Just Dropped In to See What Condition my Condition Was In
I am overwhelmed and humbled and inspired and so very grateful for all
the messages of love, support and encouragement that you all have sent
my way. Thank you from the bottom of my heart. In addition to the love
and support, a lot of you had questions for me, but I couldn’t answer
them because I was refracting all sensorial cues through the prism of an
iron-poisoned brain, and haven’t really been able to do much more than
sit in a recliner and watch the Real Housewives of (fill in the name of
the city here) be bitchy and try to out-fabulous one another. (If you
have no idea what I am talking about, all I can say is, “Good for you,
you are a better person than I am.”)
I will answer some of your questions by telling my story. This really isn’t All
About Me (actually, it is), but it is All About Us, because we are each
a piece of this big ccsvi puzzle. To recap, last February I was slumped
in a recliner watching the dead-behind-the-eyes Kardashians on the E
channel because that is all my inflamed brain could handle, and in May I
experienced a miraculous restoration to health by undergoing a balloon
angioplasty of my jugular and azygous veins performed by Dr. Tariq Sinan
of Kuwait. I announced to the ms/ccsvi cyber-world that twenty-eight
of my symptoms were mercifully alleviated, and my facebook, youtube and
email inboxes filled daily with inquiries from people from around the
world. I had a head-spinning five months of riding the Team Tariq Train
and commuted to Egypt accompanying other pwMS seeking relief. I had the
extraordinary experience of observing Dr.Tariq’s team perform over
twenty-five angioplasties, and I even found myself writing a set of
instructions on how to perform a balloon angioplasty dictated by Dr.
Tariq Sinan and Dr. Hussein Safar and vetted by Dr. Tariq and Dr. Sal
Sclafani. I’m still not quite sure how I got from slumping in a
recliner to being a front row observer of a major medical paradigm
shift, but there I was. The questions kept on coming, as each new wave
of pwMS learned of ccsvi.
How do I know if I have ccsvi?
Where do I go for screening?
What is the best method of screening?
What if I test negative for ccsvi?
Where do I go for follow-up care?
What is standard procedure for follow-up care?
What about stents?
What about anti-coagulants?
Will I restenose?
What will I do if I restenose?
How many times can I have an angioplasty?
Do repeat angioplasties weaken the veins?
Can the angioplasty make me worse?
Can intracranial veins be treated?
I’ve been treated – how do I know if I’ve restenosed?
Am I experiencing an MS relapse or restenosis?
We turn to one another with these questions because we’ve grown to
trust each other’s experience more than we trust most doctors. After
all, we have collectively become a clearinghouse of ccsvi information.
The challenges facing those undergoing the angioplasty are many: there
is no standardized after-care protocol, most patients are more informed
than many of the doctors, the doctors who are informed and experienced
are difficult to locate, and there are no longitudinal studies to know
what happens next. Because treating ccsvi with angioplasty is so new, we
are finding our way as we go. Those of us who undergo this procedure at
this time must have a high tolerance for uncertainty and ambiguity.
However, the more of us who do undergo the procedure, the less
uncertainty and ambiguity there will be for those who follow us. We are
now teetering on that tipping point. However, until we reach critical
mass, being a pioneer, or a trail-blazer, or a way-shower is not for the
faint of heart.
Fortunately for me, I had some very courageous way-showers lighting my way. Denise Manley’s “I can
jump!” video gave me resolve (that swimsuit needs to be an exhibit in
The CCSVI Museum), and Sam Kabbani’s “Kuwait =MS” Facebook page gave
me Dr. Tariq Sinan’s name. Eileen Fix gave me friendship and poetry and
a starting point as we attended a meeting where the speaker was SammyJo
Wilkinson who had the procedure at Stanford. Devin Hubbard gave me a
perfectly timed phone call and his excitement about his restored state
of well-being pulled me out of a dark well of dread and onto a plane;
and my beloved sister, Renee Chang, who together with her father, gave
me love as they took me into their hearts and under their wings when I
showed up alone in Egypt.
