Update on Kari Coldwell & history --long--

[Guest guest]

Hi!

My daughter Kari is succesfully recovering from 4th surgery and

thought I shd share...we haven't posted in awhile and several have

asked...so here goes...

Kari sufferred a whiplash-type injury @19 yrs old in 1996. Her 1st

symptoms were spasms in her neck, jaws and headache...-ER xrays

showed nothing.

1 yr post accident, diagnosed w/FMS, major pain, headaches trouble

sleeping & exhaustion forced her to drop out of college w/only 2

classes left, lost her part-time job and was sleeping constantly..yet

more & more exhausted.

By 3 yrs - treated w/meds for:pain, headaches, IBS, sleeping disorder

(alpha over delta-active state never deep sleep), restless legs,

Reactive hypoglycemia, positional drop episodes....she'd standup &

feel faint & she'd fall often, run into things, continued eyesight

changes.

Docs began refusing to treat her or her pain and finally a very scary

episode...she was found passed out on the floor--her brother and sis

had a hard time bringing her around. Reactive hypoglycemia...seemed

to be the cause of this one since she improved after some sips of

orange juice....when she said I wish you had just let me die- I just

can't go on...we were all devastated and I was more more

desperate/determined to find out what this was.

Began internet searching...late into night typing in her symptoms -

leading me to nuerological sites and an FMS site...that sponsored a

FMS conference where(her) nsg was presenting his studies on the

connection between FMS & Chiari and cervical stenosis.

His list of symptoms...described Kari's exactly....long story

short....we went to conf and then set up an appt 1mth later & she had

1st MRI

I thought he'd find cervical stenosis due to the car accident...after

his 2 hr nuerological workup and reading of MRI's found chiari and

cervical stenosis!

Her Herniated tonsil were found to be in the " mild --2-3mm " but her

symptoms were anything but!!

At that first visit that he told us he would be surgically

conservative due to her age 22 --but he laid out all the types of

procedures that he could do if the conservative approach did not give

her good symptom reversal....we had no clue then...that eventually

she would need all of them....hence 4 surgeries.

Other than her being a learning curve...(he now does these multiple

procedures in 1 or 2 surgeries...on most of his patients) Kari has no

regrets...for she continues to improve and has resolution of most of

her major problems - so we are one of theose that have not posted

much lately - less needy and very busy...getting on w/recovery...

Pls don't think that surgery is an instant fix - her recovery was

slow and full of ups and downs---but she was extremely sick and

undiagnosed for over 3 yrs.....in fact ruled and receives disabilies

after another 2+yr fight!

Also unlike our " lucky " Chip (sorry Chip you know you are our

measuring stick ;0) - it took several procedures to feel that she

really was a success story.

Intially, after each surgery.... she had wonderful & noticeable

improvements...which then began reversing after a few months...

she/we and her doc knew that more surgery was needed (thank God he

always believed her and was willing to do more testing and showed she

needed more surgery) - she ended up having all that was mentioned on

that 1st nuero workup.

Kari surgeries:

1st standard decompression w/ dural graph and c1- c2 laminec

2nd more laminectomies to top of c-5 and a fatty-lipoma (scar tissue

had formed and need to be excised)

3rd cerebeller tonsil removal there were actually 4-5mm right side

slightly longer and both pointy

4th laminectomies to c-7.

Things learned....age shd not be the main reason to be or not be

conservative...symptoms and how disabled you are from them...shd be

the measuring stick!

Sorry this is so long...today she is 2+ wks off the narcotics,

& major improvements...balance, bladder & bowel has normal function,

skin lesions finally healed, flushing and spasms/posturing

are gone...she is sleeping and feeling rested upon waking....her

blood pressure & temp is norm again 98.6 not 96 to 97...etc.

...these are some of the many symptoms improvements she continues to

have...and she sis till rebuilding muscle and strength.

Wow what changes have been noted in my so necessary " journal " about

Kari and her medical journey. Her medical journey began w/ that

dreaded phonecall.... " Mom, I've been in an accident...I think I am

alright...but I don't think I can drive the car......

Gentle hugs...I hope sharing her story helps others in their " chiari "

journey.

Dori Coldwell and Kari (turning 26 this summer!)