Treatment # 4

Lots of stuff has been happening since my last post, not the least of which was my fourth treatment!  I met with Dr. Haskal on Monday, May 9th to discuss strategy.  I was a little disappointed, but not at all surprised that he had no new tricks up his sleeve.  His plan was to just go back and retreat anything that needed attention.  We continue to agree that stents are not for me.  I very calmly restenosed over the past month.  If I had a stent in my vein, I would have been a wreck wondering if it was clotting or getting built up with endothelium.  No thank you!

Stents are no guarantee of preventing restenosis.  I have been reading many posts from people on Facebook and forums who believe that stents are the best solution.  For many cases they are a necessary evil, but for most of us, they are best avoided, IMHO.

I have also heard more about some doctors treating the iliac and left renal vein.  After three treatments I decided that I was curious what MY iliac and renal veins look like!  May Thurner Syndrome is a condition where there is compression of the iliac vein by the iliac artery.  This causes swelling of the left leg and potentially blood clots.  I have none of those symptoms, but the best way of diagnosing this syndrome is with CT, MRV, or venography.  Since we were going in anyway, I asked him to use the left femoral vein this time and give it a "look-see."  Dr. Gary Siskin did a study and found that May Thurner Syndrome is no more common in people with MS than in the general population.  Still I was curious.  Dr. Haskal was willing to humor me, so in the left side he went.

MY iliac vein was fat and free-flowing, and I have a pretty picture to prove it.  He sees no reason to even look at the renal vein, so he skipped that one.  This is a common, but different philosophy from a few doctors with whom I am familiar.  Until we have a "best practice model," there are going to be different ways of doing things.  Who is to say which one will ultimately rise to the top?

He first looked at the pesky valve at the base of my left jugular.  It looked o.k. upon first inspection, but as we are learning, looks can be deceiving!  He used the same size balloon as in December, but kept finding resistance.  This is an area where some doctors are choosing to, for lack of a better term, "bust" the band of fibers.  Dr. Haskal is not comfortable doing that until he sees published evidence of its benefits, as well as lack detriment to the vein and flow.  So instead he inflated the balloon about nine times for approximately 10 seconds each time.  WOW did that hurt!  For the first time I needed some serious Fentanyl to take the edge off.  He told me that each inflation causes micro tears in the vein wall.  So while I did not hear the telltale "POP" that some report hearing when that band is ruptured, I felt the damage being done!

He then went to the right side, and sure enough, the vein had restenosed.  He was able to retreat it easily, only needing to inflate the balloon 3-4 times for good measure.  The azygos again looked fine, but he treated it, too.  He commented that there are valves and leaflets that can be very difficult to see.  Better to treat just to be sure.

My recovery room experience was unremarkable in a very good way.  I was really pooped on the way home, presumably from the Fentanyl.

Today is Monday.  I do not feel a gigantic change in my symptoms compared to last Tuesday.  This is probably because I had not regressed so much this time before being retreated.  My balance has been better, although I am still waiting for the sensation in my torso to completely return.  I remember that last time that took a while, but it did come back.

I did a full grocery shop today, and felt strong even at the end.  This is one of the regular activities that I use as a barometer to monitor my symptoms.  I can feel that I have lost some strength in my legs.  I am confident that it is nothing that a little biking and doing strengthening exercises can't fix.  My fatigue is also much improved.  Saturday I showered in the morning, went to my daughter's soccer game, and then enjoyed dinner and a movie with friends in the evening.  I couldn't have done that last week!

So that is my report.  Once again I have been "saved" by some little balloons.  I am beyond grateful for Dr. Zamboni's discovery, and my good fortune to be able to benefit from treatment of my CCSVI.

I am happy to report that while Dr. Haskal is still unable to treat new patients, he is by no means sitting on the sidelines.  He is working with other doctors to move the study of this powerful new treatment forward.  While he was not at liberty to share specifics, I got the definite impression that things are happening behind the scenes in a big way.

We will all just have to stay tuned.  Things are really starting to heat up!