How I know that I am restenosing

It turns out that it is not the weather that is slowing me down; it is the big "R" word:  Restenosis.  Yup, it is time for a tune up with my favorite "plumber", Dr. Ziv Haskal.

Everyone who has had the good fortune to have their CCSVI successfully treated has some level of anxiety about restenosis.  Will it happen?  When?  How will I know it is happening?

For me the signal is a slow return of symptoms that I haven't had to think about in a while.  This time I got to enjoy over four months of healthy bliss.  Last time I got two months of freedom from my most troubling symptoms.  The first time it was just over two weeks.  I'm making progress!

A couple of weeks ago I tripped over a leg of a stool at a restaurant as I was squeezing between hi-top tables on my way to my lunch date.  I went down as ungracefully as possible.  Nothing was hurt except my ego, thank goodness.  I reasoned that although most people wouldn't have fallen under those circumstances, I am not as able to recover from a stumble as a healthy person, therefore I bit the dust.  I chalked it up to bad luck.

The next day I got on my bike and began my usual workout.  I found that I was having trouble pushing myself to go as fast, and at the same resistance as usual.  Hmm.....  Must be my body still feeling a little out of whack from the fall, I figured.  But I made a note in my journal.

Seven days later I hit the floor again.  WTF?!?  I was walking across a lobby and went from tile to carpet.  SPLAT!  Again, nothing injured but my still-bruised ego, but the writing on the wall was getting easier to read.  A person with CCSVI who goes four full months without a fall, then catches the same toe twice in seven days is having a problem.  I also began to notice that the front of my torso was numb for hours at a time during the day.  YOU try controlling your walking and balance without benefit of your abdominal muscles!  Not easy, I can assure you.

I am happy to say that by using extra caution, I have not had another intimate encounter with the ground in over a week.  My energy is still good, and muscle strength is holding its own.  I had a fantastic time in Boston with my family, and rode my Segway through Faneuil Hall and the New England Aquarium with ease. Well, no tourist attraction is easy to navigate at the height of vacation week, particularly not the Aquarium, but I did very well under the circumstances.

I do not anticipate regressing back to an EDSS score of 6 before my 4th venoplasty treatment on May 11th.  The last two times I was treated I had to wait four months after my symptoms began getting worse.  This allowed enough time for all of my disabilities to return with a vengeance before we could balloon them all away again.  I am so grateful that this slow return of symptoms will be stopped in its tracks two weeks from now.

I firmly believe that I am one of the luckiest women on the planet.  Yes having MS and CCSVI stinks, but it is now treatable, I respond wonderfully to the treatment, my excellent doctor is still available to take care of me, and I have insurance that pays for it.  Grateful, grateful, grateful.

I personally know of only one person who has needed only one treatment for CCSVI.  He is a strapping 22 year old man who was diagnosed at 20, treated at 21, and one year later is enjoying life to its fullest.  I believe that he is the ideal candidate for CCSVI treatment.  Based on this one example, it appears to me, and our shared neurologist, that the earlier that CCSVI can be identified and remedied, the better the longterm outcome will be.   Youth is also a plus.

For the rest of us I believe that regular "touch ups" will be the standard of care.  Dr. H and I have had many conversations about the fact that he has no problem reballooning veins every 91 days.  Why 91 days?  That is the minimum time between treatments that insurance companies will pay for venoplasty for dialysis patients.  Interesting, huh?  If you do not know, dialysis patients whose blood is filtered via the jugular veins are prone to stenosis.  IRs have been treating their stenoses with venoplasty for years!

My bills for treatment have ranged from $12,000ish for my treatment at Georgetown, to $7000ish for each of my two treatments at University of Maryland.  That is nothing to sneeze at, but for three treatments in 2010, that total came to $26,000.  Had I been on one of the MS drugs, my yearly drug bill would have been anywhere from approximately $36,000 for Avonex to $48,000 for Gilenya.  I am blessed with good insurance, so I have not had to pay for any of my procedures because they were outpatient treatments covered under my hospitalization benefits.  I would have had hefty copays for the drugs, though.

