A sad day

On October 28th, 2010, my wonderful mom passed away.  She was always my greatest supporter, cheerleader, confidant, and friend.  Life will certainly go on, but it will never be the same.

My mom was a huge fan of Dr. Haskal, and was so grateful for the amazing benefits that I received from my treatment with him.  She asked me to request that memorial contributions in her memory be made in support of his study at:  UMB (University of Maryland- Baltimore) Foundation for CCSVI  Research, 100 N. Greene Street, Suite 600, Baltimore, MD  21201.

Most people who follow my blog never knew Mom.  I just thought that you might like to know that there is a way to support Dr. Haskal's work through this foundation.  Please consider making a donation in honor or memory of someone you love.  His research will benefit all of us with CCSVI!

The man with a plan

Once again I had a fascinating meeting with Dr. Haskal.  He is clearly a dedicated, methodical, patient man who is determined to make things happen.  I have every confidence that he is ramping up to do great things for CCSVI treatment and research.

Dr. Haskal has great respect for IRBs, their essential role in protecting patients, and legitimizing the groundbreaking work being done in studies.  I am sure that jumping through countless hoops in the process of getting his study approved must be frustrating.  You wouldn't know it by asking him.  He is the epitome of cool.  He has been, and will continue to be successful because he is a team builder, and a consummate diplomat.

He is optimistic that his study will be approved in the next few weeks.  I know that I am not the only one who is waiting with baited breath to hear the news that he is back in business!

As I expected my ultrasound was not very informative.  The report stated that my right IJV has "diffuse narrowing".  That is all that he told me, so I assume there was nothing more interesting to share.  He was totally unconcerned with the report.  He noted that until he sees excellent correlation between ultrasound and venogram, he will not make treatment decisions based on just one factor.  I have to get a copy of that report to read for myself.  No worries, though.  Dr. H called me a "poster child" for this procedure, and he plans to widen these veins again when he is able.  I'm ready whenever he is!

I learned some fascinating things during my appointment.  Dr. Haskal now has the head neurologist on the study "pulling with him, not pushing against him."  Excellent.  See my note above about him being a diplomatic team-builder.  He is also working on having researchers begin studying CCSVI in animal models.  Evidently sheep have venous valves similar to humans!  Stay tuned for more news on this one.

This doctor is working tirelessly to treat CCSVI, but also to find answers to so many questions related to this condition.  If I was a betting woman I would put almost all of my chips on Haskal.  Then I would sprinkle the rest on Dake, Siskin, Sinan, Simka, Hubbard, and Haacke.  If I had more chips, I'd certainly have more doctors worthy of my wager.  When I hit the jackpot, I'd go back and bet on them all again.  We have an ever expanding team of amazing doctors working feverishly on our behalves.

I feel that in 20+ years, my future as it relates to my health has never looked brighter.  I count my blessings every day.  It makes everything feel better, even the yucky stuff that has nothing to do with CCSVI.

New job title: Test Dummy

I have never been on the cutting edge of anything before in my life.  I am no fashion trend setter, brilliant inventor, or brave drug trial participant.  However, I am usually an excellent follower.

So it is fascinating to me that I have sought out, and taken advantage of, the opportunities I've had to spend the past 11 months being a pioneer of an amazing, life altering treatment for a condition that I didn't know existed, or that I even had!  

I educated myself about CCSVI to the best of my ability.  Then spent every available minute looking for a doctor who was willing to snake a balloon up my groin, into my tightly closed jugulars and open those suckers right up!  I never hesitated for a minute.  Who am I?!?  One very lucky lady, that's who.

What a year it's been.  To recap:

*  November 30th:  Several articles about this "Liberation Treatment" landed in my Yahoo alert email
*  February 1st:   I had a Doppler ultrasounds at Georgetown University
*  March 3rd:  I became the first venoplasty patient at Georgetown University
*  Mid March:  Began restenosing rather quickly
*  July 30th:  I was treated by Dr. Ziv Haskal for my restenosed veins before he took a break in order to get a CCSVI study approved by his hospital's IRB
*  October 1st:  Began restenosing again, but very slowly it appears this time
*  October 22:  On Friday I was the 8th or 9th patient to have Doppler ultrasound at University of MD (Oscar the tech couldn't be exactly sure)
*  Next week I meet with Dr. Haskal to discuss when I can have my 3rd venoplasty.

