Yesterday was the day I have waited for for 10 months.
I know that this does not look like the yellow brick road, but it is.
My daughter and I drove 4 hours to get there, and by some stroke of luck, we were early.
So we decided to have brunch, suspecting that my appointment would not allow any time for lunch.
The diner we ate in was more than awesome. I wish it were closer to where I live.
She had this incredible bruschetta omelette, and I had a Greek omelette with spinach and feta cheese.
So far, the day was a success.
My daughter observed, that as well as the day had been going so far, maybe the doctor would just "crack" my neck, and I would be fixed.
If only.
And here we are.
At last.
I was about to have what I thought I knew thrown right out the window.
I thought that Chiari was something I was born with.
It's not.
It always has a cause. Mine was smashing my head on a rock last August.
I thought that Chiari surgery was about as bad as it could get.
I was wrong.
It seems that when I fell, I did more damage than I realized at the time. For the first time in this crazy search for a 'reason' for this headache, I had an answer.
For the first time, in 10 months of never ending pain, I heard the words I had been waiting for.
"I know why you have a headache."
Yes, in case you are wondering. I cried. Spontaneous tears, and a weight lifted.
Easily visible, when pointed out on my MRI, was the reason for my Chiari, which is in all reality a herniation of the brain.
Basilar invagination occurs when the top of the C2 vertebrae migrates upward. It can cause the opening in the skull where the spinal cord passes through to the brain (the foramen magnum) to narrow. It also may press on the lower brainstem.
The top of my spine is not straight, like it should be, but it is bent backward, and pressing into my brain stem, which is in turn pressing on the rest of my brain, and causing it to 'herniate' down into my spinal canal........thus the Chiari.
Basilar invagination can be present at birth. If the condition develops after birth, it is usually the result of injury or diseases. If due to injury, about half the time it is caused by vehicle or bicycle accidents; 25% of the time by falls and 10% of the time by recreational activities such as diving accidents.
So now a whirlwind of getting ready.
I am scheduled to have a decompression surgery on the back of my head, and two rods and four screws to fuse and keep my cervical spine from impinging on my brain stem, the way it is now.
I am emotionally drained, partially terrified, incredibly relieved.
New word: terri-lieved. That's me.
I know this will be hard. I know that it's a big decision.
But here it is......the choice.............painful surgery with the promise of a normal life at the end of the recovery, OR the headache from HELL for the rest of my life. Cause unless they fix it, it ain't going anywhere.
It's not a hard choice. It's a scary one, but not hard.
I am also incredibly grateful, for the path that led me to the right doctor, the right place, and perhaps, an end to this nightmare.
I will probably say this again, but thanks to all of you for your continuing love and support through all this......there's a chance, soon, that you may not hear me talking about a headache.
Now, THAT'S NEWS.
It will be happening next week. It can't be soon enough. I will keep you posted.
But just remember this........NOW in the future, if you say that I may have a screw loose, YOU may be right.
Just sayin'.
49 comments:
Oh my God, Hilary you are a funny lady. Such wit. You know I am relieved for you and will be with you, at least in my thoughts, all the way. If I lived closer I'd be bringing you daisies. Keep us posted dear Hilary. Sending hugs, Deb
Thanks for filling us in. I'm glad we could write back and forth last night about this, and know that you will be in my thoughts. You are doing the right thing - this IS the correct decision, my friend.
I'm so glad you have an answer. And medical professionals who specialize, who know what to do. And an appointment quickly.
This will go perfectly. Your family and friends will step in and support you, doing more than just what needs to be done. You will recover smoothly.
Then you will be well!
My thoughts and prayers are with you all the way to recovery and back to good health. We'll wait on the screws loose comments, though very witty you are.
Donna.
What a relief for you to finally have a diagnosis and to know there is relief in sight, and quickly. Sending wishes that things go smoothly and you are quickly back to weaving and loving on your cats.
Hillary,
Many prayers have been answered for you to be healed and happy at doing what you are most happy at doing, even if it means that you move to your place of peace, in Maine. As long as you don't hurt anymore. Your wit and consideration of all around you, even while you traveled along this path of discovery, is proof of the strength that you will have in your recovery. You already have the love and support of your many friends, including those who might not comment. Feel the hugs and the love surrounding you!
Hilary
So happy that you have finally found the answer and the relief is in sight. Keep your head and your hopes up and when you can, keep us posted.
God speed.
Oh Hilary, thank God you are in the right place...FINALLY!!! I will keep you in my thoughts! My thanks, too, for keeping us posted. xo
Great news!!! Does the dr know that, if you are expected to take it easy after the surgery, he will have to send you home in a straightjacket for which he keeps the key?! :)
Wow, Hilary--I am excited for you because you have finally gotten the answer you needed, gotten to the place where you can get help for HH. I know it is more than challenging to be facing this surgery, but we are all standing by, and we are excited for you because there is an end in sight. We KNOW you will come through the surgery with flying colors . . . 'cause you're just that sort of person. Our thoughts and prayers are with you all the way. Becky
Yeah!! Answers finally!! Best wishes - all will go very well and soon you will be feeling so much better. Keep smiling, we'll all be right here waiting to hear how you are.
Lee Anna
I wish you serenity and peaceful thoughts. Soon you will be on the healing side of this:-)
An actual sigh came out of me! I am so relieved that you will soon be relieved! OMG! I am happy, happy, happy for you!
I'm so glad for you that I could cry too!
You've gone so long in intense pain that I'm betting that it won't be any time at all before you see the benefits of the surgery.
Remember your cheering section is only a click away!
