COPING

TROY

Anyone who knows Troy can tell you what kind of person he is.  People enjoy his company and the moral support and enthusiasm he projects. His positive attitude is appreciated and reflects not only on his performance, but also on the performance of others.  He is a kind, warm, fun loving person.  He is also a perfectionist who is hard working, honest and reliable. 

Troy is a giving person who has a lasting impression on everyone he meets.  He is a wonderful husband and a loving father, who loves spending time with his family.

Music and Sports are his favourite pass-time interests.  He has always watched and still enjoys watching a variety of sports on TV.  Growing up he use to play hockey, and golf from time to time, but he frequently loved to play tennis.  During the winter he use to cross country ski, and play outdoor hockey. 

But Troy's absolute passion has always been and still is his music.  He still collects music but he has always bought, and traded music, and loves to go to concerts.

Some of Troy's other interests are that he loves the outdoors.  He loves walking, camping in the summer, having backyard bon fires, raking and cutting the grass, and shovelling snow in the winter months, but now has to use a snow blower.

SIGNS & SYMPTOMS

I have had 9 Surgeries 5 seizures since 1994.

Dec. 1998

I managed to go almost 5 years before having my first shunt revision in.  I would just start to get use to living again, and forgetting I have this condition, and then out of the blue it hit.   Things started to happen and I wondered if it was the shunt malfunctioning again.  But the signs were gradual and I had time to get it checked out to see for sure, and I had time to make the necessary arrangements to go back to Sudbury.

Some of MY signs that my shunt was blocking :

• Headaches

• Tired

• Dizzy, lightheaded

• Signs of vertigo (vision/balance)

• Numbness

• Forgetfulness

• One pupil would be larger than normal

I would have to order a CAT scan to verify for sure if there was any fluid build-up.

June 1999

Then 6 months later in  I ended up having 4 more operations within a single week.  That was the toughest.  There were complications and there was some bleeding (hemorrhage), and after the 4^th operation, they had to go back and drill 2 holes to attach external drains to drain the fluid. 

MY symptoms happened more quickly and with NO warning signs.

• Headaches

• Vision problem

• Short term memory loss

• Vomiting

• Lethargic

• Disoriented

• Non-responsive

I became withdrawn, emotional, frustrated and easily agitated.  I would also tire easily, become light headed, slow moving, and off balance.  I would experience (ocular bobbing) with my eye sight, as well as become very forgetful and had difficulty writing.

July 2001

Symptoms appeared suddenly and my condition deteriorated rapidly.  I had to be air ambulanced immediately to Sudbury.

Symptoms

• Headache

• Sleepy/tired

• Drowsy, lethargic

• Short term memory loss

• Cannot wake up

• Vomits

• Eyes bugging out

• Non-responsive

Surgery was performed immediately but there were complications and more blood, so they had to go back in and insert a drain.

Dec 2001

I don't remember parts of Christmas, experienced headaches, and my eyes started to cross or ocular bob.  On New Year’s Eve, my eye vision became worse, I was very tired, and I don't remember going out that evening.

Jan 2002 

New Year’s Day I slept in late and I was very drowsy all day. I was admitted to the hospital in the evening and they did a CAT scan.  I had to be air ambulanced to Sudbury.  This was the last shunt revision to date so far.

Surgery went well, but I had a seizure.  My wife was with me and called the nurses. They had to inject me with valium.  I injured my lower back and experienced extreme excruciating back pain. 

Recovery time was very long.  I don’t remember anything before  or after surgery or even coming home.  My back was sore for a long time, and I was tired all the time. I also had a loss of appetite,  my memory was getting worse, and I repeated questions.  I later had to go to physiotherapy.

January 2008

I had an unexpected seizure in the early evening.  I fell and banged my head on the entrance door.  During the seizure I bit my tongue and cracked two upper bones in my back. 

April 2008

I had 2 more seizures a half an hour apart.  The first one was mid afternoon at home, and the second one was in Emergency where they had to inject me with Ativan.

We were happy to find out that these last 3 seizures in 2008 were not a result of a shunt malfunction, but they are however common for people with this condition.

Since 2002, I have been on Dilantin, an anti-seizure medication.  I have also been diagnosed with Osteoporosis, and have to take Actenol medication for that.  My memory is getting worse and I  still tire very easily. I no longer can work full time, and now only work one 4 hour shift a week.  I still experience back pain, and have recently been diagnosed with TN (Trigeminal Neuralgia), which is a facial nerve pain that affects usually one side of the face (cheek, jaw area).  I just try to take one day at a time and I am trying to live and enjoy life with minimal stress.

 

Living/Coping With Hydrocephalus

Hydrocephalus is a major neurological problem and is considered a lifelong condition, where surgical revisions may be expected from time to time.  Each surgery inherits risks and/or complications such as paralysis, blindness, hemorrhaging, seizures, or the possibility of long term side effects as a result of one or many brain surgeries.

My conditions with its symptoms and treatments have a great impact on daily life.  Life is sometimes difficult and is consumed by doctor’s appointments, tests, and physiotherapy. 

But the emotional strain of living with hydrocephalus can be immense, and at times devastating.  The unpredictability of this condition causes feelings of fearfulness and helplessness.  I have at times become angry and depressed with not having control, and I am frustrated with the uncertainty of not knowing when the shunt will block or when another shunt revision will be needed.  It is hard to relax and I am on alert, always wondering and watching for possible signs or symptoms of shunt failure.  Since the symptoms come on more quickly and are more severe, timing is everything.  A delay in a shunt malfunction and revision could result in permanent brain damage, and possibly death.

Each surgery takes its toll on me and my family, and recovery is a very slow and long process.  But it is the financial burden that is always a constant worry.

Conclusion:

Over the years, there has been a change in my normal behaviour.  My short term memory loss is progressing, and I misplace things frequently.  I often will forget to take my medication, am easily agitated, and I am tired all the time.  I have also noticed I no longer can eat very much anymore.

Sometimes I will become depressed because I feel I am slowly losing my independence and losing control over my life. 

But all in all, I try to maintain a positive attitude and my outlook on life is very simple, in that I have learned to appreciate life more and not to take anything for granted.  Health, happiness, and quality time with my family and friends are what are important to me.  Life is  too short and I try to go on and live life as normal as I can.

It has been a struggle and a process, but I feel we have done all we can to help live with this condition.  We have done a lot of research, and have had to fight for financial stability.  But finally we were accepted for ODSP (Ontario Disability Benefits), and just recently for CPP (Canada Pension Disability).  My wife and I just try to simplify our lives and keep things as stress free as possible.  I have the Medic Alert Bracelet and have informed family and friends of my condition as well as my symptoms just in case of an emergency. 

I now need to take calcium supplements, and medications for seizures and osteoporosis.   Frequently I need to follow up with doctor’s appointments and regular testing such as medication levels, bone density tests, and CAT scans, to hopefully prevent any unexpected setbacks.  I also walk frequently and use an elliptical machine daily to help with my overall health and osteoporosis.