“The opposite of faith isn’t doubt. It’s control.”
It’s official people!!! Surgery to release my occult tethered cord with Dr. Henderson at Doctors Community Hospital in Lanham, MD (a suburb of Baltimore and about 20 minutes from DC, also home to THE Bachelor franchise legend John Paul Jones lol) has been scheduled for January 22nd, 2020-that’s 118 days from now! To some degree, that seems forever away but at the same time we have been on the journey to reach this point for over two and a half years so hey, what’s another 118 days, right?! As crazy as it sounds, I am EXCITED about having neurosurgery (remind me of that when I am screaming my head off in insane amounts of pain five days post op wondering why in the world I was ever excited about this), because it is an opportunity for improvement and hopefully a reduction in pain. In my journey, I have always said I didn’t want to hit at dead end. I never want to be out of options-this presents us with another option.
I had planned on splitting up this blog post into four
sections, but in complete honesty I have been sleeping about 23 hours since I
have returned home from Baltimore and am exhausted emotionally, physically and
mentally. Hopefully in the future, I will be able to write more in depth: a
summary of my Dad & I’s trip to Baltimore last week, a description and explanation
of the surgery, a FAQ section regarding the surgery and a brief life update
outside of the surgery, since I know there has been so much going on in my life
and I have done a poor job of keeping the world updated, to which I say thank
you for your constant patience and encouragement, despite my lack of updates
but for now, I am going to answer the main questions I believe ya’ll will have.
My hope is that this post is a “one stop shop” for questions regarding my surgery
and condition is, of course rare, which is seemingly the case with everything
in my life! If you are to Google “occult tethered cord”, you are going to get
very, very limited results-almost all of it medical journal articles or medical
conference reports done by the small handful/half a dozen doctors we’ve been working
with for the past three years. They are the ones at the forefront of research,
education and treatment of occult tethered cord patients, especially those who
are also suffering from degenerative connective tissue disorders, like myself.
I feel so honored to have been one of the patients that they have taken under
their wing and into their “web of knowledge and treatment”. They are hoping to have
a paper out and published in many medical journals within the next year or so,
so don’t forget me when I’m famous as patient number 85qst9! **wink wink*
Main Surgery FAQ’s:
What is the exact surgery? I’m going to do my best to
explain this in simple terms: We will arrive in Baltimore at least a day early
as on the 21st (most likely
flying in on the 20th, although nothing is booked or final in
regards to travel plans at this moment) as at the hospital on the 21st I will
have cross typing and pre op blood work done, we will meet with the pharmacist
that we will have had contact with prior to our arrival due to my complex situation
and will continue to work with during my time in Baltimore and an anesthesia consult,
due to my high tolerance. I will be having neurosurgery on January 22nd
at Doctor’s Community Hospital by Dr. Fraser Henderson on my occult tethered
cord. The surgery will take about 3.5 hours (if all goes as planned with no
complications) in which Dr. Henderson will remove roughly a three-inch section
of the bone around S1 (tailbone area), pull back the dura layer that separates your
skin/bone from the spinal cord and then he will clip the tethered portion of my
spinal cord. In the average person, this portion of your spinal cord is .5 mm, Dr.
Henderson is anticipating this portion of my spinal cord will be 1.5-2mm.
Before he clips, he will do a test with the nerves and the spinal cord to make
sure he’s clipping the tethered spinal cord potion (called the phylum or filum)
and not any of the nerves, as to avoid paralyzing me. He will then put a patch
over the dura area (that he removed to get to the spinal cord) and then will place
the bone back. He is the only one of four neurosurgeons in the world who does
this surgery and the only one who does it this particular way. His experience,
dedication to researching these rare comorbidities with other brilliant specialists
coupled with a different surgical approach, is the reason he is the best in the
world-and has the best outcomes.
What is the recovery period like? To give a definite time period
for my recovery period may present the greatest challenge, as my body heals
very, very slowly. We’ve essentially started saying that however long they say
recovery is going to take, triple it. So, this is the timetable we have been
told but please keep in mind, mine will be longer-I am just a slow healer and
we’re operating on the phylum of my spinal cord for peep’s sake! I will be
strictly bed bound for the first three days in the hospital, and then on day
three I will have my catheters removed and will be given bathroom privileges. Baring
no other surgical complications, this is the day most patients usually go home,
then return to Dr. Henderson for a follow up on Monday, then are asked to stay
in Baltimore until the weekend, and then are allowed to return home. However,
in order to leave the hospital, you must be able to have your pain controlled by
oral pain meds (or in my case liquid since I don’t absorb pills well due to
gastroparesis), so there is a good chance I will be in the hospital longer than
that. Both of my parents will be in Baltimore with me, both there before,
during and immediately following the surgery, and then most likely alternating days
and nights, switching off when Dr. Henderson stops by for rounds because if you’ve
ever been in a hospital or recovering from surgery yourself, you know that you
are in a LOT of pain yet unable to advocate for yourself so it is absolutely necessary
that you have someone there with you who’s brain is sharp and with it and can
fight for you. His overseas patients (I kid you not, he sees and operates from
patients all over the world) usually wait a month to six weeks to fly home, as
that is when you are off strict bed rest…usually. Please continue to keep in
mind this is all relative. This is spinal cord surgery, so you are recovering
and have limits for a long period of time. He requires other patients to stay
in the area for seven to ten days following operation as to make sure that there
are no immediate concerns or post-operative complications. Again, however, I
may have to stay longer as I am worried about the pain of traveling home due to
the fact strict bed rest following surgery, and as you know that’s not how
flying works.
