Oct 15, 2020 Latest post:
9 minutes ago
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Many of you have heard by now, that I will be having brain surgery next month for my Chiari Malformation. It has been a long 16 months of pain, frustration, rough days, arguing with Dr's/insurance/ other Healthcare providers, being misdiagnosed, and being my own patient advocate. I finally received the proper diagnosis, with the best possible treatment for me, from an excellent Neurosurgeon at Barrow's Neurological Intitute in Phoenix. The official name of the surgery is a suboccipital craniectomy and cervical one laminectomy for Chiari Decompression.
So, let's talk about Posterior Fossa Decompression, the surgery for those with a Chiari Malformation. A posterior fossa decompression is a surgical procedure performed to remove bone at the back of the skull and spine. In my case, they will shave down my skull where the spine meets the brain. The dura, covering around the brain and overlying the tonsils, is opened and a patch is sewn in to expand the space. This is similar to letting out the waistband on a pair of pants. Additionally, in my case, a laminectomy (removes the back of a vertebrae) of C1 will also be performed. The goals of Surgery are to stop or control the progression of symptoms caused by tonsillar herniation, (not to be confused with tonsils in your throat), to relieve compression of the brainstem and spinal cord, and to restore the normal flow of cerebrospinal fluid (CSF). The surgery will take 2-3 hrs with a recovery including an ICU stay and 2-4 days on the the floor. Due to Covid, my goal and the goal of my Surgical team, is to get out of the hospital ASAP. I won't be discussing the possible things that could go wrong, because nobody would ever have surgery and in my case, it's not really an option to not have this surgery.
You might be asking, " how did I get this?" In my case, I was born with this. I am very blessed to have made it to my age without many severe symptoms except horrible headaches. Many times, this is caught much ealier from infants to people in their 40's. I happen to be a "senior" pt. Symptoms have increased even since this started in May 2019.
This surgery will be taking place at the World renowned Barrow's Neurological Intitute inside St Joe's Hospital (I like to know it as Hotel and Spa) on Nov 16th. Fortunately, I know several of my Dr's and nurses in the O.R, and recovery room. Unfortunately, visitors outside of my closest family are not allowed to visit and even those visits will be limited.
I wish for my closest family and friends to know, I don't discuss my health issues for pity, sympathy or attention. I talk about it because it is now a huge part of my life, whether I want it or not. I discuss it because as a nurse, I feel it is my responsibility to explain and educate others, not to be babied or fawned over.
Having said all that, research has proven that patients who go into surgery with a positive attitude and knowledge of what to expect, have better outcomes. I think I have that covered, however I will gladly accept prayers, funny stories, positive quotes, humorous pictures and well, you get the idea, leading up to my surgery date and after.
Myself and my 2 girls will be posting here and I will do my best to talk my nurses and Dr's into taking pictures while I'm in the hospital ( butts pucker when pictures are taken in the hospital setting.) My dear brother Tim from Texas, along with my 2 girls, will be staying with me to help me recover at home. Unfortunately, I probably will not be seeing visitors at home, again due to Covid, because I have to be extremely careful of exposure. I want all my family and friends to know, I value, respect, and love you all exponentially! We will get through this journey together.