DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Nunzio
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Post by Nunzio » Tue May 03, 2011 5:52 am

WeWillBeatMS wrote:
drsclafani wrote:
WeWillBeatMS wrote:Dr. Sclafani,

Are the external jugular veins also tested for CCSVI? I know that they have not proven to be a regular problem but what about for the people like myself who have lost hearing in one ear? And at times even my good ear rings and pops and feels plugged like my bad one does all of the time.

WeWillBeatMS
The external jugular drains the face and scalp. I do not study these veins and i do not think these veins are the first line of action, perhaps they take on a greater potential when the internal jugular cannot be opened or has clotted off.
OK. So which veins are responsible for draining the ears?
It doesn't matter; it is similar to somebody with foot drop that wants to know what vein drains the foot.
Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />

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Post by NZer1 » Tue May 03, 2011 2:18 pm

Novantrone-

Black box warning-

your heart:

Cardiotoxicity: Congestive heart failure (CHF), potentially fatal, may occur either during therapy with NOVANTRONE® or months to years after termination of therapy. Cardiotoxicity risk increases with cumulative NOVANTRONE dose and may occur whether or not cardiac risk factors are present. Presence or history of cardiovascular disease, radiotherapy to the mediastinal/pericardial area, previous therapy with other anthracyclines or anthracenediones, or use of other cardiotoxic drugs may increase this risk.



http://ms.about.com/od/treatments/a/Wha ... -Drugs.htm

Can anyone shed some light on this regarding Angio treatment please,
Thanks Nigel

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Johnson
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Post by Johnson » Tue May 03, 2011 4:54 pm

Nunzio wrote:
WeWillBeatMS wrote:
drsclafani wrote:The external jugular drains the face and scalp. I do not study these veins and i do not think these veins are the first line of action, perhaps they take on a greater potential when the internal jugular cannot be opened or has clotted off.
OK. So which veins are responsible for draining the ears?
It doesn't matter; it is similar to somebody with foot drop that wants to know what vein drains the foot.
It matters to those of us who are deaf in one ear, and intuit the connection.

There have been a couple report better aural function - I think it was Badger who realized he could hear again. There are others have reported improvement, and I had change, if not very slight improvement. My sense is that congestion fosters more congestion, in more places - like the ear.
My name is not really Johnson. MSed up since 1993

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WeWillBeatMS
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Post by WeWillBeatMS » Tue May 03, 2011 6:13 pm

Nunzio wrote:
WeWillBeatMS wrote:
drsclafani wrote:The external jugular drains the face and scalp. I do not study these veins and i do not think these veins are the first line of action, perhaps they take on a greater potential when the internal jugular cannot be opened or has clotted off.
OK. So which veins are responsible for draining the ears?
It doesn't matter; it is similar to somebody with foot drop that wants to know what vein drains the foot.
?

WeWillBeatMS

Cece
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Post by Cece » Tue May 03, 2011 9:01 pm

If the hearing issues are neurological, it wouldn't have to do with the ear; it would be wherever the hearing center in the brain is and if that has sustained damage from MS. Same as my foot drop not having much to do with my foot but with what remains of a former lesion on my cervical spine. I think that is what Nunzio meant.

I seem to remember Dr. Sclafani entering the external jugular to get an image of the area to help him find the entrance to the internal jugular in a patient -- can't remember who, this would've been last fall, I think. So the external jugular is of a size that the catheter can enter. I am thinking in comparison to the vertebral veins, which cannot be ballooned due to size.

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dania
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BLOCKED VEINS

Post by dania » Wed May 04, 2011 10:14 am

Dr Sclafani, I have had 5 procedures. With the first one had immediate improvements but they were short lived. Dr Siskin and Dr Arata were the last 2 doctors that tried to help me but were unable as all 3 veins are now blocked with scarring. The 1 stent I have, is now pinched and bent at one end. I am desperatly searching for a doctor that can do a vein bypass. With zero blood flow in the 3 veins I am rapidly deteriorating. My left side is almost paralysed. Are you aware of any doctor that can help me?

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American Access Care no longer treating CCSVI

Post by cowboystew » Wed May 04, 2011 11:39 am

Dr. S,
Maybe you can shed some light on American Access Care and their decision to no longer offer treatment of CCSVI. I was scheduled for scans and treatment next week. I received a phone call this morning from AAC (a man named Frank Higgins) informing me that my insuraqnce is refusing to pay. On further investigation, a rep from my husband's job who deals with our insurance (Blue Cross/Blue Shield) found that American Access Care is no longer treating CCSVI on patients with MS. Is this accurate? I'm so dissapointed that I cannot be treated. ~Nancy

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Post by Cece » Wed May 04, 2011 11:48 am

Nancy, check out this thread: www.thisisms.com/ftopict-16437.html including the link from newlywed4ever to the policy document from Blue Cross Blue Shield. BCBS is saying that CCSVI treatment for MS is an investigational treatment that they won't pay for.

Dr. Sclafani did post in that thread that he is still treating patients but that asap is a good idea. "Canada may be arriving" -- not not not good for us. Right now BCBS is the only insurance company affected by this. But how long will that last. :(

I am very sorry to hear of your disrupted plans for next week's procedure.

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Nunzio
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Post by Nunzio » Wed May 04, 2011 1:22 pm

WeWillBeatMS wrote:
Nunzio wrote:
WeWillBeatMS wrote:
OK. So which veins are responsible for draining the ears?
It doesn't matter; it is similar to somebody with foot drop that wants to know what vein drains the foot.
?