I will be very interested to see what my ultrasound results show.  I know that I am in the very early stages of restenosing.  When I was originally tested at Georgetown, my reflux numbers were not terribly remarkable.  When the doctor did the venoplasty he was shocked at how stenosed my veins actually were.   I don't expect that the Maryland tech found anything to get too excited about.

Luckily, I know that Haskal has a healthy skepticism for ultrasounds and MRVs.  My well documented improvements, and subsequent decline are far better indicators of restenosis in my book.  Of course, I'm no doctor.  But I bet I know a whole lot more about this than many board certified physicians at this point!

I'll let you know how the appointment goes this week.  Stay tuned...

Holding steady

The good news is that my bruises are healing, and I have not gotten "intimate" with the floor in the past week.  I never cease to impress myself!  I have been walking more slowly, and concentrating on lifting that left big toe with every step.  It seems to be working. 

My generic AFO arrived on Thursday.  It is the rigid plastic foot brace that keeps the toes from catching when you take a step.  I tried it on and it is not very comfortable.  I saw my PT that afternoon, and she tried to make some improvements for me.  I still haven't put it back on.  But now it is officially in my bag of tricks, and here if I really need it.  It is always better to have and not need, than to need and not have.

I am still able to walk pretty far, although I am using the cane more for support than decoration again.  No big deal.


The most consistent problem that I can't ignore is my deteriorating balance.  The walls of my house now feel my touch more often.  My gait is a little wider.  It's manageable but keenly on my radar.

My legs are definitely getting weaker.  I am having difficulty raising my thighs to ninety degrees while marching place.  It takes great effort, and honestly they don't make it as high as they used to.  I can't do nearly as many repetitions as I once could either.  Interestingly, I am still able to lift my legs out to the side using my hip muscles without difficulty.  However, when I try to bend down to get something in a low cabinet or on the floor, I am having much more difficulty getting back up.  I thought that was a quad problem.  My PT tells me that this maneuver is dependent on those hip muscles, so what do I know? 

My fatigue is feeling worse, but it probably has less to do with restenosis than the crazy life I'm living at the moment. I know that I promised myself I'd rest, but I'm having trouble finding the time.  Thanks to the .5mg of klonopin I still have to take for night foot cramps, I am sleeping like a baby, so that is good!

In summary all is still good, just very slowly on the decline.  If I hadn't been here before, I would be doubting and justifying my symptoms as anything other than restenosis.  With experience comes knowledge.  I know.


I have an ultrasound this week, and my 3 month appointment with Dr. Haskal next week.  I know that I am in good hands, and that those hands will hopefully be back in business in November.

Oh, snap! Here we go again...

What a difference a week makes.  Was it really just last Tuesday when I was walking around the mall like I owned the place?  Yes, it was.

I am very bummed to report that this week has not been nearly as wonderful as the last.  I fell on Sunday.  I'm fine, but I wish the circumstances were more impressive than reality.  I was not doing cartwheels, or dancing.  I was making a damn bed.  My left toe caught on what must have been a huge dust bunny, and I hit the floor.  My elbow is a lovely shade of purple, and my hip and ego are also slightly bruised.

I saw my new PT on Monday and told her what happened.  Neither of us thought it was too concerning, and I had a good workout.

Then it happened again on Wednesday.  I stepped off of the elevator in the lobby of an office building, with cane in hand,  and I caught that damned toe again.  Splat!  I'm still fine, but it appears that the writing is on the wall.  I am restenosing.

If this is anything like the first time, it will be a slow process.  Although I improved dramatically in the 24 hours after my treatment, the decline takes much longer.  It has been fun while this treatment lasted.  Two months definitely beats two weeks, but two years would have been even better!

I am in touch with Dr. Haskal's office, and his staff is amazing.  He is out of the country this week, but I will see him for my three month follow up at the end of October.   I hope he will be able to fix me not long after that.  Hopes and reality don't always match up, but I'm still a hard-core optimist, so I am confident that where there's a will, there's a way.

May I climb up on my soapbox for just a second?  I am the perfect example of why it is so important to stay as local as possible when choosing a doctor.  I know that it is not realistic for everyone, especially all of you Canadians out there.  I hope that changes soon.

It is also essential to have doctors and therapists document changes post-procedure.  I have my neurologist's report showing my improvement in EDSS from 6 to 3.5 two weeks after the procedure.  I also have my PT's evaluations from baseline, at one month, and two months.  This is all objective evidence of the success of my procedure.

