DrSclafani answers some questions

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

Postby drsclafani » Sat Jul 31, 2010 3:22 pm

Cece wrote:
drsclafani wrote:now my turn for a question: how are you feeling. Did you get any relief by liberation?

Here are her previous posts, if this helps:

joana123 wrote:Thank you for your reply.
I don't know what to do, the doctor did not want to redo the balloon angioplasti: said that it makes no sense, and sent me home. I am desperate, is there any hope for me?
What can be done in my case?

With respect.
A.

joana123 wrote:Thank you for your reply. I am from Bosnia and Herzegovina, and balloon dilatation have made in Serbia, in Belgrade Dedinje hospital. I'm sending you a discharge summary from the hospital, which is visible from my situation.

joana123 wrote:Good day everyone,

Please can you answer. How do you solve CCSVI if arteries supports the jugular vein? I have baloon angioplastic, it was not successfully i was a restenosis. I'm desperate.

Thanks, A.

joana123 wrote:I'm sorry for my bad english.
The doctor said that the situation - specific reason because the artery pushing jugular vein.
Can you tell me is installation stent in my case is posible?

Thank you,
whit respect,
A.


Sorry cece

joana123 needs to be more clear about whether she has worsening, not change slight improvement or satisfying result

i am not sure that this subjective score will be adequate, but we need to start thinking about patient satisfaction assessments.
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Postby drsclafani » Sat Jul 31, 2010 3:24 pm

Nunzio wrote:
drsclafani wrote:
girlgeek33 wrote:Not a question, Dr. S, I will send you a flash drive with copies of all of my video files. I am willing to do the same for anyone who would like copies. But, send me a private message and you can send me a drive with enough space to hold over 9gb of files and please include self addressed, stamped envelope... I gave up on online limitations...


squeakycat, algis and L have volunteered their services to improve the quality and availability of the professional videos that were created. hopefully they will be available soon.

patience my dear self :twisted:

If you upload your files to Megashares.com which is a free service with a 10 gigabites limit, they will send you a url that you can share with the forum and everybody will be able to download the file at their convenience without using the postal service which is so 20th century.
http://www.megashares.com/


nunzio
we are talking about six hours of video, dont you think we will exceed 10gB
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Postby drsclafani » Sat Jul 31, 2010 3:27 pm

joana123 wrote:Thank you for your reply.

I feel like even before the liberation treatment, no changes have not felt at all and I doubt that the veins were enlarged because on the the control Doppler doctor found that nothing had been done and called the doctor who performed the surgery to explain the situation.
What I have passed, that was a ''horror''. I hope my pain will get done, because i have a scheduled appointment in Bulgaria in early September this year.
I guess there will be more lucky!

With respect, A.

joana
are you primary progressive MS? often there is no change which might be good if you are deteriorating fast. Stabilization is sometimes the goal. Was ascending umbar venography done? did they go in to your right or left groin? was the azygous studied by venography and was angioplasty done there?
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Postby Zeureka » Sat Jul 31, 2010 4:53 pm

drsclafani wrote:
Nunzio wrote:Image
This is a picture from my MRV with a view from the top.
The top of the image shows my left sinus and the bottom shows the right one which is considerably smaller.


Bring it on nunzio

dilate the jugulars and then see if flow improves in the sinuses
Thanks Nunzio for those pics! Wish I could get some like that from my head...but I hope, lets see the follow-up they can provide me in Belgium.

Dr Sclafani, understand that at this moment only thing that can be done in case of sinus thrombosis or stenosis is angioplasty of the jugulars and hope that this has impact. Correct?
How long would you think relieving a thrombosis in the sinus could take after jugular intervention? Could such a thrombosis be resolved in some weeks/months or to count at least a year? And in case of a stenosis in the sinus can widening of the jugulars really have impact?

I am just asking since have a friend with RR that has stent in left jugular since two months now and still no impact on the "limbo" (dizziness, how he calls it). But his situation seems stabilised for now (in terms of no relapse since stopping Tysabri, and before without Tysabri had 5 per year). Since it is his major disabling symptom already non-stop since 9 years(!), could this be an indication that the sinuses most likely stenosed?

