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SofiaK
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PostPosted: Fri May 28, 2010 12:29 pm 
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DearDr S:
-some Doctors claim that not everyone with MS has vein stenosis, and
-although Doppler results may show narrowing, venogram may not show this
Are either points true in your opinion?

After the procedure,
-How soon might I see any results?
-When might veins re-stenose?

Thank you kindly.
Sofia
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Zeureka
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PostPosted: Fri May 28, 2010 3:24 pm 
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drsclafani wrote:
[None of these four tests listed above is particularly helpful in assessing the azygous vein which drains the spinal cord. Only catheter venography and IVUS illustrate problems with that vein at the current state of the art.


Nothing found in my azygous vein (despite more lesions in my spinal cord), neither in that of ANY of the other 4 fellows that had angioplasty same day as me - noone had ballooning in azygous...also another friend from Italy that came 2 months earlier nothing found in azygous (also many lesions in spinal cord)

...would seem the IVUS in combination to venography could be really important to find potential pathologic valves.
And/or, as you also explained earlier, that there are maybe other stenosed veins (not checked/discovered in current standard procedure) other than azygous that might have to do with blocking drainage from spinal cord.
Or that any such theory linked to spinal cord damage might be hypothetical, as some doctors that I talked to/asked about this recently suggest and expressed jugulars are most important and in their view seem to impact most on the whole system and could even impact on spinal cord damage ;-)... But I would think there is a minor probability for that, as all makes sense that in azygous problem difficult to find and other veins that are not looked at in current procedure and stenosed...(but noone can really be sure yet...)
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AlmostClever
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PostPosted: Fri May 28, 2010 5:26 pm 
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drsclafani wrote:
Johnson wrote:

Beyond heating, a greater danger is the metal being pulled through your brain at high speed when they are scanning the occipital, so be sure to take out that barbell in your tongue or nasal septum! You don't want to "shoot" yourself in the head.

There are some cool videos of scuba tanks, fire extinguishers, hammers and such getting mixed up in MRI machines. Just Google it.


those cool videos don't show the terrible cost that occurs removing them. They have to vent off the coolants when they shut down the magnet and it costs quite a bit of money to start up the unit again.

IT IS VERY IMPORTANT TO REMOVE ALL METAL, KEYS, NECKLACES, ETC BEFORE GOING INTO THE MR SCANNER. SOME OF THE PATCHES USED FOR DRUG DELIVERY, LIKE THE NICOTINE PATCHES, CAN GET HEATED AND CAUSE INJURY TOO


Also important: Double-check to make sure your wallet is not in your shorts! I have done some MRI's where they don't make yor completely disrobe! They will ask you again but your not thinking sometimes!

NO, THEY WILL NOT STOP!

YES, YOUR CARDS WILL BE RUINED!

I know from experience!!!

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If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Cece
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PostPosted: Fri May 28, 2010 5:45 pm 
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Zeureka wrote:
...would seem the IVUS in combination to venography could be really important to find potential pathologic valves.

Sure sounds like it. He said awhile back that he hadn't used IVUS in enough patients to feel comfortable publishing yet...hopefully the delay will lift soon.

After the travel and expense that people are going to, if they are leaving with any lesions missed and untreated, it is really unfortunate...I don't blame the doctors, this is all too new.

Happy Memorial Day weekend, everyone! 8)

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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HappyPoet
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PostPosted: Fri May 28, 2010 6:55 pm 
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Hi Dr S,

If you have the time, I have some questions based on my test reports (shown below):

1) What might "reflects the jugular arterial flow" in the US report mean?
2) What might "Distortion of distal jugular vein due to the presence of leaflet valves" in the MRv-neck report mean?
3) How does my R-IJV flow velocity of 175.0 compare to the average flow velocities of MSers you've seen? How "paradoxical" is this velocity?
4) Is "A dural sinus is more like a built-in drainage pipe than like a flexible vein" a somewhat valid statement?

US: "... Right jugular vein Upright velocity is abnormal measuring 175.0 cm/sec. which probably reflects the jugular arterial flow." (R-supine = 31.9); (L-IJV = 60.2 supine, 56.7 upright).

MRv-head: "Abnormal examination with absent proximal segment left transverse sinus and markedly attenuated remainder of left transverse sinus and sphenoid sinus. In retrospect, the vertical Doppler recordings in the right jugular vein may represent a paradoxical high reading."

MRv-neck: "... Distortion of distal jugular veins due to the presence of leaflet valves."

If I understand correctly, my inoperable intracranial dural sinus malformations might, by way of the vertebral veins, be a contributing cause of my longitudinally-extensive thoracic lesion per Dr. Schelling's paper, "The Ways to Lesion Understanding." Considering the state of my dural sinuses and neck veins, I'm almost afraid to learn about my azygous vein in an upcoming catheter venogram.

Thank you very much for your very valuable time!