Treating CCSVI and its restenosis may eventually be a much more cost effective way for insurance companies to manage MS symptoms than drugs, and without some really serious side effects, too!  If they can begin diagnosing and treating CCSVI in people when they first show symptoms of possible MS, maybe they will really only need one treatment, and be sent on their way!  How cool will that be?  It costs me nothing to dream, so dream I will.

Finally, I want everyone to know about a fantastic new book called, "CCSVI as the Cause of Multiple Sclerosis" by Marie Rhodes, R.N.

http://ccsvibook.com/

Marie was the second person treated for CCSVI in the United States by Dr. Michael Dake at Stanford University.  I bought the book because I wanted to have a resource to use to help educate patients and doctors about CCSVI.  I thought that I already knew everything that she was going to write about in the book.  Boy was I wrong!  She covers everything from the politics of CCSVI, to the history and epidemiology of MS and CCSVI, to treatment, to patient stories.  Each chapter has a "Plain language and summary" so you can get to the punch line no matter how much or little of the well documented information you want to read.  I highly recommend it for newbies and "know-it-alls" (like me), too.  It is appropriate and accessible for doctors and laypeople alike. What an awesome resource it is.  Thank you, Marie!

Until my next post I will try to keep my toes up, and my body off of the ground (unless I am down there by choice exercising or playing with the dog!)  Wish me luck!

Off we go!

Spring break is finally here.  April showers are totally cramping my soccer-playing daughter's style, and the weather hasn't felt very spring-like to me, but it really is here.  The cherry blossom trees know it, and so do my pollen-averse sinuses!

Changing weather has always been a difficult transition for my sensitive systems, as it is for many people with MS/CCSVI.  While I am hoping that this change of season will be easier than those in my past, I'll have to see how it goes.

We are driving to Boston for the week, and taking the Segway with us!  I got a handy-dandy Segvator lift to carry it on the back of the car.  This will allow me to explore Beantown with my children who will be visiting the city for the first time.

I have not set foot in the city of Boston since I graduated from college many, many years ago.  It is the city where I got my undergraduate degree, met my love, and, in all honesty, froze my a$$ off for too many months during my four year stay!

In addition to touring the city, we will take the girls to the campus of Boston University, and show them the block where their dad and I lived when we started dating.  We even named our first dog Buswell in honor of the street where it all began!

On an unrelated note, the American Academy of Neurology is meeting in Hawaii this week.  There is all kinds of $hit flying about CCSVI, and not surprisingly, most of it is not good.  Today's revelations include the statement that CCSVI is no more common in MS population than in people with other neurological disease or no disease at all (here).  There are also doctors who are saying that MS causes CCSVI (here).  Another report states that there "may be no benefit" from treating CCSVI (here).  What is insane is that all of these stories/commentaries are referencing the same single study out of University of Buffalo (here)!

Luckily there are sane doctors out there in Hawaii like Dr. Joseph Hewitt (here), and Dr. Robert Fox of the Cleveland Clinic (here) who are speaking up.  Dr. Hewitt has performed hundreds of venoplasties for CCSVI.  Dr. Fox is urging patients to wait to get treated, but he explains how the Buffalo study suffers from poor subject selection, and ill-defined testing protocols from Zamboni.  It's a fair assertion, and one that Dr. Zamboni is working to clarify.

With all of the controversy it should be clear to the neurologists that what is desperately needed are MORE studies.  Dr. Zamboni's one study is not enough to convince them that CCSVI and its treatment are real and effective at managing MS-like symptoms.  So, too, should they be equally skeptical of one study out of Buffalo which casts doubt about the theory.

Burying heads in the sand, and alienating patients is absolutely the wrong approach to dealing with this new-ish theory.  My neuro is well versed in the long-documented connection of MS and vascular abnormalities.  I am sure that he is not the only well educated MS neurologist out there!

