Here’s brief score card from the past 3 years. It includes the surgeries, the medications I’ve been on and how they affected me, along with the various things I am doing to rehab.
If you are in a similar situation hopefully this helps to give you an idea of some of the things you may encounter or have to deal with.
January 23, 2017 – Surgery #1 – Brain – Craniotomy and posterior fossa tumor resection (Cerebellum)
February 2, 2017 – Surgery #2 – Brain – External Ventricular Drain (EVD)
February 14 2017 – Surgery #3 – Brain – Endoscopic Third Ventriculostomy (ETV), catheterization of cerebral aqueduct
March 3, 2017 – Surgery #4 – Kidney stone removal and stent
March 4, 2017 – Surgery #5 – Brain – EVD and redo of ETV
March 16, 2017 – Surgery #6 – Brain – Replace EVD
March 20, 2017 – Surgery #7 – Brain – Ventriculoperitoneal (VP) Shunt Placement
April 14, 2017 – Surgery #8 – Kidney – 4 hour stent removal and insertion of catheter
May 1, 2017 – Surgery #9 – Kidney – removal of stent, urinary catheter and PIC line
May 31, 2017 – Surgery #10 – Brain – Gamma Knife – radiation treatment of residual tumor
October 9, 2017 – Surgery #11 – Brain – ICP monitor insertion
November 27, 2017 – Surgery #12 – Eye – Strabismus – alignment of right eye
January 22, 2018 – Surgery #13 – Brain – Craniotomy – cyst fenestration (removal of part of the cyst wall so it can drain) and scar tissue removal
March 12, 2018 – Medically cleared with no restrictions!
Since March I have been pretty healthy. I have been training for football and Rugby along with riding my mountain bike. My regimine includes agility work outs, boxing, PT, acupuncture, a clean diet, and supplements from my Eastern Medicine Dr.
December 4, 2019 – First Facial Nerve Reconstruction – Dr. Babak Azizzadeh pulled a nerve from my lower leg and a nerve from my neck to harvest from the left side of my face to the right side. The two goals are to create symmetry between the left and right side of my face (right sags a bit), and eventually connect the left side nerves so they control the right side of my face so I have a full smile and facial expressions again. Part two surgery will be in December of 2020 to connect the nerves.
Morphin- pain – nausea and vomiting instantly, allergic reaction and splotchy torso
Dillauded – pain – best for pain, but caused hallucinations and made me delusional
Fentnol – pain – made me drowsy, cranky, and didn’t like the way it made me feel
IV Tylenol – pain – best for pain if you can’t keep food down, but really expensive
Propofol – anesthesia – works amazing if done right, most times I woke up and had no nausea. If you come out of a surgery and feel great, make sure the next time you have sugery the anesthesiologist knows your file and does it exactly the same way.
Versed – anesthesia – did not like it – made me drowsy and angry
Karfate – for acid reflux and nausea
Kytrel – for nausea
Zophran – for nausea – clogs you up – took before Morphin after surgery #1
Benedril/Regalin combo – nausea and vomiting – made me restless and agitated – also knocked me out so I could sleep through pain
Colace – stool softener – antibiotics and steroids clog you up – better off going right to the laxitive
Muralax – laxative – antibiotics and dehydration clog you up
Decadron – steroid for brain swelling – bad for long term use and you have to slowly come off it – makes you hungry, you’ll gain weight and get a fat face
Predusone – steroid for brain swelling – gives you a fat face with long term use
Cefepime – IV antibiotic – bacterial meningitis – causes your hair to thin, makes your teeth yellow and possibly contributed to the cause of my kidney stones
Meropenem – IV antibiotic – bacterial meningitis – gave rash all over torso
Oxybutynin – for bladder spasms post kidney stone surgery
Vitamin D – needed as a supplement – lack of sun light from being in the hospital can help cause kidney stones and other issues
Nexium – Acid reflux and nausea – only 2 week course and can cause issues because it inhibits stomach acid production
Probiotics – helps the stomach – lots of wear and tear from antibiotics and other medications – can get the same benefit from live cultures (yogurt) and fermented veggies such as sauerkraut and kimchi
Physical Therapy – 2-3 times per week – balance and coordination, had to learn to walk and reuse right arm and get the brain, nerves and muscles firing together
Occupational Therapy – 2-3 times per week – had to relearn fine motor skills – writing, eating with utensils, brushing teeth, etc.
Acupuncture and cupping – 2 times a week – keep the pathways open and help healing
Hyperbaric Oxygen Therapy – tried for a few weeks for brain recovery, but had to address other issues. It is not covered by insurance for brain trauma, but is for infection recovery
Fresh air – spending time outside to get fresh air and vitamin D
Mountain Biking – taking pretty easy rides for now to regain my balance and get some climbing in for fitness
Football – doing light workouts, weights and agility as best I can – I will ramp back up in late March once my head heals from the January 22 surgery
Rugby – running and passing – working on my fitness and running along with hand/eye coordination
Zach, we have never met, but I am friends with your Grandpa Richard. I am also friends with Jeannie & Ron Komssi – we all have breakfast on Saturday mornings. Cheryl gave me the web address for your site this morning. I have read every page. My prayers go out to you and your family for continued strength as you go on. Your strength, and the attitude displayed by your descriptions is so exceptional – and then I remember how young you are. Your journey has been amazing, more than a person should have to go through in an entire lifetime. And you have weathered it in a way that demonstrates your strength, will, and a very sound attitude about life. I hope one day I can meet you – when you can drive on up to Placerville and have breakfast with us. My love and prayers to you and your family …
Zach…. your story is a remarkable story of fear, love, courage, perservance and determination. I wish you health, happiness and success in your future. I’m always praying for you! Blessings to you today and always!
Hi Zach! I just want to tell you how moving your story is! You are such a brave and amazing person. I really had no idea what going through something like this is like. I’m frankly ashamed of my ignorance. I have known your mom my whole life and I have been praying for you and your family all year. You humble me- you and your family. I’m sooooo happy for your recovery! You really are just AMAZING! God bless you-
You are indeed a warrior and a rock star! As Lynette’s son I would have expected no less – your mom is a remarkable woman and was a fun and energetic kid. So glad to hear of your progress.