This Is MS Multiple Sclerosis Knowledge & Support Community

KikiT wrote:Welcome back Dr.S!! Saw a quick mention of a Zego machine on the show The Doctors. They said that Columbia Presb. has one and it is the latest 3D IMAGING FOR VASCULAR PROCEDURES. Seems that this would be the perfect machine for CCSVI imaging? Is this something new or just TV hype?

i am not familiar with this. i spend too much time answering questions

fogdweller wrote:Welcome back!! It is very, very good to have you back.

i am just back for a couple of days. I am leaving for china on thursday for ten days. i wanted to catch up here as much as possible because once i am in china everything will be upside down.

The issue of restenosis has been much discussed, and I was wondering, are restenosis issues much different in arteries and veins? Coronary Arteries, for instance, do not collapse, but apparently the jugulars collapse in the prone positition. does the contact between the sides of the veins present a problem if the veins have been stretched and expanded by ballooning? Would sleeping fairly upright for a time period be helprful?

the restenosis issues are very different indeed. in fact the dilatation is also very different in concept as well. it is too late and too complicated to address this question in detail. try to hold your thought and represent the question in mid-september when i can give an answer that helps.


HOWEVER....the jugular veins do not collapse in the prone position. prone means on your stomach, supine means on your back.....both mean you are horizontal. when you are horizontal the normal jugular vein is dilated, not collapsed. When you are UPRIGHT, your jugular vein is collapsed

Again welcome back. You must clue us in on the mystery of the serious matter you were discussing in the Adiroondacks.

i think i will pass on that right now. hopefully i will share with you soon

blossom wrote:hi dr. sclafani, i am still in awe that you have been gracious and kind enough to donate your knowledge and time to this site. thank you.

i was treated aug.3. from what i know they ballooned both juglars - the azygous was supposed to be ok but they said they worked on it a little. ? no may thurner. i'm a little in limbo. i was out cold and things were pretty brief.

immediately after recovery my left leg and foot was numb. "this is my better side". it has remained numb since. i am ppms with considerable disability, but numbness was not one of them anywhere. i did have some very small improvements for about 10 days but sadly they are gone.

actually i have more pain in my legs and feel worse in many ways along with the darn numbness. i called the treating doctor and she said that maybe where they went in it hit a nerve otherwise she would not know.

i had communicated with someone else that developed numbness and they found she had gotten a bad clot in her stent. i have no stent but could i possibly have a clot? i am on plavix and 325mg. asparin. the asparin has been standard for me as i have mthfr which is a genetic thing that makes me more suscepitle to heart attack, stroke and blood clots. i did tell the treating dr. about that.

the treatment facility is about a 11 hr. drive and my follow up 3 mo. do you think i should be concerned about this possibility? what do you suggest? did this ever happen to anyone you treated or have you heard of cases that numbness developed immediately and persisted? thank you.

if you have a hypercoagulable status, you should be worried about clot formation. This is where an ultrasound would come in handy, wouldnt it. cant be doing MRVs all the time!

beyond that i cannot really answer without seeing images and understanding what and where treatment was given

Drury wrote:Hello Dr. Sclafani,

Hope you got a chance to rest and enjoy your holiday.

My daughter went to Albany last week for an MRV only as we live in NY(she is on your waiting list and we live in hopes) and was told that her jugulars looked fine and that her azygos seemed OK although he could not see it completely. He also said she may well have reflux but he did not know what could be done about that. She was also treated by a chiropractor for gentle neck realignment (he is an Atlas Orthogonist)about 2 weeks prior for neck pain and he said he was pretty sure she would not have a problem with blood flow as he had just readjusted her neck.

Was it foolish to just have an MRV? Could the chiropractor be right? If there is reflux doesn't that mean there is stenosis?

Thank you for taking time to answer our questions even though you have only had a short break - i just hope you know how much we appreciate it.


Drury

i remain skeptical of most MRvenograms , although Haacke has been showing some incredibly excellent studies recently. his techniques are really improving what we can see. but most MRvenograms are not very good and would not trust them as a general rule. Also viewing the azygos with MR is no where near prime time.

so i am supposed to believe that, based upon an MRV and the guestimate of a chiropractor that your daughter has no venous abnormalities and yet has MS.....i have a bridge i would like to sell to you.

Rosegirl wrote:

2. Someone on this website posted a theory that patients whose MS symptoms come, go, and change frequently (even minute-to-minute sometimes) probably have either a periodically sticky flap/membrane or a periodically functioning valve in the internal jugulars that causes reflux sometimes, but not consistently. Do you think this theory make sense?

it is a plausible explanation.