Wishing you a happy and safe holiday weekend :)
~HappyPoet
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HappyPoet
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PostPosted: Fri May 28, 2010 7:07 pm 
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Cece wrote:
After the travel and expense that people are going to, if they are leaving with any lesions missed and untreated, it is really unfortunate...I don't blame the doctors, this is all too new.

Cece, this is how I also feel about Zamboni's CCSVI definition specifically excluding intracranial venous findings. I think an MRv done after a failed Liberation treatment might help explain why the Liberation treatment failed.
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CureIous
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PostPosted: Fri May 28, 2010 10:07 pm 
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drsclafani wrote:

on Doppler and ECU, one sees hemodynamic evidence of abnormal flow and anatomical abnormalities of the jugular vein

on MRvenography one sees evidence of collapse of veins, collaterals and some real stenoses

MRvenography is NOT the same as what most would call venography or, to be a purist, i would call catheter venography

catheter venography is the Gold Standard, but i would argue that all have their value as does

intravascular ultrasound (IVUS)

you all know I am going to try to prove that catheter venography plus IVUS should be the gold standard.


None of these four tests listed above is particularly helpful in assessing the azygous vein which drains the spinal cord. Only catheter venography and IVUS illustrate problems with that vein at the current state of the art.


Greetings Dr. Sclafani. This was my impression too, thank you for codifying it. I recently intimated in my follow up thread the discovery of an abnormality that was discovered via IVUS, after having 4 stents put in that took care of the stenosed areas, after my 9 month follow up, the collaterals were shown to be filling again, the stenosed area near C1 was just too tight to deal with at that time, however after the membranous flap was discovered, and angioplastied open, at the collarbone level, it then immediately reduced the upper pressure gradient (at C1) from 4 mmHg to 1, and the collaterals once again vanished.

I cannot imagine any argument whatsoever for NOT having IVUS dovetailed on to venography as the undisupted gold standard. Course I'm at this time a bit partial to it's effectiveness, but thankful that Dr. Dake decided to use it, and was keen enough to discover that pathology and correct it. This is where I wonder if so many false negatives on MRV's, heck even venographies, could be missing these valve related issues.

Leaving external UT out of it for the time being of course, since that's essentially out of reach for the vast majority of MS patients. Least any UT worth using on us.

Good day sir, and sorry if this has been covered a hundred times on here already.

Mark

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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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Cece
PostPosted: Fri May 28, 2010 10:54 pm 
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Cece wrote:
And just like that, not twelve hours after the good doctor was here, he has two poignant questions waiting for him once again, between this and jr5646's.

I left out Donnchadh...and now everyone who has followed.

Mark, I think Dr. S will be interested in what you said here, it fits with what he's proposed before (that an upper area that seems like a narrowing or stenosis may not need direct treatment, but treatment of an area lower down will open up the flow)!

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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CureIous
PostPosted: Fri May 28, 2010 11:01 pm 
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Cece wrote:
Cece wrote:

Mark, I think Dr. S will be interested in what you said here, it fits with what he's proposed before (that an upper area that seems like a narrowing or stenosis may not need direct treatment, but treatment of an area lower down will open up the flow)!


Yes, they were discovering this in Poland last year... bottom>up vs. top>down approach. I say "approach" to insinuate "yet another angle to consider" not as a declarative statement of course...

I think every patient who has tested negative, up to and including those in the negative venography camp, should at a minimum keep their ear to the ground here, while of course we will have those who were misdiagnosed or have a strictly autoimmune thing happening, my sense is those %'s will be small in comparison to the MS community at large. Sense, hope, almost the same thing I guess, and I didn't toss in that grey area of the possibility that some could have a transient, on/off type of stenosis/retrograde flow. It's like that toilet that constantly overflows until the plumber comes, then all the sudden it works fine, until he leaves..

:)
Mark.

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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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Zeureka
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PostPosted: Fri May 28, 2010 11:32 pm 
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Cece wrote:
Zeureka wrote:
...would seem the IVUS in combination to venography could be really important to find potential pathologic valves.

Sure sounds like it. He said awhile back that he hadn't used IVUS in enough patients to feel comfortable publishing yet...hopefully the delay will lift soon.

After the travel and expense that people are going to, if they are leaving with any lesions missed and untreated, it is really unfortunate...I don't blame the doctors, this is all too new.

