DrSclafani answers some questions

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

Re: DrSclafani answers some questions

Postby pelopidas » Wed Oct 12, 2011 11:12 am

HappyPoet, i have always been one of your followers. I was waiting for your evaluation. Please stay online.
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Re: DrSclafani answers some questions

Postby HappyPoet » Wed Oct 12, 2011 12:18 pm

Oh my ... thank you, each of you.
My cogfog is as Cece described. When my fog completely clears, my posts will be back.
In the meantime, a new question has been asked (I think, lol).
Good luck to all. :smile:
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Re: DrSclafani answers some questions

Postby CindyCB » Wed Oct 12, 2011 1:11 pm

drsclafani wrote:sorry hp, i misled you. All three of those images are of the same person, the nonMS patient with ccsvi manifesting with cogfog and chronic fatigue. I would not think that his disability is any less than a PwMS. he cannot function at all. He is unhappy and struggling with no one telling him how he can get well.


This sounds a lot like my case (I have a hypoplastic RIJV also), no MS, extreme cogfog, crushing fatigue - I also have numbness, altered sensations and pain in the form of nerve pain, headaches and migraine (history of migraine since I was a child, I was dropped on my head aged 3, wonder if that's relevant?).

I do hope you were able to help him.
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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Re: DrSclafani answers some questions

Postby Cece » Wed Oct 12, 2011 4:37 pm

In this case, was the hypoplastic jugular the only CCSVI finding? Or were there problematic valves too?
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Re: DrSclafani answers some questions

Postby drsclafani » Thu Oct 13, 2011 5:55 am

Cece wrote:In this case, was the hypoplastic jugular the only CCSVI finding? Or were there problematic valves too?

the left dural sinus was small and i could not get a catheter into the right dural sinus, just a guidewire, so i wonder whether both canals were small from birth
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Re: DrSclafani answers some questions

Postby Cece » Thu Oct 13, 2011 10:38 am

drsclafani wrote:But the question of the three was in a comparison of the mother, son and Pw/oMS

Image

which of these three do you think would have the worst symptoms

To put aside thoughts of total outflow and look just at these three images, I would say the one on the left looks the worst. The only saving grace that I can see are the large collaterals in the background. Comparing the two on the right is trickier. The son's venogram has that very tight stenosis on top, but then is wide in the middle, while the mom's is narrow all the way down. If you're only as good as your weakest link, the son's definitely has that weakest link with the up-high hypoplastic section.

I'd rank them in this order, from worst to best:
p w/o MS
son's
mom's

Small dural sinuses, hypoplastic jugular! The patient may have an answer now for where his problems are from, but no solution? And if we have isolated someone with no MS but with CCSVI, will he go on to develop MS lesions? Or, if there is an autoimmune component, does he represent someone without the specific genetic susceptibility and immune-gene-abnormalities that are more commonly found in MS patients?

He has my sympathy for what he must go through day-to-day with his symptoms, and he would be welcome here among fellow pwCCSVI.
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Re: DrSclafani answers some questions

Postby CindyCB » Thu Oct 13, 2011 1:07 pm

Does it not go that if you have one hypoplastic vein as long as the *other* one is working well, there is no problem? Just wondering for myself as my neuro told me on my original MRV (brain only of course) that my left side all looked strong so that's fine and the right side won't be causing my symptoms, even if it is very small.

Of course I now know that further down the veins I have problems on both sides, so not so simple...

For the chap with small veins on both sides... how long has he been ill? If he was born this way has he always been symptomatic?

Can veins become hypoplastic or are that way from the start?
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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Re: DrSclafani answers some questions

Postby pelopidas » Thu Oct 13, 2011 2:07 pm

Hypoplastic veins are that way from the start . Hypoplastic means underdeveloped, it's a greek term.
As for the case, i think what Cece thinks!
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Re: DrSclafani answers some questions

Postby Cece » Fri Oct 14, 2011 5:51 pm

Angioplasty is a greek term too, I think.
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Re: DrSclafani answers some questions

Postby LiveFree » Sat Oct 15, 2011 12:50 pm

Hey Dr. Sclafani

I'm relatively new here. Have been a lurker since being diagnosed w/MS in May 2011.

Anyway, I hopefully have a real simple question for you.What percentage of patients that you've treated have had issues with their Azygous?
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Re: DrSclafani answers some questions

Postby NZer1 » Sat Oct 15, 2011 4:25 pm

Thanks for your Magic with Frances Dr.

Now I'm nosey and don't want to pester her with my questions so I thought I would ask you instead :lol:

*It sounds like a 'standard' case in regard to Jugs and a twist with valves for the Azygos?

