This Is MS Multiple Sclerosis Community: Knowledge & Support

Dear Dr. Sclafani,

I am interested to learn more about your thoughts on, and experience with cutting balloons. Do you have them ready to use as a back-up for all balloonings? Have you found them useful and in what scenarios? How well do resistant stenoses respond to ballooning? Is the risk of complications such as rupture greater with cutting balloons? Do you have any concerns about cutting through valves?Do you see a role for cutting balloons in restenosis?

Thanks,

North

Hi Dr. S! Wondering if you had any update from IRB on the first review? Anxious MSers await...

Hi there Dr. Sclafani. I hope all is well with you, and I am sending all the best wishes for a speedy approval. I also have a question about arachnoid granulations. Is that something you deal with or that you have encountered as part of the CCSVI picture as you have seen it evolving? My MRV from Stanford included the statement that there was an "arachnoid granulation in the left transverse sinus," among other findings. I have seen one other member here who had the same thing. Thank you for any insight!

If it can be any help:

1. Immediately after procedure, daughter noticed my feet were pink and felt warm. They were icy cold and dusky prior to procedure.

2. I did not have to get up during the night to go to the bathroom. Prior, I had to get up 2 to 3 times a night.

3. I could walk without crutches around the room. Prior, I had to use crutches for every step.

4. I was able to sleep on the side that I had a painfully broken rib (my muscles were supporting my ribcage after the procedure). Prior, I couldn't put weight on that side.

5. I could stand up straight. Prior, my trunk was so weak, I was bent over.

6. I could look up at the ceiling without supporting my neck and head. Prior, I couldn't because my neck was too weak.

7. My gallbladder worked better. How do I know? Because my bowel movements were a darker color rather than very light. I also didn't have pain in my gallbladder area, even when eating high fat food. Prior, I couldn't eat high fat food without having pain in gallbladder.

8. I did not choke. Prior, I choked frequently on my own spit or on anything spicy.

9. My right foot was straight when I walked. Prior, my right foot "led" with the outside. I thought I was just pigeon-toed.

10. No positional sleepiness. Prior, I fell asleep or almost fell asleep when my head was flexed in certain positions.

11. Shopped for 3 hours without any cramps in feet. Prior, I couldn't shop for longer than 1/2 hour.

These were immediate results that have either stayed stable or improved even further since procedure 6 weeks ago.

My physical therapist says my lower extremity strength has increased 25%.

Brilliant thanks this is what we need to hear so we can find ways to measure the immediate benefits. Excellent!!!!!!!!!!!!!!!
And good on you for having the treatment.

Hi Dr. Sclafani,

My wife got a doppler ultrasound done recently. In the supine position, it showed no narrowing, but in the erect (sitting up) position, it showed significant narrowing in the left & right IJV. So when the venography was completed, it showed no narrowing. Because the venography showed no narrowing, no angioplasty was done. After getting the results of the ultrasound, this is not what we expected. Have you ever encountered this before? Is there a chance that something got missed during the venography?

Yes, good point - would in the first place be interesting to see if such cases at all exist (and at which frequency). If so, CCSVI in the other genetically identical twin could have been caused by other than genetic basis then eg through injury at birth or by another factor that caused it during body growth. So not excluded that CCSVI in principle (most cases) congenital, but that certain vein issues might also be caused by mechanical injury factors during or after birth+growth.

Hi thirdday,
are you aware that what you are describing could be physiological?
The jugular veins are supposed to be thinner standing up and wider in supine position. Just the fact that they dilated in supine position shows that there were no fixed narrowing and therefore nothing to dilate.
None of what you describe is part of Zamboni criteria.
Have they found any reflux? any azygous problem? Have they used the intracranial transducer?
Best wishes to your wife

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Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />

I have seen MRV and Doppler described is venography. Usually this is done during the venoplasty. Are you sure it was the percutaneus venography?

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Plus I would take a doctor's advice before I decided anything was psychological.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

At what point, with various Drs working under IRB approval, will this then be available everywhere?

1 eye, I also at first read "psychological" and was wondering what he meant, but Nunzio meant "physiological"
I noticed when tired my eyes stimes turn/swap letters when read on the screen and if I type I also sometimes miss out a letter without noticing - simply don't see it.

That twin study only checked for differences in the genetic code for areas that controlled the immune system, not all their genes in their entirety. So all that was learned was that there was no genetic difference in areas relevant to the immune system in the couple sets of twins they looked at (one with MS, one without).

It's genes related to vascular development and malformation that need to be compared and there was a study on that, cheerleader posted it, all very, very interesting stuff, they did find a connection. Awhile back Dr.S mentioned he was trying to get the chair of genetics interested in CCSVI, now I understand more why.

All right, here are some questions: in googling hyperplasia and restenosis, I've been reading up on why diabetics have twice the restenosis rate compared to nondiabetics, and while some of that seems to be other systemic conditions that diabetics also have, it also seems like sugar may be promoting excessive growth of the blood vessel lining during the healing after angioplasty. So might it be a good thing to watch sugar intake after the venoplasty? From the sound of it, elastic recoil is completely out of our control, so I'm looking at if anything can be done to limit hyperplasia, and interestingly enough 'cutting balloon' is about the only other thing that comes up, since less stretching has to be done when the cutting balloon is used.

Also, along the lines of FUD, is there anything about these CCSVI malformations that might increase the chances of having an aneurysm malformation nearby? If an aneurysm is a vascular malformation where the blood vessel is stretched out and therefore thin, could the venoplasty procedure create just enough excess pressure during the procedure that it could cause it to tear? I know it's something that the safety studies may answer, but it this even how aneurysms happen?

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Oops. Wrong thread.

Yes they found reflux. The venography did not find any problems with the azygous and they did not use an intracranial transducer.