DrSclafani answers some questions

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

Postby Drury » Mon Aug 30, 2010 4:00 pm

Thank you vivave for you input - much appreciated.

Drury
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Postby Rosegirl » Mon Aug 30, 2010 4:38 pm

2. Someone on this website posted a theory that patients whose MS symptoms come, go, and change frequently (even minute-to-minute sometimes) probably have either a periodically sticky flap/membrane or a periodically functioning valve in the internal jugulars that causes reflux sometimes, but not consistently. Do you think this theory make sense?


it is a plausible explanation.

Hi, it's Rosegirl. I was the one who asked about rapid, intermittent symptoms. Dr. Sclafani, I sent you a CD with images from my venogram so maybe you can comment based upon them. It's been eight weeks since the procedure and, other than feet that are no longer purple, there are no changes.
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Postby drsclafani » Mon Aug 30, 2010 9:16 pm

Rosegirl wrote:
2. Someone on this website posted a theory that patients whose MS symptoms come, go, and change frequently (even minute-to-minute sometimes) probably have either a periodically sticky flap/membrane or a periodically functioning valve in the internal jugulars that causes reflux sometimes, but not consistently. Do you think this theory make sense?


it is a plausible explanation.

Hi, it's Rosegirl. I was the one who asked about rapid, intermittent symptoms. Dr. Sclafani, I sent you a CD with images from my venogram so maybe you can comment based upon them. It's been eight weeks since the procedure and, other than feet that are no longer purple, there are no changes.


rosegirl, sorry but i am only in nyc for two days then off to china
ill look at it when i get back if i cannot do it tomorrow
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Postby drsclafani » Mon Aug 30, 2010 9:19 pm

anyone going to be in guangzhou to video this speech? Geekgirl? :lol:

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Postby Cece » Mon Aug 30, 2010 11:48 pm

Quick statistics:

Only 13 questions posed this past week.
8 answered overnight.
10 more posed since then.
1 more answered.

Quite the uphill battle!
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Postby girlgeek33 » Tue Aug 31, 2010 6:18 am

drsclafani wrote:anyone going to be in guangzhou to video this speech? Geekgirl? :lol:



Although sounds interesting, I'll be in the outer banks. Possibly videotaping Earl hit the outer banks... Eek
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Postby Donnchadh » Tue Aug 31, 2010 7:47 am

Has the video from Dr. Sclafani's first conference ever been made available? I only a have dial-up Internet connection, so it's not feasible to download multi-MB files.

Anyone have a disk? I would be glad to cover expenses.

Donnchadh
Kitty says, "Take that, you stenosis!"

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Postby girlgeek33 » Tue Aug 31, 2010 8:13 am

Donnchadh wrote:Has the video from Dr. Sclafani's first conference ever been made available? I only a have dial-up Internet connection, so it's not feasible to download multi-MB files.

Anyone have a disk? I would be glad to cover expenses.

Donnchadh


On youtube, drbartman user posted my videos... If this doesn't work, send me a private message...
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Postby adamt » Tue Aug 31, 2010 10:05 am

drsclafani wrote:dear adam
have you ever had symptoms of MTS?swollen leg, tired leg, clots or thromboses of the calf or thigh?
i am not sure that all narrowings of the iliac vein need to be treated unless you have ccsvi in the lumbar or azygos veinous symptoms


Dear Dr Sclafani, thank you for the reply,

No, i have never had 'MT' symptoms like clots/DVT/swelling, but i do have the 'tenderness' in the Left thigh,
my left thigh also sometimes has sharp shooting pains, but this is rarely.

But my left leg has always been more affected than the eight leg.
So the left leg is weaker, stiffer, drags more, the knee "jerks back/locks backwards" when fatigued.
The left leg fatigues much quicker than the right leg.

The surgeon said the azygos blood flow was fine, but you mentioned when looking at my venogram, that my 'lumbar veins are poorly developed'

Which is the wiser option:

1) I have an appointment in December this year to check for re-stenosis, as well as balloon the M-T if they see it - in pne procedure
or
2) I could get Just the M-T ballooned in October this year on the NHS, then in December get the IJV tested for re-stenosis


Thank you Doctor, the help you provide us all is invaluable
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Buffalo Results

Postby Onthelake » Tue Aug 31, 2010 7:25 pm

Hi Dr. Sclafani, I am going crazy not knowing what is going on in Buffalo, re the safety trials and then the efficacy trials that were to happen soon after them...is there anyway you can find out what is happening..there was a terrible article in the Canadian press today stating that there is still no evidence that MS and CCSVI are related...I am so depressed....we need those Buffalo results! Can you provide any insight..any clues....what is taking so long there...thanks, hope you had a great holiday and have a great trip to China...more power to you. God Bless.
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Postby drsclafani » Tue Aug 31, 2010 11:19 pm

nicknewf wrote:Dr. Sclafani,

Since your symposium, have the physicians who participated started to fall in line around a common treatment protocol? Balloon sizes? Order of treatment? It sounds as if there are many doctors performing the treatments; are most sharing information between each other - or are most people practicing in silos?

