The Scorecard – How many surgeries… my meds, and how they fixed me…

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.

Surgeries

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.

Medications

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

Rehab

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