DrSclafani answers some questions

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

Postby marcstck » Mon Jun 28, 2010 7:32 pm

Very interesting. I was diagnosed with low thyroid function about two years before I was diagnosed with MS. Nothing like an elegant theory to clear things up...

Dr. S., will Holly call me regarding setting up a sonogram with Dr. Zinn?
Last edited by marcstck on Mon Jun 28, 2010 8:30 pm, edited 1 time in total.
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Re: Case Reports

Postby Cece » Mon Jun 28, 2010 8:28 pm

drsclafani wrote:There are many reports of dural sinus and internal jugular vein thrombosis treated by thrombolysis and angioplasty with improvement. However, i do not recall that any that i have read were in patients with MS

Here are some incidences of CVT and MS, I'm not sure if any of them were treated by angioplasty:
8. Vandenberghe N, Debouverie M, Anxionnat R, et al. Cerebral venous thrombosis in four patients with multiple sclerosis. Eur J Neurol. 2003;10:63-66.
9. Malanga GA, Gangemi E. Intracranial venous thrombosis in a patient with multiple sclerosis: a case report and review of contraceptive alternatives in patients with disabilities. Am J Phys Med Rehabil. 1994;73:283-285.
10. Al Bunyan M, Ogunniyi A. Incidental cerebral venous thrombosis in a patient with multiple sclerosis. J Neurol Sci. 1997;149:191-194.
11. Gunal DI, Afsar N, Tuncer N, Aktan S. A case of multiple sclerosis with cerebral venous thrombosis: the role of lumbar puncture and high-dose steroids. Eur Neurol. 2002;47:57-58.
5. Albucher JF, Vuillemin-Azais C, Manelfe C, et al. Cerebral thrombophlebitis in three patients with probable multiple sclerosis: role of lumbar puncture or intravenous corticosteroid treatment. Cerebrovasc Dis. 1999;9:298-303.
6. Stolz E, Klotzsch C, Schlachetzki F, Rahimi A. High-dose corticosteroid treatment is associated with an increased risk of developing cerebral venous thrombosis. Eur Neurol. 2003;49:247-248.
3. Städler C, Vuadens P, Dewarrat A, et al. Cerebral venous thrombosis after lumbar puncture and steroids in two patients with multiple sclerosis [in French]. Rev Neurol (Paris). 2000;156:155-159.

13. Cerebral Venous Thrombosis Following High-Dose Corticosteroid Therapy in a Patient With Relapsing Multiple Sclerosis
November 1, 2007
Contributed by Kenneth M. Sicard, MD, PhD, and Marc Fisher, MD

This is the one I found most interesting, it identifies it as a case of central venous thrombosis (as identified by MRV) in a RR MSer following a course of corticosteroids. They treated it with warfarin.

"The finding of CVT in this case was rather intriguing because it did not present with any of the usual symptoms.1 There was no history of headache, papilledema, seizures, altered level of consciousness, focal neurological deficits, or meningeal signs. Asymptomatic CVT is a well-recognized entity. What makes this case unusual, however, is that our investigation did not reveal features compatible with any of the common causes that are observed in approximately 25% to 35% of cases."

Could this be a case of CCSVI misidentified as a CVT???

Here is how they diagnosed it: "A follow-up brain magnetic resonance venogram (MRV) at 1.5 T a few days later showed no flow-related enhancement within the left transverse and sigmoid sinuses, strongly suggestive of CVT (Figure 2)." (Or suggestive of CCSVI?) They failed to follow up with a second MRV after the treatment with warfarin.

"A recent study by Stolz and colleagues6 showed that acute CVT developed in 5% of a cohort of 120 patients during intravenous corticosteroid treatment for relapse of a definite MS. Strikingly, this rate is as high as that expected in protein C or S deficiency."

The link: http://www.psychiatrictimes.com/display/article/10168/56831

If corticosteroids increase the chance of CVT and retrograde flow increases the chance of CVT, then that strengthens the argument that we should be treated?
"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: Case Reports

Postby hope410 » Mon Jun 28, 2010 8:34 pm

Cece wrote:If corticosteroids increase the chance of CVT and retrograde flow increases the chance of CVT, then that strengthens the argument that we should be treated?


Well, your entire post strengthens the argument for the publication of case reports. :lol:
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Postby Drury » Mon Jun 28, 2010 8:35 pm

Wow Cece,

You are amazing - how do you find this info? I have a hard time just navigating this website.

