Blissfully boring

I wish I had some truly exciting stories to share with you.  My week was productive, successful, active, and very average.  Did I say average?  That in and of itself is pretty miraculous!  I love being average!  Although being an overachiever, it is possible that I might be extraordinarily average. ;o)  I can't help myself, sorry.

I did all of the things that I must do, but I did them with so much more ease.  Shopping was easy, carrying laundry baskets was easy, standing in front of the stove was easy!  Nothing was totally effortless, but it is such a pleasure to not have to think about every step I take, or every move I make.  Wait… I think I just plagiarized a Police song.  Sorry Sting!

I am noticing some subtle improvements in my balance and temperature sensitivity this week.  I wrote about both things in my last post.  I believed that neither would ever be great, but what a difference a week makes!  I am able to balance on one foot, longer on the right than the left- for now.  I have also not been nearly as cold as I had been.  This week has been warmer than usual, but the past two days have been downright frigid, and I’m doing just fine.  Go figure.

I have been spending more time carrying my cane as an accessory this week.  I'm discovering that a lot of my confidence has been sucked up by that simple little stick.  I am having to prove to myself, little by little, that I really can walk outside without it.  It will be a while before I leave it behind for long walks, but I did go cane-free from my car to the grocery store this week.  A shopping cart is just a big walker in disguise, so I cheated while I shopped.  But you try to juggle food for a family of four without a cart!  I was using that cart for it's intended purpose, not because I couldn't have walked the aisles without it.  Been there, done that!

Now may I tell you about some other exciting CCSVI news?  The CCSVI Alliance, on whose Patient Advisory Board I proudly serve, is having its first big fundraiser March 5th.  It is The Opening Minds for CCSVI Walk–n-Roll in Tampa, FL.  The event will also include an informational Symposium the evening of March 4^th showcasing doctors, patient perspectives, and a fabulous silent auction.  If you can’t make it to Tampa, you can still support this excellent organization any time, day or night! Go to www.ccsvi.org , then click on the "Donate" button in the top right corner of the page.

Doctors are supporting The Alliance by providing video content, as well as reviewing all medical information provided on the site.  The Alliance is also proud to have been chosen by the National MS Society as a provider of information about CCSVI.  They have added a link on their website to The Alliance’s site.  It is a good first step for an organization that, as of now, has been lukewarm at best in its support of this awesome new development in possibly redefining MS and its treatment.

That's all for now.  If in the next week I discover that I can leap tall buildings in a single bound, you'll be the first to know!  

6 week update

I am officially 6 weeks post-treatment.  I am still making remarkable improvements in my legs and core strength in PT, thanks to my wonderfully unforgiving therapist.  She works me hard, and I love it!

My balance is still a little unpredictable.  My therapist and I discussed that strengthening my muscles will do great things to improve my balance.  However, any permanent damage that has been done to my vestibular system over these years may prevent total recovery of balance.  I’m going to do everything I can do to work on the muscle stuff, and just hope that great strength can compensate for deficits in other departments.  We’ll see!  For now I am fine without a cane in the house.  I take one with me when I go out, but try not to touch it to the ground as much as possible.  It is a fun little game I play with myself, although uneven surfaces are still too risky to attempt to navigate without my third leg! 

For anyone new to my story, I should warn you of my gift for devising explanations for phenomena where there really are none.  I do not like uncertainty.  In its presence I will concoct what I believe are reasonable explanations to fill in the blanks.  It helps me manage my world, and has worked for me for decades.  Until I find or develop a better system, I’m sticking with it! 

My physical stamina is still good, and improving daily.  On Monday I was able to go straight from a vigorous PT session to the grocery store for a full shop.  I was pooped when I was done, and luckily my wonderful husband was home to unload when I arrived.  To put this in perspective, pre-treatment I would have had to go straight home to the sofa to recover from a mild PT session, and stay there for at least an hour.  Being able to do two strenuous activities in one day, and to do them consecutively is incredible!