Thanks


Absolutely not!
in fact there seems to be a growth in "innovative" (and sometimes bizarre) approaches out there that are very far afield from the original description of Zamboni. Such wide variation is lamentable as the diversion is creating a cloudy view. Some of the outlandish things i have seen come from people who have sent me disks or patients who have described what and why things have been done. While it is possible that patients have misunderstood or misquoted the treating physicians, this does not bode well for CCSVI acceptance.

the promise by SIR (society of interventional Radiology) to create some guidelines is helpful and cannot come soon enough. The IRs are becoming quite excited about this treatment . The groundswell will grow more quickly now. We are planning workshops for our next annual meeting and hopefully this will help create some order.

in the meantime, you have to start asking about experience, and outcomes from the treating physicians and not get too desparate for anyone who offers treatment.
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Postby drsclafani » Tue Aug 31, 2010 11:26 pm

Zeureka wrote:
drsclafani wrote:dear adam
have you ever had symptoms of MTS?swollen leg, tired leg, clots or thromboses of the calf or thigh?
i am not sure that all narrowings of the iliac vein need to be treated unless you have ccsvi in the lumbar or azygos veinous symptoms
Dear Dr Sclafani, thanks for being around even if not really being there - hope you still managed to relax a bit during some well-deserved hols this summer :)
In fact I was wondering about MTS symptoms - since understand MT is stenosis in left iliac: could this cause only symptoms in the left leg - or could MT cause symptoms in both left and right legs/feet?

And if you mention swollen legs, have a question about perceived and real(+perceived) swelling:


there are different kinds of swelling and you need to distinguish them, although it might be quite difficult to do so.

dysautonomia or malfunction of the autonomic nervous system can lead to swelling of the legs, often associated with purple discoloration.

MTS is an obstructive process of the iliac vein that can cause backup of blood down the leg or cause blood clots that cause inflammation and more obstruction.

Could MTS or other stenosed lumbar area veins also cause a symptom such as numbness only with the SENSATION of swelling accompanied by pins&needles (without however a visible swelling of feet/legs)? Thanks a lot for getting a clearer idea on this.


i think that those symptoms sound more like nerve problems instead of vein problems.
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Postby drsclafani » Tue Aug 31, 2010 11:46 pm

selkie wrote:Dear Dr. Sclafani,

Anti-histimines are often given to MS patients for treatment of nerve pain as well as allergies.

I have both allergies & MS nerve pain and don't want to take drugs like Neurontin.

Since histimines open the veins, but cause terrible symptoms (I experience shingles-like pain), and anti-histimines negate the symptoms but also restrict the veins, my question is,

Is it harmful for people with CCSVI to take anti-histimines? Does this cause even more back up of blood flow?

I take two anti-histimines per day (Zyretec & Allegra) and my pain is still about a level 7 on some days.

I can't do without the drugs, but I'm worried it's causing an even worsening of the blood back-up into my brain?

Can you clarify if my concerns are valid or are these drugs safe for people with CCSVI?

Thank you, Selkie

*****

selkie
antihistamines are used to block the effects of histamine. Histamine causes dilation of SMALL blood vessels and leads to swelling. Antihistamines work on the H1 receptors in the small blood vessels and counteracts the dilatation of the veins. however the effect is on smaller veins not on larger veins. I would not think that there is a any danger from them. Of course they do cause fatigue and sleepiness.
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Postby drsclafani » Tue Aug 31, 2010 11:47 pm

kaboodah wrote:Dr. S,

Would blocked or very narrowed veins be the potential cause of high blood pressure? If so, how would someone have normal blood pressure but also have substantially blocked veins? Thanks!

Renae


i do not think that that narrowed veins results in hypertension
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Postby drsclafani » Wed Sep 01, 2010 12:01 am

vivavie wrote:Hello DrS, I finally got my stent unblock (candy wrap stenosis) AND:
70% left jug stenosis: balloon twice 8/10X40mm
50% right jug: balloon 3X (8/10/12X40 mm)
both in the area of prior radiation+ curietherapy and neck dissection from previous tongue cancer.


Vivavie:
can you tell us whether your MS symptoms started before or after the radical neck surgery. If you and the group may recall, one of the arguments brought up to refute ccsvi is that patients with neck cancers have both their jugular veins tied off during surgery and they do not develop any symptoms. However it is known that sometimes these patients develop symptoms such as headaches, cog fog, balance problems and fatigue too.

Please let us know

He ALSO found a kink/irregularity in my Azygos 8X40mm (not checked in Poland)
It cracked - it poped - it hurt. (He also check MT and lombar =fine)

I was this doc 1st, he was pretty thorough (2 1/2hr) and he felt he did an aggressive job. Nice, competent, entousiast IR.

I was sure this time I was Fully Liberated but NO! Nothing:Pain -fatigue- brain fog are the same. headache increase.

What eludes me is my stent is now clear, how come I don't have the previous improvements I had for 6 weeks (bladder, saliva, bowel, no headache, sleep)? During the 1st procedure they only found a faulty valva.


of course, i havent seen your pictures so it is hard to say much. but the diameter of the balloons used may have been too small. I cannot tell without knowing the measurements of your veins. While Dr sinan is moving toward 18 and 20 mm balloons, your doctor seems to have stayed on the side of smaller balloons, perhaps for safety.
What should be my next step? Is it possible that the veins did not hold their new shape? How about balloon size? lenght? Would it be a good time to use cutting balloon because those veins must be hardened by radiation?
I am not ready to give up yet! help!
Thank you


it is really difficult to answer you without seeing the picture. if your veins are narrowed by radiation, it is likely that stents will be needed. however, remember, i am just a bystander hearing about the work of another plumber
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