Droopy Brains

No Time ...arghhh

2011-09-27T16:44:00.000-04:00

I really can't wait to get to this blog, but alas- meetings with principals, Fall Festival planning, Katie's Dance Class followed by Katie's 2 hours of dreaded Volleyball this evening are hampering my efforts!!!

But don't you worry, blog world.. the rant of all mega rants is on its way. Hold on to your mouses...or mice.. or mices...heh

I think I might stsrt a new blog, btw... Keep this one Chiari focused and the other just Jen's goin' off focused. Wudya think? What shall I name it?

I'm back

2011-09-26T16:30:00.000-04:00

I am soooo fed up with so many things.

PAIN.

UNEMPLOYMENT.

BEING BROKE.

The IRONY of the APATHETIC crappy SHITTY people who kept their state jobs while for doing absolutely NOTHING but being lazy fat ass warm bodies who show up at work, while an intelligent, talented, good hearted, caring, loving person who ALWAYS went above and beyond lost her job because her children got sick.

I am fed up with this disgusting president. Go to Hell and take your "bill", your brownshirts and your Attackwatch.com with you.
I am fed up with patently false accusations of extremely sick things from extremely sick people.

Lastly- I am fed up with saying and doing nothing about it... so the world will hear me roar... Listen up, but not if you're faint-hearted.

Tomorrow, we'll talk about what a shitty thing SBUMC did to me...and we'll name some names shall we? Yes, we shall. That aughta be fun. Cuz Karma's a bitch and so is Diane Marone.

2010-05-31T09:28:00.001-04:00

Back home and doing really well...Almost painfree. Michael's biggest complaint is dizziness with occasional nausea, but it's nothing compared to last week.

Monday- Day 76googazillion

2010-05-24T09:29:00.000-04:00

Michael had a CT scan that showed he has some intracranial pressure and swelling. He's being treated with Mannitol- which is some scary $&^*. He's tolerating it well though so the laundry list of potential wicked side effects is shortening with each dose, thank God.
He's also being treated for meningitis- caused by the surgery (not the infectious type). He's on Decadron- which he's also beginning to tolerate better than he had been.
He's still just laying down moaning, with no interest in sitting up or eating. He gets severe nausea as soon as he sits up. Hopefully these treatments will help with that, but it's got Michael too afraid to even try now.

I'm also worried because he's been very bradycardic- his heart rate has been in the 40s for 2+ days now. Drs say it's from the brainstem manipulation and will improve with the Decadrom treatment.

Hopefully as the day goes on he'll perk up. Dr. Bolognese should be in soon. I will post his wisdom later.
Follow up CT Scan tomorrow.

Sunday - Day 3

2010-05-23T10:38:00.001-04:00

Mike hasn't been feeling well. I tried updating the blog yesterday via my phone app, but it somehow broke the blog post into 10 small posts rather than one large post. Its never done that before and I didn't have the time, nor the patience to fix it, so I just deleted yesterday's update.

Michael cannot eat or drink without nausea and vomiting. His pain is better controlled, but the nausea is awful. He cannot sit upright without vomiting either so the thought now is that he has either aseptic meningitis or "chemical" meningitis. Dr.Bolognese was in this morning to explain what chemical meningitis is, but to be honest...I need to go look it up in english.
Regardless- the treatment is Decadron, which he's on.
It's also possible that he's just very low on CSF because of the surgery, and his body isn't replacing it as quickly as normal because he had been on Diamox for so long.