What symptoms should this improve? Dr. Henderson made sure
we were aware that as with most surgeries, there are no guarantees and that the
main goal of this surgery is not improvement, but rather stopping the progression
of symptoms, which makes sense is as over time my symptoms have worsened.
However, he said with 83% of his patients (I believe that is the correct statistic,
but it is high, I know that!) saw an improvement. The main areas of improvement
they saw were: decreased sensation of numbness and tingling in legs, decreased
pain in low back, tailbone area and legs, improvement of urology symptoms (not
going to go deep into that but if you want more detailed info hmu), increase in
limb strength and possible decrease in headaches, migraines and neck pain. I
know this won’t be a cure all, and I am more than aware of that. However, so
many of those symptoms have been progressing so to know we can be stopping them
where they are sounds pretty darn good to me and improvement?! Dang, I am ALL
FOR THAT! Even if it means half the headache days, or only 15% improvement in one
area that is all a step in the right direction. Truth be told, we don’t know
exactly what symptoms this surgery may improve or slow down because we don’t
know what all the tethered cord is impacting.
How do we know this is the right decision to make? One of
the things that makes diagnosing an occult tethered cord so challenging is that
you aren’t able to view it on any radiology imaging, so the doctors have to go
off of clinical symptoms (which I match 95% of) and urology testing that
reveals you have a neurogenic bladder, which I tested positive for a neurogenic
bladder type two. This is part of the reason it has taken so long to get this
diagnosis, not to mention, that there are very few doctors who deal with occult
tethered cord and so getting in to see them, having them talk with one another and
having them all on board to operate took quite some time, as with anything
operating is the last step you want to take.
Will there be a need for future surgeries? Unfortunately,
there is a 20% chance that my cord could become retethered. Dr. Henderson doesn’t
completely understand why this happens, and it is still something he is investigating
as to why it happens. He has seen in two patients the symptoms return after a
year, but most of the 20%, their symptoms return after the ten-year mark. If
the testing and clinical diagnosis does in fact reveal that the tethered cord
has returned, he operates again but at L1 (higher up in the spine); but that is
a more difficult recovery. I don’t know what the percentage is that it comes
back a third time, but it does happen/has happened, and Dr. Henderson will operate
one more time if the tethered cord has returned but then he is done.
Dr. Henderson talked with us about
the possibility of needing surgery at C1-C2 in my neck to correct craniocervical
instability and/or surgery to address the multiple tarlov cysts in the lumbar and
sacral areas of my spine. However, one neurosurgery at a time! We will see how
this surgery goes first-how/if the symptoms improve, how my body handles
surgery, etc.
What are you most afraid of? At the moment, there are three
things at the moment I am most fearful of. The first of these being, the pain
between hospital release and coming back home. If you have had surgery before,
you know the transition from having IV pain medications and nurses to help you
out when needed to being responsible for your pain management care with not as
strong pain medication on your own that takes longer to kick in is an adjustment.
With that, my amazing pain doctor, Dr. Christian Samuelson, has promised he
will do anything and everything to make sure my pain is managed; but that is a
much bigger challenge when you are working with other doctors and another hospital
and you’re working from two different states! For those of you who don’t know,
I have had some HORRIBLE experiences in the past with doctors not taking my pain
seriously in and out of the hospital, leading to my pain not being well treated-leading
to unbelievable amounts of screams and tears. This is my Dad’s top fear, as he absolutely
does not handle seeing me in pain well. Due to prior pain mismanagement, still
to this day I have nightmares about my pain not being handled well during
surgery (lack of anesthesia medication and management) and following surgery
and hospital and at home. It has become so bad that on my list of things to
work on with a therapist, is to do EMDR to cope with some of this past trauma.
My second big fear in some ways
ties in to the first, I am guessing we will want to get back home as soon as possible
so we can be under the care of my pain doctor in our home state, our family can
be reunited and my parents can get back to work (tied into the third fear).
