CHIARI INSTITUTE & RONALD MCDONALD HOUSE

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/

EXPERT BACKS TCI, MILHORAT & BOLOGNESE

"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

PUZZLE PIECES

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

SOME PORK FOR ME

We need Federal Grant money to supplement the generous private donations to ASAP.org.

In 2008, our Congress authorized $17.2 billion in Federal Grant appropriations. It’s time they share the pork with the zipper heads.

Please contact me if you're willing to help me lobby. I have no experience, but I'm willing to learn.

We need research!!!!!!!!!!!! Last week!

MY 3 BEAUTIFUL CHILDREN

I had 3 children during my pre-diagnosis days.
My youngest (Grace) was 4 when I had my surgery. Upon my diagnosis, I became very concerned about whether Chiari is genetic. I was told that there is only a very small percentage of familial incidence; less than 12%, with a then 50% chance of that gene ever becoming functional. I was told that there was no need to test my children unless they showed very obvious signs of ACM.

They were wrong. I should have had them tested sooner. All 3 of my children have varying degrees of Arnold Chiari Malformation, Syringomyelia, retroflexed odontoid, basilar invagination, Spina Bifida Oocculta and Ehlers Danlos Syndrome.

I will tell each of their stories during the next week.

Too little is understood about the genetics behind these conditions. The 8-12% familial incident rate needs to be looked at more closely. I would bet my titanium cranial plate that this number is hugely underestimated. While I know 8-12% is the actual percentage found among patient populations, I challenge how hard they’re actually looking at their patient’s families. All too often I hear symptomatic patients referred to as having “incidental asymptomatic Chiari” simply because doctors don’t understand the wide array of symptoms associated with Chiari.