DrSclafani answers some questions

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

Postby johnny21 » Sun Jan 09, 2011 8:11 am

Hello Dr Sclafani,

I had one relapse 3 years ago (one lesion in the spinal cord, one in brain; no new relapses so far). The lesion affected the strenght in my legs. I got cortisone but my legs still feel a bit weak. Since that i searched for possibilities to stop possible progression.
CCSVI seems to be this possibility.
I have a question that you might be able to answer to,
how big is the chance that the lesion in the spine can heal, that the damages in my legs disappear or improve? in general, is it possible that damages in the spine heal after a treatment or the progression stops for sure?
i hope you can answer my questions, thank you very much!

johnny
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vertebral veins?

Postby Thekla » Mon Jan 10, 2011 7:13 pm

I have been wondering about the vertebral veins. I had heard from the 'Upright Doctor' who claims that upper cervical trauma like whiplash type soft tissue injuries could affect the vertebral veins. Have you looked at any vertebral vein problems? The doctors in Costa Rica make a point of checking jugular, azygos and vertebral as well as checking for May Thurner in their description on the website.

Is this a possible answer for those of us without easy to see massively blocked jugulars? It is frustrating to not have an easy to identify problem, especially when we are paying to play.
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Postby Cece » Mon Jan 10, 2011 9:18 pm

drsclafani wrote:to tell you the truth, i dont know how anyone can do this procedure in an hour as i have heard related.

Skill, familiarity with the procedure, speed...and/or willingness to give up, accept less than 100%...and/or lack of skill so not even knowing what is being missed.... :(

As much as I enjoy the discovery process, I wish we were through it and every patient was receiving the best standardized care.
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hello......

Postby leetz » Mon Jan 10, 2011 9:46 pm

my procedure took about 45minutes??????????
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Dr.

Postby leetz » Mon Jan 10, 2011 9:54 pm

Hello Doctor...I was wondering if I should get another venogram thru the left femoral vein...I have had good results since the procedure on the 20th of Dec. 2010(ballooning of RIJV and LIJV)....but the dis-coloration in left foot and leg are still there and I was thinking May Thurner? Was wondering if I should get the iliac checked???? This might help other's as well getting the procedure (to ask the IR to go in through the left femoral vein) to eliminate problem(s) with iiliac vein????
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby javabean » Mon Jan 10, 2011 10:47 pm

Hello Dr Sclafani,
I had my procedure one month ago in Albany. I didn't feel any improvements right awaybut after about three days I had some great stuff happen. Twice I walked 25 minutes, another day I walke 15 minutes while holding my baby, and then around one mile. Since then my improvements have disappeared and I feel even a little worse -- maybe a post pregnancy flare? (It's only been two months). I know placebo can be one answer as to why I had such good results, but I think know my body well enough to say it was real. Do you think I could have restenosis after less than two weeks? I plan to have an ultrasound in a month, so I hope to get some clarity, but wanted your opinion on restenosis.
BTW, both jugulars were almost completely closed and my azygous needed treatment as well.
Thank you and sorry for the long-winded message.
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Postby pairOdime » Tue Jan 11, 2011 6:35 am

Dr. Sclafani,

What is the training process for your AAC colleagues concerning CCSVI? Does the group have meetings to share findings and discuss treatment techniques? Do some observe procedures before flying solo?

Anything you can share is greatly appreciated.
Thanks Dr. S....you are most definitely an angiographer (venographer too:).
It's a paradigm shift
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Postby Cece » Tue Jan 11, 2011 6:59 am

Still waiting to hear about last Friday's incredible amazing findings and there's been procedures since then! This is what it was all about, the long wait and disruption of career and retirement. Hope you are enjoying yourself. :)

ISET is coming up quickly too. Can't wait to hear what comes out of that, when all our docs get together again.
leetz wrote:my procedure took about 45minutes??????????

The use of IVUS adds some time onto the procedure too....
Last edited by Cece on Tue Jan 11, 2011 3:26 pm, edited 1 time in total.
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Postby Robnl » Tue Jan 11, 2011 7:50 am

Yep ISET and a meeting at Euromedic in March! And new publication(s) from Zamboni, results of a ccsvi trial in Holland (March), Buffalo....

Lot's of things to happen :D

I'm also eager to hear from the doc, his experience with longer time needed for treatment is certainly an eyeopener (are people undertreated with just 1 hour?? )

Rob[/i]
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Postby CD » Wed Jan 12, 2011 1:23 am

My first CCSVI procedure took 3 hours. Then, normally after that, you lay flat for two and sit up for 1 hour and eat something.

I had a lot of work done. Left jugular had 4 different problems, 1 stent, then he did the right jugular two problems, then the Azygos three problems. They then check all three areas again before ending the procedure.

Went back to do the LJV again. The left Jugular now has 3 Protégé stents.
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Postby drsclafani » Thu Jan 13, 2011 12:17 am

EJC wrote:
drsclafani wrote:to tell you the truth, i dont know how anyone can do this procedure in an hour as i have heard related. Today, i am breezing along at 1.5 hrs with only an azygos to do, when challenges came up that result in a 3 hour procedure.



