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.

4 comments:

Patti said...

Hello Lacie~

I am with you in supporting your surgeons! I agree there was some horrible screw up in scheduling, or major miscommunication! Things happen. It is ridiculous to think these surgeons did something like this on purpose, that's just crazy!!!

I feel very bad for the patient that is in the middle of this. Had this happened to me and my family, yea it would have involved some serious emotions. But believing in my surgeon enough to perform brain surgery on me, I would have certainly stood up for him. I trust my surgeon would have come to me with an explaination.

Okay, my turn to ramble, hope you get my point :)!?

Hang in there!
Patti

By His Grace said...

HI Lacie! I vote right along with you, as you know! My surgery was cancelled (fusion surgery) with these doctors because of this suspension...my surgery now has been scheduled for June 4 and I am moving forward with confidence in these doctors 100%. If they couldn't do my surgery, then I wouldn't let anyone else in the world do it, and I've been waiting five years for this and am seriously unstable at the craniocervical junction!

Good for you and your post in support of TCI. They deserve it. We all remember the first time we walked in Dr. B's office and for the first time, someone offered us HOPE.

I thank God for TCI and Drs B and M!!

love and hugs to you
Virginia

Hannah said...

I 100% agree with you. My post on my caringbridge was actually very simular. It's honestly just sad that the media is making them sound like monsters when really they have both done such wonderful things for so many patients.

I haven't talked to you since before my surgery back in January. How are you doing?

thepaceofnature said...

Lacie,

I admire your faith and strength, and your determination to shed clarity to this rather premature denigration of two otherwise excellent surgeons. I hope the truth comes out as well, and I hope that 95% turns into 100% one day soon. Keep up the great work. I've enjoyed reading your blog. ~ESV