When I returned from Egypt, my vague plan was to find an IR in the Seattle area for
follow-up care, and deal with the risk of restenosis by crossing the
Restenosis Bridge when I came to it. I had only been home for a few days
when Serendipity smiled upon me and my phone rang. My name had finally
made its way to the top of Dr. Siskin’s waitlist, and it was Dr. Siskin
Himself calling to ask me some preliminary screening questions. I
thanked him for his call, told him my angioplasty was a done deal, and
asked if I could fly to Albany to see him for after-care. He told me to
call Dr. Torrance Andrews who was the head of the radiology department
at Swedish Hospital here in Seattle, and tell him Dr. Siskin sent me. So
I did. (Dr. Andrews mentions our meeting in minute 13:30 in his video Advances in Radiology, Part II.)
During my consultation with Dr. Andrews, he told me he would treat
people who restenosed, but would not do the initial angioplasty.
Apparently, he changed his mind, as he performed his first balloon
angioplasty of the jugular veins shortly thereafter. I was with Patient X
when he quietly had his angioplasty on July 2nd, 2010. I asked Dr.
Andrews if I could refer people to him and he agreed. I warned him he
would be "deluged" with calls, and by the expression on his face, I
don't think he believed me. "Are you quite certain?" I asked again. He
assured me I could give his name to people interested in having their
ccsvi treated.
His office was deluged with calls.
During my consultation, Dr. Andrews did not examine me, run labs nor
have an ultrasound performed, so I had no clinical information on my
physical state. Nine days post-procedure I ran a fever and "crashed,"
so I went to the E.R. The attending physician found my story
fascinating, and ran every relevant test he could think of. I felt
reassured by all the beeping equipment, but knew this was not a
practical protocol for after-care. However, many of us do this in the
face of a scary symptom precisely because of the lack of available
follow-up.
Fortunately, on that occasion, all I had going on was dehydration and a sinus infection. Soon
thereafter, I went to my G.P. for follow-up and asked for PT/INR tests
(International Normalized Ratio and prothrombin time) which measure how
quickly the blood clots. I learned the need for this test after reading a
Facebook post from Joan Beal. (Joan is the woman who, Zamboni papers in
hand, approached Dr. Dake at Stanford on behalf of her husband who was
diagnosed with MS.)
Three months post-angioplasty I saw my neurologist here in Seattle. My MRI with
contrast showed no evidence of active disease process, and my EDSS
(expanded disability status scale) score was zero. (Zero is normal. Ten
is death.) My sleep study showed that I no longer had sleep apnea. I
could skip, dance, ride a bike, cartwheel and stay up late. In terms of
a subjective quality of life score with zero being "wishing I were
dead," and ten being "I am so in love with life," my pre-angioplasty
score was zero and my post-angio score was most days ten, and some days
nine. This held true for five months.
Somewhere between the end of October and the beginning of November,
fatigue and malaise crept back into my life, my tinnitus incrementally
increased its volume, my pain-tolerance began dropping, stairs grew
steeper, and I found myself sitting in the recliner watching a lot of
tv. Sleep became fitful, and the horrid sensation I called Stainless Steel Head,
which gave me a creepy sense of detachment and unreality, returned.
One Friday night, after experiencing pain in the clavicle all day, I
discovered a bump in my neck. Once again, in lieu of standard follow-up
protocol, my husband took me to the ER. An extensive ultrasound showed
no evidence of thrombosis.
Was my MS relapsing? Was I restenosing? Is it possible that some veins other than
my jugular and azygous veins were involved and needed treatment? I had
so many questions, but decided to wait out my symptoms, and then two new
and disturbing ones presented. I began to slur and drop things – just
like my mother did a year before she died.
Let me give you a little back story to help explain why I found these
two symptoms so alarming. I was diagnosed with MS in December, 2006.
Four months earlier, in August, my mother was diagnosed with MS. Three
months later in November, she was diagnosed with ALS in addition to her
MS. Intuitively, despite what her well-respected neurologist said, I
never accepted that my mom had two separate disease activities
co-occuring. What are the odds of someone having MS and ALS
simultaneously?