My heart will be with you next week - the best to you....
Hallelujah!! Praying for a successful healing and recovery.
Maine is waiting for you!!
Yay! An answer at last! We will all be here every step of the way. Keeping you in our thoughts and prayers. If we could I know all of your readers would want to give you a hug!
Love you my dear friend and am happy you are going ahead with the surgery. No regrets. Just charge forward and gitter done. Xox
I'm relieved that you are on the right path to getting this fixed. Now that you have answers things will move right along. I'm glad you are scheduled so quickly. This will soon be behind you.
Hugs and best wishes for a speedy recovery.
Lesley
I have 2 suggestions. . .
get good pain pills
find out where they keep the ice cream
Hugs of Aloha
I 'met' you about 6 months before you fell through your blog and have been waiting with you for the day your headache leaves and never returns. I'll be praying that day is very, very near. I live in beautiful N.C., which has always been my home, but I have loved the photos of your part of the world. Maybe some day I'll get up there ... Best wishes on what's to come.
Next week cannot come soon enough. I am here hoping and praying for all to be well. And something has guided you to the right place, at the right time. Peace and blessings...
My prayers are with you. Best wishes for a speedily recovery. Hugs!
Kaaren in California
All the very best to you. My best healing wishes are yours.
I have been reading your blog for a long time and wondered about your incessant headache. Oh how wonderful to have a diagnosis and good prognosis! I'll be praying for you.
That's incredible news! I wish you the best of luck and a speedy recovery.
m.
Know that there will be prayers flying all over the place for you and a successful surgery! I am thrilled for you that the end is in sight and the Headache will finally be gone. Hang in there. recovery from surgery will be hard but soon your "new life" will begin. Keep that wonderful sense of humor.
Hugs
Rose
I love the tone of this post. I can hear the relief and hope in every word. Giving this a name and a cause is the beginning of the end. We will follow along with you, listening, supporting, and rejoicing.
You will continue to be in my prayers.
Screw loose (snicker, snicker)...you GOTTA do it! ;-)
You are in my thoughts and prayers daily. I am so glad now you have an answer. Keep strong and keep your sense of humor. You will get through this and come out the better in the end even if you do have a screw loose!
Louise
Happy dance!
So happy and so relieved for you. You will be throwing that shuttle in no time.
But oh, for heavens sake, allow yourself to recover. (this is your mother talking)
I was talking to my husband last night at said..."my friend....." and then I thought well, I have never met her in person. Well, I met her over the internet. She is a fellow blogger. yes, she is my friend. she may not know it but she is my friend.
So, my friend I am very happy for you that you have answers.
Positive thoughts and good wishes for a safe surgery and speedy and good recovery! We knew you'd get to the bottom of it, as scary as that is, it's the answer and that's what you wanted.
(((HUGS)))
Martha
Just know that I am with you in spirit. All will be well. So fortunate that you are as close as you are to the specialists.
God bless you and keep you. Our prayers will surround you daily.
Vicki Allen, weaver
Terri-lieved. Absolutely!
So glad you have a plan now. And that HH clearly has not taken away your sense of humor. I think that humor will stand you in good stead as you go through this next bit of the journey.
I will be keeping you in my thoughts and prayers, and am looking forward to the day when all of this is just a memory. Well, except for some of the lessons you've learned about slowing down. You can hold on to those!
You know I'm with you in spirit.
I hope someone.. one of your lovely daughters, perhaps.. will keep us posted on the 28th. Maybe?
Hugs to you, dear friend.
I'm so happy to hear that you finally have the answer and solution is just around the corner. Next week can't get here soon enough!
Sending you good thoughts and prayers for a speedy recovery. I'm sure that Roy and the kitties will take good care of you as you recover.
I'm so happy to hear that you finally have the answer and solution is just around the corner. Next week can't get here soon enough!
Sending you good thoughts and prayers for a speedy recovery. I'm sure that Roy and the kitties will take good care of you as you recover.
That is wonderful news. Good luck.
Echoing what everyone else has said. I'm glad there is a solution and you will soon be free of HH. Please do have someone update for us. I'll be keeping you in my thoughts.
What a releif to KNOW. And have someone validate what you are experiencing. Surgery is scary but there are good drugs on the other side :). And hopfully relief to come. You will be in my prayers and thoughts, hugs too.
It's it nice to have an answer? Living with terrible pain ,and not having a clue what's going on, is not fun.
Only slightly related. I found out after months of struggling that my horse is diabetic. That poor animal suffered while I stumbled around in the dark. I kept depending on the local vets to know what was going on and they didn't have a clue.
Once I got ahold of a specialist and got him diagnosed the horse was back on his feet in just a couple of days. Such a relief to know what was going on. I can deal with it if I know what it is.
Hi Hilary, I've only been following you for a few months, but I busted out crying in relief for you. I'm so glad that you're nearing the end of this pain you've been enduring. Sending lots of good, strong energy from Atlanta. Love, Donna
THis is awesome... an answer.. and life, as you KNEW it.. once again.. only even better. and I'm laughing out loud, you know we already knew you had a screw or two.. loose :-) Sending love and healing thoughts your way.. you know your cheer squad will be right here waiting for your return.
LOVE.
Hilary - I am keeping you in my prayers for a successful surgery and speedy recovery! All our thoughts are with you. HUGS!
Such a relief when you get a definite why...an answer. You're in my thoughts and prayers. :)
HILARY! You're my hero. You're one of the first people who made me feel special, writing my stupid blog. I CANNOT WAIT to read the first words you write when you are HEADACHE FREE.
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