DrSclafani answers some questions

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

Postby costumenastional » Wed Jul 28, 2010 12:29 am

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WOW

Postby ACE » Wed Jul 28, 2010 2:37 am

Wow costumenastional is really out there, I know this is not a question so I tend my sincerest apology before hand to Dr Sclafani....but WOW
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please stop

Postby drsclafani » Wed Jul 28, 2010 4:05 am

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Postby costumenastional » Wed Jul 28, 2010 4:30 am

?I am really sorry you would think something like that for me doctor. Forgive me but i ll stick with what i wrote simply because i mean it.
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Postby drsclafani » Wed Jul 28, 2010 4:57 am

costumenastional wrote:?I am really sorry you would think something like that for me doctor. Forgive me but i ll stick with what i wrote simply because i mean it.


forgive me too
i am tired and frustrated
sorry

ps, the art is great but i want questions
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Postby TMrox » Wed Jul 28, 2010 5:18 am

Dear Dr Sclafani,

Thanks so much for all your enthusiasm, knowledge and the hard work you have vested in us. I wish there were more docs like you.

I have a question regarding the article below. Do the occlusion of jugular veins to treat cancer patients really resemble anything like having CCSVI?

Many thanks,
Rox

"Endovascular venous procedures for multiple sclerosis?" http://msj.sagepub.com/content/16/7/771.full.pdf+html

A well-recognized feature of the jugular and vertebral venous systems in the neck is the way in which they respond to changes in body orientation: during upright position the vertebral plexus takes over nearly all of the jugular venous outflow,5 suggesting that a great deal of adaptability and autoregulation also exist in the venous neck drainage system. The interesting correlation between jugular venous obstruction and demyelinating disease found by Zamboni et al.1,2,8 recently, has therefore come as a surprise because the cerebral venous system appears, at least in theory, to cope quite well with low flow. Neck surgeons have for a long time occluded the jugular veins during radical neck surgery to treat cancer and they have largely succeeded without seeing significant hemodynamic changes of the intracranial pressure doing each side’s ligation in stages. Uneventful outcomes exist even in cases of simultaneous bilateral jugular ligation.9 To the best of the authors’ knowledge there are no reports of clinical or neuroimaging findings resembling those of demyelinating disease after those procedures. Similarly, we have not seen imaging changes resembling MS in patients suffering jugular thrombosis from central lines inserted in intensive care unit (ICU) patients. Put simply, the vertebral venous system appears to compensate efficiently for impaired flow in the jugular veins.


If we follow the venous system caudally, parallel to the jugular system, the drainage of the posterior neck and cervical spine takes place through a complex and rich vertebral plexus that eventually proceeds to the brachiocephalic veins, one on each side. These large trunks converge into the superior vena cava (SVC). The azygos vein joins the superior vena cava before the latter reaches the right atrium.10 The upper third of the thoracic spine drainage is through the superior intercostal veins that flow into the azygos and left hemiazygos in 75% of cases. In the remainder the superior intercostal veins end in the brachiocephalic trunks. The mid, lower thoracic and lumbosacral spine venous drainage is largely shared by the lumbar, azygos, and sacral veins. Hence, the azygos system is a back up venous route for the vena cava arrangement,11 in cases of vena cava obstruction. It would be surprising if insufficiency of a collateral system such as the azygos were enough to alter the well-adjusted spinal venous homeostasis and produce the spinal manifestations of MS.

In well-documented cases of venous hypertension created by the presence of a high flow lesion such as dural Arteriovenous (AV) fistula, any spinal cord lesions present on MRI have very different characteristics from a demyelinating plaque. The former feature is a significant edematous swelling involving the whole segment of the spinal cord and not a single lesion in the posterior columns.
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby siduri » Wed Jul 28, 2010 5:52 am

Hi Dr. Sclafani - I am still feeling shock & awe that after 30 years of losing ground, drawing on hope, denial, and fantasy, I now feel empowered! I’ve never before seen such intellectual curiosity, professional passion, and human compassion directed at something that could help ME. Thank you so much for bringing all of your beautiful brains together.

I'm on waiting lists for you & Dr. Siskin, and since I'm coming from Alaska, am wondering about follow up care. If I have treatment with one dr and find someone closer that could do follow up care, is there a feeling of ownership - stay out of another drs territority - in this field? I ask because I had an ITB pump implanted by a dr at one clinic; then tried to switch drs but found that the job belonged to the first guy or another dr at the same clinic. Don't take me off your list! I'll fly to NY every 3 months if I have to, but I haven't seen this question discussed before.

This thread is fascinating with the information it shares and ideas it inspires. Nothing else could keep me up reading to 3am like this has, but I think it should be turned into a book. Cece, aren't you a novelist? ;)

You all have my sincere appreciation and humble thanks. Sue
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Postby Cece » Wed Jul 28, 2010 7:50 am

DrS, if you are feeling fatigued, we can all relate. ;)

(Sue, this is all too strange for fiction. And I regretted not saying 'small-time' when I said 'novelist'. But I look forward to the day when the memoirs and nonfiction ccsvi books, like Marie's, start coming out!)
Last edited by Cece on Wed Jul 28, 2010 7:56 am, edited 1 time in total.
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Postby TMrox » Wed Jul 28, 2010 7:54 am

Dear Dr Sclafani,

Sorry to ask two questions in one day.

