Advice about Tethered Cord
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Advice about Tethered Cord
Nov 2010
Does anyone have experience with Tethered Cord Syndrome in
infants? I am looking to find other parents who have gone
through this with thir kids. Did your child have surgery?
How are they doing now?
Thanks
mom of infant with TCS
Our 18 month old daughter had surgery at Children's Hospital
one week ago today, Wednesday. Pre-surgery morning she was
crying of course. Before they wheeled her away, they gave
her a med which the nurse described as like weed, and then
she was all smiles. Surgery took approx 1.75 hours with Dr.
Sun. Post-surgery, she was dismayed at why she had stuff
hooked up to her arms. She had to stay horizontal for
approx 24 hours. On Thurs, she was upright and in good
spirits, talking, babbling, eating fine. Friday we came
home and it was business as usual. She was crawling and
walking. No pain through out the process. Literally,
things were back to normal. Her tethered cord was not
tight, so we caught it in time. I think the whole process
was more stressful for us (the parents) than for her. So
far so good. The only problem we are anticipating is with
our insurance company because we learned some info AFTER the
surgery.
I can probably tell you a lot more but am trying to keep
this short. If you have further questions, can you contact
the moderator to get in touch with me?
Anonymous
My daughter has tethered cord syndrome as well as
syringomyelia, which were both diagnosed with an MRI around
6 months. She had a laminoplasty to release the tethered
cord when she was 10 months. We were really scared about
all of this, but Dr. Peter Sun at Children's Hospital
Oakland is fantastic and the surgery went as smoothly as it
possibly could. The entire CHO staff worked very hard to
make the experience as painless as possible. Although I
wouldn't wish the experience on anyone (surgery is just
generally stressful, especially when it's your baby), my
daughter is doing really well now! There is barely even a
scar and she doesn't seem to be in any pain. The surgery
itself involved spending 2 nights in the hospital before she
could come home, but once home she was totally fine and
didn't even need painkillers. Babies are so resilient! I
understand there are varying degrees to how serious a tether
is though, and my daughter was lucky enough to have a simple
tether so the surgery was not as difficult. I would talk
with a neurosurgeon and have him go over any MRI results you
have to determine how complex the tether is and then go from
there. There is also a small risk of ''retethering'' in
certain types of tethers, but with a simple tether it is
very unlikely to ever occur. Surgery was mandatory in our
case because of my daughter's syringomyelia. Good luck
with everything!
ashley gurling
My best friends daughter had the surgery. She was 18 months
at the time and not walking. Had the surgery and started
walking shortly after. Never had any problems and is now a
perfectly healthy, normal 5 year old.
anon
My daughter, now 20 and doing great, was diagnosed with
Tethered Spinal Cord at age 7 and had her first surgery
then. She had a second surgery at 14. The first was to
release the tether at the bottom of her spinal cord, the
second was to remove a piece of bone that was growing
across the cord, causing it to split, and to drain a cyst
inside her cord. Both surgeries were done at Children's
Hospital of Oakland, her surgeon for the second was Peter
Sun. She received excellent care, and had follow-up MRI's
for several years, but is now considered done. My
understanding of this condition is that it must be
corrected surgically, and sooner is better, to avoid
possible dire neurological consequences. If you would
like to know any more about our experience, please feel
free to email me.
mg
May 2007
My 8 month old daughter was just diangnosed with tethered spinal cord
syndrome which our pediatrician noticed as a crooked butt crack. We are
seeking a second opinion. The doctor recommends the surgery, based on an
MRI that shows a ''defect'', but it is still our decision. Has anyone have
experience with this syndrome and had surgery at Kaiser. We have seen one
of the pediatric nuerosurgeon. Any recommendations on pediatric
nuerosurgeons? thanks
anxious mom
Hi worried mom, I feel you on how scary it can be to put your daugther/son through
neurosurgery to release a tethered spinal cord. We went through this experience
when our son was 1 years old. It was done at Kaiser Oakland; Dr. Zovickian and Dr.
Peng operated on my son. The good news is that surgery went well, he was up and
moving around 5 days later, and six months later we had an MRI that confirmed his
cord is free and there shoud be no further complications related to the issue. He
is now a two-year old active toddler, and we have put this experience behind us.
Believe or not, it is a ''routine'' procedure and according to the doctors, there
are minimal complications associated with the surgery (mostly related to
undergoing back surgery). Kaiser made us feel confident in their team and they
treated us really well. There were some downsides: our surgery date was changed
twice to make room for urgent surgeries, the doctors were scant with information
and the appointments felt rushed, the wound on our son's back did not heal
properly (I think the stiches were too tight, their explanation was that his body
reacted to the stiches causing the wound dehiscence), and there was scarring. All
in all, we are relieved that it is all over, that we corrected the issue, and it
is no longer a looming unresolved thing. Hope this is helpful. Blessings to you
and your family.
nico
We recently went through the same thing at Kaiser Oakland.
