MarkW wrote:MarkW's list on 27 Sept (possibly out of date today):
Gold standard diagnosis of CCSVI syndrome must use both intravascular ultrasound (IVUS) and catheter venograms. Veins in the neck and truck scanned should include vena cava, transverse and dural sinuses, plus internal jugular, azygous, hemi-azygous, iliac, and right renal veins.
Dr S is the person to ask this question to.
PS Treating CCSVI syndrome is these areas will not alleviate MS symptoms. We are treating CCSVI syndrome with the primary hope that MS progression will be slowed or stopped. Some people experience improved MS symptoms but that is not guaranteed
Cece wrote:Here is a letter from a patient who had been previously treated for CCSVI. In a second procedure, she had only the renal vein treated. Any improvements after this second procedure are presumed to come from the treatment of the renal vein.
Most of the time the renal or iliac is treated along with other veins, making it is hard to tell what it is an improvement because of the renal or iliac being treated and what is an improvement because of the jugulars or azygous also treated.
Cinna wrote:In response to pklittle, I am the patient who during my 2nd angio on July 18, 2011 had a stent placed in my left renal vein by Dr. Sclafani to correct my nutcracker syndrome. I believe it's on pg. 366 of his thread (I see that Dr. S has just posted another case of nutcracker). Since my jugular veins were still open from my lst ballooning in India in June 2010 and my azygous was flowing well, my renal vein was the only vein treated in July.
I continue to do well. My improvements following the renal stent include better balance and a better gait (almost normal now). My eyesight is also clearer with improved depth perception. I had experienced some improvements in all 3 of these areas (as well as many other improvements) after my 1st procedure but I am even better now. One new improvement is a substantial reduction in leg spasms, especially at night, and my legs no longer feel numb when I stand up after sitting for a long time. However, I still have constant pain/discomfort/weakness/heaviness in my legs and can't walk any further or stand much longer--although I have noticed that my recovery from overdoing it is quicker.
I saw my neuro the end of August, 6 wks post stent. After the neuro exam she said I was doing very well with improved balance and better tone in my left leg. My EDSS improved to 2.5 from a 3. I have been her patient for 10 years and she has never scored me better than a 3, even after my 1st procedure. I then told her about my renal stent. She was not particularly interested as she doesn't believe in CCSVI. Her only comment was "So, you had a stent put in your ARTERY".
I should mention that Dr. S also found my lumbar veins are very small compared to normal and are poor collaterals for spinal vein drainage but he thinks it's unlikely this is the cause of my leg problems (it's conjecture at this point). Nevetheless, following the lead of my friend with CCSVI I asked my family Dr. for an ultrasound to check for venous insufficiency in my legs. Ultrasound was yesterday. I consider myself very fortunate to get it--I'm Canadian. After paying myself for my last 2 CCSVI check ups in Barrie, it was nice to have OHIP cover this one.
I started reducing my rebif 2 months after my 1st procedure and have been off it and all MS meds since March 2011. I was diagnosed with MS in 1991, SPMS in 1994 and had been on high dose rebif since 1994 (I was part of the SPECTRIMS study).
Am I glad I had my renal vein stented? Absolutely. As Dr. S says, we have to look at the "global flow" and the blockage in my renal probably put more stress on my azygous. As an added bonus, although we all worry about our jugular veins closing up after angio, I don't have the same level of concern about my stented renal.
I hope this is helpful. After reading this thread I finally decided it was time to register on TIMS & contribute to the discussion.
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