Dr. Bolognese has increased the Decadron and fluids. Hopefully this will do the trick soon. Mike is miserable. :(

First Morning post-op

2010-05-21T10:58:00.000-04:00

puke
pain
Dr.B
stood up
turned head
puked
sat
puked
turned head again
Dr.B left
pain
went to sleep
puked
went to sleep

it's only 11

weeeeeeee

Changed anti-emetics and pain meds.
Lets see if the new cocktails will do the trick

It's all over :)

2010-05-21T10:51:00.000-04:00

So this is the 3rd time I'm attempting to post this update! The hospital's server boots you offline if you're "idle" after a few minutes. It doesn't seem to sense the typing going on!
I've finally learned my lesson.... notepad/copy/paste ;)

okay... So Mike went into the OR around 9:30, he didn't get to the PACU until almost 7pm. It was a very, very long and complicated surgery. Dr. Bolognese was very pleased with the outcome. He was able to preserve C1, which is what we all wanted to maintain Michael's cervico-cranial stability. Dr. Bolognese worked in such a small window so that Michael may avoid cervico-cranial fusion...which would have been awful for him.
I'm so grateful he was able to successfully do this.

Dr.Bolognese said Mike had a lot of adhesions below the cerebellar tonsils which were also difficult to get to, but they're all gone now :)
His tonsils were well below C1.

Dr.B came out to see us at 6:45 to let us know that Mike did very well and that they were just closing him up.... It was the biggest weight off my shoulders EVER...I finally got to stop crying :)

They called us to see him around 7:30(?) in the PACU...He was very nauseated, but he looked well. He was very sleepy. He had 2 nurses- one we liked, one...not so much. She changed her tune after she realized we are healthcare professionals. Her original plan was to make Mike wait for his PCA pump because she didn't feel like doing the paper work for the other nurse. That plan was very short lived :) No one makes my son sit in pain because they're lazy.
Her tune changed VERY fast....and Michael got relief.

He was transferred up to PICU around 9 or 9:30. He's in the same room he was in for his last surgery...and the same room Grace was in for her decompression- so it's beginning to feel like "our room". He was doing very well until the nausea/vomiting kicked in. We've been dealing with that on/off all night.

2010-05-20T15:35:00.001-04:00

Duraplasty started at 3:20

WAITING WAITING WAITING

2010-05-20T13:47:00.000-04:00

SUCKS
:(

Sitting in a waiting room full of dozens of people- all with a story of their own.
I'm the only dummy sitting here crying like a baby :(

2010-05-20T12:33:00.002-04:00

Mike in OR ... surgery will begin close to 11... Expected to end around 5-6pm. Dr. Bolognese doing a smaller laminectomy than usual to maintain the integrity of Michaels cervicocranial junction due to his retroflexed odontoid. Smaller laminecomy means smaller visual field, which means longer, more complicated surgery... So it could be even longer than expected. Adhesions and vertebral artery position will also factor in on surgery time.
I will post updates if I get any.
Please pray.
Xoxo
Jen

CHIARI INSTITUTE & RONALD MCDONALD HOUSE

2010-05-19T16:31:00.002-04:00

We're just sitting in the playroom at TCI waiting for Dr.Bolognese.
We were lucky enough to get accepted at the Ronald McDonald House of Long Island; so that will be homebase during Michael's stay in the hospital. The girls will like it there. It's full of playrooms and kid friendly stuff. One of us will be with Michael at all times.
I'll get details from Dr.B on ICU/Peds stay time after our visit this evening and post them later. If I remember correctly with Grace... it was 3 days in ICU....and 2 days in pediatrics.

http://www.rmhlongisland.org/

MICHAEL'S SURGERY 5/20

2010-05-17T09:25:00.003-04:00

Consensus was to go ahead with surgery. His pain is ridiculous.
Michael is scheduled for posterios fossa decompression on ...

Thursday May 20th
North Shore University Hospital Manhasset (not LIJ)
@ 9:30am.

CT today, pre-surgical testing tomorrow, meeting with Dr. Bolognese et al on Wednesday.

Will post all updates as they happen just for the sake of keeping myself busy.

