Thursday (23 September) while Virginia was at Mother’s Day
Out, my first stop was to Children's Medical Center to go and get her medical
records so I could look at them and make sure I had ALL my questions that I
want answered, all lined up for our neurosurgeon appointment yesterday (27
Sept). I need to understand what all we know and don't know, to feel confident
about being her advocate. We had waited nearly two months for this appointment-
7 weeks- and I didn't want to waste my time with the neurosurgeon, since who
knows when I would get any more.
I have had dealings with Children’s ever since Isaac's big crash, so over two
years now, and EVERYONE is so kind and nice... even the janitors, EVERYONE. Um,
well okay... make that everyone EXCEPT the medical records people!!! I was
astonished. I felt like I was at the city government, for the attitude the
woman had. The long and the short of it was, they said I couldn't have the
records. Not even if I spoke to a supervisor, not even if I paid a "rush
fee", not even nothing. I explained that I'd waited seven weeks for this
appointment and who knows when I could have another chance to ask questions, I
offered to just sit in the med records room and review them and take notes
without actually getting copies (which was what I wanted to do, and was going
to be paying out the wazoo for...), I offered to wait while she got a
supervisor. I was very polite. I got NOWHERE. She basically said, you should
have come in for these records three weeks ago if you wanted them by Monday,
sucks to be you. (And only marginally nicer than that, too.)
I was walking out of there hanging my head, feeling like I'd let
So I went to the radiology department where we actually got the MRI done, and
asked if there was any way I could see the MRI films, just look at them, so I
could visualize
And then she walked me back to
the radiology records room where M was working, and told me I was in good hands
with M... and M and I got to talking, and her daughter (who is a year younger
than I am) just had a benign tumor removed from her spine at the top, near the
base of her skull which was causing symptoms a lot like Chiari causes (in later
stages than Virginia's is right now). Anyway, when I went to pay her, she said
not to worry about it and she was sorry for how the medical records people had
acted. So she GAVE me the films. I could have kissed her.
So I came home and called the radiologist and the radiology tech I know to make
appointments with them in the next couple days to go over these and have them
show me what everything is, so I can have a better grasp on what I'm asking,
and make sure I know the right vocabulary, and I was feeling so grateful at how
it had all worked out.
I went to the dentist and didn't have any cavities. (Boy, it was a fun
"mother's day out", huh?) I went home and called the pediatric
endocrinologist's office and told my nurse Dawn about the trouble I had had
with the medical records department, and asked if she could help me with the
actual notes about the MRI to help us in looking at them. She said she wasn't
authorized to release medical records... I said I knew, but could she maybe
just jot down the high points on a piece of paper unofficially and fax them to
me? She laughed and said to give her the fax number, and not to say where I got
them... and faxed me the notes. (She also mentioned that she is an employee of
Children’s and it had still taken her 9 days, 4 phone calls, and one in person
visit, to get her own child's records from the Med Records office. Apparently
they are just not accommodating to ANYONE.)
So I was putting away the laundry for my last 30 minutes of MDO, when the phone
rings- it is the neurosurgeon's office. They are calling just to verify our
appointment on Monday morning (yes I know, been counting the days for the last
seven weeks) and to make sure that we are aware that Dr. Sacco was out of
network for us. (Why no, I was not aware!)
The next 24 hours were a blur
of me calling the 39 neurosurgeons who ARE in network (none of which take
pediatric patients) and spending long periods of time on the phone with my
insurance company. After several hours on the phone and speaking with seven
people at CIGNA PPO, I threw up my hands- because they cover pediatric
neurosurgeons SOMEWHERE, they won't cover this one who is out of network, at in
network rates, even though there were no pediatric neurosurgeons in DALLAS in
network.
Kurt and I talked about if we
should give up our appointment that was not covered, but decided that we had
waited a long time for this appointment and that we would have to just trust
God to drop the money for it out of the sky, or put it on our credit cards- but
that it would be fine, because we had surely put LESS important things on a
credit card before, it would be worth it. We didn't want to start over waiting
another two months to get in with another neurosurgeon even if we did manage to
find one, for instance in Fort Worth. (I quit calling after I got as far away
as
This was a very frustrating
and scary process, calling neurosurgeon number after number and speaking to
insurance rep after insurance rep, and in between, calling Kurt to discuss what
to do next at every new roadblock. Finally I vented about it online to my
Tuesday night Bible study group and the March Mommies, then abandoned the phone
and went to meet my friend Laura and her son Uriah to hear Steven Curtis
Chapman sing and bring Uriah back home for a sleepover. I was so glad to get
away from the house and the telephone!
When I returned home a few
hours later, I was beyond astonished to open my email box and find that the
March Mommies had sent me the money to cover the neurosurgeon appointment,
along with many messages of love and support, and helpful suggestions for
getting the most value from the appointment. My first reaction was to be very
proud and say "Oh, no, no, you don't need to do that" but then I
realized that it was a gift of love to be accepted with an overflowing heart,
and one fewer thing to worry about with the coming appointment.