>>And stenosis of jugular veins is reported to be associated with dural sinus thrombosis, leading to mental confusion and memory problems, loss of balance, and fatigue that resolves after the thrombus is dissolved and the jugular stenosis is angioplastied.<<
When such a thrombosis dissolves could this be associated to pain (strong strange headaches) over a longer period - such as I had for 10 days?! Started with shorter migraine after 2 days and then longer heavy headaches 5 days after procedure and were finally(uff!) after 1 month completely gone. Am now also 3 months after procedure headache-free.
Last edited by Zeureka on Sat Jul 31, 2010 5:38 pm, edited 2 times in total.
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Postby Nunzio » Sat Jul 31, 2010 4:53 pm

drsclafani wrote:
Nunzio wrote:
drsclafani wrote:[quote="girlgeek33" you can send me a drive with enough space to hold over 9gb of files and please include self addressed, stamped envelope... I gave up on online limitations...


:

If you upload your files to Megashares.com which is a free service with a 10 gigabites limit, they will send you a url that you can share with the forum
http://www.megashares.com/

nunzio
we are talking about six hours of video, dont you think we will exceed 10gB

Not necessarily; I can record one hour of TV programming for less than a gigabite, it depend on the quality of the image.
I can only go by what Girlgeek is saying and she asked for a 9 gigabite drive.
Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />
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Postby Zeureka » Sat Jul 31, 2010 5:12 pm

hope410 wrote:
drsclafani wrote:IVUS is not reimbursed..Let me ask you this: if you had to pay for the catheter as an extra, would you pay it?
Algis wrote:Ditto (Hope)
Idem. To get my azygos and lumbar veins checked for sure! Should it be the turn of those on your waiting list one day :D could you also include a check of the lumbar veins? I guess by passing the catheter from the left to at least check the iliac vein as well?

I'm sure that sunny day of approval for your renewed request will come! Is there news on any idea when this might be?
(Sorry if there was news on it before, I am a bit out of the loop since came back from hols)
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Postby HappyPoet » Sat Jul 31, 2010 6:35 pm

drsclafani wrote:
HappyPoet wrote:Hello Dr. Sclafani,

It seems I owe you a question. :wink:

Here is the question I owe you:

drsclafani wrote:
Cece wrote:Lately with the emergence of so many more docs on the field, they all have different strategies. I know of a doc doing unilateral ballooning, so if both jugulars need ballooning, he schedules them for different days. (This is quite cautious?)

this is quite proposterous!

Now I'm quite terrified! Can you please be more specific?
Thank you.

~HP


Let me put it simply:
you have to go to shopping mall where that are two stores that are next door to each other and from which you want to purchase some items at both. You walk, chair or drive to one store, buy what you need, then go home without visiting the other store. Then the next day you do the same thing to go to the second store.

a waste of energy, double the risk of a car crash, etc, and maybe the second store will not have the item the second day


Thank you, Dr S. I was worried beyond those reasons -- I wondered if you were implying there was some direct medical reason within the procedure itself that was a problem.

Those accepting this offer of help do so agreeing to the two-treament strategy, and I imagine all have different reasons for their decision. Due to the possibility of pain, which, for me, can cause an exacerbation with new symptoms, my pain management doctor dismissed concerns of a second "shopping trip" so that I can have time to recover from pain, if needed.

I know of other reasons people are opting for this strategy, and like most things in life, strategies can change over time. Also, doctors have been bringing back patients for a second "shopping trip" for many reasons, and the two-treatment strategy is just a different manifestation of more shopping which allows the doctor more time to assess the change, if any, in vein physiology from the first procedure and more time to consider more options, especially for the more difficult ballooning situations, without the pressure of time constraints due to patients' locked-in travel arrangements.

This reminds me of the $650 IVUS question -- is the cost worth the benefit to the patient: Would I pay the extra money for an IVUS catheter if it gives my doctor a better chance at finding all problems? Would I make a return trip if doing so gives my doctor time to consult with other doctors about my case?
Yes and Yes. Especially if I trust my doctor.
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Re: all Cece's questions....

Postby Cece » Sat Jul 31, 2010 8:53 pm

drsclafani wrote:Tariq has not yet shown outcomes using those large diameters of dilatation. He did show, however, that the vein could tolerate those diameters . It was very helpful to see that the frontier.

Are we talking about never-done-before diameters? Or just never-done-before in CCSVI-stricken veins?

