DrSclafani answers some questions

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

Re: Lumbar veins

Postby drsclafani » Sun Jul 11, 2010 11:13 pm

LauraV wrote:Rokkit, I think the heat is getting to me. I can't remember where I read this, but it was something about a doctor or researcher looking into stenosis of the lumbar veins and the possible implications for the SPMS and PPMS.


it was me. and i was discussing dr zamboni's procedure that included injectionof the left ascending lumbar vein
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Postby drsclafani » Sun Jul 11, 2010 11:23 pm

mooshell wrote:Hi Dr. Sclafani,
Have there been many problems found with the external jugulars? I think mine is very small on the right. I know it is hard to tell by one picture. It does seem to get a bit brighter on other images but still is hardly visible at all. I was told my MRV was normal.

Image


i am not sure it was n ormal, but i think you still need a catheter venogram
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Postby drsclafani » Sun Jul 11, 2010 11:29 pm

L wrote:Hello Dr Sclafani

I have another question. Quite a while ago, when I was 23 or so, I had a defibrillator implanted. I didn't want it but my family persuaded me. Anyhow, I got my first symptoms of MS, shortly after the operation. I have always suspected that one led to the other. I had it explanted when it was clear that it wasn't in fact necessary. Years later it became apparent that anaemia was leading to irregular heart rhythms, but anyway.

When I had it explanted they removed most of the lead but lost a stainless steel wire in me in the process. It was implanted via the subclavian vein. I've only just realised that this vein can be associated with CCSVI. I'm thinking ahead lots here, and I understand that a definite answer won't be possible with just this little information, but would you imagine if it turns out that my subclavian vein is occluded, this stainless steel wire lost in it will make my treatment more difficult/impossible?

I just had to ask.. I became more pessimistic as my MS progressed and now I'm imagining the (untreatable) worst.

Thanks so much.

if your subclavian vein is occluded, it might also involve your inominate vein. the junction of the IJV and the SCV form the inominate vein. Thus occlusion of the inominate vein may make it impossible to treat any IJV obstructions on that side
Moreover, someone told me a story about how they had radiation to the chest that resulted in stenosis of the subclavian vein. that in turn appears to have resulted in MS. could you be a second patient?
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Re: New name for the cutting balloon

Postby drsclafani » Sun Jul 11, 2010 11:33 pm

HappyPoet wrote:Hi Dr. Sclafani,

Someone mentioned it would be a good idea if a less scary name for the cutting balloon could be found, and I have a suggestion:

The shaping balloon catheter.

Your thoughts?

~HP


too ambiguous for us
it creases, scores and indents
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Postby drsclafani » Sun Jul 11, 2010 11:36 pm

Trish317 wrote:
drsclafani wrote:
Rompers wrote:Dr. Sclafani, may I inquire as to who may be on you invite list? Not by name but generally speaking. I am also curious to know if your invitations are being extended to other countries, and especially your neighbouring Canadian Neurologists/IRAs/VSs? Or is this a specific "think tank"?

And as Donnchadh suggested, I too would like to forward the symposium details if you will provide the "OK".

Please accept my thanks for all of your caring and efforts, as you are helping us all to keep "hope" alive and kicking!

Rhonda


look, this is a very short notice thing. I did not invite a tenth of those who might be interested.

For the next ten days, i am looking for more doctors who are intersted or thinking about this subject. please do use your advocacy to share the word. I actually injoy your empowerment


Hi Dr. S,

I've shared the information regarding your symposium with two vascular surgeons I've been corresponding with (one at Rhode Island Hospital and the other at the University of Iowa), and the nurse of a very prominent vascular surgeon (if you'd like names, I'll send them offline) but I wasn't sure if it was ok to do so after I read this on Facebook....

This event is not open to the public. The auditorium has limited seating and IR's in the NY tri-state area and select neurologists were invited by email directly by Dr. Sclafani, and there is room for more to attend. The subject matter is targeted to IR's and MS neurologists. Attendees must rsvp and be registered. The media is invited. Wheelchair Kamikaze will video tape the symposium for the CCSVI Alliance website. If there is room, patients will be invited.

She seemed to have "inside" information. So, I'm happy to know that it's alright to "share the word".

