I am writing this story to you after having read others like it on your website. My son, Logan is 3 1/2 years old and had been having headaches off and on for about 2 months until it finally came to him having a seizure on Canadian Thanksgiving Monday at our home in Saskatchewan.
He is normally a very exciting, energetic, outgoing, fun little boy with lots of love for everyone especially his little brother. He was up until this point a very normal,.happy child. He was a great pregnancy for my wife (3 days of labor mind you). But on that day, 7 lbs. 7 oz of pure fatherly joy emerged and my life has never been the same. I thought that nothing like this could ever happen to us, but now I have fear of something. We took him to the emergency room and they immediately performed various tests looking for various things
Blood tests, urine samples, X-rays; the normal stuff.
Until the CT Scan happened and then there was some cause for concern. The radiologist had discovered that our special little boy had an arachnoid cyst. We were a little unsure as to what he meant, but when he started using words like sacs spinal fluid, and pressure on the brain; we knew that this was serious.
We then underwent the proper steps to ensure that he got the best care possible We saw our family doctor, who in turn got us in touch with a pediatric specialist and a neurosurgeon. Our neurosurgeon was not very helpful and his reception staff made this an even more unbearable time than it already was. So we went elsewhere to have all of this looked at and we had an EEG exam done with the results that we were expecting. A mild "slowing" of the left side of his brain.
Not something that anyone wants to hear.
We were then put on a waiting list of 6-9 months to have an MRI done. (Yes, for all of you
out there living outside of Canada, 6-9 months to sit and wait to find out when your sons next seizure will be or having to listen to "my head hurts" or "I have a headache again, Daddy" sitting there feeling completely helpless and wishing that you had your own private MRI machine in your house to do it.
Well, after about 4 days of waiting, I had had just about enough of sitting around and decided to do something about it. With some help from our family we arranged to go on about 6 hours notice to the closest U.S. MRI facility in Williston, N.D. at Mercy Hospital. This place is a city of 14 000 people and they have 2 MRI machines. We are a province of 1,000,000 people and we have only 2 MRI machines! So much for free health care being
the best thing.
I would have paid 1,000,000 times the amount that they were asking because to me and my wife, our son is priceless. We have since had 2 meetings with separate Neurosurgeons outside of our city of residence with completely mixed results. One bonehead said that he was suffering from migraines. That was one week ago.
Today (Nov 11,2004) we saw another man, whose name is Dr Robert Greible and he is a Neurosurgeon at Royal University Hospital in Saskatoon, Saskatchewan. I would invite all to call him because he actually believes in these arachnoid cysts as problems, and not merely something "in your head." What he said about the other doctor's assessment astounded me.
"Well", he started. "Your son may have migraines, but he's also got an arachnoid cyst and we have to talk about treatment options." Now that was refreshing because my wife and I had said the exact same thing a week previous without one day of medical school.
I have read almost every story on your web site. I was full well not expecting to see anything on the web but a bunch of doctor's reports and other such documents. I was relieved to see that my wife and I are not the only ones going through this with a child and I would like to know any names of specialists that we should maybe get in touch with in regards to this.
Also, if anyone out there has any information in depth in regards to shunts and shunting procedures, we are very well educated people and would like to know as much as we can before we can make our decision that could very well impact our beautiful little boys
Thanking you all in advance.
Dan Kurtz (email@example.com)
I would never consider a shunt as the first option to dealing with this. Instead I would look into fenestration. Your son doesn't have migraines, the meds are unsuited. He has as we are calling them "Arach-aches" and it might be a problem with him having too much CSF. Try to limit his Vitamin A intake.
I would love ot read through the reports so I can get a better idea of how to help you. If there is mass effect noted by a radiologist than take serious note as that can cause long term damage.
If I were you I would apply for health care here in the states. Please call me. 310-745-7422 so we can discuss this further.