Jules Musings: Stories and experiences of other patients

As a part of my journey through pre op and post op I have met some amazing and inspiring people. There are some amazing stories and each of them is a testament to the power of the human spirit. Without strength, often self-advocacy and hope, getting through is very hard. One of the ladies I have met through a support group is Candy. She has allowed me to share her story with you.

My story begins in March of 1986. My youngest daughter was just 2 months old and I started having debilitating headaches. We all know them...the ones that knock us off of our feet for a few hours and then we get up and move on after the pain subsides. After a few of these episodes I got double vision, but I had two children to care for, ages 3 and 2 months. I didn't have time to stop, so I just started closing one eye and proceeding with my daily activities.

My husband saw me one day trying to do something with one eye shut and he got to asking me how long I had been doing that. When I told him, he said "okay, enough is enough. You are going to the doctor”. I made an appointment with my GP. When I told him my symptoms, he held his hands up and started backing away from me. He sent me immediately sent me to a Neurosurgeon. I went, under protest, and he wanted to do some tests on me. One of the tests was a spinal tap and the other a CT scan.

I didn't show up at the hospital when I was scheduled to and the next thing I know...here comes my husband home from work which was very unusual. When he walked in the door, I started crying. He said, "Candy, you have to go or you are going to die."

So I went and had the tests run that the doctor wanted and waited to find out when I was to go home from the hospital. I looked up and saw the doctor come through the door...then he closed it. You could have heard a pin drop.

He proceeded to tell my husband and me that I had excessive pressure on the brain and if he didn't go in and relieve some of it...I was going to die. So he went in and put a shunt in place a few hours later. After the pressure was relieved, he sent me for a MRI and that is when the Colloid Cyst showed up. It was 1.3 cm at that time. I went for periodic MRI and knew the cyst was growing but was content with just leaving it alone.

Fast forward to the year 2002, my husband had started a new job with a new company and when his insurance came into effect, he said that he thought I should go and have another MRI. Being in another city, I had to find a new Neurosurgeon and my GP at the time sent me to Winston-Salem, NC to Dr Steven Tatter. Dr Tatter was like an angel to me, I had to shield my eyes when he walked in the room. He sent me for a MRI and it showed that the cyst was 2.3 cm by then and it had to be removed.

In February, 2003, I underwent a craniotomy to be free of my little buddy. I have memory issues at times, but the effects of the surgery far outweigh the 'could have been' had I elected not to have the procedure.

Unfortunately, there will always be someone, or a lot of someone’s in a group who feel the need to spread their negativity around. The bigger the group is, the more ‘someones’ there are. At a certain point it can be very hard to shift the negative attitude to one of support and caring.

Often older members or those who have had surgery will post their own stories in an effort to try and encourage those still going through the pre op symptoms to reach just that little bit further. To show them that there is a life after surgery. They don’t *always* share the negative post op experiences because they can be very much related to the person and not to the surgery, or something that happened during surgery or even extra surgery. Surgery isn’t an automatic wand that makes all your symptoms go away.

It can be a two edged sword. Those still suffering may feel isolated because they haven’t yet reached the point where they are on the verge of experiencing it themselves. It can cause people to stop posting altogether. Those with the positive stories can feel that they are rubbing the other people’s noses in it and resist making those posts. It is something that comes down to the individual. You will be inspired or you won’t. You will ask questions or you won’t. It is a choice.

Support groups are for just that, support. Ask questions of others and find out what their experiences have been. You do need to keep in mind that these people answering your questions are not experts, scientist or doctors. It is purely a sharing of experience and not a medical diagnosis. While we are on that note, Dr Google, Dr Wikipedia and other websites will scare you. They will tell you things that only happen in the most extreme case. They will tell you about things they have discovered in one patient or a very small group. The truth is that there not any real experts in the field. If you are concerned about something, sure ask what other peoples experience have been but you should keep those in mind when you go to see your doctor. Make sure you have a doctor you are comfortable with and trust. Your life is very much in their hands on a great number of levels.

One of the reasons it can be so difficult to diagnose a Colloid Cyst straight off the bat is that the CC symptoms can be symptoms of a great many other things even in combination. Confusion, Instability, seizes, severe headache can all be symptoms of dehydration. If you pop a bunch of different symptoms through WebMD you will get a huge range of answers about what they affliction could be.

Another part of this process which I really think is essential to making it through; sanity intact is to have a sense of humour about it. Shortly after his surgery, another member of the group dressed up for Halloween as a Zombie patient complete with open brain and nurses to back him up. I am not saying it is easy, it isn’t, trying to find the funny side of things helps. T-shirts with slogans like ‘another hole and I’d be a bowling ball’ ‘I had brain surgery, what’s your excuse?’ ‘It isn’t rocket surgery’

Here are some fantastic brain humour comics http://www.cartoonstock.com/directory/a/brain_surgery.asp

There are so many items you can find to give you that little bit of a giggle to get you through the next hour, the next day the next week. Motorcycle helmets with brains on them, little brain pendants, brain cake moulds, brain jelly moulds. Celebrate the little things, and the big things.

For people outside of the patient themselves, it can be very hard to understand our humour and sometimes find it disturbing. Some of us need to have a creative out let to try to explain to the world what they are feeling. People need to sometimes be reminded that we are not just patients. We are people who have lives and families. It is not just some random person with a wicked cool scar and a story to tell.