Cristina Marie Story
We thought that because I just came on board for the website that it would be a good idea to share my story with you all so you will know more about me. This is my story I wrote about myself that was published on Spoonies For Life this past December. I have edited a bit to bring it up to date.
I became sick at 6 weeks old with a left ear infection that caused my eardrum to burst. At age 5, doctors attempted to fix the hole in my eardrum in an attempt to restore hearing by doing a skin graph. The surgery failed and they tried again at age 6 but I kept suffering from chronic middle ear infections. That skin graph failed also. I suffered for years with infections that began to spread to my mastoid bone. At age 9, I had a CT scan done and the infection had spread to my brain stem. They also found 2 choleseatomas. (Cysts). By the time I was 18, I had 7 choleseatomas and had 16 surgeries; 14 of them on my left ear including: a tympanoplasty and mastoidectomy.
Years went by with some more hospitalizations to treat infections. I complained all the time of headaches, ear aches and my jaw bones hurting. Finally at the age of 30 my ENT sent me to see a Neurosurgeon and I was diagnosed with chronic migraines, Occipital and Atypical Trigeminal Neuralgia. February 2, 2016 was 7 years ago that I received that diagnosis. Up until 8 months ago, I had been on every medication and combination of medications to try to control the excruciating often times debilitating pain. In 7 years, I had 2 good remissions. I now have all 3 branches, bilateral that are affected by the Trigeminal Neuralgia.
Due to the extensive nerve damage in my head suspected to be caused by the ear surgeries, I was told that I was not a candidate for MVD or Gamma Knife. I was evaluated 2 times each for these procedures. Last Spring, my neurosurgeon gave me 2 surgical options: nerve excision or a neurostimulator implant for my Occipital Neuralgia. There is nothing beyond meds. that can be done for my Trigeminal Neuralgia. My surgeon explained that he hoped by controlling the Occipital nerve that it would calm down the Trigeminal nerve. I chose to have the Neurostimulator implant. I had a trial implant within a month. I however didn't follow through with the permanent implant until this past October.
Due to other health issues, my battery pack for the implant had to be placed in my hip/butt area. I am only the second patient that my neurosurgeon has wired down the side of the spine to the battery pack. Surgery itself went great but it was a different story in the PACU (Post Anesthesia Care Unit). I have Asthma and two heart conditions as well. Although I had been cleared by all specialists for this surgery, I coded. They worked to stabilize me for 45 minutes. I kept going into tachycardia which caused me to stop breathing. They allowed my older sister in the room as she is a nurse. I remember her calling out to me to stay with them, to breathe. An experience that is embedded in me for life. Every time I recall it I get emotional. It was like I knew it was happening. I was watching it, fading in and out as if it wasn't really happening to me though. Then all of a sudden I would realize that it was and I would tell myself, "They are talking to you, breathe!" The experience has completely changed my life.
I am just over 8 months post-op and I am here. I am living, breathing and hoping everyday that I wake up that my implant will work. I am now of of several medications. Everyday I am thankful for the opportunity for my body to heal from all the damage that's been done; physically, mentally, emotionally and spiritually.
As it is said, "Life is not measured by the number of breaths you take but by the moments that take your breath away. " To date I have had a total of 22 surgeries 17 of them on my head. For over a year prior to surgery, I had been on 27 medications. Thanks to my neurosurgeon I now just take 7 prescriptions (a total of 10 pills a day) for my other medical issues.
Everyday I wake up with the hope that I can live the life I imagined. I have a second chance to get it right and not many people get that. ♡