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

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)