At about 4 months our son's pediatrician saw a strange ''cleft'' at
the top of his bottom crack. We did ultra sound and MRI. Nothing conclusive but
definitely abnormal. They said his chance
of developing problems was about 50%, but if problems did
develop, they were difficult if not impossible to treat. We felt
the surgery was a must. Neurosurgery (Dr. Pang and PA Smith)
were good. Pang is supposed to be the best (literally), but he
is an odd guy. Had 2 surgery dates cancelled because of
emergencies, and this surgery is not considered emergent. You'll
have pre-op and pre surgery appts and blood work. My best advice
is to try to be patient. When our appointments were canceled, we
were very disappointed because we were ''prepared'' but we were
ultimately grateful that our situation was not an emergency. Our
son spent 2 days in the PICU - not fun. Nurses and staff are
great, but being in the hospital is never fun. It took about 2
more weeks at home for him to be back to normal, but he's doing
great now. I would be very willing to talk to you or email you
more info about any of it. Good luck!
lisa
First - I'm sorry to hear that you're in this situation, & good
for you for getting a second opinion. I know how scary the
tethered cord diagnosis is (the surgery sounds scary, but the
potential for permanent damage without the surgery sounds scary
too!). We just spent the last two years with a ''maybe'' diagnosis
for our now 2-year old daughter, who also has a crooked
butt-crack. She was closely followed by her Kaiser pedi-neuro
team (Dr. Zovickian & Dawn) from age 6-mos to 24-mos. I felt that
Dr. Z was great - he showed us her MRIs & explained what he was
looking for. No symptoms presented, and the 24-mos MRI satisfied
the team that no tethering was present. Perhaps our situation can
reassure you that Kaiser doesn't always rush into recommending
surgery? That said, I do hope you get some feedback from a parent
who has actually gone through the surgery at Kaiser, since that's
likely what you are facing.
Also, a parent posted a question about their 2 year old child's
tethered cord in the April 6th Advice Wanted newsletter and there
were several nice responses in the April 13th Advice Given
newsletter, including at least one from a Kaiser patient who's
child had the surgery.
-good luck!
sofia
There is a wonderful group of poems by Doreen Gildroy in the
current May/June issue of the American Poetry Reveiw, about her
experiences and her baby's experiences in the hospital for
surgery to untether her daughter's spinal cord. Carol
April 2007
My 2 year old son has just been diagnosed with a tethered spinal
cord - if anybody out there has dealt with this, I'd be very
grateful to hear about your experience. He seems to be in a bit
of a grey area in that his MRI wasn't totally conclusive, and
the diagnosis is based in part on the fact that he runs funny -
but our neurosurgeon is unequivocal about the need for surgery.
I'm interested to know if the remedy for your child involved
surgery, what symptoms your child displayed, was there an
improvement after the surgery, and was the diagnosis clear from
the MRI? How was the recovery, both in and out of the hospital,
and how long did it take? Who performed the surgery, and were
there any complications? Thanks for any information you can
provide.
worried mom
Hi -- I am a pediatric physical therapist who has worked extensively with spina
bifida and tethered cord patients. I am thinking that your neurosurgeon has some
very definitive data besides the fact that he runs funny from which to make his
recommendation for surgery. Maybe you know of these other facts and just left
them out for simplicity's sake. For example, does he have any spasticity, especially
in his legs? Increased tone? Curvature of his spine, especially one that seems to be
worsening? SOmetimes a tethered cord does not show on a scan, especially if it is in
the area known as the cauda equina, at the end of the spinal cord. My guess is that
he has some information, and it is certainly worth discussing with him if he has not
already. Usually, the surgery is pretty quick and recovery good, although they will
probably continue to follow up with scans in order to make sure that it does not re-
tether, which it can do. My advice to you would be to sit with him and clarify exactly
what it is that he is seeing that is making him feel so strongly about surgery. If it is
a tethered cord, that is your only option, to be sure, but it sounds like you are
unclear as to what it is that he is seeing and that is causing him to be adamant
about surgery. It will probably ease some of your anxiety! GOod luck!
F.