Ignorance leaves people feeling vulnerable; knowledge truly equals power.  How much more influential would these neurologists be with their patients if they had reams of studied to support their recommendations? Refusing to participate in studies makes it virtually impossible for IRs to do the work that will satisfy these neurologists' very high standards.  They can't have it both ways.  Help with discovering the answers, or shut up and get out of the way!  We just need a few brave neuros to support this research to start.  Eventually the rest will have to pay attention, or even join in the fun!  It will happen.  This patient population will make it so!

Happy spring break everyone!

Busy, busy, busy

 Last week may have been boring, but this week has already been exciting and very UNboring!

On Monday I spent the morning with a friend in the recovery room after her second venoplasty.  She was originally (under)treated by Dr. Neville at Georgetown, just like I was.  This is just a statement of fact, not a judgement or criticism!

This time she was treated by Dr. James McGuckin at Vascular Access Center in DC.  Although Dr. McGuckin is not working under his own IRB-approved study, he is asking his patients to participate in The Hubbard Multicenter Registry.  According to the website:  "The Registery collects the data after patient identifiers have been removed, analyzes the data and reports the findings.  The primary purpose of the registry is to collect information on how common CCSVI is, and whether MRI and clinical changes occur following treatment."

Hey, it's better than nothing!

I spoke with her Tuesday morning, and she is already experiencing amazing improvements in vision, pain, cognition, and walking.  I am so thrilled for her!

Today (Wednesday) I had an appointment with my favorite neurologist, Carlo Tornatore.  I realize that I am in a sad minority who really like their neuro.  That is probably because Dr. T is one of only a small number of neurologists who are open-minded, and actually interested in learning more about CCSVI.

He evaluated my walking. and was thrilled to see that I am at an EDSS score of 3.5.  This means that I am "fully ambulatory but with moderate disability in one FS and more than minimal disability in several others."  I would say still at 3.5, but when he last evaluated my walking in August, it was two weeks after my second treatment.  My gains lasted for two months, then I regressed back to my sorry state of an EDSS of 6.0 (requiring a cane full time).  As you may remember, I was retreated in December, and I am now back down to EDSS 3.5.  Sorry.  It confuses me, too! 


I think that the EDSS is a poor way of measuring disability, but it is an easy one for doctors to use to quickly assess walking, a critical measure, but only one small component of MS.  Had he taken me out to walk on grass, or a cobblestone street, I would have needed that cane for sure.  I used to need it even in his perfectly smooth hallway, too, so it is still impressive to him that I easily walked back and forth several times, cane-free.

Dr. T. had a first year medical student with him at my appointment.  Boy did he get an education today!  Dr. T. told him all about CCSVI, and my experience as the first person treated at Georgetown.  He even pulled up the before and after pics of my right jugular vein, and the local CBS news piece on his computer to show the student!

We also talked about the benefits of this treatment for younger patients.  He told the student about a patient of his who was diagnosed at 20, treated for CCSVI at Georegetown last March at age 21, and is now totally symptom free!  I love that story!  He agreed with me that had CCSVI and this treatment been around when I was diagnosed at age 20, I would probably have similar results.  He believes that young veins are more responsive to this treatment.  I also added that there is less time for permanent damage to myelin and axons if CCSVI is caught and treated early. Hey, I can teach this kid a thing or two, too!

I took the liberty of telling him that the majority of neurologists are downright hostile to the theory of CCSVI.  Dr. T tried several times to explain why his fellow doctors were behaving the way they are.  After several stops and starts he gave up.  He said that he could not understand how his colleagues could not be at least curious about CCSVI and its potential impact on their patients.

In July, 2010, Dr. David Hubbard told the crowd at the CCSVI Symposium in Brooklyn, NY, "I'm a neurologist and for the first time am a bit embarrassed about it."  