Happy Memorial Day weekend, everyone! 8)
Oh, me certainly neither! I am really so thankful that they give us this chance to already apply what they know - and in the manner they know best and are good at (and each doctor will obviously have a bit different deeper specialisation on a certain aspect) - and this at the max of the current status of their knowledge, experience and expertise! That's already great and it's positive to know that there may be even more good things to come with further research!
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sbr487
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PostPosted: Sat May 29, 2010 12:29 am 
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Hello Doc.,

Another question -

Do you think doctors who are doing study should also document the MS symptoms the patient presents with the type of defect they find? This data might be very valuable in future for diagnosis.
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drsclafani
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PostPosted: Sat May 29, 2010 6:10 am 
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HappyPoet wrote:
drsclafani wrote:
1. accept protocol as written. Liberations can begin. Yeah!!! javascript:emoticon(':lol:')
2. Accept provisionally with specific wording changes. Liberations resume Yeah!!! javascript:emoticon(':D')
3. Request detailed changes. This would require revision of the application. The revision would be reviewed at the next meeting of the Group reviewing my application. Each group meets once monthly javascript:emoticon(':evil:')

Dr S, I see you found the emoticons ... your use of them is so funny!
.
edit: I typed my daughter's adjective of "cute" the first time instead of mine, sorry Dr. S.


i like being cute, funny is not so bad, hot is best
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drsclafani
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PostPosted: Sat May 29, 2010 6:13 am 
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jr5646 wrote:
Dr. S., I hope I'm not the one in class "constantly" waving his hand/arm with a question.. lol

Anyway, can you take a look below?? Dying to see what you think..

Thanks again for helping us all..

jr5646 wrote:
Dr. Sclafani,

I just had an MRV done at Buffalo (BNAC-selfpay option) and wanted to see if you think this image shows treatable stenosis/narrowing? Is this something common you've seen? Is this area too high to be reached? Below is a direct quote from the report which I can't really make heads or tails of.. Also, I only presented with one of the five Zamboni criteria via doppler.. #2 - Reflux propagted upward to the Deep Cranial Veins (DCV's) and/or from the White Matter (WM) to the Subcortical Gray Matter (SCGM). Perhaps a bunch of clollateral veins too? Possible lower right IJV valve issue (sticky valve?) and Iron measures very high (higher than the avg. MS Pt.)

From the report: "MR VENOGRAM FINDINGS: The superior sagittal sinus with appears to drain predomininatly on the right. The transverse sinuses are relavetly symmetric in size. The sigmoid sinuses and jugular bulbs are relatively symmetric in size. At the base of the brain, the internal jugular veins are well visualized. At the level of the cranical/cervical junction junction on the right, the internal jugular on the right takes on a flattened morphology with respect to flow charactists. This segment is small in size being less than 10mm. Throughout the neck, the internal jugular veins have an ellipsoid morphology. The junction of the internal jugular veins with the subclavian veins is normal in apperance. There is slight asymmetry of the internal juglar veins with the right being larger than the left."

I'm not quite sure if or how this correlates, but my very first two presenting symptoms showed up on the left side. Left arm/hand numbness (still have it approx. 10 yrs later and left eye Optic Neuritis 2002 - complete, but temporary blindness that resolved in about 3 mths with steroids..

Anyway, the rest of the report comments on the arterial side.. all good :)

Thanks again for all your help.. I decided on investing the $4500 to hopefully get some answers and further research, but would really rather give it to someone who needs it more than I do instead..


sorry, i thought i responded to this, but perhaps it was something similar.

I see collaterals but i dont see the cause
of course, you know my answer, its the catheter venogram and the azygous and careful looking for a web
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drsclafani
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PostPosted: Sat May 29, 2010 6:15 am 
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Donnchadh wrote:
Dr. Sclafani:

Assuming that stents are implanted in the internal jugular veins, and a long term anti-coagulation regime is followed, would it ever be possible for the patient to donate a pint of whole blood?

The reason I am asking is that donating whole blood has been the best method for me in dealing with the MS effects of iron deposition.

I am not talking about donating while taking Plavik etc., during the immediate (30 days or so) recovery time, but later when presumably the inner vessel cells have completely covered the stent matrix.

Donnchadh


i do not think that anticoagulation is a contraindication to blood donation, but that is a bit afield for me
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drsclafani
PostPosted: Sat May 29, 2010 6:25 am 
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jfgonmen wrote:
Dear Dr. Sclafani.
My wife has MS for 20 years ago. She is 37 right now. She has SP MS two years ago and she is rapidly decline and worsering.

She was made some test to see if she has CCSVI ( Eco-doppler, flebography and scan ). We was told that she had asimmetrical yugulars. The left yugular has 12 milimiter and the rigth has 5.5 milimiter.
The doctor was surprise because it happen along the both yugular since top or beggining in cranial hole till the end of the neck. Even with the yugular cranial holes happens the same, the right cranial hole has a size that is less than a half than left one size.

My questions are:

Has it something to do with CCSVI?

sounds like it to me. Narrowing of the jugulars occurs because there is little blood flow through the vein. This is one of the important observations in ccsvi.
Quote:
Would it have any influency in MS?
Could it be treated some way?


The treatment of CCSVI often improves the patient's condition. This is done by stretching the vein with a balloon. Thank you for your question.

And your english writing is pretty good!
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