WeWillBeatMS
Cece already clarified my answer (thanks Cece)
what I meant to say is that since your hearing is controlled from the superior aspect of the temporal cortex which is part of your brain, than the internal jugular and vertebral veins are the ones involved; it doesn't matter if the external hear is drained by the external jugular vein.
Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />

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Johnson
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Post by Johnson » Wed May 04, 2011 3:47 pm

Nunzio wrote:(redacted)
Cece already clarified my answer (thanks Cece)
what I meant to say is that since your hearing is controlled from the superior aspect of the temporal cortex which is part of your brain, than the internal jugular and vertebral veins are the ones involved; it doesn't matter if the external hear is drained by the external jugular vein.
Ah. I finally understand why Doc Sclafani rhetorically asked who cares. In 19 days, I hope to lose this fog.

It now makes sense why people are reporting improvements in hearing after PTA.

Thanks Nunzio.
My name is not really Johnson. MSed up since 1993

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Post by LittleMissT » Wed May 04, 2011 7:05 pm

Hello Dr. Sclafani,

You are awesome. First time poster and I'm looking for a little understanding.

My 6 month follow up doppler (Barrie,ON) concludes "an element of abnormal flow in the deep cerebral veins". The IJV's were normal weirdly as I am experiencing cognition issues, headaches, wrenching neck pain, periodic ringing in the ear, inflamed optic nerve overall body weakness, less coordination..etc.

Are the DCV's treatable?

Could the vertebral veins cause this abnormal flow? I ask because I've had 3 dopplers prior to the this and not once was there a mention of abnormal DCV flow.

I've also had an MRV of my head 1 month before my angioplasty Sept. 2010 and it was unremarkable mind you it wasn't interpreted by a ccsvi expert. I am concerned. I am symptomatic. I want round two and so any advise I'd be over the top grateful.

Lastly, when I'm vertical I notice the neck/head pain cumulating (even bloodshot eyes) and I get relief in supine. Is there a reliable test that investigates whether or not its my neck muscles impeding the VV function when upright?

Okeee dokee,
Thanks for your patients and time and sorry if I've repeated a topic.

Little Miss T

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drsclafani
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Post by drsclafani » Wed May 04, 2011 7:35 pm

Mathd wrote:Hi DrS

from what you seen, what's the frequency of obstruction in the Illiac veins?
You realy surprised me when you balooned my illiac because I was thinking that will be higher! and is a valve was the problem with this vein too??
Obstruction of the iliac vein is not particularly common perhaps about 5% of patients, maybe less. there are a few kinds of iliac obstructions
1. the may thurner syndrome, which is a compression type obstruction of the left common iliac vein where the aorta crosses over the vein
2. compression by fibroids
3. duplication of the common or external iliac vein
4. hypoplasia of the common or external iliac vein.
5. Septum in the vein
i considered your problem to be a septum, that is, a longitudinal tissue band that divided the vein into two segments. surprisingly, it seemed to respond better than i imagined to simple angioplasty.

The significance of this obstruction is this: If the iliac vein is obstructed, all the blood flow draining the leg and part of the pelvis is impeded. This results in blood draining through collaterals circuits. one is the ascending lumbar vein which drains into the azygous via the hemiazygous vein. You can imagine what could happen if the azygous is also blocked. drainage of the spine becomes that much more complicated.
and what can cause valve problem? it is genetic?
it is thought to be congenital occuring in fetal development when the immature venous system (Cardinal system) transforms into the adult system.

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drsclafani
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Post by drsclafani » Wed May 04, 2011 7:56 pm

WeWillBeatMS wrote:
drsclafani wrote:
WeWillBeatMS wrote:Dr. Sclafani,

Are the external jugular veins also tested for CCSVI? I know that they have not proven to be a regular problem but what about for the people like myself who have lost hearing in one ear? And at times even my good ear rings and pops and feels plugged like my bad one does all of the time.

WeWillBeatMS
The external jugular drains the face and scalp. I do not study these veins and i do not think these veins are the first line of action, perhaps they take on a greater potential when the internal jugular cannot be opened or has clotted off.
OK. So which veins are responsible for draining the ears?

WeWillBeatMS
there are very small veins that drain the blood from the ears. the external ear drains into the posterior and anterior auricular veins which drain into external or anterior jugular veins. the middle ear and the inner ear have very small tributaries that ultimately drain into petrosal sinuses

there are disabilities that can be related to venous obstructions, including collateral circuits that traverse close to ear structures. however, i believe that hearing loss may be related to cerebral cortical damage more frequently.

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drsclafani
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Post by drsclafani » Wed May 04, 2011 7:59 pm

Johnson wrote:
Nunzio wrote:
WeWillBeatMS wrote:
OK. So which veins are responsible for draining the ears?
It doesn't matter; it is similar to somebody with foot drop that wants to know what vein drains the foot.
It matters to those of us who are deaf in one ear, and intuit the connection.

There have been a couple report better aural function - I think it was Badger who realized he could hear again. There are others have reported improvement, and I had change, if not very slight improvement. My sense is that congestion fosters more congestion, in more places - like the ear.
stuffy ears are more likely due to inflammation of the throat, rather than venous congestion. of course one could get swelling of the tissue of the throat around the eustacian canal but this is a reach, in my opinion.
but i am willing to listen and think

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Re: BLOCKED VEINS

Post by drsclafani » Wed May 04, 2011 8:02 pm

dania wrote:Dr Sclafani, I have had 5 procedures. With the first one had immediate improvements but they were short lived. Dr Siskin and Dr Arata were the last 2 doctors that tried to help me but were unable as all 3 veins are now blocked with scarring. The 1 stent I have, is now pinched and bent at one end. I am desperatly searching for a doctor that can do a vein bypass. With zero blood flow in the 3 veins I am rapidly deteriorating. My left side is almost paralysed. Are you aware of any doctor that can help me?
do you have any flow in any veins? what about obove the stents, is there flow there.

i do not have anyone in mind who would attempt this treatment by bypass

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