Just for a little vent...
Gotta love NYS... My boss refused to allow me to use paid time off for my son's BRAIN SURGERY because the state is in a fiscal crisis and she refuses to pay for me to be off and also pay someone else to be there. Regardless of the fact that the person willing to cover me is part time and it would have been at straight-pay. I only asked for 2 days off. Ironically, the very day I asked for the time off, I was at work on a scheduled shift beyond what I'm required to work. There was no need for me to stay and we were over-staffed. I asked to go home and they refused- simply because they knew I wanted to leave. So they kept me to be control-freakinsh in spite of the budget, but won't allow me to use time off that I've already earned (that they're eventually going to have to pay me anyway). Now here's the kicker.... I now have to call in sick (family sick time)- for which they will reserve (and likely use) the right to write me up for..... and they'll STILL have to pay ME and someone else to be there!!
My immediate boss, nor my nurse manager never even bothered to say so much as ..... 'Gee Jen..sorry to hear about your little boy'. NOTHING. Not an ounce of compassion. As if the kid were going to the damned dentist.

I hope they reads this. Witches
I'm probably going to end up fired anyway :/

2010-05-07T09:26:00.001-04:00

The TCI Surgical Committee...
Meeting on Monday to review Michael's case. His pain has been relentless. Enough is enough :(

Young woman shares her story for 'House' TV show

2010-05-02T11:21:00.000-04:00

The Bellingham Herald / Top Stories / Bellingham woman shares her rare brain disorder for 'House' TV show

2010-05-02T11:07:00.001-04:00

Monday May 3, 2010 8:00 PM - 10:00 PM
Chiari Malformation will be featured on "House" this evening! Please share this information with your family, friends, and collegues!

This is a big deal for awareness. Please watch.
It also happens to be my favorite tv show. I'm looking forward to this.

EXPERT BACKS TCI, MILHORAT & BOLOGNESE

2010-04-27T18:14:00.005-04:00

"EXPERT BACKS NY HOSPITAL'S BRAIN SURGERY UNIT"
......is what the headline reads-
off the CALIFORNIA AP newswire

Helloooo... where are are you Heidi Evans? Isn't the NY Daily Rag interested?
Let's take a look-see at what it says...

FRANK ELTMAN, Associated Press Writer
GARDEN CITY, N.Y. (AP) ― An expert on a rare form of brain surgery is backing a Long Island hospital under scrutiny after two of its top physicians were suspended for leaving a patient on the operating table, the hospital said Tuesday.

In a review commissioned by North Shore/Long Island Jewish Health Systems, UCLA neurosurgeon James Ausman called the Long Island hospital's Chiari Institute 'the finest center of its kind in the world.' A spokesman for North Shore, which released Ausman's review, declined to say how much the neurosurgeon was paid.

The institute draws patients worldwide who have a rare congenital brain defect called Chiari malformations, which can cause headaches, dizziness and other pain. Ausman cited the institute's experience and results with Chiari malformations, calling it 'a model for the care and treatment of any disease entity.'"

read more...
http://cbs2.com/wireapnewsca/Leading.brain.surgery.2.1659210.html

I can't wait to read what Ms. Evans will have to say about this. Surely this is important to her.

On another note:
Michael (now 13) needs decompression surgery soon. He's been out of school (being tutored) for 2 months with severe pain and dizziness. Surgery was recommended, but the extent and urgency are being determined with further testing that he's now undergoing, as Mike's chiari malforation is further complicated by a retroflexed odontoid.
He's having a swallow study, 24 hr. cardiac holter montoring and sleep study.
I will post the results as they come in.

Jen

HEIDI EVANS, TCI, FAITH and AGENDAS

2009-09-29T11:37:00.003-04:00

It really sucks when you lose or question you faith in your physicians. These past few months of witchhunting by Ms. Evans of the NY Daily News has caused many patients at TCI to wonder who to trust.

So here I sit with 5 MRIs and an LP for myself-
4 for Katie
5 for Michael
5 for Grace
~Myriads of concerns, from leaking CSF via nose/eyes, monster headaches, chronic nausea, dizzy spells, migrating pain, tingling, numbness, cognitive dysfunction, serious short-term memory lapse.... ...most of you already know the never-ending list

Bring it all back to TCI?? Maybe they're the best place to be right now?? Surely they're on their toes??
We feel so lost.