The next step was to meet with
my friend Amy who is a radiology tech, to look at the films and the MRI report
with her. She took all the time in the world with me, showing me different
views, identifying various parts of
Saturday, Sunday and Monday,
Virginia had such good days- very little falling or head-resting, not a whole
lot of sleep disturbance… when she has good days like that, I begin to think
that perhaps I am losing my mind and it is all not real. Many of you know me
well enough to know that when I am in labor, I spend most of the time on one
level, preparing to give birth as though I am in labor- but consciously
thinking “maybe it isn’t really labor yet”. I remember in my last labor,
telling my midwife, “During contractions I am sure I am in labor, but between
them, I feel so fine, that I think I must be overreacting during them and am no
longer sure it is really labor.” This is the kind of self-protective denial I
feel when
Sunday morning at church, my
radiologist friend Jamie who actually works at Children’s, helped clarify for
me a couple of things that Amy and I hadn’t been sure about, and gave me the
rest of the information I needed to be able to go home and compile my master
list of “Meet With Doctor” notes. During the final hymn in church, several
people came and prayed with me at the altar, for God to give wisdom and
discernment to the doctor and Kurt and me, that we might come away with either
a sense of peace and confidence about the advice given or a check in our spirit
if it were not the advice we were to pursue, that the doctor would be someone
whose judgment we would feel confident about and be able to work with, that our
path would be clear before us, etc. Singing “Great is Thy Faithfulness” and
being surrounded by praying friends and in the palpable presence of the Holy Spirit,
was a cathartic experience. The chorus resonated with me- “All I have needed,
Thy hands have provided. Great is Thy Faithfulness, Lord, unto me.” I was more
at peace although still feeling a little tense.
I spent Sunday afternoon on my
preparation for the appointment, and ended up with a brief (for ME- ha ha ha)
3.5 page document consisting of:
Late Sunday afternoon, I went
to Bible Study at FUMC. It was also very helpful to me. We opened with the
week’s assigned hymn- lo and behold, it was “Great is Thy Faithfulness”. Midway
through the session, the week’s Scripture readings brought a blinding (non)
news flash to me- that God created
Psalm 139: 13 For
you created my inmost being; you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made; your
works are wonderful,
I know that full well.
15 My frame was not hidden from you when I was made in the secret
place. When I was woven together in the depths of the earth,
16 your eyes saw my unformed body. All the days ordained for me were
written in your book before one of them came to be.
How irrelevant to say that the
course of our lives will be different because of this? Of course it will- but
it is already different- and BETTER- because of the mere existence of
Had
Perhaps it will please God to
heal her completely and she will suffer no thorn in her side all her life, and
we will all give Him the glory- or perhaps she will be shaped by this into the
form God has for her, to be blessed and a blessing. I still believe that God
created
All this peace and
understanding came in a rush, and I was really fine from that point on Sunday
afternoon, on. I did not have trouble sleeping or bad dreams Sunday night, and
got everyone up and off for school, all the laundry washed and dried, the
dishes unloaded/reloaded, kitchen cleaned, meat thawed for dinner, and Virginia
bathed and shampooed with our “doctor’s visit bag of tricks” packed, in time to
leave by 9:15 a.m. on Monday morning without incident. My mother’s longtime
friend Betty Balliet kindly came over so she could go with Virginia and me to
the appointment, and entertain
We arrived ten minutes before
our appointment time and spent 30 minutes filling out paperwork. A mother and
daughter came in and a young(ish) man came out to usher them in- it was Dr.
Sacco. We then waited in the waiting room (alone) for another 30 minutes or so.
The last five minutes, another family came in and they had a 2 year old and a
small baby- Virginia was very taken with the baby, offering as many kisses,
gentle pats, and hugs as the parents would allow (and they were very generous).
Then the mother and daughter left with a nurse, and Dr. Sacco came out and
invited us into his office.
We introduced ourselves, and
After being examined,
Dr. Sacco and I looked at
He recommends surgery in her
case. My heart skips a beat, but I am calm and think I must have known on some
level that I would hear this, even though I hadn’t thought that was what I
expected. We go over the informed consent questions and answers. His answers
are weighty- I expected them- I didn’t expect them- yes, I did. I am startled
to realize that everything he has said fits into one of the scenarios in my
list. I guess I am prepared for this intellectually, if not emotionally-
emotionally, I would like to snatch up my baby and run far, far away and hide
from the very idea of someone cutting open the back of her head.
Answers to questions you, my
loved ones, have asked:
Yes, there is some sort of
relationship between growth hormone deficiency and Chiari I Malformation, but
the exact nature of the relationship is not really known.
