Procedure in New England - second time around

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

Procedure in New England - second time around

Postby tzootsi » Thu Dec 09, 2010 12:16 pm

Last April, my wife had a CCSVI venoplasty done here in northern New England (possibly the first one done in this area), for her blocked jugulars. My wife’s most noticeable ms symptoms were a heavy right leg, severe l’hermittes, burning skin, and balance issues. This first procedure went very well, and was done at a well known medical center by the head of interventional radiology. The interventional radiologist we found worked with Sclafani for many years, and keeps in touch with both Sclafani and Dake who he also knows. He was unaware of CCSVI until I sent him some info, but he quickly became interested and was willing to work with us.
Both jugulars were ballooned with 16 mm balloons, no stents were used. Over the next few months there were some gradual changes - l’hermittes just about gone, heavy leg starting to improve, etc. However, by mid summer (about 5 months out) her symptoms started slowly creeping back. At her August checkup, the good doctor found a little reflux returning, but wanted to wait until her November checkup before making a decision. By November it became very apparent to my wife that she had restenosed - her leg was quite heavy, and other symptoms were reappearing. Her November checkup reconfirmed this - both jugulars were again stenosed.
Yesterday 12/8 , she went in for her second venoplasty. Apparently our doctor (who has treated several other TIMS’ers) was more experienced with the whole CCSVI procedure, and was able to pick up a pressure gradient issue in the azygous, and stenosing in the iliac and both jugulars. The renal was also checked but that was ok. Therefore, she had 4 veins ballooned, but no stents were used. Again, were were very pleased with the whole process - the nurses, the doctor, a second doctor in training from Connecticut, etc. It was interesting to see how the whole staff was now ‘in tune’ with CCSVI! The doctor from Connecticut was quite interested in CCSVI, and is hoping to do procedures in his area.
Today my wife is still resting up from the 2.5 hour procedure , but is doing quite well. Her right hand and foot are warmer, and she feels some slight improvements in other areas. We will keep everyone posted.
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Postby Blaze » Thu Dec 09, 2010 12:43 pm

Thanks for posting. Hopefully, her former improvements will return. Please keep us informed.
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Postby CCSVIhusband » Thu Dec 09, 2010 2:15 pm

Good again Tzootsi!

I hope the good doctor is doing fine ... we've been in contact with him throughout (as I know others have been as well).

We can't thank you or him enough!

Glad to know he is training other doctors ... the staff there is wonderful! He's truly a blessing as a doctor that's for sure.

Glad he learned about the azygous more and is learning more and more - as all these doctors are (though when we went for my wife's procedure was right after Dr. Sclafani returned from Italy, and we put him in touch with Dr. Sclafani to learn of his newest findings).

Tell her to rest up ... more follow-ups to be coming from some of his other patients in the near future. (we actually just talked to him last night).

All the best to you and your wife!
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