One thing I do know is this...
I trust my surgeons over the PRESS a millions times over. As an avid reader of the news and follower of politics, I know the destructive and manipulative power the press holds.
I would bet my last dollar that Heidi Evans has an agenda way beyond her journalist interest in this case. I don't know what it is, but I have faith it will be exposed.

Do you not find it odd that only Milhorat/Bolognese's names have been defamed? Who was "ortho surgeon" "#3"? Who were the anesthesiologists?? Where are their suspensions?

I will go next week to TCI and try to embrace the confidence I once had. ....and I will continue to walk past every issue of the NY Daily News and laugh at their pathetic state of desperation.

Dr. Bolognese has been reinstated

2009-05-14T10:17:00.003-04:00

Dear NY Daily News,
Bite me

Dear Heidi Evans,
You are the most pathetic excuse for a "journalist" as I've ever known. You are the epitome of biased spin. I DARE you to interview me. I will give you at least 50 Milhorat/Bolognese supporters for every whiner you can drum up. Up to the challenge??
Is Bolognese's vindication on the front page of your rag today? I bet not.
To hell with you and what you did to the Chiari community.
Karma sucks, you bottom feeder.

Jennifer Kelly

Milhorat gone- Where does this leave us?

2009-05-11T08:52:00.003-04:00

Surely anyone who has found their way to my blog has already heard that Dr. Thomas Milhorat has retired after outrageous claims and a susbsequent suspension of his license.
I refuse to post the articles, because I won't give that rag (The Daily News) an ounce of legitimacy.
I'm writing here now because I'm saddened that this topic has been placed "off topic" (not allowed to be discussed or mentioned) at most leading Chiari Support sites.
I can understand not wanting to pass misinformation during a time when the full picture has yet to be seen or known.... However, I know that many of us are looking to bounce ideas off one another.. We're looking for support and to share our concerns.
Regardless of what comes out this week about Dr.Bolognese, one this is sure- The Chiari Institute as we know it is in dire straits. Without Milhorat, many of us are left not knowing the fate of who will ever perform future surgeries.
Dr. Milhorat is the lead surgeon. Dr. Bolognese is the intraoperative doppler guy. While Dr.Bolognese is brilliant, I'm not so sure he'll be enough. He's like the jelly without the peanut butter.
Many of us (or our family members) are awaiting surgeries. Now what!?
Will TCI remain open? Who else is there? I've always hung my hat at TCI's door. I know the names of many other Chiari experts (Oro, Benzel, Frim, Menezes etc..) but which of them are the best? Which of them had faith and support for TCI docs?

I've made my opinion clear to many about the April 10th incident to many...and I've been vocal about it at the Newspaper's comments sections. I don't want to rehash it here if I don't have to.
I have respect for both of these men, while I have no respect for the press. There is much more to this story and I doubt the truth will ever be told in the Daily News print. North Shore University Hospital also has a lot to lose by allowing the real story to leak. At the very least, NSUH was (and has been) complicit in allowing Universal Safety Protocols to be ignored for the sake of expediency($$$). There is absolutely NO EXCUSE for placing a patient under general anesthesia without the surgeon at the very least scrubbing.

Obviously much more is to be revealed, but I felt that it's impotant to have a place where people are free to post their thoughts and fears without being told it's "off topic"... because we're all left high & dry at the moment. We're used to being left high & dry by ignorant dismissive doctors who know nothing about chiari, but dismissal by our very own support base is inexcusable.

Don't ignore the elephant in the waiting room.

ASAP CONFERENCE VIDEO

2009-02-06T17:43:00.007-05:00

So here's my rant.... My eyelid is all droopy like I've had a stroke. I have no idea why, but I hear it's my norm.

Michael and Gracie see the surgeons and neurologists at TCI on Monday to review their most recent MRIs. I'm afraid of what they'll say about Gracie because she's had a lot of neck pain recently, coupled with feeling like she can't hold her head up. I refuse to allow her to have cervico-cranial fusion unless it's life or death. I have a feeling that's what they're going to suggest. She's been complaining about swallowing difficulty, severe headaches, nausea and dizziness.
I pray they give me good news.

