Our Story, By Jackie
Our Story began on the 17th January this year. One minute my 14 year old son was talking to me.. the next he was having a seizure. We went to the hospital. He was admitted overnight and sent home the next day. On the 28th January it happened again. This time they carried out an EEG and a CT scan. He was diagnosed with Generalized and Partial Epilepsy. They said the CT scan was clear.
An appointment was made to see the Neurologist in May.
I knew a little about Epilepsy and I read a lot about it. But some of his symptoms just didn't seem to fit with the Epilepsy. He was getting headaches that last up to 10 days, He has constant back pain, He became sensitive to sudden changes in light (especially sunlight), chest pains and racing heart.
When we went for the appointment in May we listed all the symptoms and we were asked if we were given the results of the CT scan. I said yes. We were told it was clear. No. the doctor said. It showed he had a Chiari Malformation. ??? I had never heard of this! I actually wrote down Carry Malformation in my diary. It was explained to us that his Cerebral Tonsils were herniated and extending into the Spinal Column. We were told most people who have this live their lives without ever having a symptom and that it had nothing to do with my son's Epilepsy.
Of course when I got home I spent some time looking up Chiari Malformation. (It took a little time as I didn't have the spelling for it) I didn't know then what type of Chiari he had.. but I guessed it was type 1. And there it was.. showing symptoms my son was complaining of. I won't deny it.. I went into a panic. I spent days on the computer trying to find out more about it.
A few days later my son stubbed his toe.. he went to yelp out in pain and then realized it didn't hurt. Of course he did it again just to check.. no.. no pain. I said to him.. bet you'll feel this and I pinched his arm. But nothing.. not so much as a blink of an eye. I brought him to my own GP and she checked. She gave him a few really good pinches.. and still no pain. My GP had heard of Chiari Malformation.. but she was honest. She didn't know too much about it and she was going to check it out. She's been great!
Since then my son's right hand became numb (lasting about an hour) and when the numbness went away he had a burning sensation down the side of his hand that lasted all day. If you gently touched this he would yelp in pain. And once when he went to take a drink he started gagging before the bottle reached his lips and he felt like a someone had stuck a plaster across his throat and he couldn't swallow.
For months I have been telling him to stop fidgeting when he's standing. The other day I said it to him and he replied that if he stops moving when he is standing he feels he's going to fall over. He just keeps shuffling from 1 foot to another.
My big concerns at the moment is that he has 2 separate conditions. The Epilepsy and the Chiari. But symptoms can overlap in both conditions. I've been told he's not having Chiari symptoms. But so many of the things he's experiencing are experienced by so many people with Chiari. A lot of the symptoms I have given over the phone could easily be Chiari. But each time he has a problem his Epilepsy meds are increased.
Luckily I found Ray. The Medhelp website is great. But most are from the USA and don't understand our health service. I wouldn't wish Chiari on anyone. But it was so good to find someone here in Ireland experiencing the same thing. It really is worrying when you see Medical experts with puzzled looks on their faces when you mention Chiari.
July 2nd 2010
Aaron is having more good days than bad days lately. He's still having the headaches, backpain, shoulder pain and still gets tired really easily. But he's also out playing and having fun.
Next month we have an appointment to see a Neurosurgeon. Just praying he's experienced with Chiari 1 Malformation.