It seemed to me that Dr. T. was feeling that way today, too. :o(

Towards the end of my appointment I asked if he was contemplating doing a full-blown study of CCSVI treatment.  Without giving me a definitive answer, I got the impression that Georgetown may not be done with studying this condition and its treatment.  When 29 other patients and I were treated last spring we were under the impression that we were actually in a study.  We now know that it was not an official study, but more of a preliminary exploration of venoplasty for CCSVI.  It was very frustrating at the time because there was not a lot of good communication among the vascular dept., neurology, and patients.  I now appreciate how impressive it was that they tried it at all way back then!

We need good studies of venoplasty done at high profile universities.  The stumbling block for so many Interventional Radiologists who want desperately to do studies is uncooperative, or downright hostile neurologists.  We at Georgetown are so lucky to have a head of the MS Center who is not afraid of, and is curious to know more about CCSVI treatment.  I am so sad that that makes him such a shining exception.

I told my doctor and his student that I have always thought that Dr. T was very special.  I am appreciating him even more these days for the simple fact that he has an open mind.  That should never be a trait that makes a doctor unusual or remarkable!  But right now in the field of MS neurology it does, and he is.  Now if only we could clone him!

BORING

For the first time in many months I have absolutely nothing to say about myself, except that I had a very average week.  No thrills, no spills, just getting it done.  Lovely.

While my life is only interesting for its boring normalcy, genuinely exciting things are going on in Chicago, Illinois these days!  The Society of Interventional Radiology (SIR) is holding their conference there, and I expect fascinating news to come out this week.  First and foremost doctors have released a study "Interventional Radiologists Advance MS Research: Vein-Opening Treatment Safe" which should calm the fears of the good neurologists who are counseling their patients to avoid this treatment for safety concerns.

Tonight is an extraordinary Roundtable meeting of the best and brightest doctors in the US who are studying and treating CCSVI.  This event is being made possible by the CCSVI Alliance, and anyone who is in Chicago and interested in attending is welcome!  What a gift it is that these professional are sitting down for a moderated conversation about CCSVI, and that they are allowing the public to observe and ask questions.

This CCSVI thing just keeps getting interestinger and interestinger!  Don't worry.  I'm allowed to make up words because Miriam Webster is a personal friend of mine. ;o)  

Overstimulated? Not me!

My basketball-playing daughter had her first tournament this weekend.  It took place in a facility which has approximately 15 courts all being used at once.  A quick calculation makes that 10 kids and two coaches on each court, plus two referees with whistles, and at least one parent cheering for each kid.  That adds up to a minimum of 360 people in one gigantic open space.  Did I mention the 15 constantly bouncing balls, too?

My husband took her to the first game in the morning.  After he scoped the joint out, he called to warn me about the noise level, and the hugeness of the facility.  The dear man also remembered to note that the bathroom facilities were about a football field's length from the court on which our daughter was playing.

I drove the 45 minutes to the ginormous gym with my other daughter to meet them for the two afternoon games. I would not have even considered taking this trip alone pre-Liberation.  It would have been way too much driving, round trip, not to mention the stimulating events while I was there.  Granted I was not the one actually playing, but there was a time when just being surrounded by all of the noise and activity would have made me feel like I had run a marathon!  Exhausted!

Not on this day, though.  I sat, cheered, and even easily trekked to the bathroom once during our 3 1/2 hour, two game afternoon.  I felt great, and her team won one of the games I got to watch.  Go Flames!  We finally left at 6:30.  I had to stop for gas, drive 45 minutes back to our neck of the woods, and even had dinner at a restaurant before we made it home sometime after 8:00.

I was amazed at what I was able to accomplish.  I drove to Baltimore and back a few weeks ago with no problems.   Considering I haven't bothered attempting to drive any real distance in years, yesterday's trip is still noteworthy.

This was the first opportunity that I've had to be in a wildly stimulating setting and see that my body did not shut down in its midst.  Wow!  What a wonderful experience to be able to support my girl without sacrificing my own health.  On top of that we left the house at 8:30 this morning (hubby drove us all) to go back for one last game, which they won handily.  My energy level was great, and my walking was good, too.  Pre-Lib Nicole would have needed at least a day to recover from yesterday's activities.  Not the still-improving Nicole, though.  What a gift!