GOOD NEWS/BAD NEWS

2009-01-12T14:22:00.004-05:00

Well... it's beena long time since I've posted. Too long..
A combination of election sulking, starting a new job with more/longer hours, feeling like crap, kids feeling like crap, crazy holidays and a long month of Internet interruptions (Cablevision sucks)- I haven't found or made the time to post.

I hope 2009 offers better things.

Good news/ bad news
So Gracie has been having a tremendous amount of pain lately. It's mainly been at night, but it does happen during the day too. The pain seems to be mainly in the area of her left temple. Nothing seems to help. We've tried Motrin, Tylenol, Oxycodone and Valium- None of them do anything to help. She cries almost every night for hours before bed and it breaks my heart.
The good news is that she had MRIs of her head and neck this past week and as far as I can tell her syringes are almost GONE... Okay, well they're not gone-gone but they look a hell of a lot better than a year ago.
This was a year ago (Jan 2008)
This is now- 5 months post decompression.

While the good news is that I am thrilled the decompression surgery seemingly helped the syringomyelia..
The bad news is, I have no idea why she's still in so much pain. She has continued night incontinence and a lot of nausea.

We see the Chiari Institute docs in February

ATTENTION PHYSICIANS

2008-10-14T12:01:00.008-04:00

...

YOU SUCK

Take a happy look at my poll asking people how long they suffered before being properly diagnosed (probably by accident) with Chiari.
As of today-
-26 of 29 people suffered for over a year.
-Of them, 19 suffered for at least 5 years.
-9 of those poor people suffered for OVER 15 YEARS!

Is it apathy or stupidity?
Regardless, YOU SUCK

I thought you should know.

I wish people would donate money for research so we can unstupid you.
Unfortunately, your unsuckethness rides the back of a unicorn.

....

PUZZLE PIECES

2008-10-14T10:02:00.004-04:00

So how do you put a puzzle together when your brains are falling out?

Persistency.

I spend my life trying to fit together the pieces of this Chiari puzzle and my continuing battle of feeling like shit warmed over. Everyday I wake with a new combination of complaints. Here are some of the fun recipes-

COOKING WITH CHIARI
1) confusion + headache
2) headache + joint pain
3) cognitive FUBARedness + malaise
4) migrating joint pain + headache + neck pain
5) dibilitating holycrap my head hurts pain + Icantgetmywordsout + numbness in my face
6) I forgot + tingling in my I forget
7) discoordination + eye pressure + malaise
8) confusion + headache + malaise + I forgot + cognitive imbecileness + kill-me it hurts + putme to bed for a month exhaustion
9) all the above at once
10) none of the above + I'd sell my soul to the devil for it to last

Given that I've already had my head cracked open, had a hunk of my brain fried off, had a lovely NASA-worthy chunk of titanium screwed into my skull and I've got the ugliest 8 inch zipper scar from the tip of my head to the back of my neck- I SHOULD FEEL *&^%ING BETTER THAN THIS, don't you think!!!!!!!!!!!!!!!!!!!!!???????
Well, I don't and it pisses me off.

What does my pissedoffness get me?? Persistency.
I try to fit together every lame piece of this puzzle I can find. Some fit, some don't. Some, I can't tell if fit until the picture is bigger.

Some pieces... DO THEY FIT?
I started looking at my labs (recent and over the years). Here's what I found.

I am ANEMIC (no one knows why)
I am Vitamin B12 deficient
and I have a very low Alkaline Phosphatase in every lab result I've had since 1980.

I did some research and found a connection between these values and "Pernicious Anemia".

Pernicious anemia is caused by a lack of intrinsic factor. Intrinsic factor is a protein produced by the stomach that helps the body absorb vitamin B12. When stomach does not have enough intrinsic factor, it cannot properly absorb the vitamin. Nerve and blood cells need vitamin B12 to function properly.

