Tuesday, October 14, 2008


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


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-

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
Rapid heart rate
Loss of appetite
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


Beth said...

Now that is interesting. I've left you a comment before, but I'll refresh. My now 5 year old was diagnosed with chiari at 4 1/2. He had surgery on 8/1/08. I was SEVERELY anemic while pregnant with him to the point of requiring weekly IV iron treatments. I still battle with anemia today, also for unknown reasons. I have two other children, 1 has been tested and he does not have chiari. The other (20 year old) shows signs of chiari but hasn't been tested yet. I just find the similarities STRONG to say the least. I've dealt with my anemia for 20+ years and 3 children. There just has to be a link. I also strongly suspect I have chiari and have not yet been checked out (who has the time when you're dealing with a 5 year old and brain surgery)

Droopy Brains said...

Hi Beth!
All the dots connect if our family/primary docs would bother trying! I'm so sick and tired of dismissal by them. I will never let another doctor make me feel like an idiot again!! We deserve answers. We need to demand them for our kid's sake.

It is NOT NORMAL to be anemic!! Especially without knowing the cause!!

My 6 year old had her decompression surgery 5 days after yours did (on 8/6/08) The scariest day of my entire life. I don't want Grace to ever have to watch her child roll into the O.R.
If there are answers to this puzzle to be had- I WANT THEM - for our kids and for theirs.

Get yourself checked out, Beth.

lace1070 said...

Wow ~ what a connection! I am praying that some day soon they will develop a vaccine given to pregnant mothers that will eliminate chiari forever! hugs ~ Lace

Anonymous said...

Ok, this does sound familiar to our family as well! My Mom was very anemic (we just found out she has a tethered cord), I have ACM1, and I was anemic with my pregnancies, and both of my kids have ACM1 too. My Grandma, my Mom's Mom, was b12 deficient and they never could figure out a way to increase that for her. Though my Mom and I both took iron during our pregnancies, if I understand you correctly, it really might not have been absorbed when taken that way? There have to be more answers for all of this!!!

Just out of curiosity, do you or any of your children have food allergies? For both of my kids, right after their cm symptoms increased, they each developed a different food allergy. If only we could get the drs. to put all the pieces together!!

Droopy Brains said...

I've been doing more studying and this is what I've discovered-
As far as I can tell- Folic acid/folate (same thing) deficiency causes pernicious anemia, not the other way around.
Did I tell you guys that I flunked science along with math?? Whadya want? My brains were falling out!

Having said that however-
There *are* still several peer reviewed, published medical articles that suggest simple B12 deficiencies cause neural tube defects at 3x the rate than those without it.
Here are a few-



Susan S. said...

Sorry for being so tardy to the discussion, but I had a little trouble finding my brain.

Before I was diagnosed with Ehlers-Danlos and my entire body was going to sh-t and nobody could figure out what was going on (www.chronic-connections.blogspot.com for the story), I stumbled upon one very perceptive doctor who picked up on the vitamin B-12 thing with me, despite my not being anemic. He started me on weekly injections of B-12, high doses, along with folic acid to improve the absoption of the B-12, and my C-reactive peptide (measure of inflammation) went from an unheard of 9 (above 3 is dangerous) to below detectable levels.

He explained that some people have problems absorbing B-12 through their guts, and thus have to use injectable, which usually works better than sublingual but may have long term risks to the eyes. He also explained that, on top of the absorption problem, there may be an issue with transport mechanisms where the way that the B-12 is transported from the blood to the tissue may not be functioning correctly. In other words, even if your blood levels of B-12 are high, it may not reflect high enough levels in your tissues. That's why he saturated my system with weekly injections.

I do weekly injections myself of 1-2 mL, depending on my inflammation. I will use more during the week if I have a problem. I have gotten rid of migraines for my daughter by doing this for her, although I refrain from giving her too much because there is absolutely no medical literature on the long term effects of using high doses of vitamin B-12. While it is water soluable and should not build up in the system and cause a problem, the likely draw back would be with the substances used to manufacture the drug.

The sublingual form is much less likely to be toxic, but in my experience it does not work as well. It is my belief that the development of a safe form of cyanocobolamin would be a great step forward for us.

Jennifer said...

Your "Cooking with Chiari" description was the most spot on I have ever seen. I just stumbled on your blog today, and I have just spent way too long reading.

I am a mom of 2 (8 & 3, neither one with symptoms so far, but I watch them constantly and worry nonstop), with EDS/Chiari and all of the fun that comes with it. Decompression 6 years ago, headed back to TCI to consider fusion next month.

Anyway, just wated to say thanks for the read and I do hope that you and your children are all feeling good.