Re: New Member- with 17 month old needing surgery for Tethered Cord

Posted April 7, 2006 · April 7, 2006

In a message dated 4/7/2006 5:18:48 PM Eastern Standard Time,

tommigrl1@... writes:

What NSG did you see in Chicago, that is were we are

at.

Tommi, who do you see in Chicago? I've heard good things about several

neurosurgeons there, mostly McLone, Frim, Bowman and Hahn... seems to be a

good

place for ped NS

Connie

Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 5

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula

imperforate anus (repaired 5/00), single kidney, PDA (closed on its own),

malformed pelvis and hemisacrum, long segment lumbosacral levoscoliosis with

hemivertebrae, extra left rib, genital anomalies with hypospadius (repairs

9/00,11/00, 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired

5/01),

tibial torsion and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA,

GI reflux, DGE/gastroparesis, mild swallowing dysphagia, eating issues and the

most beautiful smile ever) _conni60640@..._ (mailto:conni60640@...)

Our website _http://members.tripod.com/conni60640-ivil/_

(http://members.tripod.com/conni60640-ivil/)

TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_

(http://health.groups.yahoo.com/group/LMC-TCS/)

Congenital scoliosis support group

_http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/)

S. Jersey

Posted April 7, 2006 · April 7, 2006

In a message dated 4/7/2006 7:13:19 PM Eastern Standard Time,

blast21@... writes:

mclone still doing them? i saw him in 2000 and thought he was near

retirement.

Well, he does some, but he is semi retired... he does still do consults from

last I heard if you send films... But Dr. Bowman is trained by him and

worked closely with him, and I've heard good things about her..

Connie

Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 5

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula

imperforate anus (repaired 5/00), single kidney, PDA (closed on its own),

malformed pelvis and hemisacrum, long segment lumbosacral levoscoliosis with

hemivertebrae, extra left rib, genital anomalies with hypospadius (repairs

9/00,11/00, 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired

5/01),

tibial torsion and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA,

GI reflux, DGE/gastroparesis, mild swallowing dysphagia, eating issues and the

most beautiful smile ever) _conni60640@..._ (mailto:conni60640@...)

Our website _http://members.tripod.com/conni60640-ivil/_

(http://members.tripod.com/conni60640-ivil/)

TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_

(http://health.groups.yahoo.com/group/LMC-TCS/)

Congenital scoliosis support group

_http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/)

S. Jersey

Posted April 7, 2006 · April 7, 2006

In a message dated 4/7/2006 1:43:49 PM Eastern Standard Time,

clarksadopt@... writes:

We are researching doctors for our wonderful daughter. Does anyone know Dr.

Moriarty in Louisville? She has an appt. coming up with him.

Welcome to the group Holly My son is almost six, and he had a left club

foot (and his whole left leg from hip to foot is neurologically impacted) at

birth. His sensation is affected, although his foot does have protective

feeling.

I have heard good things about Dr. Moriarty from two different people, who

loved him. I've also heard negative from someone else who said that his

bedside manner left a lot to be desired, and who they felt dropped the ball on

their hydrocephalus issues... Most likely this isn't something you would be

dealing with, and he'll be fine.

Bedside manner is pretty subjectived too, so if you go in there knowing he

may be a bit gruff or stuffy, you won't be surprised and be better able to deal

with it. Who knows, he might have been having a bad day when that person

saw them, or maybe their personalities just didn't click... It's amazing how

different one persons perspective of and experience with a doc can be from

anothers...

Good luck with your upcoming appointment!

Connie

Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 5

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula

imperforate anus (repaired 5/00), single kidney, PDA (closed on its own),

malformed pelvis and hemisacrum, long segment lumbosacral levoscoliosis with

hemivertebrae, extra left rib, genital anomalies with hypospadius (repairs

9/00,11/00, 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired

5/01),

tibial torsion and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA,

GI reflux, DGE/gastroparesis, mild swallowing dysphagia, eating issues and the

most beautiful smile ever) _conni60640@..._ (mailto:conni60640@...)

