DrSclafani answers some questions

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Re: DrSclafani answers some questions

Post by drsclafani » 6 years ago

EJC wrote:Dr S have you seen any (many) patients treated by Donal Reid in Scotland for a second procedure?

Emma had treatment there in Dec 2010 and was one of the early patients, pre IVUS. Donald openly expalined at the time he errd on the side of caution as it was early days. She responded very well to having her valves opened (ballooned) in both ijv's along with her azygos balooned, before the changes regressed over a period of months.

There's always a case for re treatment, but before that's even considered, if you've seen any of his patients, had you noticed a particular pattern emerging?
i havent noticed a pattern as there have not been many patients

i agree that it was better to err on side of safety. up to a point. One must eventually try to improve on results that have been reported.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

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Re: DrSclafani answers some questions

Post by drsclafani » 6 years ago

Cece wrote:
Robnl wrote:Doc,

Has the undertreatment also something to do with only checking the 'default' veins (azygous/jugs) and not looking at other veins??
In 2010 i was treated in Poland: azy/jugs (no ivus)
In 2011 belgium: azy/jugs . (with ivus)

I improved definitely; but got my doubts when people dont improve if only jugs and azygous are checked. (got the feeling most of the treating docs still look only at the jugs/azy, but maybe i'm wrong)

Would that be a good subject for a coming conference? 'The veins that are related to ccsvi' :mrgreen:
Underdiagnosis might be a missed renal vein stenosis due to not checking the renal vein.
Undertreatment might be ballooning a renal vein compression, rather than stenting it.
Are you concerned about your renal vein?

And good question about what might be a good subject for coming conferences. What is likely to be discussed at the Washington D.C. symposium? Starting in 2010, the symposium has been cutting-edge. So what is the current cutting edge? Will Dr. Beggs be back? Will there be superIVUS images to share, or will that be later in the year?
the timing of the conference has been pushed back to the fall. It is a bit up in the air right now.
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Patient contact: ccsviliberation@gmail.com

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Re: DrSclafani answers some questions

Post by Robnl » 6 years ago

Dr Sclafani wrote
Underdiagnosis might be a missed renal vein stenosis due to not checking the renal vein.
Undertreatment might be ballooning a renal vein compression, rather than stenting it.
Are you concerned about your renal vein?
Hmm, dont know..i'm not a doctor :mrgreen:

But i got frequently a spasm in the lower back and stiffness, not always. The feeling in the legs is 'connected' to that (back okay, less stifness in the legs)
Because 'only' my jugs and azygous are checked, because i partly improved (partly but good, from 2x4 hours work per week to 40+, mentally much better, less fatique) i'do have the impression that there are still some problems.

Weird thing is that after Poland (March 2010) walking got better for exactly 1 month; from 4 meters like a robot with bad balance to 2 x 8 meters pretty normal with turning and a 370 degree turn in 4 steps (was 8 steps with bad balance) Then 'bang'..over and out....could not walk without help anymore.

I'm thinking about coming to New York H2 2013, but that's also up in the air :wink:

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Re: DrSclafani answers some questions

Post by EJC » 6 years ago

Would a problem with the renal vein produce any specific symptoms that pointed to the being an issue?

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Re: DrSclafani answers some questions

Post by drsclafani » 6 years ago

Robnl wrote:Dr Sclafani wrote
Underdiagnosis might be a missed renal vein stenosis due to not checking the renal vein.
Undertreatment might be ballooning a renal vein compression, rather than stenting it.
Are you concerned about your renal vein?
Hmm, dont know..i'm not a doctor :mrgreen:

But i got frequently a spasm in the lower back and stiffness, not always. The feeling in the legs is 'connected' to that (back okay, less stifness in the legs)
Because 'only' my jugs and azygous are checked, because i partly improved (partly but good, from 2x4 hours work per week to 40+, mentally much better, less fatique) i'do have the impression that there are still some problems.

Weird thing is that after Poland (March 2010) walking got better for exactly 1 month; from 4 meters like a robot with bad balance to 2 x 8 meters pretty normal with turning and a 370 degree turn in 4 steps (was 8 steps with bad balance) Then 'bang'..over and out....could not walk without help anymore.

I'm thinking about coming to New York H2 2013, but that's also up in the air :wink:
Robnl, i am happy to care for anyone. But this is not the best way to discuss personal patient problems and needs.

I did not write what you have quoted as from me. I believe it was Cece.

undertreatment is most commonly the use of small balloons that stretch but do not fully open the valves, stenosis.
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Re: DrSclafani answers some questions

Post by drsclafani » 6 years ago

EJC wrote:Would a problem with the renal vein produce any specific symptoms that pointed to the being an issue?
There is nothing specific regarding neurological symptoms associated with nutcracker syndrome. Children with nutcracker syndrome often have chronic fatigue.

Other symptoms specific to nutcracker syndrome include hematuria, protein in the urine, back pain, fatigue, hypertension, varicocele in men, ovarian pain, especially during mestruation and other signs of pelvic congestion in women.

With regard to affect of stenting neurological symptoms, it is very difficult to parse out the effects of treatment of Nutcracker from treatment of the internal jugular and azygous veins. is the improvement related to IJV and AZV alone? or has reduction of collateral inflow from the obstructed renal vein by stenting, improving overall CCSVI venous congestion? Improvements in balance, fatigue, vision, cog fog and memory were seen in the two patients who had renal vein stenosis as the major treated vein.

hard to imagine, isnt it?
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Re: DrSclafani answers some questions

Post by EJC » 6 years ago

It is hard to imagine you're right.

