Re:how do u know if tc surgery was wrong ?????????

December 30, 2008

if any of u has thoughs or opinions on this i would love to hear from u,either

on or off group!!!!!!! in july i had tc surgury, since then i have been in

more pain then before. originally my neuro. sent me to this n.s. for my chiari

because my symtoms were sooooo bad i jst wanted reliefe.well,they told me i also

had tc (never heard of it before) i had symtoms but i had disc probs. anywy ,

iwas in 2 snwmbl acident & auto acident.so they told me if i had this surgery

chances are i might not need the decp surgy. the chiari may get better. so of

corse i said yes,so despret for reliefe of every day pain. well last mnth at my

follow up (after flying & getting a hotel & my family driving 6hrs) they told me

the cerebelem. tons. is hern. 2 more mm ,i now hve mild scoliocis, & my brain stem

is bent like a backwards " c " . after all that bad news i froze , could not even

talk,my husband was almost their,they didnt wait. they said give the back more

time, i said

it is worst than b 4 ,but i got no commet.after i got hme (days later ) i hd

the mri place send me a copy of the 1 4 days b 4 surg. & it says . " the distal

cold and filum are visualized. no paraspinal abnormaltiy is seen. " WAS I TOO

DESPARET??????

LISA LEWIS

January 19, 2009

Just to understand correctly you had de-tethering surgery in July to

help your degenerative discs and Chiari symptoms? And before going

into this surgery you were experiencing incredibley intolerable pain -

- was it just back pain? or headaches/neck pain as well? Who was your

neurosurgeon and like Kathy, in order to help you with this it would

be helpful to know where you had your surgery -- as many of us on

this list are spread-out across the country and globe even -- if we

know where you had it performed there may be others here who've seen

the neurosurgeon you saw etc.

First and foremost, I am so deeply sorry to hear you are still in

such excruciating pain. It does not surprise me you received no

feedback about your back pain and they said to give it time -- as

recovering from this type of surgery can take several months, even a

year or so. Don't give up hope. It sounds like you are in an area

where there are not many specialists (as you wrote you had to fly &

then stay in a hotel with your family.)

The more things you ad to Tethered Cord the rougher it gets and the

more complicated the treatments/surgeries are -- especially with

Chiari. If you still feel something's wrong. Call your neurosurgeon

back and ask for him to review your films and or get a second

opinion. If you let us know where you live -- we can do our best with

recommendations -- referrals (we are not doctors and so any referrals

we're able to give will be based on experience etc.)

Did you have an MRI of your neck/brain as well or only one of your

spine? I can imagine it was a shock to go into your appointment

thinking you were going to discuss treatment of your Chiari and then

get bombarded with the TSC diagnosis. Most surgeons do not " rush "

patients into this kind of surgery (this quickly) unless they surmise

a problem/urgency. I have a feeling you got a surgeon who's style and

approach is to " go in and fix things " vs " the wait and see " approach -

- I've experienced both. The ones I've seen who say " we have to do

things NOW " I say why? Why rush? What harm will it do to wait a week

or month to allow me time to make an informed decision ...

I send you healing energies and peace of mind & understanding. We are

here for you & your family -- please write back as often as you need

to -- this is what we're here for, I'm glad you found us.

--

TSC Group Moderator

emaher1916@...

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