Absolutely nothing. Dr Petrov volunteered to come from bulgaria. arrived on sunday night, returned on monday night. Dr. Siskin drove from albany starting at 5am monday, returned after dinner to albany at 10pm.
Isnt that amazing. Such great altruism was just demonstrated!. Brings tears to my eyes.

I hope they know it is appreciated....
we have spoken about this. The original carotid stenting that was approved by CMS required that a vascular surgeon certify that the patient was not a candidate for surgery. Carotid stenting was relegated to secondary status of limited use because the initial trials showed that percutaneous stenting had more risks than open surgery. Some of the initial trials compard surgery done by experts against stenting done by people who had done as few as four cases. self defeating prophesy.

Now, as the next generation of trials is done comparing experienced operators of both methods, stenting is shown to have fewer complications.

Sound familiar? Lets wait on the RCTs

But the RCTs aren't waiting, are they?

Will the International Society of Neurovascular Diseases be the one to help focus these efforts? Is it through this society that the ideal randomized multicenter trial with trained investigators who have completed many procedures could be funded?

Side note: Paolo as the president of the Society! This is impressive, I am glad that he is a part of this.
Glad you're back, can't thank you enough for what you're doing to move CCSVI forward for all of us.


you aint seen nothin yet

Can't wait to see more then, you've done plenty already....
"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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Re: video

Postby NHE » Sun Aug 01, 2010 1:06 am

Nunzio wrote:
drsclafani wrote:we are talking about six hours of video, dont you think we will exceed 10gB

Not necessarily; I can record one hour of TV programming for less than a gigabite, it depend on the quality of the image.
I can only go by what Girlgeek is saying and she asked for a 9 gigabite drive.


Agreed. I have a Panasonic DVR. If I record in EP mode, then I can get 8 hours of video on one 4.7 GB DVD-R disc. The quality is not HD to be certain, but it's nearly the same as 480i and still watchable without getting annoyed.

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Postby girlgeek33 » Sun Aug 01, 2010 6:14 am

drsclafani wrote:
nunzio
we are talking about six hours of video, dont you think we will exceed 10gB


I had to compress some files to get them within the 500mb upload limitations on photobucket, sadly before I realized that they truncate the length of the video. :( BUT, i have succeeded in uploading all the files and here are the links to download:
displaying ~100 content items
Filename
URL
Filesize
MVI_0314.THM
http://d01.megashares.com/?d01=o1GhSCe
8.58 KB
MVI_0315.mp4
http://d01.megashares.com/?d01=2uYaYK0
495.67 MB
MVI_0316.mp4
http://d01.megashares.com/?d01=GVgFXvp
493.73 MB
MVI_0295.AVI
http://d01.megashares.com/?d01=kJjLQOl
15.02 MB
MVI_0295.THM
http://d01.megashares.com/?d01=kUwS7Qe
8.9 KB
MVI_0296a.mp4
http://d01.megashares.com/?d01=XV1MFKA
493.69 MB
MVI_0297.AVI
http://d01.megashares.com/?d01=HdFPICL
131.35 MB
MVI_0297.THM
http://d01.megashares.com/?d01=w536pvK
8.33 KB
MVI_0298.AVI
http://d01.megashares.com/?d01=Bbfz8FQ
23.46 MB
MVI_0298.THM
http://d01.megashares.com/?d01=6faVf0o
9.08 KB
MVI_0299.mp4
http://d01.megashares.com/?d01=hxjRaDW
496.08 MB
MVI_0300.AVI
http://d01.megashares.com/?d01=c1Am37f
125.15 MB
MVI_0300.THM
http://d01.megashares.com/?d01=YHjlMTr
9.49 KB
MVI_0301.mp4
http://d01.megashares.com/?d01=qahxoOp
496.3 MB
MVI_0302.AVI
http://d01.megashares.com/?d01=bGTf9gQ
31.52 MB
MVI_0302.THM
http://d01.megashares.com/?d01=RX81BbG
8.64 KB
MVI_0303.mp4
http://d01.megashares.com/?d01=I61dY8e
62.23 MB
MVI_0304.AVI
http://d01.megashares.com/?d01=8i22hkg
237.06 MB
MVI_0304.THM
http://d01.megashares.com/?d01=LU1RE9D
8.1 KB
MVI_0305.mp4
http://d01.megashares.com/?d01=PlGxT5S
493.96 MB
MVI_0306.mp4
http://d01.megashares.com/?d01=zdvsarZ
494.76 MB
MVI_0307.AVI
http://d01.megashares.com/?d01=ndaRJ1N
35.91 MB
MVI_0307.THM
http://d01.megashares.com/?d01=H7rlMi0
8.82 KB
MVI_0308.AVI
http://d01.megashares.com/?d01=VRCJre2
45.77 MB
MVI_0308.THM
http://d01.megashares.com/?d01=vBrg3mX
8.21 KB
MVI_0309.mp4
http://d01.megashares.com/?d01=rxKwnnc
495.88 MB
MVI_0310.mp4
http://d01.megashares.com/?d01=IpyWSn4
48.81 MB
MVI_0311.mp4
http://d01.megashares.com/?d01=S5eg8O8
117.92 MB
MVI_0312a.mp4
http://d01.megashares.com/?d01=NYZMIhc
489.07 MB
MVI_0313.mp4
http://d01.megashares.com/?d01=OalMatk
496.02 MB
MVI_0314.AVI
http://d01.megashares.com/?d01=his1W5a
16.69 MB
MOV00075.MPG
http://d01.megashares.com/?d01=jCbd1cY
44.95 MB
MOV00076.mp4
http://d01.megashares.com/?d01=mwip2ZZ
485.79 MB
MOV00077.MPG
http://d01.megashares.com/?d01=TLg3Toi
355.05 MB
MOV00078.MPG
http://d01.megashares.com/?d01=GAL8sZq
467.34 MB
MOV00079.MPG
http://d01.megashares.com/?d01=d45c6g2
249.21 MB
MOV00080.MPG
http://d01.megashares.com/?d01=YFQ4rVy
166.21 MB
MOV00073.MPG
http://d01.megashares.com/?d01=SBTcP8a
127.59 MB
MOV00074.mp4
http://d01.megashares.com/?d01=B27iSyx
486.64 MB
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Postby CCSVIhusband » Sun Aug 01, 2010 6:32 am

