New here and newly diagnosed

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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New here and newly diagnosed

Postby Photo Mom » Sat Jan 26, 2008 11:38 am

Please forgive me for posting before introducing myself.
My son just turned 10 and was diagnosed with Tethered Cord (Occult Variant) with hypertonic neurogenic bladder as well as a slit like syrinx. This was Dr. B at TCI's conclusion after reviewing the MRI's. I got them to Dr. B through my niece who is already being treated there. Our neurologist gave the all clear from the same MRI's.

My son doesn't have Chiari, but my niece does. Her mother is my best friend so I've been close to the situation as she has gone through:
Decompression #1
Shunt #1 4 weeks later
Shunt #2 1 week after shunt #1
Then she finally went to TCI:
Decompression #2
Tethered Cord surgery

I actually got to accompany them during Decompression #2 in NY. It was a conversation with Dr. B during this visit that led me to get MRI's for my son in the first place.

As I stated in my other post my son has Tourette's Syndrome, diagnosed at age 6. He doesn't curse-that is only 5% of the Tourette's population. But, he is never tic free. It hasn't sopped him from missing a beat in life though. He loves playing sports, singing solos in the school talent shows and playing with friends. I really admire him. He doesn't know about the diagnosis yet...we don't want to tell him until we actually see a Dr. in person and know more.
We are waiting to hear from TCI. We have returned the packet. We live in the Dallas area so we are looking at doctors at Children's Medical Center as well as Cook's Children's Hospitals. I would appreciate ANY input on doctor selection I could get. 2 different sets of doctors, one of which is a specialist on Chiari, missed my niece's tethered cord which resulted in her 2nd decompression 2 years after the first. I'm really fretting over doctor selection.
Right now we feel like we are without a doctor because our neurologist froze up on us the moment we told him we had gotten a 2nd opinion from New York. He wouldn't even refer us to a neurosurgeon.

I've already learned a lot from reading your posts. I'm glad I found the site.
Kimberley
Photo Mom
 
Posts: 8
Joined: Wed Jan 23, 2008 1:36 pm

Postby lalaswihart » Sat Jan 26, 2008 1:14 pm

We saw another doctor before Dr B and he did two surgeries that not only did not help but made my daughter worse. I personally would stick with TCI and Dr. B all 4 of my children have tether cords and CM1, and Dr B thinks that the tether cord actually cause my childrens Chiari. My 8 year old was pretty bad off when we got to TCI, now her SM is almost gone, her headaches are all but gone, her wetting and bladder problems are few and far between, she is feeling like she said " a pretty normal kid again" it should have taken only two surgeries if we went with my gut in the begining and went to NEW YORK first instead of staying local and her ending up with 5 surgeries in 11months.

I wish you all the luck, and just suggest that you stay with a doctor who deals with your sons related diagnosis, There are many great dotors but only a few who deal with kids like ours only.

God bless,
Laurie
Laurie
Tx mom of 4 beautiful little ones
8yr old CM1/SM/TC/EDS,
6yr old twins CM1/ TC both possible EDS
4yr old CM1/TC

"For nothing is impossible with God." Luke 1:37
lalaswihart
 
Posts: 61
Joined: Wed May 23, 2007 12:32 pm

my apologies

Postby neshoba » Tue Jan 29, 2008 8:20 pm

I am sorry to hear about what happened to your daughter. I do have a question though. (I am new.) Where is TCI, what is the name of the facility and who is Dr. B? Do they have high success rates. I have been gone to a doctor's appt. all day so I have not had a chance to look at very many posts yet. However, the posts I have got to read, there where good recommendation in Chicago, NY and Iowa I think it is if I recall correctly.
neshoba
 
Posts: 4
Joined: Tue Jan 29, 2008 9:41 am

Postby lalaswihart » Tue Jan 29, 2008 11:30 pm

TCI is The Chairi Institute in New York, Dr. B is Dr Bolognese who is awesome and really knows his stuff. All they do there is Chiari and Chiari related issues I will add the link to there site. They have great videos and Dr B is the guy on the video's. I wish you all the luck and I want to say thank you, my daughter is doing really really well because of TCI and Dr B.

God bless you and I hope you find the right doctor, the best is the one who only does Chiari, not one who has done a few. :D




http://www.northshorelij.com/body.cfm?ID=6407
Laurie
Tx mom of 4 beautiful little ones
8yr old CM1/SM/TC/EDS,
6yr old twins CM1/ TC both possible EDS
4yr old CM1/TC

"For nothing is impossible with God." Luke 1:37
lalaswihart
 
Posts: 61
Joined: Wed May 23, 2007 12:32 pm


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