Emma is currently undergoing treatment for jaw and spine misalingment, it's removed all sorts of pain that was attributed to her "MS" as well as reduce her fatigue levels, go figure!

Having watched her go through CCSVI treatment then this I can't help feel they are all linked now. Especially CSF flow and cerebral pressure.

I just have a feeling we've done things the wrong way around - get here frame straight first, then get the veins "rodded".

Could it be possible that something like nutcracker syndrome could be occuring in the neck caused by misaliglned vertebrae, even if only in certain positions?

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Re: DrSclafani answers some questions

Post by drsclafani » 6 years ago

Example of undertreatment and underdiagnosis

woman who had bilateral 9 mm balloon angioplasty of IJV and no treatment of the azygous vein based upon MRV in Europe with clinical improvements lasting a few months before relapses occured.
Major complaints were double vision, cog fog, fatigue, numbness and weakness


Right IJV:
my venography with IVUS

Image

valvular immobility, 80% stenosis, 12 mm angioplasty


left IJV :
My venography with IVUS

Image

valvular immobility, 82% stenosis, 16 mm angioplasty

Azygous vein:

Image

Venography unrevealingl. IVUS shows obvious immobile valve 14 mm angioplasty
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Re: DrSclafani answers some questions

Post by drsclafani » 6 years ago

EJC wrote:It is hard to imagine you're right.

Emma is currently undergoing treatment for jaw and spine misalingment, it's removed all sorts of pain that was attributed to her "MS" as well as reduce her fatigue levels, go figure!

Having watched her go through CCSVI treatment then this I can't help feel they are all linked now. Especially CSF flow and cerebral pressure.

I just have a feeling we've done things the wrong way around - get here frame straight first, then get the veins "rodded".

Could it be possible that something like nutcracker syndrome could be occuring in the neck caused by misaliglned vertebrae, even if only in certain positions?
personally, i do not think so. Mostly, one seens no compression of the veins, only valvular immobility
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Re: DrSclafani answers some questions

Post by EJC » 6 years ago

drsclafani wrote:Example of undertreatment and underdiagnosis

woman who had bilateral 9 mm balloon angioplasty of IJV and no treatment of the azygous vein based upon MRV in Europe with clinical improvements lasting a few months before relapses occured.
Major complaints were double vision, cog fog, fatigue, numbness and weakness
How did the second treatment fair?

Were there substantial in improvements in any of the major complaints?

It's certianly interesting to see how much more information IVUS provides. It looks like treating without this is akin to stumbling around in the dark.

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Re: DrSclafani answers some questions

Post by EJC » 6 years ago

drsclafani wrote:
EJC wrote:It is hard to imagine you're right.

Emma is currently undergoing treatment for jaw and spine misalingment, it's removed all sorts of pain that was attributed to her "MS" as well as reduce her fatigue levels, go figure!

Having watched her go through CCSVI treatment then this I can't help feel they are all linked now. Especially CSF flow and cerebral pressure.

I just have a feeling we've done things the wrong way around - get here frame straight first, then get the veins "rodded".

Could it be possible that something like nutcracker syndrome could be occuring in the neck caused by misaliglned vertebrae, even if only in certain positions?
personally, i do not think so. Mostly, one seens no compression of the veins, only valvular immobility
Well, it was a thought.

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Re: DrSclafani answers some questions

Post by Cece » 6 years ago

drsclafani wrote:With regard to affect of stenting neurological symptoms, it is very difficult to parse out the effects of treatment of Nutcracker from treatment of the internal jugular and azygous veins. is the improvement related to IJV and AZV alone? or has reduction of collateral inflow from the obstructed renal vein by stenting, improving overall CCSVI venous congestion? Improvements in balance, fatigue, vision, cog fog and memory were seen in the two patients who had renal vein stenosis as the major treated vein.
Two patients! I only remember one being discussed here.
That would make a great publication.

So of these most recent images, the jugulars were undertreated, and the azygous was underdiagnosed (and therefore untreated).
In the fourth image on the 'azygous vein' series, is that the renal vein? Is it abnormal?

The quote posted by Robnl is indeed misattributed and was indeed me. Sorry for any confusion!

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Re: DrSclafani answers some questions

Post by Robnl » 6 years ago

Dr Sclafani Wrote
Robnl, i am happy to care for anyone. But this is not the best way to discuss personal patient problems and needs.

I did not write what you have quoted as from me. I believe it was Cece.

undertreatment is most commonly the use of small balloons that stretch but do not fully open the valves, stenosis.
Yeah, sorry about misquoting :oops:

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Re: DrSclafani answers some questions

Post by Robnl » 6 years ago

Cece wrote:
So of these most recent images, the jugulars were undertreated, and the azygous was underdiagnosed (and therefore untreated).
In the fourth image on the 'azygous vein' series, is that the renal vein? Is it abnormal?
The 5th image on the 'azygous vein' series, the most right one, which vein is that?? Looks like a ladder to me :lol:
(don't recognize the azygous in that image)

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Re: DrSclafani answers some questions

Post by Robnl » 6 years ago

Hi Doc,

spinal veins
Question:

Image
Are these also possible problematic veins and can they be ballooned??

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