HEIDI EVANS, TCI, FAITH and AGENDAS

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

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?

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

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

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

...

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

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