11.10.2011

"It's NOT a tumor"...

Remember that line from "Kindergarten Cop"? After all these years, I'm still quoting it. I smile a little, every time I say that quote in my mind - complete with Arnold Swartzenager's accent; I think it's funny that now it really does make me feel a little better.

So, no, it's not a tumor, and that's a good thing. It is, however, something. It's a Chiari 1 Malformation. (Chiari malformation (kee-AHR-ee mal-for-MAY-shun) is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small, pressing on your brain and forcing it downward. Chiari malformation is uncommon, but improved imaging tests have led to more frequent diagnoses. Read more about it here or here )

I've had symptoms on and off since I was in Jr. High. And in 2005 I had an MRI that diagnosed me with a Chiari Malformation. The symptoms (headache, numbness and tingling in the extremities, muscle weakness, dizziness, light headedness, blurred vision, ringing in the ears) didn't seem to interfere too much with my life and they seemed to come and go with puberty, pregnancies, and breastfeeding, leading me to believe it was something that just "acted up" with my hormones.

In 2005, before I was diagnosed with this I thought I had Multiple Sclorosis - the symptoms of Chiari mimic the symptoms of MS. When my doctor called me at home to tell me my MRI results all I could focus on was that I didn't have MS. The fact I had a Chiari Malformation seemed to be no big deal. It wasn't causing symptoms, except with my babies, so I pretty much forgot I had it. In fact I even forgot the name of what it was.

This past year, though, I've noticed the symptoms returning. I'm not pregnant or breastfeeding so I began to worry a little as the dizziness and leg weakness began to affect me more and more. I've head chronic headaches forever, it seems. I was used to dealing with that. The leg weakness worried me, though. I continued to ignore it until about August. That's when I can pinpoint my headaches becoming bad enough to interfere with my life. After a month or so I saw a chiropractor. He did help some with my muscle tension but the other symptoms have continued to get worse and worse.

When I went to the Urgent Care for my headache the doctor said nothing seemed to be making sense, as to why my head would hurt so bad. He sent me in for an MRI. The MRI showed that the Chiari Malformation is definitely still there and more of my brain (the cerbral tonsils, actually) has descended into my spinal cord.

The only cure is to have surgery, making my skull bigger and cauterizing the brain so that my brain is back in my skull and there is nothing putting pressure on my nerves and arteries within my spinal cord. It's a very complicated, risky surgery. If all goes perfectly my recovery will be between 6 weeks and 6 months with most patients not feeling "100%" for up to a year. It's not something I want to do.

I've seen two doctors and plan on seeing at least one more - maybe two - to discuss the benefits of surgery. I'd rather live with chronic pain than be in a wheelchair...or worse. Only problem is that this condition can continue to get worse and I'd eventually end up in a wheelchair anyway. It's a very slow progressing condition (eventually leading to paralysis and/or hydrocephalus (water on the brain) and/or a cyst on the spinal fluid causing a backup of cerebral spinal fluid), so it's not something I have to fix immediately, unless my symptoms get worse.

I seem to be right on the line of "needing surgery" and "managing symptoms". The headache, I'm used to. It's intensity rises and falls but it's always there. I've learned to accept it and live with it. The shakiness and weakness, though scares me. There are times I'm worried about driving. There's been times that it's hard for me to hold my spoon. Even now as I type, I feel unsure that my fingers are doing what I want them to do. It's a strange, unsettling feeling, almost as if I'm shaking from the inside out.

I've been putting off seeing a surgeon because, well, surgeons cut. I didn't want to be told I need surgery just because that's what a surgeon does. It seems, though that a neurosurgeon is who I need to talk to. Chiari Malformation is a condition that isn't widely understood. There is not a lot of research on it. Because of this, I've had many different opinions from doctors as to what to do. In fact, once, before I was diagnosed, I went to a doctor and said my feet were going numb; he told me to change my shoes and socks more often! Seriously.

According to what Cameron and I have gathered from our doctors, talking to other "chiari patients" and other research, some patients symptoms can subside on their own, while other patients' symptoms continue to increase until they eventually become paralyzed (due to nerve damage). That could happen when I'm 50 or next year, or not at all. I'm hoping a surgeon will help me determine my prognosis a little more clearly.

For now my game plan is to get an appointment with a surgeon specializing in Chiari. There's one in Denver. Also, the University of Utah Hospital does these surgeries about once a week. I'm trying to decide where to go. In the meantime I am praying and using my best "mind over matter" skills to ignore these symptoms and make them go away.