Our website _http://members.tripod.com/conni60640-ivil/_

(http://members.tripod.com/conni60640-ivil/)

TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_

(http://health.groups.yahoo.com/group/LMC-TCS/)

Congenital scoliosis support group

_http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/)

S. Jersey

Posted April 7, 2006 · April 7, 2006

Welcome Holly, Our son 12yrs was also just dx with tethered cord that affects

L3/L4 with a fatty mass, he also has issues with his cervical spine C1, C3/C4

we see a Nero surgeon next month to see what needs to be done for our son. He

also was born with bilateral Clubfeet and a joint disease in his ankles and has

issues with his bladder and kidney ( one has already been removed ) What is

your daughters name?? It's so great to have people who are willing to adopted

special needs children they really do need good homes with parents that love

them. I wish I had some input for you but I am pretty new with all of this

myself and I am just really starting to understand some of what is going on

with my son..

Hugs to you and your family.

mom to 12yrs April 29th.

H wrote:

My name is Holly and we just found out that our 17 month old has a tethered

cord with a Lypomocele (sp?). This is all new to us so we are excited to learn

from the group. Our daughter has a right club foot and dimpling on her back.

She has no feeling in her right club foot after testing and tight muscles in her

left big toe. The Ped. Neuro in Chicago said that her case is more complicated

and just guessing by the MRI he thinks her bladder is impacted.

We are researching doctors for our wonderful daughter. Does anyone know Dr.

Moriarty in Louisville? She has an appt. coming up with him.

We adopted her from China and had requested a child under 3 with special

needs. The orphanage was only aware of the club foot and would have considered

her " unadoptable " if they had known about the tethered cord. We feel so blessed

to have her in our family and look forward to learning more about her condition.

Thanks for your advice,

Holly

---------------------------------

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates

starting at 1 & cent;/min.

Posted April 7, 2006 · April 7, 2006

Holly,

What NSG did you see in Chicago, that is were we are

at.

Good luck!

Tommi

's 13 Mom Chicago IL.

--- H wrote:

> My name is Holly and we just found out that our 17

> month old has a tethered cord with a Lypomocele

> (sp?). This is all new to us so we are excited to

> learn from the group. Our daughter has a right club

> foot and dimpling on her back. She has no feeling

> in her right club foot after testing and tight

> muscles in her left big toe. The Ped. Neuro in

> Chicago said that her case is more complicated and

> just guessing by the MRI he thinks her bladder is

> impacted.

>

> We are researching doctors for our wonderful

> daughter. Does anyone know Dr. Moriarty in

> Louisville? She has an appt. coming up with him.

>

> We adopted her from China and had requested a

> child under 3 with special needs. The orphanage was

> only aware of the club foot and would have

> considered her " unadoptable " if they had known about

> the tethered cord. We feel so blessed to have her

> in our family and look forward to learning more

> about her condition.

>

> Thanks for your advice,

>

> Holly

>

> ---------------------------------

> Talk is cheap. Use Yahoo! Messenger to make

> PC-to-Phone calls. Great rates starting at

> 1 & cent;/min.

>

> [Non-text portions of this message have been

> removed]

>

Tommi

's Mom

Chicago, IL. USA

__________________________________________________

Posted April 8, 2006 · April 8, 2006

mclone still doing them? i saw him in 2000 and thought he was near

retirement. i met w/ frim but didn't really care for him.

_____

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of conni60640@...

Sent: Friday, April 07, 2006 4:06 PM

To: tetheredspinalcord

Subject: Re: New Member- with 17 month old needing surgery for

Tethered Cord

In a message dated 4/7/2006 5:18:48 PM Eastern Standard Time,

tommigrl1@... writes:

What NSG did you see in Chicago, that is were we are

at.