drsclafani wrote:
joana123 wrote:Thank you for your reply.

I feel like even before the liberation treatment, no changes have not felt at all and I doubt that the veins were enlarged because on the the control Doppler doctor found that nothing had been done and called the doctor who performed the surgery to explain the situation.
What I have passed, that was a ''horror''. I hope my pain will get done, because i have a scheduled appointment in Bulgaria in early September this year.
I guess there will be more lucky!

With respect, A.

joana
are you primary progressive MS? often there is no change which might be good if you are deteriorating fast. Stabilization is sometimes the goal. Was ascending umbar venography done? did they go in to your right or left groin? was the azygous studied by venography and was angioplasty done there?


Dr. S:

It seems there have been cases of stenting the ascending lumbar veins ...
any thoughts as to if stenting the lumbars may be feasible? or even useful in the case of CCSVI ...
http://www.ncbi.nlm.nih.gov/pubmed/17012012
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Postby lifeisgood » Sun Aug 01, 2010 6:32 am

Asked previously, but it was the day of the symposium and I think think it might have been missed. There did seem to be some interest and also others that's experienced the same type of relief. In fact, someone started another thread regarding it if you'd like to relay your own experience:

Dr. S:
Is it possible to have veins temporarily open on their own for an unknown reason which then relieves symptoms?

Here is our story:
About two years ago, on a typical Saturday afternoon, my husband (RRMS for about 20 years) had been sitting for a short while when he noticed for some reason his numbness in his legs felt much better. I was in the room with him and it was somewhat eery, because he had this confused look on his face. He shook his legs, stood up and walked around to experience the feeling of normalcy return to his lower legs. He walked around the house, went up and down the stairs (which he could do before, but he was trying to "test" things out) all very confused about what he was feeling. At the time, he told me that his legs felt normal. It gave me goosebumps watching him experience it. It was shortlived though, and within an hour, as I remember, he was back to 'his' normal.

Could his veins somehow have moved or twisted so that bloodflow was able to make it through? It was a very "out of body" experience for him. Anyone else ever experience a drastic temporary improvement like this before?

Thanks Dr. S - You're the best !
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Postby joana123 » Sun Aug 01, 2010 7:20 am

drsclafani wrote:
joana123 wrote:Thank you for your reply.

I feel like even before the liberation treatment, no changes have not felt at all and I doubt that the veins were enlarged because on the the control Doppler doctor found that nothing had been done and called the doctor who performed the surgery to explain the situation.
What I have passed, that was a ''horror''. I hope my pain will get done, because i have a scheduled appointment in Bulgaria in early September this year.
I guess there will be more lucky!