My gut feeling is that I will need surgery. I'm hoping to put it off, though, until the time is right. I will need lots of help with my recovery. It's not going to be easy. But, I try not to think about it. Maybe I won't need it. Maybe it can wait until my kids are older. I hate not knowing.

One thing is certain though. This isn't a death sentence, by any means. The nerve damage can eventually cause death but that is years off. I feel blessed that I can take my time to research my options and choose a time for surgery that is most convenient for my family - my kids and my awesome parents and grandparents and parents-in-law - they will have to take care of me and my kids during the recovery time. I am blessed to have people around me to help me. It is a blessing to know they will take care of things when I can't. It's also, oh so, humbling.

I am learning much. I am appreciating my ups and downs in life. I am appreciating my children. I am appreciating my life so much more than a few weeks ago. This is a scary time for me. But, I am learning much (I know I already said that. I just don't know what else to say, I guess. If there is a reason for everything, I am determined to figure out the reason for this...) And I really am grateful that "it's not a tumor!"

Oh yeah, I just gotta mention, because I know I've come across like a flighty, crazy lady, lately: I'm not sure if it's because of the headache pain or a disturbance in the flow of the cerebral fluid but I've been doing and saying crazy things lately - I wrote 2007 on a paper today at a meeting and Landon's teacher had to correct me. I say dumb things. I've always been a little scattered but lately it's ridiculous. So when I forget your name or I seem to be "less smart" than I used to be, forgive me, okay? It's just because part of my brain is in my neck!

10 comments:

Life at The Hadenfeldt's said...

Kendra, my best friend has recently been diagnosed with the same thing. Her headaches are awful and the Dr. keeps putting her on meds and upping her meds to try to help but, it's getting worse. I hope that you get something figured out that's less risky than the surgery. Will you please keep us posted. If you don't mind I would like to share this post with her. You can email me at jamanda81@hotmail.com to let me know. Thanks, Amanda Hadenfeldt

Nancy K said...

OH.MY.GOODNESS.

I wish I had your phone number to call you and tell you how much I love you. Seriously, I have always been impressed with you and am grateful we are friends.

Aren't our bodies amazing and crazy all at the same time?

Colleen said...

KENDRA!!!!! I feel so stunned reading this. I feel such relief that it's not a tumor and that you have some time to decide what is next. But in the face of this serious condition you are amazing and your outlook is so positive and hopeful! You are incredible! I am sure this is a scary time, and from what I am reading you are so very brave. ANYTHING I can do to help you...I know I am miles and miles away, but I am here for you. If you guys need somewhere to stay if you come out to Denver for the hospital here, our home is yours to share! I love you, my dear friend, and will keep you in my prayers. And I love that A.S. quote too. We say it often around here!

Jessie said...

WHAT THE JUNK?????

Oh how I love you and wish that I didnt have to read what I just read!

You are so wonderful... Such a great person and you do not deserve this!

I am praying for you... Like CRAZY!
I love you my friend!!!!
Jess

Becky said...

um...tears.

I am so sorry Kendra. It seems to me that some people tend to get a lot more crap to deal with than others. But also, those people seem to be so strong and amazing. My prayers will be with you as you make your decision on what to do. I can't do much from here, but just know what I am here for you always.
Take care!

Andrea said...

Oh, Kendra! I want to give you a hug right now. I am so sorry you are dealing with this, and will be praying for you to find clarity about what path to take for treatment.

We have an extra room here at our house, and several extra air bedson top of that- if you decide to come to the doctor in Denver, they are open to you and your kids as long as you might need them for. I am totally serious- just say the word.

Kerri said...

Girl...and here you are talking about wanting another one. You amaze me! Wish we were living next door so we could bring you dinner and have the boys and little ella over to play. Love that your faith in God shines through your tough times always. Praying for you and your sweet family...Tell Cam to call Dan any time (although it might not help :))
Love you.
Kerri

shauntelle said...

You are so amazing, you can do this thing! We can do this thing! We love you guys! Can you get transferred closer to home so we can help more?

p.s. we're all a little stupid and crazy sometimes, some of us just don't have a good excuse :)

Jessi said...

I am praying for you Kendra.

[BrookeO] said...

Love to you, my friend.
I'm sure everyone is offering their help/advice....we do know a few neurosurgeons (if that could help at all). One a really good friend, and one who worked on my baby girl.
Thankful for you & your strength.