My partners actual procedure took around 90 minutes, however there was 30-40 minutes of preparation followed by a 90 minute procedure then 60 minutes of recovery.

She had both jugulars balooned (malformed valves opened) and the azygos (at the junction of the superior vena cava) and so far so good. you can see here results int he following thread if it's of interest to you:-

Anyhow, in Edinburgh they seem to be finding a very high level of (what they consider congenital) valve malformation, so my (non medical) mind has come up with the following thought:-

Many people seem to be putting CCSVI down to stenosis as the problem - but what if stenosis is actually another symptom and the problem is valve malformation or other physical obstructions which then lead to stenosis?Could it be that some of the centres are currently treating a symptom (stenosis) rather than the casue (valve problems or obstructions) which then leads to re stenosis?

actually a stenosis is a narrowing that is fixed in some way. A narrowed valve opening IS a stenosis of a particular type. So is a hypoplasia.
The ccsvi lesion is most commonly in the region of the valve. IVUS shows what appears to be a narrowed valve frequently. The problem seems to me to be a malformation of the valve scaffolding. It results in afunctional obstruction...These are extremely stiff and non-elastic so simple stretch is unlikely to result in permanent expansion with low pressure angioplasty. I think these are causing the early restenoses;.



Or have I put two and two together and got twenty two?


something like that
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Postby drsclafani » Thu Jan 13, 2011 12:24 am

johnny21 wrote:Hello Dr Sclafani,

I had one relapse 3 years ago (one lesion in the spinal cord, one in brain; no new relapses so far). The lesion affected the strenght in my legs. I got cortisone but my legs still feel a bit weak. Since that i searched for possibilities to stop possible progression.
CCSVI seems to be this possibility.
I have a question that you might be able to answer to,
how big is the chance that the lesion in the spine can heal, that the damages in my legs disappear or improve? in general, is it possible that damages in the spine heal after a treatment or the progression stops for sure?
i hope you can answer my questions, thank you very much!

johnny

\
i am sorry johnny
i cannot answer that question.
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Re: vertebral veins?

Postby drsclafani » Thu Jan 13, 2011 12:28 am

Thekla wrote:I have been wondering about the vertebral veins. I had heard from the 'Upright Doctor' who claims that upper cervical trauma like whiplash type soft tissue injuries could affect the vertebral veins. Have you looked at any vertebral vein problems? The doctors in Costa Rica make a point of checking jugular, azygos and vertebral as well as checking for May Thurner in their description on the website.

Is this a possible answer for those of us without easy to see massively blocked jugulars? It is frustrating to not have an easy to identify problem, especially when we are paying to play.


i am not sure that this is an answer as much as an explanation.

there are five major conduits that drain the spine and brain. the internal jugulars, the vertebral veins and the azygos vein.

When i do not find any problems in the IJV and the AZV, i look at the vertebrals for an explanation. unfortunately, a solution is not readily at hand.

i ask all my patients whether they had neck injury. So far it is pretty rare.
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Postby drsclafani » Thu Jan 13, 2011 12:34 am

Cece wrote:
drsclafani wrote:to tell you the truth, i dont know how anyone can do this procedure in an hour as i have heard related.

Skill, familiarity with the procedure, speed...and/or willingness to give up, accept less than 100%...and/or lack of skill so not even knowing what is being missed.... :(

As much as I enjoy the discovery process, I wish we were through it and every patient was receiving the best standardized care.


on the other hand, i can see ways to improve throughput

quicker nurse prep
quicker patient removal and clean up after case
optimize catheter, guidewire, sheath, balloon set ups
good assistant
cooperative patient
eliminate unnecessary steps
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Re: Dr.

Postby drsclafani » Thu Jan 13, 2011 12:39 am

leetz wrote:Hello Doctor...I was wondering if I should get another venogram thru the left femoral vein...I have had good results since the procedure on the 20th of Dec. 2010(ballooning of RIJV and LIJV)....but the dis-coloration in left foot and leg are still there and I was thinking May Thurner? Was wondering if I should get the iliac checked???? This might help other's as well getting the procedure (to ask the IR to go in through the left femoral vein) to eliminate problem(s) with iiliac vein????


purple feet is a finding of nerve damage in the autonomic nervous system. i do not think it is due to may thurner

i always go through the left femoral vein.

however, it aint easy until it is. In all my career i have done a couple of handfuls of left femoral punctures until now. Now I do it only from the left. Initially, i failed in a few, hit the artery in others, got frustrated

but now it is moving fairly quickly and accurately.

just another learning curve

i would not do another venogramfor may thurner. if your doppler continues to show ccsvi and you desire a chance at greater improvements, then you could consider it. i wonder however if a second procedure will work as well. and you have to determine whether you have gotten enough satisfaction to risk damaging what you have gotten back

the enemy of good is better
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