Here is a 1969 article on occluded azygous vein and the value of azygography to evaluate the effectiveness of radiation therapy for cancer treatment. Have you seen this article?

http://www.ajronline.org/cgi/reprint/105/1/83.pdf

I have no idea what the article means by opening a previously occluded azygous. How did the docs open the occluded vein back in 1969? Is this kind of obstructions what we we are seeing in CCSVI?

Sorry if it this turns completely irrelevant.

Rox
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby drsclafani » Wed Jul 28, 2010 11:38 am

TMrox wrote:Dear Dr Sclafani,

Thanks so much for all your enthusiasm, knowledge and the hard work you have vested in us. I wish there were more docs like you.

I have a question regarding the article below. Do the occlusion of jugular veins to treat cancer patients really resemble anything like having CCSVI?

Many thanks,
Rox

In well-documented cases of venous hypertension created by the presence of a high flow lesion such as dural Arteriovenous (AV) fistula, any spinal cord lesions present on MRI have very different characteristics from a demyelinating plaque. The former feature is a significant edematous swelling involving the whole segment of the spinal cord and not a single lesion in the posterior columns.


there are many differences:
1. most cancer patients are older, die sooner, have other problems
2. cancer patients are not likely to have the associated vertebral vein, and azygous vein outflow obstruction
3. The plaque is not the problem anyway. it is the slow flow and reflux

I dont want to speak too much about this here, as i have been asked to rebut it in print

Firstly ccsvi is not a pressure problem. even with obstruction pressure goes up only marginally and after liberation is reduced only fractionally.
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Postby drsclafani » Wed Jul 28, 2010 11:46 am

siduri wrote:Hi Dr. Sclafani - I am still feeling shock & awe that after 30 years of losing ground, drawing on hope, denial, and fantasy, I now feel empowered! I’ve never before seen such intellectual curiosity, professional passion, and human compassion directed at something that could help ME. Thank you so much for bringing all of your beautiful brains together.

I'm on waiting lists for you & Dr. Siskin, and since I'm coming from Alaska, am wondering about follow up care. If I have treatment with one dr and find someone closer that could do follow up care, is there a feeling of ownership - stay out of another drs territority - in this field? Don't take me off your list! I'll fly to NY every 3 months if I have to, but I haven't seen this question discussed before.


this really depends upon the expertise you want and the ability of the local to help out. If your local were to develop expertise, you might want to switch. And although I love continuous care for my patients, i would be happy to have you avoid the frequent flyer miles if i thought the care would be at least as good as my own, hopefully better. However I would like to be kept abreast for my own knowledge and because i care about my patients.

This thread is fascinating with the information it shares and ideas it inspires. Nothing else could keep me up reading to 3am like this has, but I think it should be turned into a book. Cece, aren't you a novelist? ;)
Sue[/quote]

yes, i have thought about it too. this would make a good novel, perhaps even a movie. cece, interested?
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Postby drsclafani » Wed Jul 28, 2010 12:04 pm

TMrox wrote:Dear Dr Sclafani,

Sorry to ask two questions in one day.

Here is a 1969 article on occluded azygous vein and the value of azygography to evaluate the effectiveness of radiation therapy for cancer treatment. Have you seen this article?

http://www.ajronline.org/cgi/reprint/105/1/83.pdf

I have no idea what the article means by opening a previously occluded azygous. How did the docs open the occluded vein back in 1969? Is this kind of obstructions what we we are seeing in CCSVI?

Sorry if it this turns completely irrelevant.

Rox


rox
do not apologize for asking questions. apologize for not asking them.

that paper is speaking about cancers that wrap around the azygous vein and cause it to occlude. This was considered in 1969 to be a contraindication to surgical treatment. the authors were trying to determine if radiation therapy could "melt" the tumor and make tumors more resectable.

i enjoyed the paper because it showed how different the vein looks with cancer treatment and ccsvi.

by the way, they visualized the azygous vein without a catheter. They stuck a big needle in the rib and injected contrast media.

We have come a long way
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Postby TMrox » Wed Jul 28, 2010 12:21 pm

Dear Dr Sclafani,

As always I enjoyed reading your answers. I’m looking forward to reading your reply in print to the endovascular venous procedure article. We need more dialogue in print among docs.

I wonder how the cancer patients of the 1969 article felt with their azygous vein occluded by a tumour. I now understand that it is a different kind of occlusion to the one we have with CCSVI, but still curious if they shared any of the CCSVI symptoms. Well I might never know that answer so I’ll instead focus on the unfolding CCSVI research.

Many thanks,
Rox
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby Cece » Wed Jul 28, 2010 12:37 pm

drsclafani wrote:yes, i have thought about it too. this would make a good novel, perhaps even a movie. cece, interested?

Ok, if I think about it, there are a few ways to imagine such a novel. It is very 'Gone With the Wind' in terms of being the end of an era and the start of a new one.
Last edited by Cece on Wed Jul 28, 2010 3:33 pm, edited 2 times in total.
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Postby drsclafani » Wed Jul 28, 2010 12:44 pm

TMrox wrote:Dear Dr Sclafani,

As always I enjoyed reading your answers. I’m looking forward to reading your reply in print to the endovascular venous procedure article. We need more dialogue in print among docs.

I wonder how the cancer patients of the 1969 article felt with their azygous vein occluded by a tumour. I now understand that it is a different kind of occlusion to the one we have with CCSVI, but still curious if they shared any of the CCSVI symptoms. Well I might never know that answer so I’ll instead focus on the unfolding CCSVI research.

Many thanks,
Rox


i would think that the patient felt short of breath and perhaps regretted smoking so long.

CCSVI generally requires that there be two outflow obstructions, not one. azygous alone might not be enough
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