Hydrocephalus

[A_Bacon]

MY SON WAS DIAGNOSED WITH HYDROCEPHALUS AT 6WKS OLD, HE IS 8 YRS OLD NOW. IN THE SUMMER OF 2007 HIS SHUNT MALFUNCTIONED AND HE HAD 4 SURGERIES DUE TO SOME OTHER COMPLICATIONS. HIS NEUROLOGIST REQUESTED AN MRI WE NOW KNOW HE ALSO HAS A CHIARI MALFORMATION. THIS SUMMER HIS SURGEON WANTS TO REPAIR THIS CONDITION. MY CONCERN TODAY IS MY 7 YEAR OLD DAUGHTER. SHE COMPLAINS OF HEADACHES ALL THE TIME. EVERY NOW AND THEN SHE COMPLAINS OF DIZZINESS I HAVE HAD HER EYES CHECKED SO THAT IS RULED OUT. I AM WORRIED BEING THAT SINCE THESE DISEASES ARE CONGENITAL IS IT POSSIBLE THAT MY DAUGHTER MY HAVE THEM ALSO BUT UNTIL NOW HAS NEVER SUFFERED ANY COMPLICATIONS FROM THEM??? DOES ANYONE KNOW IF THIS CONGENITAL DISORDER IS SOMETHING THAT IS CARRIED IN MY GENES AND POSSIBLY NOT ONLY MY SON IS SUFFERING FROM THIS.... BUT POSSIBLY MYSELF AND MY DAUGHTER??? I WAS TOLD SOME PEOPLE HAVE THESE CONDITIONS BUT ARE NOT AWARE OF THEM UNTIL FACED WITH A TRAUMA TO THE HEAD. I AM SO WORRIED ABOUT MY LITTLE GIRL BECAUSE THESE HEADACHES SHE IS HAVING ARE MIGRAINES IN WHICH SHE ISOLATES HERSELF TO A ROOM FOR QUIETNESS MUCH TO OFTEN. PLEASE HELP....SHOULD I HAVE HER SEE A NEUROLOGIST??

[mp327]

Dear A_Bacon--

I'm so sorry to hear of your son's problems, but I hope he is currently doing well and that his upcoming surgery will be successful. I was diagnosed with hydrocephalus in 1993 at age 39, and Chiari malformation was ruled out at that time, to my relief.

As for your daughter's symptoms, perhaps by now you have had her evaluated by a neurosurgeon. If not, I would think that CT/MRI studies would be in order to rule out any neurological problems. I hope that she is feeling better and perhaps any serious medical problems were not the cause.

I am unable to comment on any possible gene connection to your son's congenital problems. I am not a doctor, just another hydrocephalus patient. However, you made mention of people having hydrocephalus without being aware that they have the disease. If you read material on this disease, it is often mentioned that this may be the case. I was not aware of my disease until I was 39, and did not have any problematic symptoms until about a year before that, which I attributed to stress, etc. Only when a co-worker was diagnosed with a brain tumor did I get concerned enough to be evaluated.

I wish you the very best and hope that your son will have relief from his problems with the surgery. Also, I hope your daughter is doing well. I would appreciate an update from you. I'm sorry for a delayed response to your post. However, I just found this forum not long ago.

Martha