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drsclafani wrote:a non-congenital form of ccsvi is one that is acquired, not congenital. This could be an inflammatory stenoses that could happen after multiple catheteirzations of jugular veins needed for hemodialysis, or due to cancers that compress the veins.
These causes of ccsvi are not clearly connected to MS. Rather they result in other sequellae, too complicated to speak about now.
Other sequellae...I am curious...I would have guessed that acquired CCSVI would have resulted in m.s.-like symptoms.
(I am sorry, I will hold off for a bit, so that I don't flood the thread with comments on older posts like this...I had no internet for 14 days, it is good to be back!!)
Posted: Sun Apr 25, 2010 5:26 pm
by Nunzio
I am reposting this because thanks to "not really Johnson" now I know how to post picture directly.
Let me see if I am now an expert in Color doppler analysis.
Keep in mind that my right jugular vein is stenotic from lack of flow from the brain. The left Jugular vein in the picture, in sitting up position, is enlarged and the only correct flow is the sliver of blue seen in the picture above. Even more telling is the spectral analysis which shows waves above the zero line almost as much as below the line. No change in the supine position in size or flow.
My diagnose is: severe reflux in the only functional jugular vein.
Thanks Dr. Sclafani for your expert opinion and for giving us your valuable time.
Stenosis in or nearby foramen
Posted: Mon Apr 26, 2010 5:13 am
by William57
Hi dr Sclafani. Your work is highly appreciated. In the Netherlands your thread is spelled by several key users of our forums and duplicated on ours. So, please keep up the good work. People like you give us hope that openings for CCSVI will be found in the (near) future.
Anyway, I want to ask you if you can say something in general or in particular about the findings of my 'narrowing'.
The MRI pictures showed that I have narrowing in or very nearby the foramen (that is opening in the base of the skull where the IJ pass through; the explanation is not for you dr. Sclafani ).
The dr. who has examined the pictures said that it is unlikely that the foramen left is different from the right one (which IJ did not show any narrowing). So, the foramen is not pinching the IJ there, the narrowing is 'coincidental' in or nearby the foramen, is his belief. The MRi-scan did not show any bones.
I was wondering if this can be extra challenging because the length of the balloon for dilatation (the ones I have seen) are quite longer the actual narrowing actually is. So the balloon in this case will probably enter the brain (I presume I still have some). Or can this be avoided or can the balloon exactly positioned so that this will cause no harm, or ..?
What is your opinion or experience with this one?
Posted: Mon Apr 26, 2010 12:50 pm
by NZer1
Hi Dr, thanks for letting us know how your progressing. It's good to hear that things are happening, from where I sit there are times when things are at a stand still.
I watched this Youtube video and it set me spinning and I would very much appreciate your point of view.
The comment from the Vascular person was that jugulars can be removed and there is no problem for the patient? This seems to go against the flow of what we are being told about CCSVI!
Can you please clarify what is being said or not being said!!!!!
Thanks in advance.
Posted: Mon Apr 26, 2010 2:12 pm
by Cece
drsclafani wrote:i like the concept that iron gets into the brain via diapedesis of red blood cells across the venular walls that are damaged by vicarious luxuriant perfusion that occurs with ccsvi.
ok, in case anyone else like me had to google these words:
diapedesis: di·a·pe·de·sis/ (di″ah-pĕ-de´sis) the outward passage of blood cells through intact vessel walls
luxury perfusion: abnormally increased flow of blood to an area of the brain, leading to swelling.
vicarious: 2. occurring at an abnormal site.
venule: any of the small vessels that collect blood from the capillary plexuses and join to form veins.
Flashover81 wrote:Hi Dr. I have a 14 year old son recently diagnosed with ADEM. But the Neuro said his MRI might point to MS. He was on high dose steroids for 5 days. His presenting symptoms were balance problems and nystagmus on the left side. Since the steroids he has made a full recovery. We are waiting a month to do a 2nd MRI I was wondering if children have ever been diagnosed with CCSVI and if any have ever had the treatment? I am just doing as much research in case it turns out to be MS.
Thank you for your time....
i havent noticed it.
hey, salvatore24....got that reference for us?
The paper is called:
P. Zamboni, A. Cossu, L. Carpanese, G. Simonetti, G. Massarelli, A. Liboni: "The so called primary venous aneurysms", Phlebology 1990, 5:45-50
I haven't been able to track it down though.
Posted: Mon Apr 26, 2010 4:53 pm
by drsclafani
Cece wrote:
drsclafani wrote:i like the concept that iron gets into the brain via diapedesis of red blood cells across the venular walls that are damaged by vicarious luxuriant perfusion that occurs with ccsvi.
ok, in case anyone else like me had to google these words:
diapedesis: di·a·pe·de·sis/ (di″ah-pĕ-de´sis) the outward passage of blood cells through intact vessel walls
luxury perfusion: abnormally increased flow of blood to an area of the brain, leading to swelling.
vicarious: 2. occurring at an abnormal site.
venule: any of the small vessels that collect blood from the capillary plexuses and join to form veins.
i try so hard to keep this to the level that is understandable. Sometimes I get excited and assume that everyone is like me and can understand me.
cece, thanks for bringing this lesson back to me
Posted: Mon Apr 26, 2010 4:54 pm
by drsclafani
i try so hard to keep this to the level that is understandable. Sometimes I get excited and assume that everyone is like me and can understand me.
but common, admit it, vicarious luxuriant perfusion does have a ring to it, doesnt it?
