LARGE. Doesnt mean that using a properly sized balloon cannot improve flow in the vein.

Is my understanding is correct that with your technique you still benefit from using large balloons but without (at least less) the risk of using large ballons?

Liberation, I am an example, he used an 18 mm balloon on my right jugular which would be considered one of the extra large balloons except that he measured with ivus and it was rightly sized for that vein.
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Postby pklittle » Wed Apr 06, 2011 3:50 pm

Cece wrote:
Liberation wrote:
perhaps you are misunderstanding dr cumming
I agree that one should not use extra large balloons in the upper IJV because it will be a mis-sizing and ballooning may cause more harm that good WITH A BALLOON THAT IS TOO LARGE. Doesnt mean that using a properly sized balloon cannot improve flow in the vein.

Is my understanding is correct that with your technique you still benefit from using large balloons but without (at least less) the risk of using large ballons?

Liberation, I am an example, he used an 18 mm balloon on my right jugular which would be considered one of the extra large balloons except that he measured with ivus and it was rightly sized for that vein.


I am so confused.. is the current theory that ccsvi is a valve problem or not?
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Postby newlywed4ever » Wed Apr 06, 2011 6:15 pm

Dr Sclafani,
I sent an email to you yesterday but your (pending) answer may also be of interest here. You treated my right IJV in the region of the confluence(left IJV was occluded/thrombosed since first angio which was treated by another dr). I am now experiencing swelling and tenderness on the right side of my neck. Normally, I would just think I have swollen glands but I'm a bit more concerned since I already have reduced blood flow due to LIJV. How concerned should I be? I have my 3 mo. f/u with Dr Makris 5/3/11... thanks!
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Postby Cece » Wed Apr 06, 2011 8:21 pm

drsclafani wrote:we will be consulting a neurointerventionalist who has considerable experience with dural sinus stenosis that causes hydrocephalus. He is a disbeliever in ccsvi. he will remain anonymous for obvious reasons.

Would love to hear his take on it, alas, if only he were an open book too.

I am sorry to ask and no pressure but are you less inclined now to put up images and teaching examples as you have before, or is it just that you have been so busy? I enjoyed them. :)
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Postby drsclafani » Wed Apr 06, 2011 9:37 pm

Cece wrote:
drsclafani wrote:now back to treatments full time yeah!

double yeah :)

drsclafani wrote:If you think that the narrowing is due to scar tissue you will try to overdilate intentionally about20% to maximize the stretch of the scar.

Didn't know you could stretch scar tissue in these veins. That is encouraging as well.


you actually stretch it often to tear it. problem is that the scar reforms. So scar formation is to be avoided as much as possible. however its better than nohing at all and sometimes it remodels and lasts for a long time.
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Postby drsclafani » Wed Apr 06, 2011 10:16 pm

WeWillBeatMS wrote:Dr. Sclafani,

What vein or veins are normally responsible for draining the ears?

I suddenly lost my hearing in my right ear in 2003, a year and half before the diagnoses of MS. I am left with dizzyness and tinitus from my right ear. Multiple ENTs offer no help or hope. In the past year or so I notice my left (good) ear feeling plugged at times, especially at night while trying to sleep. I'm hoping that the Liberation procedure will help me in that area.

Thank you,

WeWillBeatMS


hearing loss is complicated. damage to any of the structures involved can result in deafness.
the sound is funneled into the ear, goes through the canal where it vibrates the tympanic membrane. the vibrations of the tympanic membrane are amplified by the ossicles of the middle ear to the oval window. This vibration stimulates the Hair cells which conduct current into the auditory nerve. This is conducted back taward the brain via the brain stem into the thalamus and finally ending temporal cortex of the brain..
So MS can cause deafness by demyelinization of the autitory nerve or anything in the pathway to the cerebral cortex
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Postby drsclafani » Wed Apr 06, 2011 10:19 pm

pklittle wrote:
Cece wrote:
Liberation wrote:
perhaps you are misunderstanding dr cumming
I agree that one should not use extra large balloons in the upper IJV because it will be a mis-sizing and ballooning may cause more harm that good WITH A BALLOON THAT IS TOO LARGE. Doesnt mean that using a properly sized balloon cannot improve flow in the vein.

Is my understanding is correct that with your technique you still benefit from using large balloons but without (at least less) the risk of using large ballons?

Liberation, I am an example, he used an 18 mm balloon on my right jugular which would be considered one of the extra large balloons except that he measured with ivus and it was rightly sized for that vein.


I am so confused.. is the current theory that ccsvi is a valve problem or not?


i am going to have to put some ivus movies on you tube for you to understand this. Yes, the valvular area is most commonly involved. It appears by ivus to be inability of the valves to open either by fusion or adhesion of the valve leaflets or developmental anomaly.
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Postby drsclafani » Wed Apr 06, 2011 10:20 pm

newlywed4ever wrote:Dr Sclafani,
I sent an email to you yesterday but your (pending) answer may also be of interest here. You treated my right IJV in the region of the confluence(left IJV was occluded/thrombosed since first angio which was treated by another dr). I am now experiencing swelling and tenderness on the right side of my neck. Normally, I would just think I have swollen glands but I'm a bit more concerned since I already have reduced blood flow due to LIJV. How concerned should I be? I have my 3 mo. f/u with Dr Makris 5/3/11... thanks!


get a simple compression ultrasound to look for blood clot now.
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