DrSclafani answers some questions

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

Re: Recheck after 3 years????????

Postby drsclafani » Wed Apr 23, 2014 7:47 am

MarkW wrote:
drsclafani wrote:...............I surely know much more about veins, valves, endothelium, balloons, stents, anticoagulation, neurological assessment, ms, lymes, chronic fatique, ivus, than when I started answering questions....................Its not like I am winding down. I remain wound up by this treatment. In fact as I have gained experience I am more confident but more reasoned about the effects

Hello Dr S,
I have such confidence in your skills that I recommend pwMS (with sufficient funds) travel from Oxford England for diagnosis and de-stenosis by you. My question is:
Have your skills and techniques developed significantly over the last 3 years (when I visited your clinic) to justify another trip to Brooklyn???
Kind regards,
MarkW

Dear Mark
that is a two part question.

first part: have my skills and techniques developed significantly in the past three years? absolutely. I always perform IVUS on the left renal vein, something I did not routinely do until 2012. I initially performed IVUS in the renal vein only when the venogram was suspicious. However now I always do it because I have found the venogram to be less than accurate. I am also more comfortable diagnosing webs and other forms of stenosis. My selection of balloon size is also more accurate and with less risk of injury to the vein and fewer complications. My anticoagulation regimen is improved and my surveillance of the dilated veins more logical.

the second part of your question is more complicated. Do I think it would be worthwhile to come back for another look. That is a clinical question that depends on your prior response, your smoking history, your prior symptom relief and your current symptoms.

That conversation belongs as a private dialogue. Give me a note at ccsviliberation@gmail.com and we can discuss your current situation.

Cheers

DrS
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Re: DrSclafani answers some questions

Postby Needled » Wed Apr 23, 2014 1:08 pm

Hi Dr. S,
I thought I'd add my update and I also have question.
You found and treated a web in my RIJV in February 2010. The procedure was a success and benefits have held for the most part. My feet are now warm, hands are warmer, MS hug is gone, my back pain has improved, and most important my gait, balance and endurance are much better. Both feet and my left hand are still somewhat numb and weaker but nothing I'm not used to, although I'd love for them to feel better.
Then you did my second procedure in May 2011 to treat the LIJV. That was also successful and showed my RIJV was still clear.
Cold affects me much more worse than warm weather and this winter was terrible. Yet now that its over (mostly), I am coming out of it much stronger than last spring. I take Copaxone 3x week, supplements, do my pt and walk as much as I can.
You know I was thinking about another procedure last year because I
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Re: DrSclafani answers some questions

Postby Needled » Wed Apr 23, 2014 1:14 pm

See what happens with a numb hand when I type...
Anyway, I didn't feel as well after last winter. The ultrasound showed blockages last year but now I feel better.
My question is -- Have there been any improvements to the ultrasound diagnostics? Are you seeing a better correlation between the ultrasound and what you're finding during the actual procedure?
Thank you!!
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Re: DrSclafani answers some questions

Postby dlynn » Wed Apr 23, 2014 2:29 pm

Dr. Sclafani
You asked if I had seen my opthamologist. No, I haven't because I don't think my vision changed that much, but I can now read, without a magnifier, what I could not read before. And yes, I do have double vision, that has never changed. I've had it for 38yrs. My glasses correct it. I haven't seen my neurologist since I mentioned CCSVI to him and he dismissed it That was when it reached the internet and all the m.s. websites. So it's been about 5 yrs.

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Re: DrSclafani answers some questions

Postby drsclafani » Thu Apr 24, 2014 11:33 am

Needled wrote:Hi Dr. S,
I thought I'd add my update and I also have question.
You found and treated a web in my RIJV in February 2010. The procedure was a success and benefits have held for the most part. My feet are now warm, hands are warmer, MS hug is gone, my back pain has improved, and most important my gait, balance and endurance are much better. Both feet and my left hand are still somewhat numb and weaker but nothing I'm not used to, although I'd love for them to feel better.
Then you did my second procedure in May 2011 to treat the LIJV. That was also successful and showed my RIJV was still clear.
Cold affects me much more worse than warm weather and this winter was terrible. Yet now that its over (mostly), I am coming out of it much stronger than last spring. I take Copaxone 3x week, supplements, do my pt and walk as much as I can.
You know I was thinking about another procedure last year because I

Hi needled
You were one of my very first patients. We are quite fortunate that you have had such a good time of it, now four years after treatment! Amazing.