I now have one more unexpected benefit from treating my stenosed veins to add to my list.  My totally unscientific belief is that my sympathetic nervous system is better able to handle sensory stimulation.  What a wonderful surprise!  I did not even realize how debilitating over-stimulation used to be on my body.  Looking back I realize how often just going to a party with music and conversation would wipe me out.

I went to one of those parties a couple of weeks ago, and didn't even appreciate that I wasn't fazed by my surroundings.  I was too busy being proud of myself for walking up and down steep steps, and playing a lousy game of ping-pong which requires balance and some semblance of coordination!

It is officially Spring.  Warm weather will be here soon, and hot sticky temperatures won't be too far behind.  My strength and coordination are much better these days when I first get out of a hot shower.  I am anxious and curious to see if my heat tolerance will be better this summer. With all of the healing my body has been able to accomplish in the past 3+ months, I have some real hope that I may not actually have to hibernate all summer in my air conditioned house.

I accept that some things will not get better without some far off stem cell treatment.  I am grateful for what I am able to do today, and will appreciate any more improvements that may develop in the future.  If I just maintain my current status, and stop the progression of disability, this treatment is still a grand slam home run in my book.

Up, then down, then up again!

I had a couple of rough days last week.  My legs felt heavy and ached sometimes, and I felt a little more off balanced than usual.  I forgot to take my purse to the grocery, and only realized it when I was in line to check out.  I also forgot to take my daughter to a friend's house for regularly scheduled date.

What was happening to me?????

Well, of course my first thought was that the dreaded downward slide had begun, and right after I so proudly announced that I had passed my three month anniversary!  How unfair!

Then I took a deep breath.  I had been a little stressed because my talented daughter just made a great basketball team which is going to require a big commitment of our family.  Good stress, but stress nonetheless.  Then while getting ready for bed on the worst of the two days, I noticed the band aid on my arm.  I forgot that I had seen my primary doctor and gotten a tetanus shot which also included pertussis and a couple of other boosters for good measure.  I now believe that that shot had a lot to do with my problems.

By Saturday I was feeling like a million bucks again.  I woke, showered, rested for a little while, went shopping at a department store, then came home and got dolled up for a friend's birthday celebration.  I went to the party and walked down some kinda steep basement steps, played a lame (but no lamer than anyone else) game of ping pong, then came back upstairs later.  My balance was sharp, legs didn't hurt at all, and I didn't forget one thing all day!

Today is Tuesday and I'm still on a roll.  Whew!  I am both relieved and thrilled, in that order.  Most people develop physical manifestations of stress, and I am certainly no exception.  Some people can't sleep; evidently I forget things and get leg pains.  Good things to remember for the next time that stress gets the better of me, oh and, when I get a shot at the same time!

There is lots of exciting things going on in the CCSVI world these days.  As I write this many of the leading docs in this field are in Bologna, Italy at the first meeting of The International Society of Neurovascular Disease.  This Society was formed when many of these doctors convened for the CCSVI symposium in Brooklyn, NY in July, 2010.  They have just agreed on a standard protocol for all doppler Ultrasound testing for CCSVI.  This step was desperately needed to ensure that all studies that are done to test Dr. Zamboni's theory are using the exact same techniques.  That will hopefully eliminate, or at least greatly reduce, the number of dubious studies that claim to refute Zamboni's results.  If his numbers do not hold up in studies using these standardized protocols, so be it.  We need objective information about this procedure and its testing protocols.  All of the wonderful anecdotal stories in the world won't convince the Canadian government to pay for this treatment.  We need the hard science.  These protocols just levels the playing field so that everyone is using the same standards, regardless of any bias they may have. Too many people have a lot of money and turf at stake if CCSVI is proven to be a big factor in the cause of MS, or at least in its symptom management.  Venoplasty is no $3000 monthly infusion, pill, or daily injection that needs to be taken for life.  That could cramp a lot of doctor's supplemental income and individual's stock portfolios!

