Keeping Up with Chiari – and Some Inspirational Thoughts ~ Ashley’s Health Diary, Entry #27 ~ by Ashley Boynes

February 9th, 2011

Exactly one week ago, I was in the hospital just a couple hours out of neurosurgery. I had brain surgery on February 2nd, and am doing seemingly well.

I haven’t posted a “health diary” entry in a while, and some of you were inquiring about it, so here it is! Just a little update.

For those who do not know, in November I was diagnosed with Chiari Malformation, which is a congenital abnormality in the cerebellar portion of the brain. What it boils down to is that my skull was too small and my brain was too big – basically, a herniation of the cerebellar tonsils of the brain. This was creating a lot of pressure and many neurological problems. I met with 5 different neurosurgeons who all agreed that I would likely benefit from the surgery. So, as scary as it was, I went ahead with it in hopes that it would help me in the long run!

The weeks leading up to it were anxiety-filled. Big time. And the first couple days were ROUGH! However, my friends and family who came to visit me, sent flowers, cards, and gifts, and were just “there” for me was amazing and helped me through it. I went in for surgery on a Wednesday and got discharged that Saturday. I have a “Frankenstein chic” scar on the back of my head and neck. It is about 5″ and there are about 20-some staples. Luckily, they didn’t shave anywhere near as much hair as I’d thought.

In case you’re curious what the procedure consisted of, they removed my 1st vertebrae completely (bye bye!) and cut into the dura, the first layer of the brain, in order to “decompress” it. They then patched the brain – and my head – back up!

Knock on wood, I’ve been doing seemingly well. I’ve even been able to skip a couple of doses of pain meds for the sheer reaason of not needing them – and that is practically unheard of with brain surgery. (I must say, I have a high pain threshhold from all the years of RA, etc.)  The first day I couldn’t sit up on my own, change positions, or move my head/neck at all. I’m not allowd to drive for a while. I’m still experiencing some puffiness/blotating/swelling as well. Day by day it’s gotten better and my neck is already back to its former range of motion! The biggest thing I’m facing is drowsiness and fatigue. The littlest tasks exhaust me and wear me out. Apparently, rest and sleep are key for healing, and so I’m trying to do a lot of that. It could take months for me to get back to (my version of) normal. I also get dizzy/lightheaded a bit, as well. My whole scalp itches and has odd sensations as the nerve endings regenerate and wake back up. My tailbone hurts from doing more sitting and laying than usual but compared to other symptoms that I could be experiencing!  There are a lot of pains and inconveniences but I am thrilled with how it went.

I am thankful that I made it through the surgery seemingly smoothly. My neurosurgeon said he didn’t want to jinx it, but that the surgery went perfectly! Of course, there were little things as I recouperated at the hospital – very high blood sugar and heart rate (tachycardia) as well as needing an emergency CT scan to look for blood clot. They also had to monitor my cortisol because of a history of secondary (steroid-induced) adrenal insufficiency. However, it’s all par for the course and I am looking forward to continual improvement day by day!  My parents, family, friends, and fiance have been taking great care of me and I am also thankful to have had such good doctors and nurses at the hospital!

Aside from the Chiari surgery, not much else is new. I recently underwent more allergy tests that showed I am allergic to peanut, garlic, wheat, molds, yeasts, dust mites, grasses, smoke and other environmental things. I also have a mild chemical sensitivity. My Rheumatoid Arthritis was OK until last week. I had to hold my meds for the brain surgery and so my right hand flared up so badly that it looked like Mickey Mouse’s glove! My back has been “icky” too. It seems as if lately my osteoarthritis (OA) has been more bothersome to me than my rheumatoid arthritis (RA) which is a plus, in a way. The more of these autoimmune things that I can get under control, the better!

So what else is new? Well, Im reading a great book that discusses why bad things happen to good people, why there is evil, pain, and suffering in the world.  I’m gaining some amazingly inspirational and thought-provoking insights from it. I’d like to share some key points with you all!

* Difficulty and pain will always be around. But you have control of your reactions through it all.

* We don’t always have to understand our suffering to cope with it.

* Never allow your own comfort to keep from giving to or helping others.

* EVERYONE knows what it’s like to suffer, in one way or another.

* What is meant for us is not always the easiest or the fairest, but in the story of our lives, it is for the best, even if we don’t know why.

* You CAN find meaning and purpose in your troubles.

* You are rarely ever going through anything alone.

* Everyone’s physical and emotional pain thresholds are different. Be sensitive – not critical – with someone who is more or less sensitive to pain than you are.

* You’ll never  get better if you ONLY pursue a life that is, “easier”

*  Character traits usually worth having are those you acquire at the cost of suffering or personal sacrifice

*  Aging is a GIFT.

*  The measure of a culture – or a friendship – is how it treats its weak or infirm.

* Value of life should never be measured by quality of life.

*  You have control over your actions and attitudes.

* The kind of person you are is a matter of your character, not your circumstances!

*  We’re more apt to learn from pain than pleasure.

*  Those who appreciate life the most are usually the ones who have experienced the most pain.

*  The challenge is to endure pain without being one to those around you.

*  Pain will reveal your inner strength or lack of it.

*  While your circumstances might not change, your perspective about them may.

* The human spirit can find good from tragedy.

*  The condition of the body has little or no relationship to the condition of its spirit.

*  If you focus too much on what ails you, your hurts will get the best of you.

* Even if you are suffering, don’t forget that others are , too.

Well, thanks for reading, and please feel free to share a comment on this post! Please feel free to check out our past entries, too!

Stay well,

Ashley Boynes

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7 thoughts on “Keeping Up with Chiari – and Some Inspirational Thoughts ~ Ashley’s Health Diary, Entry #27 ~ by Ashley Boynes

  1. SO glad to know the surgery went well, and you are beginning to feel better. I do hope this operation helps resolve some of your many ongoing problems. Stay strong!

    Barbara

  2. Wow Ashley, RA, Celiac and now a brain malformation. I sure hope this surgery is the answer to so many of your problems. You really are a strong, inspiring young woman. Praying for you to make a complete recovery!

    Sara McCay

  3. So amazed with how well you’re doing Miss Ashley!!!! You’ve been kicking butt since I saw you in the hospital! You’re such a strong lady & a constant inspiration to sooooo many….you make the world a better place! See you later today!!!! :-D xoxoxoxo

  4. Please add Rosanne Cash to ur celebrity list, she has Chiari Malformation too. How is ur recovery coming along? I was decompressed a year and a half ago, and am still not 100% yet. I find that diet plays a big part in my recovery; for example taking vitamins with anti oxidents, coconut oil, hemp hearts, turmeric spice, omega 3′s and I try to avoid most processed foods, I wish you all the best. Jennie.

  5. I’m a 47 yr old woman that feels about 75. I have chiari malformatio and have had 13 brain surgeries! I also developed hydrocephalus so I have a vp shunt as well! Almost died twice from staph. Can’t work cause I will be bed ridden for someyimes weeks cause I can’t lift my head off the pillow! I have what I call the chiari stagger I walk like I’m drunk. I run into walls constantly. I fall all the time cause I lose feeling in my legs and down I go. I do not get along with stairs I fall down them I fall up them! I can!t even count how many shower curtains I have ruuned by falling into the shower and Out. I can’t bend over or I land on my face! My short term memory is shot! There is no cure just some symptom relieve but then they all come back full force! So I’m begging you celebrities to please help the people like me and spread the word!!! We our lost and our Dr’s we have to exucate them!!! Its so tiring and painful!!!

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