Wednesday, June 11, 2008

Chiari, Not the Pottery that Grows!

<--This is not my MRI. It's borrowed from Chiari One.

I'm contemplating brain surgery.

I won't be the one doing the surgery, but I've already started to look for the right surgeon, ask people who've had the surgery done whether they would do it again, and start thinking about the ramifications of whether or not I agree to do it.

You see, one of the major things on my brain lately (heh) is the fact that I am not going to go to American University. Pretty much a miracle would have to happen for me to decide to go ahead and go there. How disappointed am I about this? Immensely. After all, this program is already advertising the authors who will be part of the visiting writers program this academic year. I got through what I thought was the hard part - admissions. But now, with the health issues, I know in my heart that I cannot make that drive twice a week (3 times some semesters) for 3 or more years. There's the drive then the walking around campus, then the drive home, then the homework. Plus my full-time job? Hmm. I'm not Superwoman anymore. I had that kind of energy in my 30s, but not now.

This isn't to discourage any 40- or 50-somethings out there from pursuing such a step. If you are well, you can do it. I'm not well. See that MRI up at the top? While it's not my MRI, it's similar. I have a malformation at the base of my brain called a Chiari Type I (CM1) malformation, named after Arnold Chiari, the doctor who first described it. They used to define this malformation as a descent of the cerebellar tonsils below the base of the skull, causing crowding in the spinal canal at levels C1/C2. Now they realize that the brains pushing out of the skull are a symptom of an "underdeveloped posterior cranial fossa and hindbrain crowding" (source: Chiari One). What this means in plain English is that for whatever reason that part of my brain and skull didn't develop properly. It can run in families, and I'm encouraging my brother to have a CM1 specialist look at his MRIs, since he has such similar problems as me. It takes a trained eye to see this, but if they begin to suspect it due to symptoms, at least they know to look for it.


  • Headache (esp. if daily or at lower back of head)
  • Painful tension in neck
  • Fatigue
  • Migraines
  • Dizziness
  • Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or "halos" / nystagmus
  • Tingling / numbness in the extremeties
  • General imbalance / clumsiness
  • Memory loss
  • Restricted movement
  • Intolerance to bright light / difficulty adjusting to light change
  • Vertigo from position change or sudden standing
  • Difficulty walking on uneven ground / feeling ground under feet
  • Poor / degraded motor skills
  • Difficulty driving
  • Difficulty negotiating steps
  • Pressure / pain in the neck
  • Pressure / pain behind the eyes (soreness in the eyeballs)
  • Back pain
  • Neck spasms
  • Insomnia
  • Ringing in ears (like the tone heard in a hearing test)
  • Swaying
  • Pain when changing position
  • Tingling / crawling feeling on scalp
  • Intolerance to loud / confusing sounds
  • Decreased sensation to touch in extremeties
  • Decreased sensitivity to temperature
  • Pain & tension along ear / eye / jawline
  • Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes
  • Drooling
  • Spontaneous vertigo
  • Hand tremors
  • Poor blood circulation / cold hands & feet
  • Sinus / mucous problems
  • Sleep apnea
  • Decreased muscle tone
  • Pressure in ears / ears feel stopped up
  • Nausea
  • Difficulty reading / focusing on text
  • Depth perception problems
  • Burning sensation in extremeties / shoulder blades
  • Menstrual problems / severe cramping during period
  • Fluid-like sound in ears (like water running)
  • Loss of sexual interest / lack of sensation in pelvic area
  • Pulling sensation while sitting / standing
  • Intense itchiness w/profuse sweating
  • Slurred speech
  • Gag reflex problems / lack of gag reflex
  • Pressure / tightness in chest
  • Loss of bladder control
  • Frequent urination
  • Dehydration / excessive thirst
  • Electric like burning sensations
  • Unequal pupil size
  • Loss of taste
  • Popping / cracking sounds in neck or upper back when stretching
  • Dizziness
  • Loss of smell / problems with sense of smell
  • Dry skin and lips
  • Sudden / abrupt changes in blood pressure due to awkward position of head
  • Hiccups associated with drinking carbonated beverages
  • Skin problems

Who's the Guy with the Can Opener?
There are only a few trustworthy neurosurgeons who routinely do these procedures. They are risky. They open up the back of your head, remove some bone, grind down the vertebrae (in some cases), put in muscle tissue taken from an animal to act as a new hammock, and sometimes burn away some of the descended tonsillar material. It hurts, from what I hear, but in most cases the relief comes quickly and lasts. I suppose the overcrowding isn't the only cause of the symptoms because most people still have some problems even after the procedure, but the constant, painful pressure in the back of the head is eased, the weakness in the limbs is much better, most patients tell me they got their lives back. I might even be able to stand airplane travel after the surgery, no longer getting the swollen, intense pressure-like feeling in the back of my head and neck during take-offs and landings. (People who have told me I just need to pop my ears have NO CLUE as to what this feels like. It leaves me blinded with pain and in tears).

