So much for routine!

I was hoping that I would be back to some type of routine by now.  No such luck.  Stress is gone, but with one kid home and one away, things are still hopping in my life.

I have been working hard with my trainer to strengthen my muscles that lift my toes and on those darn hip extensors!  I am really enjoying my time in the gym.  I was curious about the differences between a PT and a trainer.  I have found that when the trainer is VERY well educated, and the exercises are so basic, there is really no difference!  Of course, my insurance paid for my PT at 100%, and they pay 0% for the trainer.  I am making the most of the time that I spend with her, and am working the exercises into my day.

My stamina is back to full speed, and my walking is back to where it was before my stressful weeks.  I still have quite a long way to go to get to where I would LIKE to be, but for now I can do what needs doing.  How can I complain?

I have been fortunate to have attended two shows at the Kennedy Center in the past week, and am going again on Saturday.  There is a lot of walking required in that massive facility, especially if you park on the wrong side of the building and have to trek all the way across the joint to get to your intended theater!  I have been able to do it pretty damned well if I do say so myself!  Luckily my "fancy" black cane matched my outfits beautifully, and I had a handsome man's hand to hold to complete my look.  Priorities, right ladies?

I am trying to steer clear of the heat, although high school gyms are like saunas on a bad day.  Don't even get me started on the aroma!  Aaahh... but to get to see my girl sink a great basketball shot is worth it all!

I took a break from blogging last June (here) because I was struggling with figuring out my next move.  I had nothing good to share, and needed to give myself permission to take some time off to find a new doctor to retreat me.  Luckily I was able to do that much more quickly than I had imagined.  I found Dr. Haskal and was retreated just one month after I signed off for the summer (here read Part 3)!

I am going to allow myself to take a more relaxed approach to blogging this summer, too.  Not because anything is wrong.  In fact everything is good again, and seems to just be getting better.  I am in awe of the stamina of Joan Beal and her tireless dedication to the CCSVI in Multiple Sclerosis Facebook page.  I think that the world might actually stop turning if she took a vacation from her role!

Luckily for me I am not Joan.  I appreciate being able to share my little role in this awesome new discovery.  But as a small player, I have the luxury of taking breaks.  I promise to share with you any newsworthy developments in my life, but I won't bore you with my everyday minutiae.  I value your time as well as my own!

Have a great summer my friends.  I intend to do the same!

Crazy busy!

I have been feeling guilty shirking my blogging responsibilities!  I try to post weekly but these past two weeks have been filled with awesome celebrations, end of school activities, and preparing my kids for their summer adventures.

The heat has definitely been impacting my ability to accomplish all that I have on my "to do" list.  I spent a full hour in Target on Tuesday checking items off of the camp packing list.  Did I mention that I spent an hour walking the aisles of Target?  That is huge for me.  The downside is that I was noticeably wobblier the next day. Aah...  I hate rebound!

The good stress of all of these exciting events has impacted me in the same way bad stress does.  My walking suffers, and my fatigue increases.  I am anxious for this wonderful week to come to a close, and for my lovely boring life to resume.  I thrive on routine!

So this post is necessarily short in order to check one more item off of my list.  I feel the weight of my week getting lighter by the minute.  I should have definitely done some meditation, or at least deep breathing exercises during all of this craziness.  I didn't make the time.  In hindsight that is pretty stupid.  Tomorrow I cross the finish line, so I will stop and smell the roses again beginning Monday.

The top of my next "to do" list will be to practice all of my wonderful relaxation strategies so that I will be better prepared for the next inevitable stressful time in my life.   I'm just too busy to start right now! ;o)

Breaking news: heat is hot!

File under the "what was she thinking?" column:  I went to the soccer game yesterday that I specifically said that I was NOT going to go to.  The day started off beautifully.  It was cool, and even a little breezy.  Well just because it is nice at 7:00am, does not mean that it will STILL be that way at 1:00pm.

It got hot.  88 degrees hot!  When the temperature gets that high, standing in the shade does little to cool the body.  Big dummy!

I had trouble walking back to the car, although I did fine even on weak legs.  I was also exhausted.  And I was not one of the girls running around in the bright, hot sun for the whole hour!  Ahhh... to be young.

Conclusion:  Nicole cannot, I repeat CANNOT stand the heat like an "average" person.  Liberation has given me back so much, but improved hear tolerance is not one of those things.  Now I know for sure.

Luckily there are pre-game cool showers, cold beverages, and cooling vests to enable me to cheer for my girl when I want to.  I can also drop her off on days like yesterday and hang out at a local Starbucks drinking something other than hot coffee if it becomes necessary.

The good news is that I bounced back very nicely today.  I took my soccer-playing girl shopping to three different stores with no problems.  I guess a little bit of heat, in between air conditioned cars and stores is o.k.  Sitting in it for an hour or more, without adequate preparation, is just plain stupid for me.  Lesson learned.

On another note, I saw Dr. Haskal on Friday.  Unfortunately he was running very late, but it gave me time to take some notes on my Blackberry so I wouldn't forget everything I wanted to tell him.  He swooped into my exam room with apologies for his tardiness.  Hey, it happens.  I proceeded to pull out my phone to read him my list of improvements.  Then he pulled out his phone to record me telling him all about them!  The wonders of modern technology.  I could have emailed him my list and saved myself the two hour round trip to Baltimore!

Actually it is important to meet with him in person.  The trip was not a waste of time in any way.  As always the good doctor just shook his head in amazement as I rattled off all of my improvements.  I know that my changes are almost as valuable to him as they are to me.  I get to feel better, and he learns what is possible with this treatment from seeing me feel better!  A win-win if I've ever seen one.