I am still cold most of the time, although my feet are not purple and are actually warm as I sit here typing.  I overanalyze every symptom, and was concerned about my cold intolerance.  Then yesterday I had lunch with two friends who also spend the whole winter shivering.  They don’t have MS, they just have "delicate constitutions."  So that's what I have, too!  Not every problem has to be defined by my illness.  My New England born husband would probably call us wimps, but I think “delicate” is a much nicer description.  And since this is MY blog, what I say goes!  

As I noted above it has been 6 weeks since my procedure.  I am still feeling great.  However, a little voice in the back of my head can’t help thinking about the fact that I began restenosing 8 weeks post-procedure last time.  Will restenosis happen again?  I am very realistic, and the answer is: probably.  But hopefully not for many, many more months, maybe years!

The longer I can delay another treatment, the more the doctors will learn while I enjoy my good health.  Already the focus is broadening in many doctor’s opinions to include valves as an important focus in this puzzle that is CCSVI.  Who knows what else will be discovered while I am busy feeling so well?

Ladies and gentlemen we really are making history here.  It is a rare gift to be able to benefit from, and contribute to, a paradigm-shifting discovery in medical science.  I still pinch myself everyday.  (But now that I have regained so much sensation, I have to be more careful where I pinch!) ;o)

Follow up details

I had my one month follow up appointment with Dr. Haskal yesterday.  Unlike a visit with my neurologist, my IR did not put me through a battery of tests to check my balance, strenght, vision, etc.  We basically sat and shot the breeze.  I have been emailing him with little update tidbits since December 2nd, but yesterday we got to have a real face to face conversation!  They are all too rare in this electronic communication world in which we live.

I told him about how I feel that my symptoms are so inconsistent from day to day.  However, since describing this in my last post, I've had nothing but good days!  My balance is strong and my walking is solid.  I fell asleep in the car on the way home from Baltimore yesterday (don't worry, I wasn't driving!), but that is a passenger's duty, is it not?  I'm chalking that nap up to the gentle hum of the car engine, rather than cognitive fatigue!

Many of you have asked for details about the balloons used in this procedure.  I got a copy of my report, and have all of the details to share.  He used a 14mm balloon in the right IJV using high pressure dilation.  In the left vein "12 and 14mm very high pressure angoigraphy was required to dialate the vein."  He used an 8mm balloon in the azygos.

I checked my report from July.  The differences appears to be the use of "very high pressure" and the 14mm balloon used in the left vein this time.  He only went up to a 12mm in the left in July.  In both veins the problems were at the valves again.  We discussed the fact that a couple of doctors he knows are using much bigger balloons these days.  He is interested in seeing their published results before committing to using them himself.  Sounds reasonable to me, but if I am back in his office again in two months, I may ask him to give those big suckers a try.  We'll cross that bridge IF we come to it!

Sadly he had no news to share about his study.  He assured me that the process is still moving forward, but the pace is maddeningly slow.  The good news is that his interest in CCSVI has not diminshed in the least.  In fact he seemed to be even more passionate than he was the last time I saw him.  We are extremely fortunate to have him on our team.  Now if only he could get back to work, everything would be perfect!

Consistently inconsistent

You would think that by now I would be prepared for the ups and downs that follow Liberation.  Nope.  I am still exuberant on my good days, and anxious on the bad ones.

Today is a perfect 10.  My walking feels effortless; what a gift.  I worked my hamstrings off in PT this morning!  My therapist thinks it is so fun to work with me.  How flattering!  She told another therapist in the office about me yesterday.  It turns out that the other PT used to be a caregiver for a woman with MS.  She was fascinated to hear about CCSVI and it's impact on the whole concept of MS.  I told her about the book  CCSVI as the Cause of Multiple Sclerosis: The Science Behind The Controversial Theory that was written by Marie Rhodes, the second patient who was liberated in the US.  She asked if it was her personal story, and I told her that Marie is a RN.  Her book is a bona fide medical primer on CCSVI, with a forward written by Dr. Mark Haacke.  It will be available in April.  I may have to order a second copy to donate to the clinic!

