DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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pklittle
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Post by pklittle » Tue May 17, 2011 6:50 pm

drsclafani wrote:
phe wrote:Yikes...the case above is the one you had after I kneed you for 3 hrs Friday? And I thought I was challenging.

Here's a wee benefit with mixed emotions...my spasticity is gone for now...yay...but I can't use it to stand up...so rehab it is.

Dr S...you are my hero!
This is incredible. I would have bet all the equity in my house that you would not have had any reduction is your spasticity. It was so bad i had to do the procedure holding your flexed leg with my body while i worked around your leg.

i am so happy tonite!

DrS
Wow! That sounds like quite a challenge! Were you having to do everything all by yourself?

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drsclafani
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Post by drsclafani » Tue May 17, 2011 6:56 pm

pklittle wrote:
drsclafani wrote:
phe wrote:Yikes...the case above is the one you had after I kneed you for 3 hrs Friday? And I thought I was challenging.

Here's a wee benefit with mixed emotions...my spasticity is gone for now...yay...but I can't use it to stand up...so rehab it is.

Dr S...you are my hero!
This is incredible. I would have bet all the equity in my house that you would not have had any reduction is your spasticity. It was so bad i had to do the procedure holding your flexed leg with my body while i worked around your leg.

i am so happy tonite!

DrS
Wow! That sounds like quite a challenge! Were you having to do everything all by yourself?
No, I am well assisted by Smitty. But i had to stand where my patient's knee was flexed and it kept falling so i used my body to keep her comfortable.

No jokes please.

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pklittle
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Post by pklittle » Tue May 17, 2011 8:34 pm

Dr., I have a basic question about bloodflow. When CCSVI is treated, this allows the used blood to exit the brain and spine more easily and quickly. Is it safe to assume then that fresh blood is cycling through easier too? Is that a major benefit of the treatment too then.. that our central nervous system is experiencing more "out with the bad" and "in with the good"?

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linsand
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Post by linsand » Wed May 18, 2011 5:09 am

Hello Dr Sclafani, can you help answer some questions?
I know as a person with ccsvi/ms that the IJV"S are open (hopefully) when I'm lying flat (supine)and the vertebral venous system takes over when I'm standing.
So..... 1/3 of the day we may lie flat and be sleeping and the IJV's drain.
2/3 of the day we may be upright and the vertebral veins drain.
Q, :) Should the vertebral venous system be investigated then somehow, ie, with our neck above heart level?

Sorry :) but I have been reading some research from the site below

http://www.descsite.nl/Frames.htm
☛ Publications
☛Academic Thesis
☛Janneke Gisolf ,2004.
This thesis has been prepared in the Cardiovascular Research Institute Amsterdam,
Chapter 2. Cerebral venous outflow pathway is posture dependent pg 13

Research Group on Physiology and Pathophysiology of the Circulation, at the department
of Physiology. The project was financed by Space Research Organization Netherlands :) :)
Last edited by linsand on Wed May 18, 2011 5:41 pm, edited 3 times in total.

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1eye
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Post by 1eye » Wed May 18, 2011 5:21 am

You guys might be interested in the weird device thing I was talking about in the Random CCSVI Notions thread, as I am starting to get some of that stiff-knee spasticity at night myself, and for some reason this gizmo seems to do something. Sometimes as an alternative my good wife massages my feet. Instant relief. Really. Ours not to reason why.
This unit of entertainment not brought to you by FREMULON.
Not a doctor.

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drsclafani
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Post by drsclafani » Wed May 18, 2011 5:30 am

pklittle wrote:Dr., I have a basic question about bloodflow. When CCSVI is treated, this allows the used blood to exit the brain and spine more easily and quickly. Is it safe to assume then that fresh blood is cycling through easier too? Is that a major benefit of the treatment too then.. that our central nervous system is experiencing more "out with the bad" and "in with the good"?
There is reduced blood flow and what you say may be true but this is an opportunity for someone to have a career researching it

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hannakat
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Post by hannakat » Wed May 18, 2011 6:57 am

pklittle wrote:Dr., will you please let us know if/when this lady reports benefits? I am particularly interested in knowing about this case. I assume she does not post here(?)

It is great to read about all the new things you are discovering!
She wanted me to post saying that she plans on reporting her side of the experience once she is back home and rested a bit.

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Post by Cece » Wed May 18, 2011 7:03 am

FROM THE IVUS, ONE CAN SEE THE CORRECT SIZE OF THE VEIN. DILATING MUCH ABOVE THE NORMAL VEIN SIZE WOULD SIMPLY RESULT IN RUPTURE AND ULTIMATE RETHROMBOSIS. THAT IS THE POWER OF IVUS. EVEN IN AN OCCLUSION, WHERE VENOGRAPHY DOES NOT SHOW THE LUMEN, WE CAN DECIPHER THE TRUE DIAMETER AND PROPERLY SIZE THE BALLOON.
I was impressed when you said this the other day, that even with my 99% occluded left jugular, with IVUS the true diameter could still be measured distal to the occlusion.

Thank you for all the responses! :)

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Post by WeWillBeatMS » Wed May 18, 2011 7:38 am

drsclafani wrote:This is incredible. I would have bet all the equity in my house that you would not have had any reduction is your spasticity. It was so bad i had to do the procedure holding your flexed leg with my body while i worked around your leg.

i am so happy tonite!

DrS
Hey save some equity in your house for when my right ear pops open while I'm on your table!