With that being said, you are not supposed to do sitting due to pain until weeks
four to six, but the flight home would be around week two. I am absolutely
terrified about the amount of pain I will be in and how in the world I will survive
all it takes to get to the airport, get through security to the gate, board the
plane, a three hour flight home, deplane and then drive home to San Antonio…truly
just the thought of doing so right now gives me anxiety as traveling always
increases my pain, I can’t imagine how much it’ll increase my pain and set me
back in my recovery. So, with that being said, if anyone has a private jet that
they want to let us borrow for a one way trip from Baltimore from San Antonio
when I am cleared to come home so I can skip security and all the waiting in
the airport and I could even lay down and take my pain meds and possibly even
sleep that would be wonderful and I would love you forever! (only half kidding
about the private jet part ya’ll…)
Third, I am afraid about the
financial and emotional toll this surgery will have on my family. With my
parents being with me in Baltimore for the actual surgery and the immediate
time following, that means my Dad will be earning limited income as being a private
practice psychologist, the only money he will be making is the phone call
sessions he is able to take, that he will have to strategically plan. My mom
will most likely have to take a leave from her job, meaning she won’t be making
any income either. Saying big prayers that we don’t have any unexpected
complications leaving us in Maryland for even longer than expected, requiring a
longer leave from work from one or both of my parents. Thank you Jesus, we have
health insurance, but Dr. Henderson does not take any insurance so yeah…neurosurgery
out of pocket isn’t cheap! (Side note: I also told my parents for each neurosurgery
I have they have, we have to add another gap year so hi yes this means another
gap year at least is happening for your girl) Not to mention, it’s not just the
cost of surgery-there’s travel and lodging expenses, medications, physical
therapy and a million other little things I’m trying not to think about at the
moment and instead focus on the gift that this surgery is for me-which is challenging
for my brain to do in all honesty! But holy guacamole, I am so grateful for
parents who are willing to sacrifice their time and money to do what is best
for me-THEY ARE THE BEST! The often-forgotten ones are my brothers, Christopher
will have just returned to UT for his spring semester of his sophomore year the
same day we fly to Baltimore and the twins will be a few weeks into second
semester senior year, without my parents here for at least ten days. (Ryan joked
that my parents would be calling in the SWAT team to keep an eye of them making
sure they didn’t take too many breaths which gave me a good laugh…but like no
bud that’s what grandparents, family members, friends, neighbors and a
community are for lol)
How are you feeling at this point facing surgery? Hearing
those words from Dr. Henderson’s mouth no doubt brought tears, but tears of
relief and joy. We had continued to stay dedicated to fighting this fight that
Dr. Francamano had suggested we investigated all the way back Spring Break of my
sophomore year of college, traveling across the state and across the country
for appointments and testing, my mom spending countless hours on the phone, my
late nights researching where the best doctors are and what we should pursue
next, my dad working relentlessly so we can afford the appointments,
treatments, surgeries and medications we need, brothers who sacrifice wants
they have so those resources can go towards my medical care and sacrificing my
parents time and attention when they have to focus on pressing medical needs
for me. I knew coming home from our time in Baltimore I was going to be full of
emotion just by the nature of all that hinged on this trip and what It
represented, but the feeling I felt was not one I was planning on
feeling-peace. My Dad & I both remarked that we felt peace beyond understanding,
which is a peace only He can provide. Dr. Henderson seemed confident, positive
and at peace, his staff answered all of our questions and are working with us
in the months to come. I know my family and I are all in for a roller coaster
of emotions in the weeks and months to come, but for now I am thankful for the undeniable
peace He is providing my heart with, a gift I was not expecting but sure am
thankful for.
I am hoping and praying I will have more energy and time to
write and share with all of you as we inch closer to surgery date, as there are
many more moving pieces going on in my health situation besides the tethered spinal
cord, believe it or not. One of the analogies I think that does the best of
describing this is the following: “Going to the doctor when you’re chronically
ill is weird. It’s like imagine everything in your house is on fire, and you’re
standing there, and the fire department comes in and is like, describe the fire
to me and maybe we can find what caused it and put it out. And you can’t just
say everything so you’re like…well the fire in the curtain is the biggest but
the fire in the photo albums might be doing the most damage, also the fire in the
couch is really inconvenient. Occasionally the fire guy is like, well your TV
is on fire so that might be the electronic fire but that would cause other
things like fire in the DVD player. And you’re like, oh yes, that’s been on
fire for years. I forgot to mention it because it’s always been a relatively
small fire. It’s right next to the bookshelf which has much more fire. And then
the fire guy is like oh, I wouldn’t worry about that. Bookshelf fires just
happen sometimes.”
Many of you have asked from the deepest kind and caring of
hearts how you can best help and support us, and I hope to be able to
brainstorm with my family on specific ways and share with ya’ll in the near future. We are so incredibly grateful and thankful for the way our community loves us,
supports us, cares for us and continues to pray for us the challenges that each
new day brings.
"I cannot tell you where tomorrow will lead, or what will be difficult or what will come with ease, but I can tell you, you are loved, and you will have what you need, and you are still being guided right where you need to be. I can tell you that even when you feel that you have lost an irredeemable amount of time, all that time, you were blooming, and not a stage of growth was missed, and you have been growing ever since. And I just hope this reminds you, your story is far from finished yet and you are allowed to find peace here, even before you know what happens next." -Morgan Harper Nichols