I can also tell you that fatigue is not an issue, swallowing is still excellent, and my thinking is still sharp.  Those are my personal observations.  No doubting neurologist is going to be swayed by any of that.  They want objective data from reliable sources?  I've got it!

I am going to get an AFO to support my left foot so that I don't fall again and risk doing real damage to myself.  My nurse, PT and I are confident that this is just a temporary fix for a temporary problem.  Once my jugulars are wide open again, I fully expect that I will only find myself down on the floor if I choose to be there.  Perhaps I will check under the bed for that mean old dust bunny that tripped me up on Sunday!

The bottom line is that it is all going to be fine.  I knew that restenosis was a real possibility.  It happened.  Oh, well.  I am extremely lucky to have a fabulous doctor who, when he is able, will make it all better again.  Hopefully next time it will last a lot longer.  We shall see...

The joys of being average: A 2 month update!

First I want to thank everyone who has sent love and support for my mom.  She is a tough cookie, is being treated by great doctors, and has, I can humbly say, the greatest family in the world supporting her.  Right, Mom?? :o)

Yesterday was yet another wonderfully productive day in what seems to now be my new "normal" life.  I woke at the ungodly hour of 6:30am to get the kids off to school.  I had breakfast, showered*(see note below), then met my mom at the mall to help her shop for a robe.  When the first department store did not have what we were looking for, we decided to try another.  I can walk with confidence (still carrying the cane for safety) within a giant department store these days, but schlepping from one end of the mall to the other is still not a good use of my energy.  We drove to the other store.

Once inside we ran into my aunt.  She was there to meet three of my cousins for lunch.  We joined them for a lovely impromptu family eat and gab fest!

After we ate my mom went home.  I decided to stay to do some shopping for me.  To put things in perspective, I could not even walk from the closest handicapped space in the parking lot to the front door of this store pre-Liberation.  Now here I was going from one store to another, shopping, dining, then doing more shopping!  I tried on many pairs of pants and stood for the seamstress while she pinned them to be hemmed.  Did I mention that I showered in the morning, too?!?

I have very rarely shopped in an actual store for myself in the past couple of years.  If I couldn't find something online with free delivery and a liberal return policy, I didn't buy it.  Sound familiar?

When I was done I was tired, but my legs weren't burning or aching.  I was not beside myself with cognitive fatigue either.  It was just plain "I've had a long day" kind of tired.  I carried my purchases to the car, climbed in, and sat there for a minute with a huge stupid grin on my face.  I still can't believe that I can do so many things that I once thought I would never do (without a mobility device and a buddy) again.

I have also had a dramatic improvement in my spasticity over the past two months.  Before my second  procedure I was taking 20mg of Baclofen three times a day.  I would need to stretch every time I stood up, and my first few steps were always jerky.  Even with that much Baclofen, my legs ached constantly, and I spent many evenings with my left hamstring resting on a heating pad.

Now I am down to 20mg in the morning, and 10mg at bedtime.  I am getting ready to cut the morning dose to 10mg and see how that goes.  My legs still get tight during the day, especially if I have been sitting too long.  But instead of needing a pill, I walk around a little bit and my muscles loosen up all by themselves.  I have been dealing with spasticity for at least 13 years.  I never thought my nerves would be able to heal enough to see this kind of improvement!  I assume that healing is happening.  I don't know how else to explain this amazing improvement.  I may never know what mechanism is at work to make these changes possible.  I am just committed to appreciating and documenting them for you, Drs. Haskal and Tornatore, and myself.  One day someone smarter than I am will be able to tell me why this is happening.  For now I'm just enjoying it all.

Happy Autumn everyone!

* Showering has long been an evening activity for me.  The heat of the water, standing for 10 minutes straight, and using a hot blow dryer used to act as a knock out punch.  Night, night, Nicole.  Now I can shower in the morning and still have strength and stamina to do other things, too!  Incredible!

Great news!

Just a quick update on my questionable balance of this past week:

 I had another excellent PT appointment yesterday.  Ginger had a cancellation, so I got one more session with her before she leaves DC for San Francisco.  I told her about my concerns regarding my balance.  We put it to the test, and it passed with flying colors!

This doesn't mean that I am a fantastic balancer yet, just that she could not see any decline from a week and a half ago.  I'll take it!  What a relief.

I am still paying excruciating attention to almost every move that I make.  It comes with the territory, I guess.  That's not a complaint, just a statement of fact!

Now I am going to spend my weekend counting my blessings, and trying to do that resting thing I've been talking about!