:)

WeWillBeatMS

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pklittle
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Post by pklittle » Wed May 18, 2011 8:56 am

drsclafani wrote:
pklittle wrote:Dr., I have a basic question about bloodflow. When CCSVI is treated, this allows the used blood to exit the brain and spine more easily and quickly. Is it safe to assume then that fresh blood is cycling through easier too? Is that a major benefit of the treatment too then.. that our central nervous system is experiencing more "out with the bad" and "in with the good"?
There is reduced blood flow and what you say may be true but this is an opportunity for someone to have a career researching it
Reduced in, out, or both?

It seems logical to me that improving the complete cycle of bloodflow is what this is all about. That feeding the nervous system better makes it healthier, or at least feel healthier anyway. That even if an area has damage, that it is masked in some cases by providing a better supply of fresh blood.

Is anyone taking the opportunity and researching this???

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HappyPoet
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Post by HappyPoet » Wed May 18, 2011 9:06 am

Hi Dr. Sclafani, :)

Because my left transverse sinus is missing, I'm very interested in your recent work with guidewires/catheters being pushed through the intracranial dural sinuses, and I have some questions:

1. What are the possible risks/complications of this procedure?

2. What is the follow-up protocol for these patients?

Thank you!

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drsclafani
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Post by drsclafani » Wed May 18, 2011 12:11 pm

pklittle wrote:
drsclafani wrote:
pklittle wrote:Dr., I have a basic question about bloodflow. When CCSVI is treated, this allows the used blood to exit the brain and spine more easily and quickly. Is it safe to assume then that fresh blood is cycling through easier too? Is that a major benefit of the treatment too then.. that our central nervous system is experiencing more "out with the bad" and "in with the good"?
There is reduced blood flow and what you say may be true but this is an opportunity for someone to have a career researching it
Reduced in, out, or both?

It seems logical to me that improving the complete cycle of bloodflow is what this is all about. That feeding the nervous system better makes it healthier, or at least feel healthier anyway. That even if an area has damage, that it is masked in some cases by providing a better supply of fresh blood.

Is anyone taking the opportunity and researching this???
yes. but this is not only about improving blood inflow by opening outflow. there is also a lot of problems with drainage of the CSF when the veins are obstructed.

Dr Beggs will be discussing thisat my NYC symposium on july 16.

Start studying your CSF hydrodynamics!

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LauraV
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STENTING WITH DR SCLAFANI???? YES!

Post by LauraV » Wed May 18, 2011 12:45 pm

Dr. Sclafani,

I'm here to tell you and everyone that it CAN be done and it WAS done beautifully 5/16, by Dr. Sclafani, himself. Stent(s) from Dr. Sclafani? I was a little unnerved. Fortunately, I had a week to process the whole idea when you told me Sat, 5/7. When I arrived Monday morning I was ready.

I knew from part I of this procedure Sat 5/7 and your comments to Smitty during part II on Monday, that you still had difficulty opening my left IJV , so I was concerned, but everything went smoothly and I walked out two hours later with two stents in my now wide-opened left jugular.

My neck is still a little sore but not bad enough to take anything for it. Improvements so far (2 days):
1. less fatigue/more stamina
2. bladder urgency/control
3. foot temperature and color
4. ease of walking. I still have the foot drop but somehow my walking is more "fluid" and a little faster (according to observers).

One nice thing is that my sisters told me that my face looks less drawn and I look younger. (better than Botox?) but I haven't noticed that.

Questions:
1. Does Coumidin have to be for 6 months?
2. Do I have to avoid certain neck movements?
3. Can these stents break?

And at the risk of sounding incredibly corny I'm going to say that you didn't just open a vein for me, Dr. S, you opened a door for me. If I don't get anything else, I now have hope...and possibilities. Everyone needs that. You truly are a "salvatore" ("savior" in Italian)

Mille grazie! Thank you so much!
Laura :D

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pklittle
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Post by pklittle » Wed May 18, 2011 1:47 pm

yes. but this is not only about improving blood inflow by opening outflow. there is also a lot of problems with drainage of the CSF when the veins are obstructed.

Dr Beggs will be discussing thisat my NYC symposium on july 16.

Start studying your CSF hydrodynamics!
I just did a little wikipedia reading on CSF, how it turns over 3.7 times/day through the vascular system. I understand a tad more what CCSVI really means now. Heavy stuff.

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LauraV
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STENTING WITH DR SCLAFANI???? YES!

Post by LauraV » Wed May 18, 2011 2:43 pm

Dr. Sclafani,

I'm here to ask you a few questions and to tell everyone how you stented my completely occluded left jugular vein.

With the left jugular closed again (as you predicted) you had difficulty re-opening my left IJV, even after that impressive rendezvous procedure on day 1. So I was a little worried about the outcome, but everything went smoothly and I walked out two hours later with not one, but two stents in my now wide-opened left jugular.

My neck is still a little sore but not bad enough to take anything for it. Improvements so far (2 days):
1. less fatigue/more stamina
2. bladder urgency/control
3. foot temperature and color
4. ease of walking with cane. I still have the foot drop but somehow my walking is more "fluid" (according to observers).
5. more positive mood. (is this a placebo effect? relief that I have opened veins? I don't know but I feel great)

One extra benefit is that my sisters told me that my face looks less drawn and I look younger. (who needs Botox?) I don't see that, but aren't sisters great?

Questions:
1. Is 6 months of Coumadin set in stone?
2. Can stents break?
3. If it's not too much trouble, could you post my pix so I can see what it looks like in there? I can't open the CD on my computer.

And I want to thank you, doc, for sticking with me and persisting with that stubborn left jugular. You didn't stop until you could do something for me. You proved again that you really do care about your patients outcomes. And at the risk of sounding incredibly corny I'm going to say that when you opened that vein you opened a door for me. If I don't get anything else, I now have hope...and possibilities. You truly are a "salvatore" ("savior" in Italian).

Mille grazie!
Thank you so much!
Laura :D

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