The onset of the disease is slow and may take decades. Although the congenital form occurs in children, pernicious anemia usually does not appear before age 30. The average age at diagnosis is 60.

Check out the symptoms

Symptoms may include:

Shortness of breath
Fatigue
Pallor
Rapid heart rate
Loss of appetite
Diarrhea
Tingling and numbness of hands and feet
Sore mouth
Unsteady gait, especially in the dark
Tongue problems
Impaired sense of smell
Bleeding gums
Positive Babinski's reflex
Loss of deep tendon reflexes
Personality changes, "megaloblastic madness"

I obviously have many of those symptoms. Now here's the thing that has my brain going 100 miles per minute-
FOLIC ACID is a Vitamin B

As most people know, FOLIC ACID is essential for the prevention of neural tube defects (chiari etc..). So is it safe to assume deficiency in folic acid means a woman will have a higher risk of giving birth to a baby with neural tube defects (birth defects involving the brain and spinal cord- ahem* CHIARI)??

I took plenty of prenatal vitamins (fortified with folic acid) while pregnant, but here's the kicker- If I have pernicious anemia, the folic acid/vitaminB would never have made it to my bloodstream unless I injected it or took it sublingually.

All of the symptoms of pernicious anemia are easily remedied and reversed with Vitamin B12 injections. Imagine if all this time, a single shot once per month would be all it took to fix me? Could this be why I'm still so sick in spite of my surgery?

BIGGER STILL- Imagine if all I had to do was take Vitamin B12 injections while pregnant to prevent my children from getting Chiari?
BIGGER BIGGER STILL- Imagine if my mom and I (and her mom too) all have the congenital form of pernicious anemia and we all kept making babies with neural tube defects because our bodies wouldn't hold on to necessary folic acid????
EVEN BIGGER THAN THAT- Imagine if ...nahhh I won't get too far ahead of myself :)

I'd like your thoughts, please.
You're welcome to call me crazy

I'M THE QUEEN OF ENGLAND

2008-09-29T13:27:00.004-04:00

I just wanted to quickly note something about my very unscientific poll.

As of today- I asked our readers how many people in their family had ACM and/or its sister conditions. 22 people (including myself) voted.

Most of us have been told that there's either no familial incidence of ACM or it's very low (10-12%) among patient populations. This never made sense to me because most everyone I know with ACM (on the blogs, ASAP.org, CCI) has at least 1 other family member with it.

As of today- 22 people voted. Of them, 11 people had no familial incidence (that they're aware of).... The other 11 people had AT LEAST one other family member.

I may have flunked math, but I still know that's (at least) a 50% familial incidence (here on my blog anyway)!!! One would have to ask themselves... if this isn't indicitive of the real ACM population, why am I attracting so many families with ACM?? I would tell you but the black helicopters over my house are distracting me :)

I would love to see the day that someone would look closer at this. I'm SURE that the number is even much higher than 50%. Specialists don't look closely enough at families. I understand that they don't want to put family members through testing unless they are very symptomatic, but at the same time- I believe there would be a huge benefit to knowing the true statistics (symptomatic or not). It's also beneficial to know if you or your child's brain is hanging out (symptomatic or not)- because hey, it may make you think twice about your next triple backflip off your neighbor's trampoline!

Myself and my 3 children have ACM and its sister syndromes. My mother has occipitalization of the atlas (a common bony anomally with ACM).
Recently, my (maternal) first cousin and her family spent a few days visiting our family. She is my age and has 3 children of identical age to mine. They ALL had signs and symptoms of ACM, TCS and EDS. 2 of the 3 children had Beighton scores of 9!

10-12%?? Right. And I'm the Queen of England.

PRINCESS GRACE

2008-09-26T11:58:00.005-04:00

The story of a beautiful little girl named Grace.
As I mentioned in earlier posts, I was concerned for my children after my ACM diagnosis in 2004. I was told that there was only a very slim chance of them also having it. My doctors told me to only have them tested if they showed very apparent signs of Chiari. All 3 kids had vague symptoms over the years, but nothing debilitating. Grace would have an occasional headache and complain of strange pains here and there, but nothing very worrisome.