Two days ago I felt terrible.  My balance was pretty awful. and fatigue was bad.  I was so down wondering if this latest procedure wasn't as successful as the previous one.  It should be MORE successful, not less.  I base that assumption on the bigger balloons that were used, and that Dr. Haskal hopefully did more damage to that nasty left valve.  You know what happens when one assumes...

Yesterday was better than the day before.  I did a big grocery shop, felt pooped afterwards, then went on to make dinner for nine people that night!  I even had energy to do the dishes before bed.

Today was awesome as I noted above.  I need to remember how days like today feel.  As long as I get one of these every three days, I'm happy!  Feeling like a perfect 10 on a daily basis would certainly be better, but I'll take what I can get.

I have my one month follow up appointment with Dr. H on Wednesday.  It is mostly an opportunity for him to see me, check my progress, etc.  I relish the opportunity to have face-time with my new favorite MD.  Maybe he will have good news to share about his study.  Once that study gets approved he will be in high demand.  My days of making an appointment with him only one week in advance will be history!  I will welcome the inconvenience to my lucky little self because it will mean he is busy treating so many others!

So far my wish for a reprieve from the roller coaster ride I've been on does not seem to be coming true.  I naively thought that I'd be wiser the third time around, and not be so emotional.  Yeah, good luck with that Nicole!  I'm going to keep reminding myself that being on this ride is still better than waiting to get on board.  So I'll shut up, keep holding on, and count my blessings daily.

Repair, recover, rebuild

Now that I have been successfully venoplastied- again, it is time to rehab- again.  This is not a complaint! I am grateful for the opportunity to to rebuild what was lost.  It feels awesome to work my muscles until they burn.  Pre-liberation I could only exercise as long as my nerves were willing to send signals to my muscles.  No amount of motivation on my part could convince my muscles to do one more rep than my nerves would allow.  And then I was faced with hours of recovery time for the 10 to 15 minutes of, what was for me, great exertion.

Post-liberation I can push these muscles to work harder than they remembered that they could.  My positive attitude now really can push my legs to do just one more squat if I tell them to!  The tail is no longer wagging this dog.  I am in charge once more!  I say how long I will pedal the bike, or how many leg presses I will do. There is little to no recovery time necessary now.   My nerves are at the mercy of Nicole, not the other way around.  I love bossing my body around.  It is intoxicating!  

I look forward to seeing just how much I can rebuild my body in the coming year.  Twenty years of neurological damage cannot magically be fixed by simply opening my veins.  I will do everything in my power to regain as much strength and functioning as humanly possible, and hope doctors figure out how to help me maintain my gains.  

Eventually my goal will be exploring ways to repair the damage that an overactive immune system has been doing to my nerves for all these years.  That means stem cell therapy, and while I am clearly willing to try new things, that's one that I can wait to let other brave souls try first!  

For now I know that I've got my hands full, but it costs me nothing to peer around the corner to see what's coming next.  It is all so exciting and wonderful!  I couldn't have said that even a year ago.  For the first time in too many years, I am optimistic about what my future might look like.  Not a bad way to begin a fresh, new year!

I hope that the new year will bring Liberation to all who are waiting for their turn.  Nobody guarantees us success, but everybody should have the opportunity to see if he or she is a lucky responder.  

Still wishing you all much health and happiness in 2011!

Nicole

What a wonderful month

It has been far too long since my last post.  Please be assured that I have not lost any interest or enthusiasm in sharing my journey.  This may sound crazy, but I have been reluctant to share my latest news because I feel embarassingly fortunate.  Let me explain.

When I saw Dr. Haskal on October 26th, we determined that I was restenosing.  He told me that he hoped his study would be approved in the next couple of weeks, and that he could retreat me before Thanksgiving.  You see, I had a big family event scheduled for December 11th, and I desperately wanted to be feeling as well as I did after he last treated me in July.

Well, Thanksgiving came and went.  I did steroids the three days before Thanksgiving because his study was still mired in IRB-hell.  I was in touch with Dr. H's wonderful staff on a regular basis, but it wasn't looking good.  Then against all odds I got a call from the doctor himself on Tuesday, November 30th.  He had spoken with the IRB about getting an exemption to retreat me.  I don't know exactly why they agreed to let him treat me, but they did!

