Thursday, May 28, 2009

What A Package Deal: Faith, Hope, Wisdom and Courage ~

A month ago, I had a bucket full of iris bulbs in my garage that have traveled all the way from Texas to New York. The story behind the traveling bulbs is that they were originally dug up out of the ground at a family property in the Texas Hill Country back in the early 1970s. Since then they have been planted ~ dug up ~ stored ~ transplanted ~ and so the cycle repeats over and over again with each move. So here we are in 2009 and I just put the bulbs in the ground. They have been sitting in our garage for almost THREE years ~ since we moved I just haven't gotten around to transplanting them ~ and finally I can check them off my list.

I always thought that the spring time wasn't the greatest time to put bulbs in the ground, but I knew if I waited much longer, I would blink and another year would have flown by. I also was not expecting any blooms this year as I thought the blooms had to sit in the ground a year before producing blooms ~ guess I was wrong! You can imagine my surprise when I noticed just the other day that we have a couple of deep purple blooms peeking out ~ just waiting to burst forth with breathtaking blooms.

Since nature always seems to be speaking to me I looked up the meaning of the Iris flower and was reassured that certainly their symbolism speaks louder than words. The iris is associated with faith, hope, wisdom and courage. I'll take two helpings of that!

Thursday, May 14, 2009

There's Some Good In this World Worth Fighting For

Yesterday there was a public announcement that Dr. Bolognese ~ neurosurgeon extraordinaire has been reinstated to resume business as usual again ~ This is great news for the Chiari community. I have seen every spectrum of emotions just flooding out of bloggers across the community ~ anger, rage, fear, hopeless, dread, panic ~ I can't tell you how many of you I have talked down from the bridge ~ urging you to keep the faith in TCI ~ lean on the facts and not the feelings. Dr. B is a groundbreaking, incredible doctor ~ those are the facts ~ he has restored my health to 90% and I am forever grateful :)

Something I have learned as a brain surgery survivor and as a chiarian is that when all hope fades and all you can see is darkness enveloping you, this is when faith steps in and shines a light in those dark places. I think we all can stop holding out breaths and breathe a deep sigh of relief. I had my post op f/u appointment today at TCI ~ I have news. but more on that in another post. Just a reminder that no matter what life continues to throw me, there's always something good in this world worth fighting for ~ looking for more brighter days.

Frodo: I can't do this, Sam.

Sam: I know. It's all wrong. By rights we shouldn't even be here. But we are. It's like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn't want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it's only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn't. They kept going. Because they were holding on to something.

Frodo: What are we holding onto, Sam?

Sam: That there's some good in this world, Mr. Frodo... and it's worth fighting for.

Leeland-Brighter Days Lyrics

Time keeps moving on
Through the sunshine and the storm
And my dreams are set in stone
And someday I’ll be who I want to be
For now I’ll wait
For the sun to shine again
And for now I’ll wait
For the rain to pass away

And I’m looking for the brighter days
When all my hurts seem to fade away
I’m looking for the brighter days to come my way

Faces come and faces go
But none seem to look my way
And walls have stood and walls have fallen
But my heart seems to wait
For now I’ll sit at the end of the road
And for now I’ll wait
At the end of the pathway

I’ll see the sun one day shine upon me
I’ll see the sun one day
And watch the night time turn to morning
But for now it all comes back around

Wednesday, May 6, 2009

Brain Tail Whisperer

I was so sad and sick to my stomach today as the scathing accusations ripped the headlines. I won't dignify the press here, you can find the articles on the Internet ~ but I feel as a loyal patient of Dr. B and Dr. M, I must say something.

The facts are that my incredible neurosurgeons (Brain Tail Whisperers) were recently suspended for two weeks due to a scheduling mishap with the hospital. I am still hoping that the real story will eventually come out, but my brain tail tells me that there was a family emergency and the powers that be didn't get the message to cancel a surgery. Let's face it ~ communication breakdowns happen ~ it's part of life. Recently there was a HUGE miscommunication that resulted in panic in NYC when Air Force One flew over Manhattan for a photo op and forgot to tell the Mayor of NY! It's unfortunate that this happened, but seriously, I have been a patient at North Shore Hospital three times and it's a zoo over there. My docs perform two surgeries a day ~ five days a week. I know they are way over worked and must be completely exhausted! The bright side of this is that they got a well deserved vacation!
I seriously doubt that any of the reporters or the lawyer who is filing lawsuits has ever met Dr. B in person. My Chiari journey has involved 4 local neurosurgeons. Two of which I adore and they referred me to TCI as I was a complicated case and way out of their league. The other two told me to my face that the good docs at TCI were making diagnosis up! When it comes down to it, I have leaned on faith and what my heart has told me where I should be treated.

When I had my initial consult at TCI in May of 2007 a surgery plan was proposed that involved a spinal detethering followed by a posterior fossa decompression and fusion. I was told by Dr. B that the decompression surgery was brutal and would be a long and painful recovery. He said that when surgery looked better than living with my symptoms, then I would know when to have the procedure done.
On 2/1/08 I had my spinal detethering surgery ~ remember this was only diagnosed by TCI. They had explained that my spinal cord was tethered and responsible for causing my chiari malformation. The constant downward pulling of my brainstem had caused all kinds of horrible side effects. I was willing to believe in the unseen and put my faith in my surgeons. When I came to after my detethering Dr. M stopped by the recovery room ~ held my hand ~ looked me in the eye and told me that I was incredibly tethered. He wanted me to cancel my brain surgery that was scheduled for the next month as he was certain that the detethering would reduce my brain herniation.
After the detethering, my symptoms were greatly improved, no more gait problems, my constant nausea was gone ~ but truth be known, my brain tail measured at 17mm ~ it was going to take an act of God to make me feel up to 100% again. I scheduled my decompression for 12/3/08 as it seemed evident that my brain definitely needed more room. I wasn't disappointed that the detethering didn't 'fix' me ~ I understood the complexity of my case. I couldn't continue to live with the constant swirling vertigo, brain fog, trouble swallowing, trouble breathing. I know that my docs at TCI are not super heroes ~ although they come pretty close in my book. The day before my decompression I found out that between Feb and Dec 2008 my brain tail had shrunk from 17mm to 10mm due to my detethering! The surgery absolutely improved my condition.
I know I have rambled on, but I am almost finished ~ So I had my brain tail decompression done on 12/3/08 and I am so thankful that I was decompressed. Sure, I have Chiari pressure headaches on a rainy day, but compared to how I felt prior to surgery I would say I am close to 95% now! TCI takes patients who have no where to turn ~ patients turned away from other surgeons who claim they need to be locked in a padded room as all their symptoms can't possibly be related to Chiari! Their bedside manner is incredible ~ how many neurosurgeons do you know that will hold your hand, look you in the eye and put your fears to rest?
I could go on for another hour, but the point I am trying to make is ~ please don't lose faith in TCI. Please don't be quick to judge before all the facts are in. These are good, hard working, caring surgeons who have saved thousands of people! They need our support now more than ever. This too will pass ~ take the higher road with me ~ I still believe.