Tommi, who do you see in Chicago? I've heard good things about several

neurosurgeons there, mostly McLone, Frim, Bowman and Hahn... seems to be a

good

place for ped NS

Connie

Mom to Sara 14, Nicky 7 (GI issues, megacolon), and 5

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula

imperforate anus (repaired 5/00), single kidney, PDA (closed on its own),

malformed pelvis and hemisacrum, long segment lumbosacral levoscoliosis

with

hemivertebrae, extra left rib, genital anomalies with hypospadius (repairs

9/00,11/00, 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired

5/01),

tibial torsion and 4.5cm length discrepancy - wears AFO and 3.5cm lift,

SUA,

GI reflux, DGE/gastroparesis, mild swallowing dysphagia, eating issues and

the

most beautiful smile ever) _conni60640@..._

(mailto:conni60640@...)

Our website _http://members.tripod.com/conni60640-ivil/_

(http://members.tripod.com/conni60640-ivil/)

TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_

(http://health.groups.yahoo.com/group/LMC-TCS/)

Congenital scoliosis support group

_http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/)

S. Jersey

Posted April 8, 2006 · April 8, 2006

Hi Holly and welcome to the group.

My name is Tina is my daughter Alaina, who is 11 months old, was born with

lipomyelomeningocele. I am assuming that this is what your daughter has been

diagnosed with??? I have become " quite the expert " in this!! Ha Ha. Most

of what I have learned, I have learned on my own because there are not too many

out there who have lipomyelomeningocele. Myelomeningocele (which is full blown

spina bifida) is much more common. Both are similar and can share some of the

same issues, but lipo is usually " less " serious....

Anyhow, my daughter Alaina was born with a large lipoma (fatty mass) just

above the " crack of her butt " for lack of a better term. This was quite a

surprise as after having AFP tests and ultrasounds, etc. I was never told that

there was a problem. At three days old we followed up with a neurosurgeon who

diagnosed lipomyelomeningocele and suspected a tethered cord. An MRI done at 1

month old confirmed the tethered cord and we were advised that she needed

surgery.

Alaina had surgery at 2 months old... the procedure was laminectomy with

tether cord release.

Alaina has no feeling or movement in her toes, feet or ankles. She also

developed clubbed feet for which she was casted for three weeks....after the 3

weeks of what they call " serial casting " her feet looked normal. It was

amazing. It has been about 3 months since her casts were taken off. They

have " clubbed " a tiny bit. We continuously stretch them in hopes of keeping

them as straight as we can. We are told that if they continue to club, she may

require a surgery, which is apparently pretty minor, to " clip " the heel

cords....

As far as Alaina's kidneys and bladder go, we had a kidney ultrasound (to make

sure the urine wasn't backing up into them) and a urodynamic test (to make sure

the bladder was emptying fully) when alaina was 6 months old. All of the the

testing came back normal at that time so we didn't have to get involved with

catherizing her at this time (we could end up having to somewhere down the

road). She has to be tested every 6 months.....we actually go at the end of

May to have these tests done again...

We live in New Jersey and Alaina is treating at Childrens Hospital of

Philadelphia in Pennsylvania, so unfortunately I can't be of any help to you

with recommending a doctor....

All of this info that I have given you is very broad and under the assumption

that your daughter has " similar " issues. Please, feel free to e-mail me back

with more specific questions or any questions/concerns that you have....I would

love to be able to help you and your daughter in any way I can!!! I would

love to hear about your daughter as well....I bet she is beautiful! I would

love to hear how she is doing physically...is she walking, did she crawl,

etc???? Alaina at 11 months old is just starting to attempt to crawl and I am

thrilled! I think my daughter is absolutely amazing!!! Above all of the

medical mumbo jumbo, she is just a beautiful, loving, strong and amazing little

girl! I am head over heels in love with her and would not trade her for

anything in the world. In her 11 months, she has taught me and inspired me so

much I can't even tell you!!!! I'm sure you feel the same about your daughter!

Thanks for giving me the opportunity to share with you!! Hopefully I hear

from you soon!

Tina