Thank you for all your hard work and research
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Postby Cece » Mon Jun 28, 2010 8:42 pm

This is very quick validation, I am addicted. :)

I couldn't find anything at PubMed, so I googled "jugular thrombosis mulitple sclerosis", the Psychiatric Times article came up, and the rest is copied from the references of that article...if anyone wants to follow the link and look at Fig 2, it sure does look like CCSVI?
"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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Postby Drury » Mon Jun 28, 2010 8:55 pm

So if I understanding it right steroids might be detrimental to some people and may actually cause CCSVI?
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CCSVI AND CD OF VENOGRAM

Postby ACE » Mon Jun 28, 2010 8:55 pm

Dear Dr Sclafani.... my name is Alexander I am a Dr of Osteopathy and have MS I have been very prominent in helping to bring the required Scanning protocols, and initiating CCVSI treatment in Sydney Australia.
I recently had Angioplasty performed on my RIJ and LIJ however the effects were to only last 3 day's after which time I knew that they had re-stenosed again. Why I am writing to you is because speaking to the IR who performed my procedure I have noted that in the 20 or so cases he has treated that he has not found one Azygos problem, and after reading your thread in This is MS I was very keen to send you my CD of the venogram so as to have your take on the Azygos and the Jugulars, incidentally he said that the stenoses on my Jugulars was high up near my CI, which also got me thinking about your theory that the true stenosis happens around the Confluence.....anyway I would be most appreciative if you would be so kind as to look at my Venogram and give me your opinion.
Yours sincerely Alexander
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Postby Cece » Mon Jun 28, 2010 9:14 pm

Drury wrote:So if I understanding it right steroids might be detrimental to some people and may actually cause CCSVI?
Drury

Not exactly...ccsvi is probably something we're born with. Steroids would increase the risk of a blood clot (thrombosis). Ccsvi already increases the risk of a blood clot too. The risks would aggregate. I'm really pulling this all together, I can't say for sure. As long as you don't get a blood clot, steroids are beneficial, not detrimental; they're proven to help stop a MS exacerbation, and they are given to protect the brain when people have strokes.

More evidence for the case report above actually being CCSVI and not CVT: CVT is supposed to feel like a post-lumbar-tap headache!! I had that, it was off-the-charts bad! The guy in that case report specifically denied having a headache.
http://www.irlin.com/arthur/library/IntracranialVenousThrombosis.pdf
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Postby drsclafani » Mon Jun 28, 2010 9:24 pm

marcstck wrote:Very interesting. I was diagnosed with low thyroid function about two years before I was diagnosed with MS. Nothing like an elegant theory to clear things up...

Dr. S., will Holly call me regarding setting up a sonogram with Dr. Zinn?


yes
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Postby Drury » Mon Jun 28, 2010 9:26 pm

Oops sorry Dr.S. forgot this was your site.

Thanks Cece

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Re: Case Reports

Postby drsclafani » Mon Jun 28, 2010 9:30 pm

Cece wrote:
drsclafani wrote:There are many reports of dural sinus and internal jugular vein thrombosis treated by thrombolysis and angioplasty with improvement. However, i do not recall that any that i have read were in patients with MS

Here are some incidences of CVT and MS, I'm not sure if any of them were treated by angioplasty:
8. Vandenberghe N, Debouverie M, Anxionnat R, et al. Cerebral venous thrombosis in four patients with multiple sclerosis. Eur J Neurol. 2003;10:63-66.
9. Malanga GA, Gangemi E. Intracranial venous thrombosis in a patient with multiple sclerosis: a case report and review of contraceptive alternatives in patients with disabilities. Am J Phys Med Rehabil. 1994;73:283-285.
10. Al Bunyan M, Ogunniyi A. Incidental cerebral venous thrombosis in a patient with multiple sclerosis. J Neurol Sci. 1997;149:191-194.
11. Gunal DI, Afsar N, Tuncer N, Aktan S. A case of multiple sclerosis with cerebral venous thrombosis: the role of lumbar puncture and high-dose steroids. Eur Neurol. 2002;47:57-58.
5. Albucher JF, Vuillemin-Azais C, Manelfe C, et al. Cerebral thrombophlebitis in three patients with probable multiple sclerosis: role of lumbar puncture or intravenous corticosteroid treatment. Cerebrovasc Dis. 1999;9:298-303.
6. Stolz E, Klotzsch C, Schlachetzki F, Rahimi A. High-dose corticosteroid treatment is associated with an increased risk of developing cerebral venous thrombosis. Eur Neurol. 2003;49:247-248.
3. Städler C, Vuadens P, Dewarrat A, et al. Cerebral venous thrombosis after lumbar puncture and steroids in two patients with multiple sclerosis [in French]. Rev Neurol (Paris). 2000;156:155-159.

