Quote:
Originally Posted by cr0604
Hi there. I posted the other day about my 8-month old receiving a shunt. This was his 5th surgery, the first 4 were embolizations for an AV malformation. This is all new to me and I just need someone to talk to or to be able to ask questions. It is very encouraging to read the posts from some of y'all who have had shunts for most of your life. ...I just feel like I really can't find information, every time I read up on shunts...it's just the technical aspects of it. I know about shunt failures and shunt revisions, etc. ...but I guess I'm just curious, is there anything my son won't be able to do due to his shunt? What should we be careful of? Will he be able to lead a normal life? I want to be able to have these answers for him and for me. I'm sorry if i'm rambling....I guess I'm just looking for some guidance.
|
I was the same age as your son, when I had my first shunt put in.
The one thing you should be careful of is, your son hitting his head. Because that can cause a shunt failure. Then you will have to deal with the medical system stalling to get him the proper help.
My (ex)fiancee was physically abused as a child by her step-father having hit her head on numerous occasions, the whole time her own mother denying that the abuse was ever taking place. They even refused to let her go live with her father.
That was until she finally was able to leave the home.
When my (ex)fiancee n' I got engaged, she had told me about the physical abuse and her constant headaches. For seventeen years(1985-2002), after she left her parent's house, she had been told that she was just having migraine headaches. The first time she had a 'migraine' headache and, I took her to the hospital, the ER docs' just wanted to give her a quick pain med and send us on our way. I vehemently told them, that considering her abuse history and 'migraine' headaches, that she needed more than a 'quick fix' by the ER. I insisted that they do x-rays and CT-Scans of her head because there was something more than a 'migraine' going on.
She was even accused of lying. I demanded to see her x-rays. Normally, A hospital won't do that on such a quick demand. Being a Hydro patient myself and having seen countless scans of my own, when I saw her scans, I could see her Hydrocephalus as clear as the hand in front of my face. It was at that ER visit, that she was finally and properly diagnosed with Hydrocephalus.
We moved to Duluth(Minnesota) in Nov.'02 and, her first VP shunt was installed in Mar.'03.
She hit her head on 'black ice' in Dec.'05. For nine months I tried to get her in to see her neurologist to get the obvious problem fixed. Her neurologist and her neurosurgeon kept denying that her shunt was broken. I finally had enough and went to a neurosurgeon at a neighboring hospital. I told them the situation. At her first appointment, the CT-Scans and MRI scans were shown to the new neurosurgeon. The neurosurgeon was aghast at how the original neurosurgeon and neurologist could have missed the problem. Her VP was embedded in her brain tissue. She had a shunt revision within a month.
The point of my relating those two incidents is, that you will have to press the doctors hard sometimes, to get them to realize what the problem is.
The word 'normal', is subjective. What is 'normal' to one person, is not 'normal' to another person. With good healthcare and schooling, your son should be able to lead a 'normal' life.