Thank you for everything you do, Dr. S. That can not be said often enough.


the university is legitimately concerned about a surge of interest that exceeds the occupancy. please tell those physicians who would like to attend that they must reserve space by emailing requests for reservations to ccsviSymposium@gmail.com
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Postby drsclafani » Sun Jul 11, 2010 11:38 pm

gothicrosie wrote:Dr. Sclafani,

My question relates to testing/scanning/diagnosing of CCSVI. I have seen the "best way" vary from MRV to transcranial color ultrasound to catheter Venogram to IVUS...

I have been told, and I have read, that the catheter venogram/venography is the "gold standard" of IRs and that is the best way, but now I have heard that the intravenous via catheter ultrasound is the best way and a catheter venogram can give a false negative...???

Is there a "best practices" yet? Do you have a recommendation as to what we should be looking for in terms of testing for diagnosis?

Your wisdom is most appreciated. Thank you!


the catheter venogram is the gold standard NOT the diamond or platinum standard, meaning things can be missed. IVUS and other tests can augment the findings of catheter venography
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Postby drsclafani » Sun Jul 11, 2010 11:40 pm

Donnchadh wrote:Dr. Scalfani:

Just how common in use is an ivus? It would seem to be a great way to examine a stenosis literally from the inside out. I suspect that my bilateral IJV stenosis were caused an by injury; if that is true, could an IR observe internal scar tissue with an ivus? Can a visual recording be made using an ivus?

Donnchadh


IVUS is rarely used. It is expensive. I found it immensely useful to better understand ccsvi anatomay and to detect abnormalities that cannot be picked up by catheter venography
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Re: New name for the cutting balloon

Postby drsclafani » Sun Jul 11, 2010 11:41 pm

fogdweller wrote:
HappyPoet wrote:Hi Dr. Sclafani,

Someone mentioned it would be a good idea if a less scary name for the cutting balloon could be found, and I have a suggestion:

The shaping balloon catheter.

~HP


Angioplasty companies could use good marketers. You thiink Cutting Ballon is bad. When antioplasty was just getting started, C.R. Bard (then U.S.C.I.) had a balloon for the coronary arteries that some brilliant person in marketing named "The Headhunter".


this urban legend is not accurate. Actually the catheter we use to get into the jugular veins is called the headhunter
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Postby drsclafani » Sun Jul 11, 2010 11:43 pm

CureIous wrote:
Donnchadh wrote:Dr. Scalfani:

Just how common in use is an ivus? It would seem to be a great way to examine a stenosis literally from the inside out. I suspect that my bilateral IJV stenosis were caused an by injury; if that is true, could an IR observe internal scar tissue with an ivus? Can a visual recording be made using an ivus?

Donnchadh


Just to interject, my IVUS in April printed out on your average small sonogram paper maybe 3x3 inches. He explained what I was looking at as I was laying there because I asked to see it, it's kinda like looking at a very early on sonogram of your child, not much to see there, for the untrained eye of course. What I wouldn't give to have a copy of that! All I did was nod my head and agree. "well of course" lol. Musta been the morphine talking... It did show (after it was pointed out to me with a ballpoint pen) the septum inside my vein before and after. Guess it wouldn't be too much of a stretch to think it can see other stuff too. Plus the annular vein was clearly visible. Trippiest thing I'd ever seen.

Sorry for butting in, I'm sure the good Dr. will have plenty to say...

Mark


i think i said it.....but why were you getting morphine. I give no sedation or analgesia for this procedure. nobody complains and patients leave in an hour
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Postby CureIous » Sun Jul 11, 2010 11:54 pm

I was getting angioplasty, the IVUS came in after the veno showed some collateral filling. This was 9 months post stenting and related to some slight pressure gradients upstream that piqued his curiousity so he brought in the IVUS and found the septum down near the collarbone. Fixed my venous hum which was the goal. Sweet delectable silence. Ahh.
The stent on that side worked so well the blood was like a freight train coming through the bend. The septum creating a throttling and pressure gradient upstream in a narrower part pushed by C1. Once the septum was angio'd out of the way the flow was more laminar and the pressure gradient obliterated around the C1 level. I think I butchered that explanation to death. Long day....
Thanks for staying up late with us doc...
Mark.

p.s. I think there was morphine but it was nothing like when I had the stents put in pain-wise. Wasn't loopy at all...
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Zeureka » Mon Jul 12, 2010 4:23 am

drsclafani wrote:
Donnchadh wrote:Dr. Scalfani:

Just how common in use is an ivus? It would seem to be a great way to examine a stenosis literally from the inside out. I suspect that my bilateral IJV stenosis were caused an by injury; if that is true, could an IR observe internal scar tissue with an ivus? Can a visual recording be made using an ivus?