Grace successfully potty trained at age 2. 6 months later, she began having accidents at night. I assume that this just happens now and then, but it would go away. After it went on for months, I was told that it could be behavioral.
This went on (and off) until she was 4. At age 4 she began getting UTIs and kidney infections. She was hospitalized twice in a short period of time. During her hospitalizations they did ultrasounds, which always came back normal.
A few months later, her infection recurred and she was put on prophylactic anti-biotics for 6 months.

After my decompression surgery in 2005, I would float in and out of Chiari support forums and I'd try to stay updated with the latest findings in the Chiari world.
One day in 2006, I read about a new theory regarding Chiari and Tethered Cord Syndrome. Initially, I blew it off because I was never told I had Tethered Cord.
A short time later, I read up on tethered cord and was astonished by its signs and symptoms. My son Mike and daughter Grace had many overt symptoms of TCS. I went on to read about how it can cause many bladder and kidney issues. The bells in my head starting going off.

After Grace completed her 6 month round of antibiotics, she was scheduled for a repeat ultrasound of the kidneys and bladder. This was done a year after her last.
This time, the ultrasound showed startling results. Over the year, Grace's bladder became enormously dilated. Her bladder was holding over twice (300+ cc) what it should at her age and she didn't even feel it. After she voided, they repeated the ultrasound and she maintained 100+cc residual urine in her bladder- this was even after I went into the bathroom with her and told her to make sure she pee'd every last drop out that she could feel. The ultrasound also showed right-sided hydronephrosis.

So, in the course of a single year, Gracie ended up with a neurogenic, dilated bladder and hydronephrosis. It was at this point I told our pediatrician that she needed to be scanned for Chiari and tethered cord. The doctor looked at me like I was NUTS. After many months of discussing this with family (who'd been through a lot that year thanks to a car accident I had and subsequent cervical fusion surgery)- it was decided that we'd have her scanned after the new year (2008). I will bite my tongue (or I should say tie my fingers) about how I felt about that ridiculous decision to wait- It's moot now, because the wait occurred.

Grace and Mike both underwent complete brain and spinal MRI scans including x-rays under IV sedation (propofol -great stuff!) on 2/6/08. Grace went first and I stayed by her side for the whole thing. Once it was over, she recovered in a small room off to the side. While I sat with her, I was handed the films they just completed and her CD-rom. Being the NEED-TO-KNOW-NOW type of person that I am- I looked right away.
My heart sank to my feet and I'm pretty sure that some invisible man snap-kicked me in the gut. Grace had a very apparent Chiari malformation, which was no surprise to me. What did surprise me?........ The GINORMOUS syringes in her cervical and thoracic cord! The syrinx in her cervical cord was actually bulging it was so wide. I cried my eyes out. The dumbass MRI techs came in to see why I was crying. I showed one of them the syrinx and he just shrugged and said he didn't think it was a big deal. I'm used to Chiari being dismissed by the ignorant, but a professional minimizing the seriousness of THE HOLE in my daughter's spinal cord made me spit fire. How can people be so &^%$ing stupid!? I mean, really!?? Syringomyelia is degenerative, progressive and without halting it, can ultimately paralyze or kill her. If left, will cause permanent spinal cord damage. I really hate stupid people.
I shot the tech a look that could kill and he got the point and backed off quickly.

Michael's MRIs showed no surprises (thank God) as far as I could see. Once they were both fully recovered and awake, we went home and sat in strange silence.
They were both scheduled to go to the Chiari Institute a few days later.

Grace saw Dr.Kula and Dr.Bolognese that day. I can't say that I was surprised by what their findings were, but I was surprised by how quickly surgery was scheduled.
Grace had tethered cord, spina bifida occulta and Ehlers Danlos Syndrome along with her Chiari and Syringomyelia diagnoses. She needed decompression surgery and section filum terminal surgery. There was a few days of discussion about which should happen first. it was decided that she'd have the SFT first, in the hopes that her cerebellar tonsils would ascend once she was no longer tethered.