13. Cerebral Venous Thrombosis Following High-Dose Corticosteroid Therapy in a Patient With Relapsing Multiple Sclerosis
November 1, 2007
Contributed by Kenneth M. Sicard, MD, PhD, and Marc Fisher, MD

This is the one I found most interesting, it identifies it as a case of central venous thrombosis (as identified by MRV) in a RR MSer following a course of corticosteroids. They treated it with warfarin.

"The finding of CVT in this case was rather intriguing because it did not present with any of the usual symptoms.1 There was no history of headache, papilledema, seizures, altered level of consciousness, focal neurological deficits, or meningeal signs. Asymptomatic CVT is a well-recognized entity. What makes this case unusual, however, is that our investigation did not reveal features compatible with any of the common causes that are observed in approximately 25% to 35% of cases."

Could this be a case of CCSVI misidentified as a CVT???

Here is how they diagnosed it: "A follow-up brain magnetic resonance venogram (MRV) at 1.5 T a few days later showed no flow-related enhancement within the left transverse and sigmoid sinuses, strongly suggestive of CVT (Figure 2)." (Or suggestive of CCSVI?) They failed to follow up with a second MRV after the treatment with warfarin.

"A recent study by Stolz and colleagues6 showed that acute CVT developed in 5% of a cohort of 120 patients during intravenous corticosteroid treatment for relapse of a definite MS. Strikingly, this rate is as high as that expected in protein C or S deficiency."

The link: http://www.psychiatrictimes.com/display/article/10168/56831

If corticosteroids increase the chance of CVT and retrograde flow increases the chance of CVT, then that strengthens the argument that we should be treated?


great job cece

perhaps we should change the name of this forum to DrCece answers some questions!

this does give some justification that failure to treat could lead to bigger problems. I used this argument in my IRB proposal but they could not get past the MS. Some people just cannot see ccsvi as its own entity. the MS always gets pulled into it
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Postby drsclafani » Mon Jun 28, 2010 9:33 pm

Drury wrote:Oops sorry Dr.S. forgot this was your site.

Thanks Cece

Drury


dr cece is doing a great job, although periodically someone complains about her " intrusions".

i just like the back and forth, exchange of ideas and your keen intellects
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Re: CCSVI AND CD OF VENOGRAM

Postby drsclafani » Mon Jun 28, 2010 9:37 pm

ACE wrote:Dear Dr Sclafani.... my name is Alexander I am a Dr of Osteopathy and have MS I have been very prominent in helping to bring the required Scanning protocols, and initiating CCVSI treatment in Sydney Australia.
I recently had Angioplasty performed on my RIJ and LIJ however the effects were to only last 3 day's after which time I knew that they had re-stenosed again. Why I am writing to you is because speaking to the IR who performed my procedure I have noted that in the 20 or so cases he has treated that he has not found one Azygos problem, and after reading your thread in This is MS I was very keen to send you my CD of the venogram so as to have your take on the Azygos and the Jugulars, incidentally he said that the stenoses on my Jugulars was high up near my CI, which also got me thinking about your theory that the true stenosis happens around the Confluence.....anyway I would be most appreciative if you would be so kind as to look at my Venogram and give me your opinion.
Yours sincerely Alexander




Thanks, actually i would love to see your images if you would allow it. Would you permit me to use them in an atlas of the imaging appearance of CCSVI? It would so help new doctors learning to perform liberation and help patients, neurologists and others to recognize that this is the face of CCSVI, something real.

The inexperienced doctors are now so ill-prepared to see what is going on when they are working . Each has few images to prepare themselves for their liberation procedures. Some of the findings are subtle, some are confusing and some I wouldn't have recognized if I hadn't seen them before. As a result, they are overlooked, underestimated and misinterpreted.

I want to create a teaching atlas of the images of CCSVI. As long as i am grounded, i might as well make myself useful. Would you be interesting in sharing toward something like that?
Of course, there would be no identifying marks on images I put in the Atlas, no names, no dates, no hospital or doctor.. .Everything would be anonymous, unless you would like to be named as a contributor.
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Postby drsclafani » Mon Jun 28, 2010 9:38 pm

Cece wrote:This is very quick validation, I am addicted. :)

I couldn't find anything at PubMed, so I googled "jugular thrombosis mulitple sclerosis", the Psychiatric Times article came up, and the rest is copied from the references of that article...if anyone wants to follow the link and look at Fig 2, it sure does look like CCSVI?


you are doing great without my advice. but here is some advice

tryh scholar.google.com scientific articles
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Postby drsclafani » Mon Jun 28, 2010 9:39 pm

marcstck wrote:Very interesting. I was diagnosed with low thyroid function about two years before I was diagnosed with MS. Nothing like an elegant theory to clear things up...

Dr. S., will Holly call me regarding setting up a sonogram with Dr. Zinn?


marc
want to co-author an atlas on imaging of CCSVI?
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