Hi, it's Rosegirl. I was the one who asked about rapid, intermittent symptoms. Dr. Sclafani, I sent you a CD with images from my venogram so maybe you can comment based upon them. It's been eight weeks since the procedure and, other than feet that are no longer purple, there are no changes.

remind me when i return. i am way too tired to go looking in that pile right now.

cmozena wrote:I personally think that the position that the Society of Interventional Radiologist has taken is HUGE. They, of course, have the usual caveats that this isn't yet scientifically proven but their closing statement is a 'call to action'

"SIR believes that the completion of high-quality studies on CCSVI and interventional MS therapies should be considered an urgent research priority by investigators, funding agencies, and MS community advocates. SIR, through its Neurovascular and Venous Service Lines, is moving rapidly to catalyze the development of the needed studies by bringing together expert researchers in imageguided venous interventions, neurology, central nervous system imaging, MS outcomes assessment, and clinical trial methodology."

I emailed this link to a local research university and offered to volunteer to help, in any way I could, to expedite a trial.

Additionally, I emailed it to our local MS Society chapter. All 7 trials tht the MS Society has funded are being conducted Neuro specialist. Neuroradiology, Neurologist, Neuroscientist.

I guess Neuro has owned our disease up until now but I think the tables are turning.

I'd love to here the good doctors thoughts.

I recall the difficulties i had in converting everyone from surgery to intervention and surgeons into interventionalists.

i am proud of my specialty and my colleagues. They seek out new ideas, new treatments for hopeless situations and are not resistant to change.

I am pleased to have you all talking about your IRs

i just wish i were one of them right now

Hi Doc,

I hope that you relaxed in the mountains.

once i am in china everything will be upside down.

You do have a wit...

If you are interested in commenting on my procedure images, I would be much obliged. I have my own ideas, but I will hold my counsel for now. http://thepolishpatient.wordpress.com/. I wonder too, is there any significance to a below-average creatinine count?

Have a great trip to Beijing, and go easy on that Chinese brandy. It's wicked.

Cece wrote:Quick statistics:

Only 13 questions posed this past week.
8 answered overnight.
10 more posed since then.
1 more answered.

Quite the uphill battle!

yes it is sometimes very exhausting. I am tired.

**edited***

Sorry did not read well I guess; or too tired. Please disregard this post

Donnchadh wrote:Has the video from Dr. Sclafani's first conference ever been made available? I only a have dial-up Internet connection, so it's not feasible to download multi-MB files.

Anyone have a disk? I would be glad to cover expenses.

Donnchadh

i finally got it back after processing, and sent it to a volunteer MS sound engineer, but never got it back. I have some ideas, but will have to wait until return

drsclafani wrote:...things i have seen come from people who have sent me disks or patients who have described what and why things have been done.

OK, I admit its lazy that I haven't done a search for it, but could some please remind me if DR Sclafani is collecting the disks for his "Atlas"? and where it should be sent?

I recently underwent a venogram and ballooning here in Australia, and have a copy of the disk, if he is still collecting these. I also have a few MRV's prior to the procedure.

drsclafani wrote:

vivavie wrote:Hello DrS, I finally got my stent unblock (candy wrap stenosis) AND:
70% left jug stenosis: balloon twice 8/10X40mm
50% right jug: balloon 3X (8/10/12X40 mm)
both in the area of prior radiation+ curietherapy and neck dissection from previous tongue cancer.

Vivavie:
can you tell us whether your MS symptoms started before or after the radical neck surgery. If you and the group may recall, one of the arguments brought up to refute ccsvi is that patients with neck cancers have both their jugular veins tied off during surgery and they do not develop any symptoms. However it is known that sometimes these patients develop symptoms such as headaches, cog fog, balance problems and fatigue too.

Please let us know

He ALSO found a kink/irregularity in my Azygos 8X40mm (not checked in Poland)
It cracked - it poped - it hurt. (He also check MT and lombar =fine)

I was this doc 1st, he was pretty thorough (2 1/2hr) and he felt he did an aggressive job. Nice, competent, entousiast IR.

I was sure this time I was Fully Liberated but NO! Nothing:Pain -fatigue- brain fog are the same. headache increase.

What eludes me is my stent is now clear, how come I don't have the previous improvements I had for 6 weeks (bladder, saliva, bowel, no headache, sleep)? During the 1st procedure they only found a faulty valva.

of course, i havent seen your pictures so it is hard to say much. but the diameter of the balloons used may have been too small. I cannot tell without knowing the measurements of your veins. While Dr sinan is moving toward 18 and 20 mm balloons, your doctor seems to have stayed on the side of smaller balloons, perhaps for safety.

What should be my next step? Is it possible that the veins did not hold their new shape? How about balloon size? lenght? Would it be a good time to use cutting balloon because those veins must be hardened by radiation?
I am not ready to give up yet! help!
Thank you

it is really difficult to answer you without seeing the picture. if your veins are narrowed by radiation, it is likely that stents will be needed. however, remember, i am just a bystander hearing about the work of another plumber

Tongue cancer was 5 years before ms. I was 30yo. Normally it is 60+ yo man who have smoke and DRINK all their life. That is probably why they never face CCVSI as complication for playing in their neck....
Yes, the Dr said my left jug was pretty small 6mm
How about stent stenosis while on Plavix?
Why did I not get my previous improvements back??
You already have all my CD from Poland and I shipped you this one yesterday with the details. Even the Doppler in July when I was told my veins were 100% NORMAL.