He said I should call his scheduler to get in THAT WEEK!  It was actually my husband who took the call.  He called me in the car to tell me the good news and I burst into tears.  I am not a terribly spiritual person, but at that moment I felt sure that my mom had somehow made the stars line up for me.  Thanks, Mom.

So I had my second procedure with Dr. Haskal two days later on December 2nd.  Here are the fascinating details:

Both of my jugulars had restenosed to some degree, and he used bigger balloons to treat them.  I am the first person on whom he has done a second treatment.  In the procedure room, he had my images from July on one screen, and live pics on another!  So cool.  The right jugular looked fine on first inspection.  He then looked at the left side and saw obvious narrowing at the valve where the jugular meets the subclavian.  He ballooned it many times, and this time it hurt enough that I asked for some pain medication.  He gave me a little Fentanyl to take the edge off.  Not sure if I got enough to really help, but I've given birth two times, so what's a little pain for so much gain?


He noted that parts of the left vein behaved as if they were still patent from the last procedure, while others needed some more work.  He went back to the right and inflated the balloon.  He was surprised that although the vein looked wide open, it was not.  We were looking at a 2D image.  While the width looked normal, either the front or back part of the vein had restenosed.  We could tell because as the balloon inflated, the telltale "waist" showed up.  The oval shaped balloon looked more like an 8 than a 0.  He ballooned the heck out if it.  It was interesting to him that the stenosis was not uniform all the way around a particular section.  Parts of the vein had held, while others had narrowed again.  He learned fascinating information that day that he could not have known before.  My veins were teaching school!

He checked and ballooned the azygos, although it was still unremarkable.  Let's face it, you can't go there and NOT balloon it just for good measure.

Then he was done!  I laid flat for another hour and a half, sat up a little, had a turkey sandwich, and we came  home.

So???  Well, as it was with the last two treatments, I immediately had warm light pink feet.  I took it easy on Friday, and started seeing other awesome improvements over the next several days.  I was able to stand for many minutes at a time.  I could march in place with my knees rising and being able to hold them at 90 degrees for over 10 seconds.  Once again my foot drop magically disappeared!  I can now walk so much faster since I don't have to worry that with each step I will land on my face.

The cane that I had become dependent upon in the house again kept getting left all over the place.  I would walk out of a room without it and not realize what I had done.  Only a few days after the procedure, I stopped using a cane in the house entirely.  Crazy!

On the Tuesday that I got the call from Haskal I was at Nordstrom with a friend looking for a dress to wear to our special event.  I drove to the mall, then she pulled my wheelchair out of the back of my car.  I couldn't walk through the store to get to the dress department that day.  Five days after angioplasty I went back by myself, with just a cane, to pick up pants that I had had altered.  I also stopped off in the shoe department to buy some cute flats.  And I continue to get stronger and healthier each day!

The event on December 11th was my oldest daughter's Bat Mitzvah.  For us it was an all day event beginning with pictures at 9:00am.  Her service in the sanctuary of the temple began at 10:30.  Then we had a luncheon for family and friends that lasted until 3:00.  My legs were tired, but I had none of that nasty fatigue.  We came home and rested for a few hours before hosting a second party with a rocking DJ.


The traditional Jewish dance of celebration is called the hora, in which people hold hands and dance around in a circle.  The guests of honor end up being raised on chairs high in the air.  This was the part of her celebration in which I so desperately wanted to participate.  Without my treatment I might not have even been able to stand in the middle of the dance floor with my family.  I would have sat, and clapped, and smiled from ear to ear.  But on that night I held hands with my husband and two beautiful girls and we "danced."  By dance I mean that we held hands and walked in a slow circle together.  Our loved ones danced in a circle around us.  Then our strong friends lifted us each on a chair to the roar of the crowd.

My daughter was the star of the day.  But because of Dr. Haskal I got to dance with her to celebrate.  The significance of that is permanently seared on my brain.  I did it!

