Here we go again..surgery #4 coming up

[Guest guest]

Ugh. Long story short.. was 14 when we found her TSC and she had

her first detether in Grand Rapids, MI...next two in Atlanta..next one will

be in St. Lo, MO. She is tethered with a lipoma..thankfully, the last one

at least lasted 4 years. She has increased pain, numbness, constipation,

and one episode of urinary incontinence. I didn't think the surgeon would

want to do another since at our first visit with this surgeon he seemed to

feel she would have to have pretty definite overt symptoms to recommend a 4th

....

At any event, he seems wise and was one who sadly shook his head when we

told him that we were told her problems would be over at full growth. Yet,

he asked if she has grown since the last surgery. I was surprised

and we had already been there a long while so I didn't ask why he even asked

since I didn't think he thought growth was relevant. Any thoughts? I am

wondering if growth can contribute to the exacerbation of symptoms but

clearly full growth is not any sort of reassurance there will be no return of

symptoms?

Thanks to those of you who familiarized me with the CINE and the flip flop

MRI...he said that he bases his decisions on symptoms but the fact that

there is zero movement on those is a factor in favor of considering another

surgery. He sees clearly where he would concentrate (again, I can't believe

I didn't ask if it were scar tissue or the remaining lipoma)..we are

terrified and in some ways relieved since we would like to retain bowel and

bladder function which are worse than they were before...but .... sigh sigh

sigh

thanks all.

Randee