Sorry if I sound like a broken record

In order to report my experiences for the last week, I could easily refer you to one of my previous posts.  In the one from January 3rd, I talk about the ups and downs I was experiencing in the month following my December 2nd treatment.  I am having a similar experience this time.  Some days are exceptional, like today.  My balance and walking are stellar, and I feel mentally sharp as a tack.  Other days are tough like yesterday.  My legs felt weak and my balance was not as good as it has been for the past week.

I am getting really good at just coasting through the tough days, and not spending too much time worrying about them.  This strategy is made infinitely easier because bad days are usually followed by good ones.  When I have too many bad days in a row, that is when I know it is time to start keeping more detailed notes in my journal.

I am looking forward to strutting my stuff for Dr. Haskal at my follow up appointment on June 3rd.  Between now and then I will be working to rebuild muscles that have weakened, and paying close attention to how my body handles the 90 degree weather we are expecting this week.  I have not been particularly impressed by my ability to tolerate heat any better than usual after Liberation.  For years I have gotten tired and my legs get weaker when the mercury rises much above 80 degrees.  Maybe this summer will be different. Or maybe the large amount of permanent damage done to my nerves over all of these years will just mean that heat is my permanent nemesis.  So be it.  This is why some brilliant individual invented air conditioning.  I am planning on taking full advantage of mine this summer, thank you very much!

I am holding on to the five remaining PT appointments that I have left for the year.  It is too early to use them up when I can do a decent job rebuilding by myself.  I am very excited to be meeting with a personal trainer tomorrow, though!  She has a special interest in working with people with neuromuscular diseases.  When I told my 11 year old daughter this she said, "But Mom you don't have a neurological disease, you have a vascular disease!"

So young and SO wise!  I explained that while my primary diagnosis may in fact be vascular CCSVI, my symptoms are due to neurological damage caused by 20+ years of blood refluxing back into my poor brain.  For that reason I am looking forward to meeting a trainer who understands the needs of someone like me.

This trainer is one of the many impressive people on the board of a wonderful organization called "dreamMakerS."  It can be found at www.msdreammakers.org, and here on Facebook.  The group is dedicated to offering fun activities, support, and camaraderie for children in my area whose parents have MS.  It was founded by an energetic 4th grade teacher who grew up with a dad with MS. She certainly has her finger on the pulse of kids like mine.  I am proud to support such a fantastic organization.  Check them out!

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!

Just twiddling my thumbs...

The good news is that there is nothing exciting to report.  I have not fallen on my face even once in the past week!  I have fallen asleep A LOT, though!  Last Friday I could barely keep my eyes open during breakfast, even though I had had a decent night's sleep.  My husband suggested I take a nap.  Who me?  Nap??

I finally gave in around 11:30am, took out my contacts, and snuggled down for a rest.  I reemerged from the bedroom around 4:30PM!

This kind of exhausting fatigue has never been one of my biggest complaints.  Physical fatigue was always my Achilles heel, and that's creeping back in, too.  It is interesting to note.  I look forward to restoring proper blood drainage from my brain so that I can stay alert all day, and only nap if I choose to nap!

A very wise man whom I greatly admire told me that he admires me for my "moxie and go get them attitude." I am flattered, of course.  But how hard is it to keep motivated when I have insurance that pays for this wonderful treatment, a doctor whom I trust and like, and a history of excellent response to venoplasty?  It is easy.

My life is a walk in the park compared to what so many others endure.  I never forget to count my blessings, and work to help push and/or drag the movement forward for the benefit of my children and all of my fellow sufferers.

I have a strategy session scheduled with Dr. Haskal for Monday, and treatment on Wednesday.  I have great respect for his skills and philosophy.  He is more conservative than some doctors who are treating CCSVI.  I'm fine with that.  I have the luxury of being able to take it slow and steady thanks to proximity and insurance coverage.  As he was in the midst of performing my last procedure in December, Dr Haskal told me that if what he was doing didn't meet our expectations, there was more that he could do next time.  I'm ready to explore exactly what that "more" is that he was referring to.

I'll let you know how it all turns out next week.  I have great confidence in my doctor, but I'll still take all of the positive thoughts that you can send my way!

Thanks!  Nicole