Donnchadh


IVUS is rarely used. It is expensive. I found it immensely useful to better understand ccsvi anatomay and to detect abnormalities that cannot be picked up by catheter venography
Dr Sclafani, may I ask in which sense IVUS is expensive? I guess expensive to invest in the IVUS equipment.

But once one bought the equipment, are there then high maintenance costs or costs involved to use it in each procedure? I am just asking as heard that some docs only use it in "special cases" since expensive. Do not understand however once one has equipment what holds back to then use in each procedure if more efficient?
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Postby drsclafani » Mon Jul 12, 2010 5:21 am

Zeureka wrote:
drsclafani wrote:
Donnchadh wrote:Dr. Scalfani:

Just how common in use is an ivus? It would seem to be a great way to examine a stenosis literally from the inside out. I suspect that my bilateral IJV stenosis were caused an by injury; if that is true, could an IR observe internal scar tissue with an ivus? Can a visual recording be made using an ivus?

Donnchadh


IVUS is rarely used. It is expensive. I found it immensely useful to better understand ccsvi anatomay and to detect abnormalities that cannot be picked up by catheter venography
Dr Sclafani, may I ask in which sense IVUS is expensive? I guess expensive to invest in the IVUS equipment.

But once one bought the equipment, are there then high maintenance costs or costs involved to use it in each procedure? I am just asking as heard that some docs only use it in "special cases" since expensive. Do not understand however once one has equipment what holds back to then use in each procedure if more efficient?


The IVUS unit, that attaches to the IVUS catheter is expensive. Its applications are limited, thus the per procedure "amortization" of the unit is expensive. Then at each procedure, one must put in an IVUS catheter which itself is very expensive.
Also IVUS is time consuming, and this adds another expense to the procedure, for example in doctor, nurse and technologist time and in limiting the number of cases that can be done in a day.
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Postby pklittle » Mon Jul 12, 2010 5:58 am

drsclafani wrote:
IVUS is rarely used. It is expensive. I found it immensely useful to better understand ccsvi anatomay and to detect abnormalities that cannot be picked up by catheter venography

The IVUS unit, that attaches to the IVUS catheter is expensive. Its applications are limited, thus the per procedure "amortization" of the unit is expensive. Then at each procedure, one must put in an IVUS catheter which itself is very expensive.
Also IVUS is time consuming, and this adds another expense to the procedure, for example in doctor, nurse and technologist time and in limiting the number of cases that can be done in a day.


Does the benefit outweigh the cost though?
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Postby L » Mon Jul 12, 2010 6:11 am

drsclafani wrote:Thus occlusion of the inominate vein may make it impossible to treat any IJV obstructions on that side
Moreover, someone told me a story about how they had radiation to the chest that resulted in stenosis of the subclavian vein. that in turn appears to have resulted in MS. could you be a second patient?


I have had a couple of chest X Rays but no CT scan.

Is it possible to treat an occluded inominate vein?

Thanks Dr Sclafani.
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Postby CureIous » Mon Jul 12, 2010 9:08 am

Just looked at my bill, and granted this isn't what my insurance paid just what the hospital charged. I see one line is "HC Intrav. US non-cor" at 2,772, then "HC Intravasc US non-CO" at 3,245. That's of course not including the charges for the catheters etc that seems to be just the IVUS itself being used. Of course that's university hospital prices, but still kinda hefty. I guess the best part is my insurance paid for it, and they are stingy so that's a good sign right? Total bill was 66k, insurance paid 21k and they adjusted the rest. That's blue cross blue shield ppo fyi, and just so others know that there *is* a possibility of insurance covering this.

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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