Guest guest Posted April 3, 2008 Report Share Posted April 3, 2008 Today I got a call from the NS office, they had a cancellation and could get Gabe in. We met with both the PA and the NS. Gabe was offically diagnosised with TSC due to a fatty filum terminale. Connie, I asked them why the filum was not thicken yet it had fat in it. Apparently the fat is not in the filum, just surrounding the filum. Despite Gabe's lack of clinical symptoms ie no bladder or major bowel issues, the NS has recommended proactive surgery. I think I agree, wondering what people think. Do I or don't I. I know the decision is ultimately mine, but I do appreciate everyone's imput. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2008 Report Share Posted April 5, 2008 I have tsc and have had 3 surgeries. I am a mother of 2 that have also had tsc surgery (ages 13 & 15). I would recommend that you wait until he shows sign or symptom. Especially watch him closely when he starts the teenage growth spurt. Their bodies grow faster than the cord can stretch. This is when real problem could show up such as curvature of the spine, bladder/bowel issues, headaches etc. My mom however has it and is 55 and has never had surgery and her symptoms are much less than ours. Amy L. " You must be the change you wish to see in the world " ~Gandhi --------------------------------- You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.