RE: A chance for the newer Members!

[Guest guest]

OK, I'll Bite!!! (lol)

I am , mom to Mike (13). He has SB and along with a few other things he

has TC. He had surgery for TC in 98 and seems be doing ok so far. He does

have it tethered again and we have just been watching for signs of things

getting worse. They told us the next surgery would be more risky than the

last so we are putting it off as much as possible. He does have occasional

back, leg and neck pain, headaches, falls sometimes and the usual bowel

bladder signs. They seem to have subsided now and the mri from last month

shows very minimal change from after his last surgery. He has had a growth

spurt over the summer so we attribute some of the symptoms to that.

I have learned a lot from the list so far and look forward to reading

on.............

Thanks,

Mom to 2 + 1 / Mike (13) L5-S1, Lipomyelomeningocele, TC, Allergies, ADHD,

Syrinx, ACC and whatever else I can't think of right now and Matt (6) Who

Loves Kindergarten!! and Mike SR. (40)

http://marnellnews.homestead.com/marnellnews.html

Western Burbs of Chicago : Loyola Univ. Med. Ctr.

[Guest guest]

I have heard of others saying that this is what their Dr. said. Yet, I have

not seen anything that states this as true. I have heard of soo many people

who have done well with more then one Detethering. Can you explain to me why

Mike's Dr. feels this way? What is his reasoning behind it?

Oh, ......I am Brande, from the Spina Bifida Lists......I just sign my

Signature different on this List.

Nice to see that you have joined in.

Me

mymocha@...

They told us the next surgery would be more risky than the

> last

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.427 / Virus Database: 240 - Release Date: 12/6/2002

[Guest guest]

I have heard of others saying that this is what their Dr. said. Yet, I have

not seen anything that states this as true. I have heard of soo many people

who have done well with more then one Detethering. Can you explain to me why

Mike's Dr. feels this way? What is his reasoning behind it?

Oh, ......I am Brande, from the Spina Bifida Lists......I just sign my

Signature different on this List.

Nice to see that you have joined in.

Me

mymocha@...

They told us the next surgery would be more risky than the

> last

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.427 / Virus Database: 240 - Release Date: 12/6/2002

[Guest guest]

Hi Brande,

I thought that was you but wanted to be sure. LOL!! Mike has lipo and the

drs think it is more risky to go in again if he has not had serious issues.

we are just keeping a diary for 4 months to see how things go.

Mom to 2 + 1 / Mike (13) L5-S1, Lipomyelomeningocele, TC, Allergies, ADHD,

Syrinx, ACC and whatever else I can't think of right now and Matt (6) Who

Loves Kindergarten!! and Mike SR. (40)

http://marnellnews.homestead.com/marnellnews.html

Western Burbs of Chicago : Loyola Univ. Med. Ctr.

[Guest guest]

Thanks for the welcome. The only hospital Mike has been to for SB stuff is

Loyola. He was airlifted there at 3 hours old and we have been very pleased

with the drs. there. Course we have wings with our name on it at just about

every other hospital for other " normal " kid things. (lol)

Are you a member of ISBA? They are having a conference in May in Northlake.

You may find this very helpful for getting new information.

How is your daughter doing? If they only found out about it 3 years ago, did

she have any issues before than? Hope you don't mind me asking.

[Guest guest]

I don't post much cause I just seem to whine-- but these days we are making

progress! I did want to say something about Arachnoiditis. My (17,

tsc released at 11, many fractured vertebrae, chronic pain and aracnoiditis)

is seeing a physical therapist and he is manually stretching her back

muscles especially around her scar (L-1 to L-5). It has really helped and

he says it will stretch the scar tissue in the dura. We also do hamstring

stretches at night where I lift her legs as far as is comfortable for her

holding one hand behind her ankle and one hand on top of her knee, and hold

them for 10 seconds in reps of 10. She exerts no effort because she can't

put pressure on her back muscles for lots of reasons. But-- since we've

started the therapy-- we've had no stress fractures and lots less pain.

This is the first time in literally YEARS that she's felt better and the

answer has been so simple. It just took someone who was willing to try

something different. Hope this helps!

JR

[Guest guest]

Hi:

I am . Mom to who is now 16 months. I joined about a month ago.

I check and read the sight as often as I can. It has been very informative and

helpful. had her surgery to release her tethered cord in Aug, just

after she turned 1. So far it seems to have been positive. She is walking now,

falls a lot, but is very determined. She has had two of the Urodynamic tests

done. The first one the found reflux in her left kidney. The second after the

surgery, didn't show any nerve damage that they could see from the surgery, but

advised we would have to wait until she potty trains to know for sure. We are

on a daily antibiotic to prevent UTI's. It's hard to tell sometimes if she has

pain etc, because she is so young still. The NSG seems to be very optimistic

about her outcome. We do not have to see him until summer again. Seems like a

long time to me though. I sometimes wonder/feel like they should check her more

often to make sure things are going correctly. When you are new at this, it is

hard to know when to push or pursue things.

It all started when I pointed out to her pediatrician that she had a dimple and

the crack of her bum was crooked, & discolored (she also has a large hemangioma

in her rectal area that they were busy treating-seems they forgot to look up!)

he sent us for a sonogram she was 4 months then. It showed the spinal cord to be

low-L1-2 they thought. We were sent to a NSG about two months after that and

he advised that they would do an MRI closer to her 1st b-day (did it in July) as

sometimes the cords came " up " as the babies grew. The MRI showed her tethered

at L4, with a large mass in her spinal sack. Her surgery was scheduled for the

first week of Aug. After the surgery the NSG told us the band was even thicker

than her thought, but that everything went well, and she could re-tether, but he

felt it wasn't probable.

I really appreciate this sight and all the information it has provided to me.

Helped open my eyes and educate me more on what has. Thanks!

Just outside of Niagara Falls, NY

Mom to Courntey 16 months & 4yrs

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.427 / Virus Database: 240 - Release Date: 12/6/2002

Not Medical Advice. We Are Not Doctors.

Need help with the list? Email kathy@...,michelle@...,

rick@...

[Guest guest]

Yes Tommi-- the post was for you-- and anyone else who is dealing with the

pain of arachnoiditis. I know what we're doing might not help everyone--

but is sure is helping us and I thought 's pain was hopeless! Good

luck!! It took about a month to see a major difference-- but boy do I see

a difference now!

[Guest guest]

Yes Tommi-- the post was for you-- and anyone else who is dealing with the

pain of arachnoiditis. I know what we're doing might not help everyone--

but is sure is helping us and I thought 's pain was hopeless! Good

luck!! It took about a month to see a major difference-- but boy do I see

a difference now!

[Guest guest]

Yes Tommi-- the post was for you-- and anyone else who is dealing with the

pain of arachnoiditis. I know what we're doing might not help everyone--

but is sure is helping us and I thought 's pain was hopeless! Good

luck!! It took about a month to see a major difference-- but boy do I see

a difference now!