Re: Successful Surgeries

August 8, 2000

Hi,

I was wondering, for how long did have Symptoms before his

Decompression Surgery?

Take Care,

Brande

mymocha@...

> For the surgery was a huge sucess. His syrinx is gone completely

and

> all noticable symptoms disappeared immediately. There were also major

> improvements in his motor skills, cognitive abilities, and attention

span.

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August 8, 2000

In a message dated 8/8/00 3:16:56 PM Central Daylight Time,

mymocha@... writes:

<< I was wondering, for how long did have Symptoms before his

Decompression Surgery? >>

's symptoms started at birth, although I did not know it. I believed

his NSG when he said, " It's not the chiari...all Spina Bifida children have

chiari. It's not a big deal. "

Well it was a big deal. 's swallowing problems caused 5 years of

aspiration pneumonias which caused him to go into (ARDS) lung failure. After

60 days on the life support and 90 days in PICU and 120 days in the hospital

he came home with a permanent trache. His trachea and esophagus were

permantely seperated so he can not aspirate at all, it is not physically

possible. He also could no longer talk. His lungs healed for two years and

I learned chiari, and found a new NSG. He ordered a long overdue MRI (the

first one ordered since one was ordered by the pulmonologist at 8 months old

for a baseline) and within two weeks of the NSG. and I going over the MRI's,

was decompressed. After Surgery he did tell me things were a lot more

compressed than they thought. But when my daughter asked him if he should

have had the decompression shortly after birth, he just kinda smiled. We

knew full well what that meant and that he would not speak against his

colleague

So to give you a short answer, he had symptoms for 7 long years before he was

decompressed. That is why I consider it a God send for all that we do have

and blame the first NSG for all that we lost!!!

I truly believe, had had his decompression at a year old instead of

just a feeding tube to " cure " the swallowing problems, he would not have had

the 5 years of aspiration pneumonias, the damage to his lungs and the

permanent trache. I do realize no surgery comes with guarantees, but with

the recovery he had after 7 years of symptoms I can only imagine how good he

would have done had we had the surgery 4 years earlier. Plus he probably

would never have developed the Syringomyelia/Syrinx if the surgery had been

done earlier.

So he most assuredly is a Sucess Story !!! A Miracle, an Angel on Earth, and

my HERO !!! He has taught me (and just about everyone else he has met)

Courage, Humility, Priorities and what really is important, Unconditional

Love and a Renewal of Faith and a Wonderful Love of Life. Mighty big job

for an 8 year old that can not even talk !

Love, huggs, and prayers, Haydee (Nana to , 8 years old w/Spina

Bifida, ACM II, Hydrocephalus w/VP Shunt, Tethered Cord, Syringomyelia

w/Syrinx @ c1-c2, G-Tube fed, (totally NPO), Swallowing Coordination

Disorder, Neurogenic Bladder, ARDS (Lung Failure 3/30/97, 33 days on ECMO

(total lung bypass) 60 days on life support, 24 hr-Humidified Oxygen

Dependant, Radical Tracheostomy w/total loss of Vocal Cord Use, Paralyzed

from the Waist Down, 18 Surgeries, Asthma, Severe Latex Allergy, Allergy to

many Medications, Adhesives, and tons of other stuff, Posterior Fossa

Decompression, Opening of the Dura, No Graft, c1-c2 Laminectomy , March 2,

1999, so far so good and getting better and stronger every day!!! With Such

a Wonderful Love of Life and one crazzzzzy Nana (dx'd so far with Lupus,

Hypothyroidism, GERDS, IBS, Sleep Apnea, Severe Edema)living right outside

Baton Rouge, Louisiana)

's Web Page~~~~> The Story

http://www.pressenter.com/~chip/joshua.htm

August 8, 2000