I told him that I will occasionally send him email updates, but that I hope not to need him for at least 8 months this time!  My trajectory has been to double my time between restenoses after each treatment.  The benefits from the first treatment lasted about a month, the second one lasted two months, and the third treatment lasted four months.

Plenty of people have made it far longer between treatments than I.  Many have not been as fortunate as even I have been.  Just as each person's MS is highly individualized, so too, is each of our responses to balloon angioplasty.  The techniques and experience of the doctors also play pivotal roles in our outcomes.

We are still in the infancy of this treatment,  and what it means for those of us with a diagnosis of multiple sclerosis.  Anyone who is feeling well enough to be able to wait,  who cannot afford the very likely follow up procedures, or who is just afraid to be a guinea pig should definitely consider sitting out this round.

I was exchanging private messages with a woman on a CCSVI forum last week.  She started a thread asking for the names of the best doctors performing this procedure in the US.  She seemed desperate for assurances about specific techniques and outcomes.  I felt her anguish.  I wrote to her privately that no one could give her all that she wanted.  I suggested that if she was so anxious about making a wrong decision, or experiencing a less than excellent outcome, that she should seriously consider taking a deep breath and waiting.

She thanked me for my thoughts, and agreed that she should wait until there is more information with which to make her decision.  I sensed a more relaxed woman as I read her words.  It seemed that it was a relief to give herself permission to wait.

Being a pioneer is not for everyone.  I have passed up many opportunities to participate in clinical trials for MS treatments.  None of the potential benefits ever seemed worth the risks for me.  I was always so appreciative for the people who stepped up to take part in trials.

With CCSVI I had no hesitation about being the first one to hop up on Georgetown University's table.  I made sure I was well informed, but I also had a lot of luck, or fate, or  whatever you choose to call it, on my side.  I am confident that this gamble I have taken has been one of the best decisions of my life.

When everything clicks

It has been a whirlwind week + since my last post.  I wrote last Monday that I was having a stellar day.  That pattern continued through the rest of the week!  Perhaps it took 12 days to recover from the procedure so my body could finally show me some consistent gains.

My balance, walking, and fatigue level have all been great.  Of equal note is the dramatic reduction in spasticity in my legs.  I take 20 mg of baclofen first thing in the morning.  I've never been able to skip, or reduce that dose, even after treatment.  I had begun taking 20mg of baclofen at dinnertime a few weeks before my treatment.  I continued to need that dose for at least a week post-procedure.  I realized a few days ago that I hadn't taken a dinnertime baclofen in days.  I wish I could understand how blood flowing freely from my brain can reduce spasticity in my legs.  While I can't explain it, I have lived it FOUR times now!  Too bad spasticity cannot be measured easily, like walking is evaluated using the EDSS scale.  Spasticity and fatigue are two symptoms that frequently show dramatic improvement from Liberation, but will probably never be included in studies because they are subjective measures based on patient reports.  Sigh...

I met with the personal trainer I mentioned in my last post.  What a compassionate and gifted woman she is!  We did a lot of evaluation in our first meeting.  She made me feel great because she was impressed at how strong I am.  And here I was feeling like a weakling!  It is all relative, I suppose.  She told me that she has worked with MS patients (they probably have CCSVI but don't know it yet) who are more advanced in their disease than I.  She is excited to see what we can accomplish together.  So am I!

It will be interesting to see the similarities and/or differences in working with a trainer vs. a PT.  Whomever I am lucky enough to see, having one on one attention feels luxurious- even when they are kicking my butt!

I have been managing the heat by staying inside most of the time.  When I do venture out, I am not feeling too badly.  My walking does not noticeably deteriorate, nor does fatigue overwhelm me.  I am still going to let someone else take my daughter to her soccer game on Saturday.  It is one thing to successfully walk through a parking lot, or ride the Segway to the bus stop when the heat index is 105°.  It is another thing to sit in that hot sun for an hour!  I know my limits.  I feel badly for the poor kiddos who have to actually play in this heat!


My greatest accomplishment this week was getting in a swimming pool and playing with my girls on Memorial Day.  And I didn't just get in; I DOVE in!  Lots of oohs and aahs from my family and friends.  Even more impressive than my dive was my ability (with the gallant assistance of my wonderful husband) to climb the stairs out of the pool.  This pool does not have a handrail, so he held my hand.  What a great sense of accomplishment I felt with each step!  Fear of being too weak to get OUT of a pool has been the thing that has kept me from getting IN for several years.  No more!


Finally, I went dress shopping today in preparation for a busy social calendar this June.  I am a woman who dislikes shopping.  I didn't like doing it even when I had no physical limitations.  I have learned to take advantage of the wonderful personal shopping services offered by most department stores.  The first time I did it, I was worried that I would only be shown very expensive clothing.  Not so!  I spoke with the shopper in advance, and I arrived to a dressing room full of dresses in my size just waiting to be tried!  Once we picked the perfect dress, the woman went to the shoe department and brought me several pairs to try with the dress.  THEN a salesperson from the lingerie department arrived with choices of underthings to make my sassy spaghetti-strapped dress wearable, if you know what I mean.  I just sat there and thanked them profusely!  This service is free to anyone, not just to people with physical challenges.  I have been fashionably-challenged my whole life, and have often been saved by these talented salespeople.  It works to take a fashionably-gifted friend shopping with you, too.  Mine was hard at work today (right, Sher?), so I did it all by myself (o.k...with A LOT of help!)


I am excited to see Dr. Haskal on Friday.  I have lots of wonderful things to report!  Perhaps I will just print out, or email this blog for him to read.  What more is there to say?

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