The other big news is the Doctor's Roundtable Discussion:  CCSVI & MS scheduled for March 29th during the Society of Interventional Radiology conference in Chicago.  The names of participating doctors are listed, and it is very impressive.  It is being presented by the CCSVI Alliance, and everyone is invited!  I can't make the trip, but I am happy that it will be professionally recorded and hopefully be available on the Alliance's website.  History is being made this month, and we are all here to bear witness!

So much has changed since I had my first Liberation Treatment one year ago this month.  Wow.  The growth of this field has been nothing short of meteoric, yet we are still in its infancy.  I am so excited to see what this next year will bring!  My wish is for safe, consistently effective, local treatments for all who long for, and are entitled to, this procedure to correct a real vascular condition.  If it improves some, many, or all symptoms of MS, all the better!

My 3 month milestone!

It felt great to climb up on my soapbox last week.  I got to highlight a woman who is doing so much for the CCSVI cause.  I also got a load off of my chest about my frustration with the MS Society.  I'm afraid that in all of my enthusiasm I forgot some important points.  The view from on high must have clouded my vision!

First, I must thank my friend Denise for pointing out that ballooning veins is called venoplasty, not angioplasty.  Although many in the CCSVI community use the words interchangeably, they are two very different procedures.

Second, I unwittingly rallied many people to want to support CCSVI studies, but neglected to give suggestions for where to channel their precious dollars.  At the present time I am not aware of any active studies that are soliciting donations.  Dr. Haskal has a fund that was set up at the University of Maryland at the request of a grateful patient.  WHEN he gets going, the money will be ready to support his efforts.  Many people have directed donations to this wonderful doctor, and I think that the money will be well used.  You can find his page here.

In my humble opinion the best place to direct funds right now to support CCSVI education and research is the CCSVI Alliance at www.ccsvi.org.  They just had their first fundraiser, a Walk n' Roll in Tampa, Florida this weekend and raised over $26,000!  Like the MSketeers they also have contacts with some clinical trial funding sources.  The doctors trust the Alliance, and are working hand in hand with them. They have just announced that they will sponsor an informational symposium in Chicago to coincide with the big Society of Interventional Radiology meeting at the end of March.  The discussion will be moderated by Dr. Michael Dake, the first IR to treat CCSVI in the US.  I am proud to disclose that I am a member of the Alliance's Patient Advisory Board.

Disclosures are all the rage these days.  It is very hard to find any doctor who has not been compensated by a drug company in some fashion.  Although this by no means suggests that they are all beholden to Big Pharma, it is important to know who may have conflicts of interest when it comes to opining about, or studying CCSVI and its treatment.

I guess that I have, at least temporarily, broadened the focus of this blog because talking about me is getting a little boring.  How awesome is that?

I passed my three month anniversary last week, and my body is giving no indication that it is getting weaker in any way.  In fact my wonderful PT dismissed me from therapy last week!  I would have liked to continue working with her forever, but my insurance only covers 15 sessions per year.  As of the beginning of March I've used 10 of those precious sessions.  We are holding on to the rest of them just in case I need her at any time over the next 10 months.

We did a re-eval in anticipation of my dismissal.  I have shown improvement on all areas tested except some of my left hip muscles.  Hey, I've got to have something to keep working on!  Now it is my  job to continue building my strength and stamina at home.  I am making appointments with myself on the calendar, just as I did when I was seeing my therapist.  This is no time to get complacent!

For anyone interested in my post-procedure drug regimin, I was put on a full strength aspirin for three months following venoplasty.  Dr. Haskal just told me to drop to a baby aspirin for another 2 months.  Whatever you say, Doc!

My calendar just reminded me that I have an appointment with my bike and therapy bands, and I don't want to be late!  Until next time...