To answer your question about ultrasound, I must admit that I havent read any papers about ultrasound after successful angioplasty, certainly not long term followup. I have never been able to correlate the ultrasound and clinical symptoms or outcomes after treatment except when the ultrasound tells me about a thrombosis. Valvular stenosis can be detected, but webs cannot be seen. Reflux seems more common AFTER treatment, not surprising since we have stretched open the valves. Thus reflux from valve stenosis and valve incompetence cannot be distinguished unless we see valve immobility indicating valve stenosis.

hope that helps you and thanks very much for the important followup

DrS
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Re: DrSclafani answers some questions

Postby Rosegirl » Fri Apr 25, 2014 4:31 am

dlynn,

Right after my second CCSVI procedure, my eyesight also improved. While sitting in recovery, I looked at a pill bottle on the bedside table. As usual, it has the tiniest print in a light color against a white label. To my amazement, I could read it perfectly from a distance. It's now three years later and my vision is pretty much the same.

My ophthalmologist said it was quite common for this to happen. A procedure that changes the amount of fluid, and hence the pressure, within the skull causes the eyeball to change its focal point. So your eyeball was perfectly focused before your condition caused additional pressure within the skull. When that pressure was relieved, the eyeball reverted to its normal state and your vision improved.
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Re: DrSclafani answers some questions

Postby drsclafani » Fri Apr 25, 2014 9:53 am

Rosegirl wrote:dlynn,

Right after my second CCSVI procedure, my eyesight also improved. While sitting in recovery, I looked at a pill bottle on the bedside table. As usual, it has the tiniest print in a light color against a white label. To my amazement, I could read it perfectly from a distance. It's now three years later and my vision is pretty much the same.

My ophthalmologist said it was quite common for this to happen. A procedure that changes the amount of fluid, and hence the pressure, within the skull causes the eyeball to change its focal point. So your eyeball was perfectly focused before your condition caused additional pressure within the skull. When that pressure was relieved, the eyeball reverted to its normal state and your vision improved.


Rosegirl, you perhaps have missed the point of this. This did not happen after treatment of ccsvi but happened after stenting of the left renal vein.

Additionally sometimes the vision issues related to cranial nerve dysfunctions that can cause double vision or poor tracking. Improvement can occur in vision when these dysfunctions improve.

Sometimes color vision improves. This may be caused by improved optic nerve function or even occipital cortex improvement.


DrS
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Re: DrSclafani answers some questions

Postby Rosegirl » Fri Apr 25, 2014 11:09 am

In the CCSVI procedure referred to above (my second), major blockages were opened in both IJVs, the azygos, renal and iliac veins. That was when my vision improved, so perhaps this "stradles" a common experience with dlynn. In my first CCSVI procedure that just opened blockages in the RIJV and the azygos, I experienced the color vision improvement. while I was on the table.
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Re: DrSclafani answers some questions

Postby ThisIsMA » Fri Apr 25, 2014 1:02 pm

Hi Dr. Sclafani,

This may be a longshot but here is a link to a website discussing a new automated scientific computing method called FEniCS.

What caught my eye is that FEniCS was used to measure CSF velocities in Chiari patients. I'm wondering if it could also be used to measure IJV velocities in MS patients before and after angioplasty, and if having that measurement would be helpful? In the study described at the link below, they found that "CSF velocities are significantly higher in Chiari patients than in healthy or post-operative individuals."

http://fenicsproject.org/featured/2012/csf.html

I just happened upon that website while surfing the web. Here's a little more information from the "About" page of the website:

Contributors

The FEniCS Project is developed by researchers from a number of research institutes from around the world. The following research institutes contribute significant resources to the FEniCS Project:

Simula Research Laboratory
University of Cambridge
University of Chicago
Baylor University
KTH Royal Institute of Technology

Contributions have also been made by researchers from Chalmers University of Technology, Delft University of Technology, Argonne National Laboratory and many other research institutes.

