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

[Guest guest]

Does your daughter have any symptoms? Eg, how was her tc diagnosed at such an

early age? I am an adult who did not get diagnosed with a fatty filum until my

late 30's but I began having problems around the age of 18 (no MRI's back then

made TC not easily diagnosed). This syndrome is so difficult as there are such

varying degrees of issues -- eg, I was fine and extremely athletic growing up,

until after a fall at the age of 18, and have had back and leg problems ever

since throughout my life, with nerve damage in my left leg/ankle. I wish I'd

had surgery earlier in life, but not sure I would have wanted to have it as a

baby as I had no symptoms and a perfectly normal childhood. Other children can

have issues at a young age. I would just make sure you get more than one

opinion to make sure that early intervention is the best decision for your

daughter. What do other parents think?

I would ask about the risks of surgery versus the risks of not having surgery at

this point (if she is symptom free that is) -- while of course carefully

monitoring her symptoms. It sounds like like kids bounce back from this surgery

so easily compared to adults, I think the biggest risk is if you do early

intervention are you setting her up for possible more surgeries in the future (I

do not know the answer, just throwing it out there)? I'm sure more parents will

chime in with their experiences and insight. And yes, generally a thickened

filum is the simplest form of TC to do surgery on.

I often wonder if many of my problems would have been avoided if I'd been

diagnosed properly as a teenager and had surgery at that point.

Dee

>

> 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]

To piggy back on what Dee has said. The first question is whether your

daughter has any symptoms. Of the different types of TC, surgery to

untether the filum-type has the lowest risk of complications.

If she is symptomatic, it is much clearer that surgery is necessary. Just

remember that the point of surgery is not to regain lost function, but to

stop the progression of neurological decline. Any function regained is just

a bonus.

If she is not symptomatic, then there are two schools of thought. First is

to go ahead and do surgery to prevent the child from becoming symptomatic.

Second, is to take a wait and see approach with careful monitoring of MRI,

urodynamics and EMG to catch any neuro changes early and be able to

intervene early.

Like Dee, I was diagnosed when I was an adult - 21 (well, Dx with SBO at 21

and the TC and diastematomyelia at 24), and had my first surgery at 25. I

led a very active and atheletic childhood. Based on the outcome of my

surgeries, I'm thankful that it was not diagnosed earlier and surgery done

earlier. I would not have been able to lead a normal childhood.

My personal opinion (for what its worth). If she is not symptomatic, I

would opt for the careful waiting approach. Why? Children tend to have

their tethers become symptomatic after a growth spurt. But, not all children

will develop a symptomatic tether after a growth spurt. I did not become

symptomatic until after a bad car accident when I was 21. And even if she

does have preventative surgery, she can still become symptomatic after a

growth spurt. Having surgery now will not necessarily prevent the need for

future surgeries. Untethering surgery also brings its own risks -

infection, loss of neurological function (up to and including paralysis),

and even death (as any surgery has this risk with anesthesia), retether,

etc. Some people, such as myself, tend to be very efficient at making scar

tissue. That just caused a quick retether and the need for a subsequent

untethering (I was retethered 4 months after my first surgery). I also

developed arachnoiditis by my second surgery. My second untethering caused

me to develop hydrosyringomyelia. The third surgery, to correct the

hydrosyringomyelia, left me a T12 paraplegic. Not that my life is crap (its

not - I live on my own, very independent), but surgery caused all this.

Granted, leaving the tether alone could have ended up with paralysis, but it

would have taken much longer. Anyway, the way I see it is that people with

TC that are asymptomatic are going to have to deal with the risk of

developing a symptomatic tether whether they have preventative surgery or

not. Why go in and mess around trying to fix something that may never even

happen and perhaps cause additional problems? With careful monitoring

(regular MRI, urodynamic studies, EMG and physical exams), I think is

possible to catch a symptomatic tether quickly and intervene at that time.

BUT - this is all just my personal opinion. I recognize that the decision

to have/not have surgery is a personal one and opinions are like a$$holes -

everyone has one and they are all different.

Before making a final decision, I would definitely get at least 2 opinions.

If she is not symptomatic, then get their opinions about surgery vs careful

monitoring. Ask about the risk of retether. And if the surgeon says that

its not even a possibility, then I would run the other direction. It is a

definite possibility, and happens more often than they want to admit. When I

talked to my first surgeon, he made it basically sound like I needed surgery

ASAP and if I didn't do it (pain my my only symptom) that I would be

paralyzed in short order. And that once I had the surgery, I would

essentially be " cured " and would go on with life and never look back. He

NEVER mentioned the possibility of retether. In fact, even when I had

retethered, he said there was nothing wrong and that it was " medically

impossible " for someone to retether that quickly. Boy, was he wrong there!

Also make sure that the surgeon has a lot of experience in dealing with

NTDs.

It is a tough decision.

Best wishes,

Jenn

>

> Does your daughter have any symptoms? Eg, how was her tc diagnosed at such

> an early age? I am an adult who did not get diagnosed with a fatty filum

> until my late 30's but I began having problems around the age of 18 (no

> MRI's back then made TC not easily diagnosed). This syndrome is so

> difficult as there are such varying degrees of issues -- eg, I was fine and

> extremely athletic growing up, until after a fall at the age of 18, and have

> had back and leg problems ever since throughout my life, with nerve damage

> in my left leg/ankle. I wish I'd had surgery earlier in life, but not sure

> I would have wanted to have it as a baby as I had no symptoms and a

> perfectly normal childhood. Other children can have issues at a young age.

> I would just make sure you get more than one opinion to make sure that

> early intervention is the best decision for your daughter. What do other

> parents think?

>

> I would ask about the risks of surgery versus the risks of not having

> surgery at this point (if she is symptom free that is) -- while of course

> carefully monitoring her symptoms. It sounds like like kids bounce back

> from this surgery so easily compared to adults, I think the biggest risk is

> if you do early intervention are you setting her up for possible more

> surgeries in the future (I do not know the answer, just throwing it out

> there)? I'm sure more parents will chime in with their experiences and

> insight. And yes, generally a thickened filum is the simplest form of TC to

> do surgery on.

>

> I often wonder if many of my problems would have been avoided if I'd been

> diagnosed properly as a teenager and had surgery at that point.

>

> Dee

>

>

>

> >

> > 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.

> >

>

>

>