Re: New member intro

[Guest guest]

Hi Guys,

My name is and welcome to are wonderful group. You will get just what you

ask for here planty of support and answers! I was also born with SB with the

fatty tumor or Lipoma that tethered my cord. Mine wasn't found until age six. At

that time it was to late to save my bladder so they gave me a urostomy but most

on the list cath. Does your son have bladder or bowel issues? I didn't have any

problems after my first detether until I was 18. Which my nsg had said I would

have when I was done growing. My first symptom at that time was a severe

headache that wouldn't go away and I was very sensitive up my spine. I could

actually feel the pulling. I had to have surgery again after my second child was

born but you obviously won't have to worry about that with your son. LOL The

mothers on the list seem to have more trouble after carrying a baby. I just had

surgery again in March of this year ( I am now 40 by the way) the last was 20

years ago so I have had good breaks in between. This time things were a lot

rougher. My symptoms were headaches ,pulling up my spine , my left foot was

arching and my toes were all curled down and I couldn't straighten them. My

first nsg that took care of me as a child always checked my feet at every

appointment. He always said that usually people have trouble with there feet

until this time around I had no clue what he was talking about because as a

child I had no trouble with my feet. I hope these things help you with what to

look for and I know the others will also have plenty of input. The other thing

you must realize is that we are all different even though most of us have a lot

of the same symptoms. Chris

New member intro

Hello, we are a family of 5 with our youngest (6) having spina-

bifida L-5 to S-2 with tethered cord via a fatty tissue tumor. He

was untethered at 3 months of age but they were unable to remove the

tumor since the spinal nerves run through it. As he approaches the

age of schooling and sports etc. We are very interested in finding

out more about symptoms that would warn us that he may be re-

tethering. Currently he is having issues with stamina or more

precisly the lack of it. We have done the blood screens, asthma

testing and still no answer. Currently we are trying a sleep study

in his sleep management but that as well is going nowhere. He has

no left foot achilles reflex and has an incredible pain tolorance.

Any help or suggestions about where or what we should be doing to

assist our son with his growing up would be greatly apprciated. He

had his surgery done a Madigan Army Hospital in WA and we now live

in WI where we are now required to be seen at Childrens hospital in

Milwaukee. Currently they tell us not to call unless he is

retethering. They have also changed nuro's 4 times in as many

years. Thank goodness we have found a very caring Peds Doc that is

doing what ever is needed with referrals etc. Sorrry did not mean

to ramble so much. Thank you for " list " ning.

Debra and TArin WI

[Guest guest]

In a message dated 12/16/2003 9:09:13 PM Eastern Standard Time,

chicamuxen@... writes:

How do you other early risers with long commutes fit in a workout?

Are you doing your workouts later in the day? Do any of you exercise

in the evening? That is when I have the most free time but I'm a

poor sleeper and I'm afraid that exercise prior to bed would cause

sleep problems. Suggestions?

Bonnie S.

Hi Bonnie, and welcome!

My schedule is a bit different than yours. I am usually up at 6:00 a.m. and

in bed about midnight. My workouts are a mix between mornings and afternoons,

depending on my day. Exercising in the evening has never interfered with my

ability to sleep. I would give it a try as an experiment and then you can

decide what works best for you.

Kelley