FEniCS seems to be much more broadly used than just for measuring velocity in patients. I believe the study was just one example of how it could be used. Another quote from the website's "about" page says:
The FEniCS Project is a collaborative project for the development of innovative concepts and tools for automated scientific computing, with a particular focus on automated solution of differential equations by finite element methods.

No need to reply to this email, I just wanted to pass that link along to you just in case FEniCS could be helpful for measuring the success of individual CCSVI angioplasty procedures, perhaps as part of a randomized controlled trial.
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Re: DrSclafani answers some questions

Postby drsclafani » Fri Apr 25, 2014 1:52 pm

Rosegirl wrote:In the CCSVI procedure referred to above (my second), major blockages were opened in both IJVs, the azygos, renal and iliac veins. That was when my vision improved, so perhaps this "stradles" a common experience with dlynn. In my first CCSVI procedure that just opened blockages in the RIJV and the azygos, I experienced the color vision improvement. while I was on the table.


Thanks for the information. Hmmn I am perhaps seeing a pattern that is worth a publication

DrS
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Re:

Postby Aristarxos » Mon Apr 28, 2014 2:57 pm

Dr Sclafani

Do you think that an enlarged spleen with a high level of hemolysis (because of hereditary spherocytosis) low hematocrit low hemoglobin and ccsvi problems can lead to agressive ms symptoms?
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Re: Re:

Postby drsclafani » Mon Apr 28, 2014 9:33 pm

Aristarxos wrote:Dr Sclafani

Do you think that an enlarged spleen with a high level of hemolysis (because of hereditary spherocytosis) low hematocrit low hemoglobin and ccsvi problems can lead to agressive ms symptoms?


Aristarxos
that is an interesting question, not like any other we have seen here.

I did a literature review and found that there was no association between MS and hereditary spherocytosis.

if we get theoretical here, we could discuss whether anemia resulting from hemolysis could impact upon CCSVI and result in symptoms of MS.

One could discuss whether certain symptoms commonly improved after treatment of CCSVI such as fatigue, difficulties with cognitive impairment, signs of dysautonomia such as postural hypotension, palpitations are in fact caused by anemia, or at least exacerbated by anemia.

This is quite plausible if one accepts the idea that the venous obstruction of CCSVI reduces cerebral perfusion. Tissue perfusion is a defined in one regard as the ability to transport oxygen to the tissues. if blood flow is retarded by venous obstruction, then oxygen delivery is also compromised. If the blood has insufficient red blood cells (anemia), then oxygen delivery to the brain is doubly affected. Poor delivery of a substandard product.

So while i could find no definite data on your question, my gut tells me that it might be so
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Re: DrSclafani answers some questions

Postby NHE » Tue Apr 29, 2014 11:11 pm

Hi Dr. Sclafani,
Can vertigo be a symptom of CCSVI? For example, vertigo with nausea while lying down, but gone as soon as a sitting position is attained?

Thanks, NHE
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Re: DrSclafani answers some questions

Postby drsclafani » Mon May 05, 2014 10:42 pm

NHE wrote:Hi Dr. Sclafani,
Can vertigo be a symptom of CCSVI? For example, vertigo with nausea while lying down, but gone as soon as a sitting position is attained?

Thanks, NHE

Yes. It can
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Re: DrSclafani answers some questions

Postby 1eye » Tue May 06, 2014 7:43 am

I have been vacillating about your treatment for a long time, even though my first treatment, at another clinic, was a success for a year and still had had some effect.

One thing that puzzles me: when I had arterial stents put in my chest for a heart attack, the drug regimen was a year of plavix, and a single adult dose of aspirin for the rest of my life. Do you think it should be significantly different for veins?

Is there any reason for this, if it should? My venoplasty more than a year later was treated with six months of plavix, and I wonder i that could be a reason for my backslide. It happened after more than a year, and was gradual. Mind you, I don't know how well my arterial stents are doing, and i have had one pretty significant angina attack.
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