So I'm considering brain surgery. I may go up to NY to see the doctors of the Chiari Institute for their opinion. I would really like to have my life back; maybe that's too much to ask?

And then...a miracle happened...
But God did answer a prayer of mine. When I realized that I couldn't do the drive to AU, I felt like a million doors were closing. I had been praying about it for at least a week, asking God to help me with this momentous decision, whether to try the drive or not. While reading an article on technical writing that night, I saw a Google Ad (yes, one of the little worthless ads that never earns any of us any money on our blogs) for an MFA/Creative Writing program that is 100% online through the University of British Columbia in Vancouver. I had been looking for such a program for Y E A R S. Literally years. Nothing existed. Now, true enough, there are low residency programs in which you have to travel to the college twice a year for a week or so each time. That would mean traveling (hard for me) and spending all my vacation on school for several years. Not exactly friendly. So imagine my reaction when I saw my prayers answered in black-and-white pixels. I wanted to put a sacrifice on the altar or something, but the answer that came back to me was "write, just write." My book is calling.

Now to get through brain surgery ... Hm, maybe I should finish the book first.

Peace - D


Josie said...

Omigosh! You poor thing! You know, I actually have heard of someone else who had that, and had surgery for it. I believe it was an actress/model, and I have forgotten her name. I'll see if I can find it. Good luck with it! My gosh!

And good luck with your studies at UBC. It's a fabulous university, and has a wonderful fine arts program. I almost did a post about UBC yesterday, for the "U" on ABC Wednesday. here is also a great Wikipedia entry about UBC. You will see we have had a few Nobel laureates from UBC.

I sent you an e-mail today, but it bounced back. :-(

Coal Miner's Granddaughter said...

Holy crap! I've seen this on the Discovery Health channel on their show "Mystery Diagnosis" and the young girl who had this was completely well after the surgery. I say go for it if it will make you well and whole.

And? Sooooo glad you found the writing program in Vancouver. Woo hoo!

Keep us posted, sweetie. Love you!

tysdaddy said...

That list of symptoms is staggering. I thought I'd never stop scrolling down down down. Here's hoping you don't suffer from even a smidgen of that list!

Sounds like the procedure works for many people. Here's wishing you peace regarding your decision.

And congrats on the schooling option. Here's hoping you write a masterpiece!


Momma said...

I am humbled by my wonderful friends, once more.

Josie - I sent you an email, so now you have my correct email addy. Maybe if I can ever have this surgery and get well, I'll fly up for a visit.

CMGD - So glad to see you hanging around blogland again! [{{hugs}}} I am going to try to find a surgeon to do this. I'm starting with the one who said he didn't think it was imperative for me to have it (a year ago). I'll go up to NY after that, if I need ot.

Tysdaddy - Unfortunately, I do have quite a few of those symptoms. QUITE a few. That's what makes me want to have the surgery. I need some relief, and I'd like to have my life back. Thanks for stopping by.

Peace - D

K.C. said...

Really and truly, miracles can be found anywhere at anytime. So glad that you probably found yours. So thankful that your eyes wondered over to that side of your computer. I actually got chill bumps when I read that.

Loved reading what you wrote on my comments about the whole Dave Ramsey thing. Really was very inspiring to me. Knowing that people really are doing it lets me know that so can we... KC

Momma said...

K.C. - I know about the challenges you face, and I'll keep you in my prayers. Thanks for stopping by to check in. I'm glad you liked the story. It really is amazing, yes?

Peace - D

lime said...

first of all, thanks for taking time to stop by my place and offer words of encouragement when you are trying to deal with all of this. it sounds like a terrible disruption of your life and a rather scary solution but i am so glad you've found a great educational alternative and i do pray that the medical decisions yo umake are beneficial to you.

lace1070 said...

I found your blog through a Chiari google alert I get each day. Praying for you as you grapple in your decision about surgery. I was diagnosed with Chiari in September of 2006 ~ I am a patient of the brilliant doc at the Chiari Institute. Check out my blog ~ ~
I have done lots of research and soul searching along the way. My side bar has all kind of helpful links, too. Please feel free to e-mail me if u have any questions or just want to talk with someone who understands what u r going through. Hugs ~ Lace

Not Afraid to Use It said...

I say go for it! Anything to help improve your health and quality of life, ya know? We are behind you 3000%.

Jennifer H said...

I've been away for a couple days and came back to that first sentence. Wow.

Like TysDaddy, I thought the list of symptoms wouldn't end. My heart goes out to you and I'm sending good thoughts as you make this decision.

Very good news about UBC. You should definitely grab that ring.

Lavinia Ladyslipper said...

All these symptoms...not good...oh dear....such decisions you have ahead of you...I'm glad you are doing a lot of research on this possible surgery.

Now as to the course, it sounds like it could be just the thing. I am getting the impression that your soul is really yearning, and crying out for this creative endeavour. YOu have a lot in you and it wants to come out....A book, who knows how many!