Tag: MUSC

I really wanted to write something about my shunt-anniversary. That is the day that I “celebrate” for having my vp-shunt placed. A vp shunt drains the extra spinal fluid that builds up in my unique brain and dumps it into my stomach area via a catheter that runs the length of my abdomen. This is due to a condition I have called IIH or Idiopathic Intracranial Hypertension (IIH), also known as pseudotumor cerebri, is a condition where the pressure inside your skull increases for no apparent reason. This elevated pressure can cause various symptoms, most notably headaches and vision problems. It primarily affects women of childbearing age, particularly those who are overweight. I was the perfect candidate for this unique disease. I had a series of bad headaches (totally unable to be controlled, needing ER visits or admissions), eye issues like pain and double vision as well as loss of vision, and neck/back pain.

After a ridiculous amount of ER visits, being labeled as a wimp or not being able to handle a simple headache, or a drug seeker, I was finally referred to a neurologist. The neurologist looked at my unique medical records and went on a hunch that something else was going on. Multiple tests then happened included an always fun and painful lumbar puncture. Measurements were taken of the pressure at the opening and closing of the puncture, which has to be done without anesthesia of any kind- YIKES! Mine was very elevated indicating a potential problem. Around the same time, I started seeing a wonderful eye doctor. He diagnosed me with papilledema (swelling of the optic nerve) that could cause me to lose my vision permanently if no action was taken. The combination of these two events got me a referral to a neurosurgeon.

On my first appointment with the neurosurgeon, I was told three things, I had a weird tumor (nothing too scary), that officially was diagnosed with IIH, and I needed brain surgery (again) to place a shunt. Oh, and the surgery would be within the week. I, for the first time in a while, was rather stunned and didn’t ask my usual crazy number of questions. One thing that stood out to me was the fact that that I would lose my hair on the side where the shunt would be placed. I latched onto this thought and had to control it. So, I did what every rational person would do- I had my head shaved in advance of the surgery.

I made a quick decision to shave my head- literally within twenty minutes of leaving the neurosurgeon’s office, as I had a pre-scheduled hair appointment. I walked in to my wonderful hairdresser and asked her to shave my head. She asked me several times if I really wanted to do it. I was determined to control whatever I could at this point and she not only shaved it for me, but wouldn’t charge me for the “cut” either. I remember driving home, bald as my father, and wondering what they were going to say. Both were in complete shock about the hair and major surgery that was going to happen so soon. I snapped a picture and sent it out to the universe announcing what I had done.

The surgery was pretty complex and I spent several days in the ICU. I had a big incision with staples on my head as well as my abdomen. I am blessed with not remembering pain long term, but remember that my wonderful doctors including my neurosurgeon and pulmonologist rounded daily, if not twice day. After being finally placed in a regular room, I went home at day eight. I was so glad that I shaved my head because it was nasty after the surgery and caked with blood, staples, and anything else that came with the surgery including not being able to shower for another two week and only using baby shampoo after that for a while. My crazy curly hair would have never managed that sentence, plus it was summer in south-west Florida!

My hair grew back very slowly, but healthier than ever. There were a few sunburn moments, but I quickly learned to find some awesome hats (with the help of some friends). I look back now on the decision to shave my head and realize it was one of the best, most freeing decision I have ever made.

Having a shunt came with something I wasn’t prepared for at all, mainly the very real fear of the shunt getting infected or damaged and being so close to the brain. Every stupid infection without a simple source raises a red flag, as does each non-typical headache, or injury to the head. I can’t even count the number of shuntograms, ct studies, MRI’s, or x-rays that have been taken. I am often surprised that I am not green from radiation. Nonetheless, I would have the shunt placed again given the choice. My shunt, while temperamental and fragile has saved my vision, and freed me from the worst headaches of my life. I have to be careful around magnets, which is oh so much fun when a doctor orders an MRI and caused me to have to change things like my mask for my sleep machine (NIV) because it had magnets.

I have some scary moments with the shunt so far. A few concussions, viral meningitis, changes in the programable valve, ER visits, trips to MUSC and more. When I moved back to Myrtle Beach, I was nervous about losing my beloved neurosurgeon, but I found someone at MUSC, an amazing woman, about my age that takes no prisoners. I like that approach! Somedays I forget that I could’ve lost my vision or that I have a foreign and expensive device in my brain, other days its one of my first thoughts, either way, its a part of me and my life story.