Did you wrestle with the bears or the Indians to be so tired after vacation?!?
I hope you enjoy your rice!

Dr. S, can you talk about what issues can arise from a balloon breaking during angioplasty?
Do they design them to factor in this possibility?
Does this happen often? Rarely?
What should be watched for after a balloon has broken in a patient during angioplasty?
And what precautions can be taken to avoid any potential issues that a balloon break can cause?

Wow! Don't know if Ive ever had so many questions at once! ;)

Rest now, enjoy being upside down! Look forward to hearing news from the trip...

Hi Dr. S,

No questions from me but link to a topic about Captboo ...
This relates to MS like symptoms after a surgery. You too made a comment
on this topic (related to cancer surgery)

http://www.thisisms.com/ftopict-13516.html

Regards,

Dr. Sclafani,

As many others with MS, I am extremely grateful for all your hard work and effort you have and you continue to put forth to study CCSVI and help those of us with MS.

I have been fortunate to be a participant in one of the diagnostic CCSVI/MS studies at the Buffalo Neuroimaging Analysis Center (BNAC).

Summary of the MRI BRAIN FINDINGS: The arterial flow-voids appear patent on axial T2 weighted images. The ventricles and superficial CSF spaces are normal size for patients age. In the cerebral hemispheres, there are T2 hyperintense lesions seen in the deep white matter. These signal abnormalities varying size and shape and are for the most part located in the frontal lobes. There are also more located in the peripheral white matter. None of these T2 hyperintense lesion exhibit hypointensity on axial T1 - weighted images. The cervical spinal cord is only imaged to the level of C1. No areas of signal abnormality are seen in that uppermost region of the cervical core.

MR VENOGRAM FINDINGS: The superior sagittal sinus is well visualized. The left transverse sinus, sigmoid sinus and internal jugular vein are dominant in size over the right. At the base of the brain the right internal jugular has an ellipsoid morphology. It takes on a flat morphology at the level of C1. It then returns to an ellipsoid morphology until about the level of C6 where it becomes pinpoint with regards to flow. The morphology returns to ellipsoid at the level of T1. At the base of the brain the left internal jugular vein has an ellipsoid morphology. It has a small area of flattening at the level of C6 and C7. External jugular veins are seen bilaterally but they are not abnormal in size. IMPRESSION: 1. THERE IS AN AREA OF PINPOINT FLOW IN THE RIGHT INTERNAL JUGULAR VEIN AT THE LEVEL OF C6 THROUGH T1. THIS IS AN AREA THAT IS POSTERIOR TO THE STERNOCLEIDOMASTOID MUSCLE AND IS A COMMON LOCATION FOR THIS TO BE SEEN IN NORMAL SUBJECTS AS WELL. CORRELATION WITH DOPPLER ULTRASOUND IS ADVISED. 2. THERE IS A SMALL AREA OF FLATTENING WITH REGARDS TO FLOW IN THE LEFT INTERNAL JUGULAR VEIN SEEN AT THE LEVEL OF C6-C7. THAT IS ALSO POSTERIOR TO THE STERNOCLEIDOMASTOID MUSCLE AND IS SEEN IN NORMAL SUBJECTS AS WELL.

With the TRANSCRANIAL ULTRASOUND, I was found to have "REFLUX IN THE DEEP CEREBRAL VEINS WITH HEAD AT 90 DEGREES." None of the other four parameters tested with ultrasound were found to be positive.

According to the doctor in Buffalo there is nothing that can be done at this time to fix my problem. It was said to me that maybe in the future they MAY bring back all the persons who present like me. (only reflux problems in the deep cerebral veins) and study what can be done for us at that time. As you know "time is brain." I believe that it may be a long time for this specific research to take place.

In Buffalo, I may have been measured by a strict research protocol to try to maximize inter-rater reliability. The ultrasound tech did not appear to assess the whole length of the internal jugular veins, but rather put the head of the ultrasound in one predetermined location per vein assessed. Just so you know I am glad that I went to Buffalo because I think I got good service and Buffalo appears to be one of the few places that assesses using the transcranial ultrasound.

1. How high up in the neck/ head /brain venous system can be assessed with US? with a real time venography?

2. During venography, can one see reflux into the deep cerebral veins when dye is released high up in the internal jugular veins?

3. Could problems high up in the internal jugulars (i.e. my flat morphology of my right internal jugular at the level of C1) cause the reflux in the deep cerebral veins or is my problem more central in the brain??

4. What are your thoughts on treating with venoplasty high up in the jugular vein? How high up can the venoplasty balloon reach? What are the safely issues?

5. I have heard that some interventional radiologists have treated high up stenoses of the internal jugulars by ballooning lower in a safer part of the internal jugular, which appears to fix the problem higher up. Can you explain why this can improves blood flow in a narrowing above the part that was venoplastied? Could do so in layperson's terms as well as with fluid dynamics terms?

6. Do you believe that I should be assessed with a venogram?

Please, all your thoughts are welcomed. I appreciate you replying to this message.

Kindest regards,

Athena