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!