Re: TSC surgery on a 6 month old baby, looking for recommendations...

[Guest guest]

My son had a lipoma resection/detethering surgery at Boston Children's when he

was 4 months old. The good part about having it young like that is it is easier

to keep the child still - Josh spent 9 days on his tummy because he had to keep

his spinal wound up. It would have been tough to keep him in that position if he

were much older. Josh had a more serious type of tethering - the fatty filum you

describe is the best of all possible tethers, if there can be a best. I think it

might only require 2 days or so in the hospital. Josh's spinal cord was tethered

with a transitional lipoma down at the s1-2 level and now he has trouble with

bladder/bowel continence that he actually did not have trouble with prior to the

surgery.

It's impossible to tell prior to surgery whether there will be improvement or

not. I'd say, if there is nothing wrong with your child other than an MRI saying

something is wrong, get enough opinions until you feel comfortable doing

surgery. I have read that surgeries for fatty filum tend to turn out well,

unlike what my son has. Good luck with your decision and please ask if you have

further questions.

and Josh (now 4)

>

> Hi, My daughter was diagnose with TSC a month a go, she is now 2 months and

we will be going to the neurosurgeon next week to schedule surgery in June ( She

will be 6 months at that time) She has a fatty filum with conus termination

between L3 and L4 In addition there is a subcutanueos with small dermal sinus

tract which extends at the L3 with a small amount of fat extending superiority

to attach to the dorsal aspect of the spinal cord at the L1 level. I am concern

and will like to know what to expect and what to ask. I have read different

information about TSC and is the uncertain that is the scary part. Please

advise me what to expect and what to ask. Please share your experiences with

our family.

>

[Guest guest]

Hello There is lots of wisdom here on this group and I'm sure many will chime

in for you on this. Alot of us here have congenital TC that wasnt picked up on

until we were adults but there are also several parents of children here as well

that can share their experiences. There is another group that is more

child/infant centered (or there was, as far as I know it is still going). I

believe their contact is lmc-tcs   Please join that group as

well so you can get lots of support

Your position is one of the hardest, trying to make the surgery decision for a

child. When it is caught at birth, they usually suggest surgery to prevent

neurological deficits down the road. Some of us " old-timers " made it into our

30's, 40's and even 50's without knowing we had TC. We were able to live

" normal " lives. Many of us had symptoms that we didnt even know we had (if that

makes any sense). Some have irreversible neurogenic bladder, weaknesses, pains

etc that are caused by the microtraumas to the spinal cord from being tethered

so long. Some have problems from having surgery. So there is truly no easy

answer. One thing is for sure, the kiddos tolerate the surgeries much better and

heal much quicker! Some little ones have surgery and do great and thats that.

Others require more surgeries as they grow. Same with adults, some have only

one, some many. The important thing is to learn as much as you can about TC and

find a doc that specializes in it.

Get a second or even third opinion if possible and then make the best decision

you can at the time. Thats all you can do. Please check out that other group and

talk with lots of Moms, they will have so much helpful information and can truly

understand where you are coming from, also they will have recommendations on

Neurosurgeons & facilities 

Many Blessings,

Subject: TSC surgery on a 6 month old baby, looking for recommendations...

To: tetheredspinalcord

Date: Sunday, March 6, 2011, 9:16 PM

 

Hi, My daughter was diagnose with TSC a month a go, she is now 2 months and we

will be going to the neurosurgeon next week to schedule surgery in June ( She

will be 6 months at that time) She has a fatty filum with conus termination

between L3 and L4 In addition there is a subcutanueos with small dermal sinus

tract which extends at the L3 with a small amount of fat extending superiority

to attach to the dorsal aspect of the spinal cord at the L1 level. I am concern

and will like to know what to expect and what to ask. I have read different

information about TSC and is the uncertain that is the scary part. Please advise

me what to expect and what to ask. Please share your experiences with our

family.