Disability A-Z: H is for Hydrocephalus, Hemianopia and Head Control

TRIGGER WARNING: major brain surgery, unintentional vomiting, NG tubes IVs.

Hydrocephalus:

I was diagnosed with hydrocephalus when I was 2 weeks old. It was the result of my premature birth as well as severe grade 4 brain bleeds on both sides of my brain.

I have what’s called a shunt to control the increased cerebral spinal fluid since hydrocephalus means I can’t control it myself. I had my first shunt fitted at Great Ormond Street Hospital in London. I was very ill during the procedure, and what would have been quicker ended up taking five days. I needed a blood transfusion before it and NICU care afterwards. But…I survived.

There were some surgeries after this, and then some more. Here’s what I know about my surgeries and hydrocephalus symptoms:

Age 6: I was vomiting and lethargic and had headaches. The tubing in my neck was broken.A doctor said he thought it was the flu, but then realized it wasn’t.

Another surgery and I ended up with 2 shunts as it was deemed too risky to remove one of them which was later called “redundant” (not in use) as doctors feared my already very severe disabilities would become even more severe if the extremely delicate surgery to remove the shunt went wrong. The broken tubing in my neck was removed and a new VP shunt and tubing was connected.

Age 11: I had headaches and had an Intracranial Pressure (ICP ) monitor fitted for 24 hours, during which time I was lying on my back on the hospital bed, with my head taped to the pillow and was instructed not to move.Not moving is not easy with my hand tremors, involuntary movements, spasticity and startle reflex.

I was fed through an IV and the alarms on the machine would startle me day and night and keep me awake.

I ended up having to have surgery at this age, too. I remember a lot of things from this time. We lived in Wallingford in Oxfordshire, and the nearest hospitals were in Oxford. The hospital I was in most was The Radcliffe Infirmary, but when I was 11 I was in The John Radcliffe Hospital.

I’d been having headaches and so we went to see my neurologist. I’d been having nausea and vomiting and was not feeling great. My head was throbbing. I felt sleepy and lethargic. These symptoms were classic hallmarks for me and hydrocephalus problems. I’d go to sleep then wake around 2AM crying loudly because the increased intracranial pressure headaches were the worst I’d ever felt.

I still remember mum packing an overnight bag just in case. We went to see my neurologist, went back home.

I remember when the call came, how mum said “We have to go to the hospital.” So, back we went. I remember taking my Forever Friends soft toy (a brown rabbit with pink inside its ears). I also sometimes bought a white seal soft toy with me as I loved it’s jet-black eyes and soft white fur.

I still remember the sterile ward and the antiseptic hospital smell, how I’d try to hold the soft toy and how much the IV in the back of my hand hurt, and made the spasticity in my hands even worse. I still don’t like IVs for this reason. I didn’t like a lot of things in the hospital: the blood tests, the over-sweet bright orange medicine. Being poked and prodded by doctors and nurses. Not being able to eat and drink. Longing to eat and drink what I wanted. I knew the hospitals were’t far from the shopping area, and I wanted to go there or to the movies. The hospital was the last place I wanted to be.

I remember mum sleeping on a folding bed in my room, and a visit from my grandparents Patricia and Terrence. I remember how they were walking towards me and I wanted a hug but they couldn’t give me one because I had to be as still as possible to “help my brain adapt to the shunt”, as doctors and nurses said. I felt nervous and scared, like my body would reject the shunt.

I felt I wouldn’t ever get out of hospital. that I wouldn’t eat again or need a feeding tube in my stomach as there was some talk about that. NG tubes still scare me to this day, and I pray I never need another one. I thought a feeding tube was a better option as NG tubes made me gag and almost vomit when they were being put in and they had to be put back in every time I did vomit.

The nausea and vomiting from hydrocephalus was so bad I had a sign by my bed: NIL BY MOUTH. I’d been hospitalised enough for hydrocephalus by this time to know what that meant: that medical professionals could not give me ANYTHING to eat or drink and so I had food and medication through an IV.

I remember how even the smell of food would make me feel bad.

Not much could cheer me up, and I felt bored. I felt like I was the “complex case” one doctor said I was, and ike everyone wanted to study and observe me. I felt glad I didn’t have the deformed tall “steeple skull” I had when I was a baby. I still felt very different from everyone else. I felt like I was the only person in the world with spastic quadriplegic Cerebral Palsy, hydrocephalus and severe visual impairments. In my frustration, I’d get angry with the nurses, say everything wasn’t fair, and, I don’t know how I managed to pull out my IV on my own, but I did.

There were times when I’d cry and feel sorry for myself and feel uncomfortable because my muscles were too tight and were tighter still when I was exhausted or in pain. I didn’t like the extra dizziness and disorientation as my brain and body tried to get used to the new shunt.

The person who saw me for me was Ciro, a boy whose Italian family lived in Oxford. He had cancer, and he loved board games. I didn’t, but he’d want to play Connect 4.

I would use a scraping motion to try to get the red and yellow disks in my hand as a pincer grasp was too hard. I would spend more time dropping the disks (and startling myself when I did) then struggling to pick them up again. Ciro would pick them up, make a line after he asked where I wanted them and he’d let me win sometimes.

Then, one day, Ciro wasn’t there. I found out he’d passed away and I felt so sad.

I felt really self-conscious most of the time because I was the girl with CP and hydrocephalus and shunts in her brain. I was uncoordinated and struggled with strength, stamina, movement, posture and vision.

Now, I’m 40 years old, and happy to say I haven’t had a shunt surgery since I was 11. I have learned to self-advocate for hydrocephalus over the years. My shunt is still working well and has been for 29 years now.

Hemianopia:

I have a vision impairment called hemianopia which is complete blindness in half of both eyes and a severely reduced visual field in the rest of the eye. This causes difficulty focusing my eyes, difficulty with night vision, double vision, difficulty understanding what I’m seeing, vision that appears dimmed. I also move my body and head to try and see. It can also cause visual hallucinations. I’m registered legally blind because of this and my other visual impairments (nystagmus, strabismus and astigmatism).

Head control:

I didn’t have any until I was two years old, and my neck alternates between stiff and floppy. I have involuntary movements, spasms and pain in my neck. My head often ends up on my chest and I cannot put my head back to reach my headrest on my wheelchair whether I am sitting or lying in my wheelchair (when it’s tilted and reclined), so I need physical help to do that. Much of the time, my head feels heavy and I get headaches and dizziness easily from the effort of moving it.

I hope you enjoyed my H post.

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