*Were there other areas that were of interest/concern?

*The work done here (NZ) I am guessing will have not had detrimental effect being under ballooned?

*Big question now, what is the likely hood of needing further treatments?

*I am guessing that you get an indication of difficulty to correct that correlates to need for retreating?

*How much effect on overall drainage will there be with what you have found and is it likely to be a case of wait and heal for improvements?

*Verts and Lumbars OK? My interest is how one flow eg. suprine can be delayed and the other must surely be hindered as well by the compensation, or bypassing, even if there is no visible obstruction, the extra volume due to compensation must have an effect on through put in general.

*Did using IVUS make the difference in this case?

Thanks Dr., it's a great feeling to know you have given her your best!

Regards Nigel
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Re: DrSclafani answers some questions

Postby drsclafani » Sat Oct 15, 2011 4:58 pm

I am asked a lot of questions here, as you all know.

This question did not make the board, but is so incredible, i thought i would share it. anonymously as usual.

The patient is a 32 year old male with chief complains of numbness from belly down both legs and on the tips of four fingers of the left hand. This is associated with chronic fatigue, occasional vertigo, imbalance ("almost always", heat intolerance, occasional pain in the legs, weakness and spasticity in both legs and abdominal musculature,necessitating the use of canes. He had bowel and bladder problems as well.

Here is his question (unedited)

ps...paddling is not some bondage thing....it is kayaking



Sorry I forgot to send you an email for my 5th month followup....
so, here's my 5month and a half email...

Everything is good,
last week I had a small headhaches, but I had a huge indigestion in the same time... eaten something that doesnt pass... Anyway...

So, beside that, no fatigue, no headhaches, legs getting slowly stronger as I'm taking stairs way more often than before... it's a slow recovery
Still paddling once a week even if it's getting cold here, and I have a good question for you about paddling..
I think I will be the first in your entire carreer to ask you this...

at this time of the season, the water is getting colder. This is not bottering me a lot, for this season, but in the past, I was starting my paddling season realy early, somewhere at the beginning of april. at this moment we have to use a Dry Top, because the water is deadly cold. To prevent water to get inside, a drytop is build with silicon Gaskets at the wrist and The neck and normaly, it put a lot of pressure. We even stretch new one with a football for months before using it, or it choke to much.

I dont feel confident about adding pressure at my neck for the moment, so I will finish the season with only a wetsuit(yeah i'm crasy) but do you think next april, (so 12months after my procedure) it will be safe to use this kind of gear?
or do you think it could hurt veins, or even valves, to wear this kind of stuff? I was wondering if strong neck pressure can break a valve or something...



what a dilemna! i would never have imagined this patient asking details regarding white water kayaking!!!
my sense is that this would not be a good idea to compress his jugular veins.
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Re: DrSclafani answers some questions

Postby Cece » Sat Oct 15, 2011 7:22 pm

NZer1 wrote:Thanks for your Magic with Frances Dr.

Now I'm nosey and don't want to pester her with my questions so I thought I would ask you instead :lol:

If he answers, would it not be a HIPAA violation?? Step carefully....

(And congrats to your friend!)
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Re: DrSclafani answers some questions

Postby Cece » Sat Oct 15, 2011 8:18 pm

drsclafani wrote:what a dilemna! i would never have imagined this patient asking details regarding white water kayaking!!!
my sense is that this would not be a good idea to compress his jugular veins.

It would seem to be a good sort of dilemma to have! He sounds like he is doing great.
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Re: DrSclafani answers some questions

Postby drsclafani » Sat Oct 15, 2011 9:10 pm

CindyCB wrote:Does it not go that if you have one hypoplastic vein as long as the *other* one is working well, there is no problem? Just wondering for myself as my neuro told me on my original MRV (brain only of course) that my left side all looked strong so that's fine and the right side won't be causing my symptoms, even if it is very small.

Of course I now know that further down the veins I have problems on both sides, so not so simple...

For the chap with small veins on both sides... how long has he been ill? If he was born this way has he always been symptomatic?

Can veins become hypoplastic or are that way from the start?


actually,i have been unable to predict just about anything from the appearance of the veins, the location of the stenoses, which veins were involved, etc etc

it seems to me that there are many cofactors that make a patient have symptoms...in this case, i thought the patient without ms had the worst venographic appearance and he appears to have pure ccsvi symptoms: cog fog and headaches. The worse clinical situation was the son with the severe cerebellar tremors, yet his venous disease was actually less severe than his mother who also had a nutcracker syndrome

That was the point i was getting to
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