Posted: Mon Apr 26, 2010 5:23 pm
by SofiaK
Why would blood thinners be needed because of treatment?
Did Dr. Zamboni ever use them? I don't recall this.
Posted: Mon Apr 26, 2010 6:00 pm
by Cece
SofiaK wrote:Why would blood thinners be needed because of treatment?
Did Dr. Zamboni ever use them? I don't recall this.
SofiaK, he addressed this awhile back...it's because of the risk of thrombosis or clotting after the angioplasty...one of DrS's first liberations came out perfect initially but then had a clotting complication...after that he added in the blood thinner regimen, it's been common to all the doctors doing this...hope to help and hope I've gotten my facts this straight!
Posted: Mon Apr 26, 2010 6:16 pm
by drsclafani
hannakat wrote:Dr. S., Thank you so much for hanging in there for/with us. I hope you get back to plumbing ASAP!!!!!!
Question: Are the other doctors in NY learning from your experiences? Is there a sharing of information between those who hope to start/continue testing/treating for CCSVI in the NY and surrounding states? It seems that you've already learned so much in the short time you had to do this and it would be so wonderful if the other NY docs starting this learned from your experience. More pointedly...do you-all chat on the phone comparing notes...getting advice?
Also, if you know of a doctor getting involved in this who is from the eastern OH or western PA area...could you pm me? I hope to stay 'local' but don't know where to start....
Thank you!
The IRs in new york city have monthly meetings. I have shared my experience about ccsvi with them twice. once when everyone looked like they were staring at a wall. the other when they asked interesting questions.
i have invited dr sinan to share his experiences in kuwait with us in july. we are thinking of putting on a minisymposiumwhile he is at downstate/kings county. that would be agood way to get some of the IRs and maybe even a neurologist or two more informed.
but actually when we talk on the phone we talk about the weather, the Yankees and the hot nurse on 4 West
Posted: Mon Apr 26, 2010 6:17 pm
by drsclafani
drsclafani wrote:
Johnnymac wrote:Hey Dr. The IR I took my wife to insists that he believes her jugular veins are normal and no different than his because of an absence of a fixed stenosis. There was an MRV done and basic Ultrasound, both of which showed narrowing. His position comes from the fact Valsalva effectively dilated her veins back to the normal range.
He says, "without a "fixed" or unchanging narrowing I cannot fathom how her Internal Jugular veins would contribute to her MS. Size measurements, changes with posture and other maneuvers may somehow relate to venous problems and CCSVI, but I just don't see an obvious relationship in the absence of a fixed stenosis that could generate increased venous pressures."
If you were me how would you respond to that in a positive way to encourage him to move forward with a venogram?
If I sent you his contact information would you be willing to contact him and discuss CCSVI? We're on your waiting list, but if we can get treated locally it is of course what we would prefer. However, we want a Dr who is on-board with CCSVI, otherwise I worry the venogram may not be done properly or the right things may not be looked for.
i will answer this privately
Posted: Mon Apr 26, 2010 6:18 pm
by drsclafani
Nunzio wrote:Let me see if I am now an expert in Color doppler analysis.
If you click on this URL will open the image of my left Jugular vein in sitting up position. http://my.opera.com/npsossi/albums/show ... e=41114021
(sorry, I couldn't figure out how to post the picture here)
Keep in mind that my right jugular vein is stenotic from lack of flow from the brain. The vein is enlarged and the only correct flow is the sliver of blue seen in the picture. Even more telling is the spectral analysis which shows waves above the zero line almost as much as below the line. No change in the supine position in size or flow.
My diagnose is: severe reflux in the only functional jugular vein.
Thanks Dr. Sclafani for your expert opinion and for giving us your valuable time.
P.S. Can anybody PM me how to post pictures?
nunzio, you have taken best of class honors.
Posted: Mon Apr 26, 2010 6:21 pm
by drsclafani
JOhnnybaby248 wrote:Dr. S. What say you
Zivadinov's study @ Buffalo 16 MS patients vs. 8 normal controls. (3T SWI) Showed iron deposition in 100% MSrs and 0% controls. "All 16 MS patients fulfilled the diagnosis of CCSVI", Angiology
I understand you now Dr. S you my friend remind me of a Spanish Gentlemen trying to explain to his peers and to the king of Spain that the world isn't FLAT but that its ROUND Lol
You my friend will be in the HISTORY BOOKS AS WELL!!!!!!!!!!
Christopher Columbus
“By prevailing over all obstacles and distractions, one may unfailingly arrive at his chosen goal or destination.
jb
christopher columbus was an italian, if i might brag a bit......
the neuros say that there are other diseases that also lead to iron deposition. zivadinov might need to prove it with another population
Posted: Mon Apr 26, 2010 6:23 pm
by drsclafani
Cece wrote:
drsclafani wrote:a non-congenital form of ccsvi is one that is acquired, not congenital. This could be an inflammatory stenoses that could happen after multiple catheteirzations of jugular veins needed for hemodialysis, or due to cancers that compress the veins.
These causes of ccsvi are not clearly connected to MS. Rather they result in other sequellae, too complicated to speak about now.
Other sequellae...I am curious...I would have guessed that acquired CCSVI would have resulted in m.s.-like symptoms.
(I am sorry, I will hold off for a bit, so that I don't flood the thread with comments on older posts like this...I had no internet for 14 days, it is good to be back!!)
perhaps one needs to bathe the brain with luxiriant flow over a very long time in order to get symptoms of ms
).