We went through this last year - my then-2-year old had problems with her right
leg, was diagnosed with tethered cord on MRI (there was controversy about the
reading too) and had successful surgery last summer. We consulted 4 major
pediatric neurosurgery groups in the Bay Area (Children's, UCSF, Stanford) who all
agreed about the need for surgery though had slightly different approaches, as well
as osteopaths and body workers, and ended up staying at Kaiser Oakland where, all
things considered, we had a good experience. Her leg has shown great
improvement after surgery with physical therapy as well as some other body work,
and she's completely toilet trained. It was an ordeal for everyone but we're very
relieved to be on the other side! There was definitely significant pain and trauma for
her, but it's amazing how resilient kids can be. On a conscious level anyway, she
now remembers none of it. We did take her to a child psychologist for play-therapy
which I think was helpful. We also got some good advice from another parent who
had been through it about how to prepare her for the surgery. She was an anxious
kid to begin with and this is still true, but overall she is thriving. For us, the
decision-making was the hardest (for better or worse, we are both physicians),
followed closely by the immediate post-op period. Good luck!!!!
Amy
My now 16-year-old daughter was diagnosed with tethered cord
when she was 7. She had no symptoms (but she did have very thin
legs, possibly due to the tether) but the surgery was
recommended to prevent any neurological damage that might occur
as she grew bigger. Her surgery was performed at Children's
Hospital of Oakland, by a Dr. who is now retired. She had a
second surgery when she was 14 to correct another tethered
site. This was also at CHO and the surgeon was Peter Sun. She
still had no neurological symptoms, however she had chronic back
pain, which unfortunately was not helped by the surgery. The
care at CHO was excellent, and she had no significant problems
with the recovery. There is quite a bit of information on the
web about tethered cord, just do a google search. You can email
me if you would like more information about our experience. I
know it's a scary diagnosis, but it is definitely a correctable
problem.
mg
Dear worried mom. I am feeling for you. I have a daughter who had tethered cord
surgery at the age of 9 months. The surgeon said it was a routine surgery, and we
thought that was cynical. After all we were not talking about removing tonsils or an
appendix, and routine to him was very exceptional for us.
I was scared to death. I had nightmares of her not waking up or at least not being
able to walk afterwards. But, of course it all turned out well.
She was diagnosed by MRI which was taken as a precaution because she had other
spinal conditions that frequently coincide with tethered cord. She had no visible
symptoms.
The surgeon was Dr. Sun at Children's Hospital Oakland. He was great. He answered
all our questions prior to surgery, was very matter of factly and calm and
professional. He did a great job. The surgery was uneventful - less than 2 hours,
and so was her recovery. She was discharged after just 2 days. She was on morphine
for about 24 hours, but only on ibuprofene after discharge. This is not unusual. I
have since met a number of other kids who had this surgery, all performed by Dr.
Sun. If you research him you will find that he has been listed as the best in his field
in different media for years. His nurse practioner, Sue Ditmeyr, is also a jewel. I am
not sure there is another neurosurgeon in the Bay Area performing this type of
surgery. So, if Dr. Sun is your son's doctor, you are in the best hands.
Please trust his judgement. Untreated tethered cord can lead to quite severe nerve
damage causing malfunction of lower body organs and extremities.
Our daughter had issues with her bladder and kidney function already which were
not diagnosed until after they found the tethered cord. These problems were
succesfully treated as well.
Good luck. If you need any more information, please feel free to contact me directly.
Mascha
I don't have any advice, just support and an understanding of
what you're going through. My now 2 year old daughter has been
monitored for tethered cord syndrome since she was 6 months old,
when our pediatrician noticed that her butt-crack (yes, her
butt-crack) was crooked. As Kaiser patients we were quickly
referred for an MRI and to the pediatric neurosurgery department.
Her MRI at that point was inconclusive and our neurologist chose
to monitor her for other signs of the tethered cord every 6
months until she turned 2 (that's now). We were told to look for
things like curled toes & loss of bladder control (in a 6 month
old?! sometimes those docs don't think things through).
She's going in for her 2 year MRI tomorrow & the follow up with
the neurologist will be next week, so at this point I can't tell
you the outcome. We have our fingers crossed for an uneventful
anesthesia & positive outcome. As far as I can tell from reading
online, doctors are very cautious with this condition and almost
universally recommend surgery.
All that said, I do remember that before our MRI we were assured
that the MRI is usually conclusive and I was frustrated and
surprised that ours wasn't. It's interesting for me to hear that
your child's MRI was also inconclusive. I wish I had the results
from our impending MRI to share with you at this time. Have you
considered getting a second opinion?
I hope that you find the support and answers you need on this
community. My thoughts are with you and your family. It certainly
is a scary diagnosis, but I am also relieved to have access to
doctors who can diagnose this and to skilled surgeons who can fix
it. All the best,
potentially tethered mama
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