Mom called her MS Missy and her ALS Allie, and was never sure if it was Missy or Allie causing her trouble. I had
the summer off, so I moved in with my mom and could barely let the
ramifications of my own diagnosis sink in because my mother’s care grew
more extensive with each day. I applied her make-up (I come from a long
line of girly-girls), dressed her, fed her through a percutaneous
endoscopic gastric tube, suctioned her when she choked on her saliva,
and emptied her catheter as needed. Her inability to speak did not
dampen her impulse to tell me what to do and how to do it, so she
devised a very time-consuming communication system. I was beyond
exhaustion, and my mother moved in with my sister. I was unable to
attend my mother’s funeral due to my own hospitalization. I don’t
remember much of 2008.
During the Dark Days, my beleaguered brain and sleep apnea conspired against any hope I
had of restorative sleep, and the chronic fatigue I experienced during
my waking hours kept my quality-of-life meter fluctuating between mildly-miserable and woefully-wretched.
I manually added ingredients to my system to chemically create a
semblance of functionality. I took stimulants in the morning (adderall),
and sleeping pills at night (ambien) and sardonically dubbed the two
medications “Stop and Go.” This is neither a plea for sympathy nor the
confessions of an addict; rather, it is a simple Just the facts, Ma’am statement of daily life for a person with MS.
“You do have good days, don’t you?” My friend’s tone of voice held a
note of hope that conflicted with the fear in her eyes as she considered
the possibility that I might not respond in the affirmative. I tried to
soften my answer and still be honest as I replied, “Well, I have some
days when I feel less unwell than other days.” She looked stricken, and
I made a note to myself to never again talk about my dis-ease in ways
that would evoke that expression on anyone’s face. It hurt me to see it.
The truth is, though, consciousness was just plain unpleasant at best.
My dear friend, Brooke, cried when I twirled for her upon my return
from Egypt, and my sister exclaimed, “My sister’s back!” upon hearing my
voice on the phone. I no longer sounded like I was eighty years old. I
was acutely aware that I was living inside a miracle, and I experienced
a joy that one has when returning from the near-dead. Dr. Tariq gave me
my life back.
So how do you know if you’ve restenosed? Dr. Tariq always answered that question by saying, “It’s
simple. If your symptoms return, you’ve restenosed.” Apparently, I’ve
restenosed. And I knew it was time to seek retreatment when I caught
myself wondering if I had enough ambien for a successful overdose.
Tomorrow Michael and I are flying to Newport Beach, California to see
Dr. Arata at Pacific Interventionals. I am skipping the MRV and going
straight for the gold – the venogram. In addition to my azygous and
jugular veins, I am going to have him take a peek at my sigmoid and
transverse while he’s there. I’ve maxed out every credit card and
flipped sofa cushions looking for change. I am sick and discouraged and
hopeful and tired and sorry I cannot muster the wherewithal to say
something encouraging. I am still committed to ccsvi treatment. This
soldier is showing up for duty, Sir. It is beginning to look like ccsvi
treatment is a process, and that several treatments may be required.
Because we are at the front of the line, we are helping all those behind
us with what is being learned by our experience. Even though I’ve
restenosed, or perhaps some intracranial veins are causing trouble, I
bought myself nearly six glorious months with the first angioplasty.
Although I am a rational empiricist by training, I also have inherited the Darna Shealladh that runs in my father's family. The English translation of darna shealladh is Second Sight, but I like to call it Irish Radar. My decision to be
treated now, by Dr. Arata, and to have my intracranial veins checked has
been fueled by a combination of extensive research, my experience as my
mother's caregiver as she fell down the rabbit hole of ms/als/, my own
experience of refracting all sensorial cues through the prism of an
iron-poisoned brain, and my Irish Radar. It’s time. It’s the right thing
to do. How do I know? I just do.
You are all in my heart. Every one of you.
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