On February 21, 2008 Grace had her surgery. I cannot tell you how frightened everyone was. She was given Versed (REALLY GOOD STUFF!) before surgery to help ease her anxieties about the IV. I was allowed to go into the O.R. with her, which was comforting for both of us- until-... she entered the second stage of anesthesia. I was warned about it beforehand, but I guess I ignored them because I was not prepared for what happened. Her eyes rolled into the back of her head and her body shook like she was convulsing. 4 of us had to hold her down. I don't think I've ever lived through anything worse than that, particularly since it was then that I was escorted out.

Her surgery was 4 hours long- the longest 4 hours of my life. Dr.Milhorat finally emerged with excellent news. All went perfectly. I was finally able to breathe again.

Mike's surgery was the following day. I'll write about the details of his story on another day. He and Grace shared the same ICU room. their beds were foot to foot.
As crazy as it must sound to have both surgeries done at the same time, it really wasn't. It made it easier on everyone (especially the kids). They supported one another and competed in who would get up first, eat first etc..
The hardest part of it was having one child in ICU while another was being rolled into the O.R.. I'm pretty sure that I aged 10 years on that day.

Grace healed well, but continued to have symptoms. She had headaches, foot drag, continued (almost nightly) incontinence, chronic tummy aches, dysautonomia, sweating and chronic nausea. 2 months post-op she had repeat MRIs. The good news was that her cerebellar tonsils ascended (a lot.. almost 6mm) but she was still blocked because she was originally herniated over 10mm- If you do the math, you'll see that 6mm wouldn't cut it, but it was a nice try. She needed decompression surgery.

We waited until the 6 month post-op mark to do the decompression surgery in hope that her tonsils would continue to ascend. No such luck.
On August 6th Grace had her decompression surgery. The summer leading up to it was awful. It was just weeks worth of torturous anxiety. I wish I didn't know it was coming for all that time. We told her a few days before the surgery at the advise of the wonderful people at Child Life at North Shore University hospital. She took the news well because she felt so awful. She was he bravest little girl I ever saw. The morning of her surgery (at 4:30 am) she woke up with a smile- no tears whatsoever.

Again, she was given Versed (did I mention how awesome that stuff is?). I walked her into the OR again, and thankfully she didn't have the same reaction to the anesthesia she did the last time. I was told the surgery would be 6-8 hours and that we wouldn't be getting any updates until it was over, which is why what happened next scared me to death.
I spent a good hour+ crying my eyes out. And when i say crying, I mean crying from my gut. i was so scared. I finally surrendered and took 2 Xanax that my PCP gave me for this ugly day. it helped and I finally calmed down. About 20 minutes later, i was sitting there and heard my family's name being discussed behind me. I turned around to see a nurse coming toward me with a grim look on her face. My heart almost stopped. She saw my fear and said that everything was okay, then took her hand out from behind her back. She handed me a gallon sized baggie FULL of Gracie's beautiful golden hair. I threw-up in my mouth. That threw me into another hour of tears and fears. The hours went by like days. Her surgery was 6 1/2 hours long but it felt like eternity.

Post-op-
She looked fantastic in PACU. It was amazing how good she looked. She was smiling and happy and had complete pain control. She was quickly moved to PICU where she spent the remainder of the day dozing off. She woke up the next morning and literally hopped out of bed. we were all amazed. She was 18 hours post-op and she was bouncing around like nothing happened. She ate a huge breakfast, took a walk... then reality set in.. The next for days were nothing like the first. She was grumpy, pukey and downright mean. I never saw her like that in her entire life.

She was discharged on day 5 and has recovered beautifully since.
She still suffers from dizziness, nighttime incontinence and nausea, but we're hoping that time will heal those pains.

Grace and Michael were each granted a wish through the Make-A-Wish Foundation. Now that the surgeries are finally over, she can set her sights on something fun.
Something tells me that she'll be looking to meet Cinderella :)