With respect, A.

joana
are you primary progressive MS? often there is no change which might be good if you are deteriorating fast. Stabilization is sometimes the goal. Was ascending umbar venography done? did they go in to your right or left groin? was the azygous studied by venography and was angioplasty done there?



Dear dr.,

i'm PPMS, Dg.2004.g, last five months in a wheelchair. The lumbar venography is not doing.
The groin was up from right leg. They not mentioned study about azygous by venography and angioplasty was not done there.

With respect, A.
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Me too

Postby Rosegirl » Sun Aug 01, 2010 7:24 am

Lifeisgood,

Re short term improvements: My only symptom is that for the last ten years, my walking has deteriorated. Now I wall-walk around the house and for the last five years, I use a scooter when I go out.

Several times I have suddenly been able to walk perfectly! Perfect balance, easy gait, swinging my arms -- it all worked. But it never lasted more than a few minutes. I never knew why it came or went.

Maybe an explanation for this would be something like a valve that sticks? When it temporarily works, so does everything else?
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Postby drsclafani » Sun Aug 01, 2010 10:02 am

Zeureka wrote:
drsclafani wrote:
Nunzio wrote:Image
This is a picture from my MRV with a view from the top.
The top of the image shows my left sinus and the bottom shows the right one which is considerably smaller.


Bring it on nunzio

dilate the jugulars and then see if flow improves in the sinuses
Thanks Nunzio for those pics! Wish I could get some like that from my head...but I hope, lets see the follow-up they can provide me in Belgium.

Dr Sclafani, understand that at this moment only thing that can be done in case of sinus thrombosis or stenosis is angioplasty of the jugulars and hope that this has impact. Correct?


zeurika, this not what i meant to convey and, I guess this is a difficult concept to get your hands around.
1. i think (and hope) that most patients have increased resistance to flow in the dural sinuses because of low obstructions and that this causes an appearance of stenosis or occlusion rather than a real stenosis or occlusion. If you treat the lower obstructions, I hope that this increases blood flow through the sinuses that looks occluded.
2. some patients have a dominant flow through one dural sinus, while the other one is small. This could be congenital or it could be acquired after a prior thrombosis. A narrow bony canal where the sinus exits the skull will always cause dominance of the other side.
3. Dural sinus thrombosis can be caused by many things. DST has not been associated with MS very often, except in case reports. The usual causes are pregnancy or contraceptive medications, dehydration, inflammatory bowel disease, kidney failure, drug induced, or patients who are prone to clotting. IT can be seen after trauma, brain surgery, venous catheterizations, strokes, cancers (probably by making patients hypercoagulable, or trauma.


How long would you think relieving a thrombosis in the sinus could take after jugular intervention? Could such a thrombosis be resolved in some weeks/months or to count at least a year? And in case of a stenosis in the sinus can widening of the jugulars really have impact?

i am not saying that opening up stenosis of the jugular vein will do much to reverse a thrombosis of the dural sinus. That might require angioplasty or stenting or both, in addition to thrombolysis with clot busting drugs

I am just asking since have a friend with RR that has stent in left jugular since two months now and still no impact on the "limbo" (dizziness, how he calls it). But his situation seems stabilised for now (in terms of no relapse since stopping Tysabri, and before without Tysabri had 5 per year). Since it is his major disabling symptom already non-stop since 9 years(!), could this be an indication that the sinuses most likely stenosed?

I am not saying that. Some patients just do not respond to dilatation. Moreover it usually takes two veins being diseased to have ccsvi. which is the other one?

>>And stenosis of jugular veins is reported to be associated with dural sinus thrombosis, leading to mental confusion and memory problems, loss of balance, and fatigue that resolves after the thrombus is dissolved and the jugular stenosis is angioplastied.<<


reported in case reports so far.

When such a thrombosis dissolves could this be associated to pain (strong strange headaches) over a longer period - such as I had for 10 days?! Started with shorter migraine after 2 days and then longer heavy headaches 5 days after procedure and were finally(uff!) after 1 month completely gone. Am now also 3 months after procedure headache-free.
[b]

not sure that those headaches represent. Could be increased venous flow, or could be due to the angioplasty, or could be a small relapse?
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