My plan was to wait to share this wonderful news for a time when I could also announce that Dr. Haskal's study had been approved.  I have every confidence that it will happen.  I just felt that I couldn't wait any longer to update my status.  So much has happened in the past three weeks!  I begin PT at the end of the month, and  I look forward to rebuilding, again, the muscles that have deteriorated over the past several months.

I hope that the study gets approved very, very soon. Enough IRB foot-dragging already!  Dr. Haskal and his team are ready to hit the ground running when that happens.  While he and so many patients are waiting, many people are finding other doctors who are learning about, and being trained to treat CCSVI.  2011 is going to see an explosion of doctors who are ready and willing to treat us.  The key factor is finding one who is experienced, or who at least has trained with an experienced doctor.


In the meantime Dr. Haskal and his colleagues are working to write protocols for all doctors to follow.  Only with consistency can we hope to standardize this treatment.  Eventually all patients will have the confidence that they are being treated using the best techniques available.

I am no longer naive enough to believe that I have seen my last angioplasty.  The best I can hope for is an even longer run this time than the last.  I also hope that our brilliant, dedicated new group of CCSVI specialists can quickly figure out how to keep our veins patent, and our valves open forever.

In 2010 I have met more wonderful people because of CCSVI, and had more life-altering experiences than I could have ever predicted way back in 2009.  I am physically, mentally, and emotionally stronger as a result.

I am honored to be a member of an elite group of people who began as individual MS patients, and who have morphed into a fierce, passionate, worldwide force.  We are demanding to be heard and liberated from a dangerous health condition called CCSVI.

To all of my family and friends, old and new, I wish you a joyous holiday season and a very, very happy and healthy 2011!

Giving thanks

I have been so overwhelmed over the past month by all of the love and support I've received from family, friends, and generous people I've never even met.  Thank you all.  Your kind words have meant so much to me.

I'm sad to report that since my mom passed away, my health has declined significantly and rapidly.  I'm back to using a cane IN the house, and a scooter in the mall.  The left side of my torso and left leg are almost totally numb.  Does wonders for the balance.  NOT!  Fatigue is back, legs are weak, and my feet are icy, too.  Sigh...

I broke down and did a three day course of IV steroids this week.  I am feeling a lot better already.  My balance is noticeably improved, which makes my walking safer, which makes my life a lot easier!  It is no angioplasty fix, but I have to take care of myself to the best of my ability while I wait, so doing steroids was the right answer.  Thanks to you, you miserably useful steroids.

While feeling poorly stinks, I know that it is only temporary.  I haven't been able to say that in 20 years!  I am so thankful.

I have been living on one very long, twisty, thrilling roller coaster ride throughout 2010.  The highs have been so high, and the lows, well let's just say they were really, really low.

I fully expect that 2011 will be another interesting ride, but I wish it will have more highs, and fewer lows.  Is that possible?  I sure hope so!  Maybe I can get off of the roller coaster this year, and grab a seat on the ferris wheel or the carousel.  They both come full circle like a coaster, but the ride is much more calm and smooth.  That sounds like exactly what I need right now!

In the coming year I am wishing for permanently patent veins, and valves that don't heal or grow back.  Just two things on my list!  Granted they are bigger gifts than anything my wonderful husband or children could wrap for me, but I know that they  would do it if they could!

I am so thankful for that amazing man and those delicious girls!  They are my motivation for (almost) all that I do.  I want to enjoy every minute of life with them.

I have learned over my lifetime that we have only so much control over our destiny.  Things happen without our consent or request.  That's life.  We are, however, absolutely in control over how we manage the hand that we are dealt.

A positive attitude was something I was born with.  It has been my greatest asset throughout my life.  I feel like a buoy floating in the ocean.  I may get batted around A LOT, but I always stay afloat.  Much of that is due to this inner strength that was bestowed upon me in utero.  The rest comes from the wonderful people that I am so lucky to be surrounded by everyday.

Thank you all for caring at all about my CCSVI journey.  I write to document the ride for myself, but I get great satisfaction in thinking that my experiences may help even one person who is following in my footsteps (or Segway or scooter tracks.)

Happy Thanksgiving to you all,
Nicole