Could we start growth hormone
before having surgery? We could, but he would not recommend it. If she were
asymptomatic with the Chiari, he would recommend doing the growth hormone while
monitoring the Chiari for changes, but since she is already symptomatic with
the Chiari WITHOUT the growth hormone, the rGH would not improve things. It
might make them worse, or they might stay the same, but it would not improve
things, so if it were his kid, he would wait.
Could we wait to do surgery?
Yes, we could wait in that it is not an emergency. However, once one is
symptomatic, the symptoms do not improve, they only worsen. Sometimes they
progress slowly, sometimes people’s situation deteriorates quickly, but either
way, once symptoms begin, they do not get better, they only stay the same or
get worse. Thus, waiting does not benefit you in any way, and if the symptoms
worsen, then the surgery can also have less benefit.
What do we mean, less benefit?
Well, if there is enough blockage of the CSF that it begins to form a syrinx
(which I got to see a “sample” MRI of a syrinx, or cyst in the spinal cord
basically), then that is spinal cord damage. And once damage is done to the
spinal cord, it can’t be undone- at that point the idea is to stop the
progression, not to fix what has already been damaged. The damage is permanent.
So doing the surgery before irreversible spinal cord damage or neurological
damage is done, would hopefully prevent those from ever occurring.
Best case scenario for the
surgery: Complete healing of symptoms- no more headaches, balance problems,
etc. Possibility to lead a normal life other than avoiding that which doesn’t
feel good.
Possible risks: spinal fluid
leak, having to re-do surgery later because symptoms recur (and with as much
growing as she has left to do, this is of course a real risk, but many people
do not need a second surgery), then the usual risks that attend any surgery-
complications with anesthesia, risk of infection, etc.
Which procedures would he
recommend in her case? Remove first vertebrae (C1) and part of base of skull,
open the dura (membrane covering the brain) and install an alloplast “pleat”-
(picture a maternity panel in a pair of pants, to put some “give” to the area
so that the CSF can have room to flow past the herniation of the part of her
brain that is forming a “cork”) and cauterize the cerebellar tonsils (the part
that is where it should not be) themselves, which can cause them to go back
where they belong. (Sometimes they stay put.) The entire purpose of the surgery
is to restore the CSF to being able to flow freely.
Surgery and Recovery: As far
as brain surgery goes, it is usually fairly straight-forward. The surgery is
about three hours long. Usually the child has one night in the ICU and then two
or three more nights in the hospital, before going home. First two weeks of
surgery are “light activity” weeks- I wondered how one prevented an 18 month
old from “normal activity” but he assured me that she would self-regulate due
to the pain involved in overdoing. (Yikes.) And for a child as young as
Experience: He has done
between 30-50 surgeries.
If it were his child, what
would he do? He would do the surgery, and he would not start the growth hormone
until after the surgery. Even if she were not growth hormone deficient and the
rGH injections were not an issue, he would still do surgery to prevent the
permanent neurological and spinal cord damage that the CSF flow blockage lead
to, in her case. He and Dr. Frim (Chicago doc) both trained under the same
pediatric neurosurgeon in Boston, and if it were his child and he couldn’t go
to one of his partners here for the surgery, he would go to Boston to his
mentor, who he described as the best pedi nsg currently living “which is why I
chose him to train under, and I am sure why Frim chose him to train under as
well.”
Then of course we have the
complication of the fact that Dr. Sacco is not covered in network. Doing the
surgery with an out of network provider would likely mean the difference
between out of pocket ~$5000 or so with in-network, or $8000-$9000 with out of
network. Of course, he is here in
So, the current plan is that:
Dr. Sacco agreed to send me a
copy of the day’s appointment notes once transcribed. (I handed him a
self-addressed, stamped envelope for this purpose, which he laughed and
remarked “nice touch, but unnecessary” and gave it back to me.)
Dr. Sacco ordered a spinal
MRI, to see if there has already been spinal cord damage. We hope and expect that
there has not been yet, but I have been hoping at every turn that a test will
show “nothing” and so far, every test has shown “something”, so I will feel
better when we have done the MRI and (God willing) this time have found
nothing. I welcome your prayers on this matter.
Once the spinal MRI results
are in, Dr. Sacco will call me. If he found nothing, we will send off her
entire record to another pediatric neurosurgeon for a second opinion. If he
found something, we will make an appointment so I can see what is there and we
can discuss it.
We will get our second opinion
(either from the doctor in Chicago, or the doctor in Boston- both of which are
covered on our insurance, unlike Dr. Sacco) and then proceed from there, in
terms of figuring out where to have surgery. This will be a matter to commit to
prayer, because right now, the options of going out of state for brain surgery
and future follow-up visits but staying in-network, or staying locally where
our support system is but paying out of network for brain surgery, neither are
very appealing. We will need to pray for wisdom and discernment to make the
best decision, and to pray that God will guide us faithfully down the best path
for
Kurt and I appreciate your encouragement, prayers and love
for
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