Hi!
I hope this email finds you well & enjoying this start
to 2015.
Yesterday we met with neurosurgeon, Dr. Tye, at CHKD. He was great. For those of you who are
interested in the details, here is what we discussed:
1)
We learned that Ezra’s syrinx (the reason for seeing
Dr. Tye) is relatively small and not warranting surgery…yet. Because of its
location, the spinal cord surrounding the syrinx is considerably thick,
increasing the risks of surgery to insert a shunt, so we appreciate Dr. Tye’s
vigilance. We’ll do an MRI in 6-9 months to see if it has grown larger and will
be watching for neurological changes.
2)
During physical examination, Ezra’s reflexes in his
left knee were asymmetric as compared to his right knee (his right leg kicked
but his left didn’t react at all). We’ve seen other signs of asymmetry between
his left & right sides over time, both in daily life as well as during
physical examination by the different doctors he’s seen, but this one was new.
3)
We learned that Ezra’s MRI also detected a lipoma in
his spinal cord. According to one website:
A spinal cord lipoma is a fatty mass or tumor
within the spinal cord that may or may not be associated with Spina Bifida. …It
often occurs in a normally positioned cord without any skin or bony
abnormalities.
Ezra’s spinal cord was in the
correct, normal position (“it came down as far as it should” for his age).
There was no indication whatsoever on the MRI of a tethered cord, but we were
told that only opening him up could completely rule that out. The lipoma is
very narrow and runs vertically inside his spinal cord.
Dr. Tye explained that none of these 3 factors, alone, would
warrant surgical intervention. However, the fact that he has all 3 going on
means surgery is something to consider – not for the syrinx (yet) but in order
to snip the lipoma. (It would be a 3-4 day hospitalization/sedation.)
Prior to our visit, Dr. Tye reviewed Ezra’s case with one of
the other neurosurgeons who agreed that surgery would be warranted if Ezra’s
lower extremities are undeniably affected. Unfortunately, there is no way to
know if the syrinx and/or the lipoma are what is causing the symptoms present
in his legs/achilles/feet. In fact, Dr. Tye and the neurologist, Dr. Teasley,
both acknowledge that there is something else contributing (possibly genetic)
that has not yet been identified. Therefore, there is also no guarantee that
surgery on the lipoma (or the syrinx, for that matter) will eliminate the
symptoms. The other thing to consider is that damage to the bladder and/or
spinal cord is irreversible, so this relatively low-risk surgery may be worth
it for preventative measures.
This brings me to our next step. Ezra will see a Urologist
for testing to determine if his bladder is already being affected. Dr. Tye’s
next step is to consult with Dr. Teasley again, now that he has examined Ezra.
Dr. Tye expects that Dr. Teasley’s perspective and the urologist’s findings
will help us decide if we should proceed with surgery.
We are still waiting for the most recent genetic blood test
(Microcephaly panel) results to come back and will be seeing a new geneticist
on January 27th.
In other news…
Ezra says Hi, Hello and How Are You to everyone he sees
(repeatedly), enjoys having conversations in a whisper, enjoys communicating
with us using the sign language he is learning, loves songs & singing
along, and reads words as they appear on his dvds before they are said aloud.
He delights us and surprises us all the time with his humor, understanding and
knowledge.
Written about the Ezra in the Bible, Ezra 7:6 says, “…for the hand of the LORD his God was on him.” May God’s all-powerful, healing hand be on our Ezra.
Be blessed this new year!
Love,
Wendy, on behalf of Team Sellers J
