Transitioning from a pediatric to an adult neurosurgeon

I don't know about other neurological patients, but I really struggled and still do struggle with transitioning from a pediatric to an adult neurosurgeon.  There is a difference in care.

When I was growing up, my pediatric neurosurgeon always told my parents to take me to the emergency room if I had signs of a shunt malfunction.  Then he would meet us there.  Now if I go to the emergency room and they aren't certain what is wrong, they tell me to follow up with my neurosurgeon.  So I stopped going to E.R. unless I am bleeding  or leaking CSF out of my head which has happened many times in the past year.  One of those times when I was gushing CSF out my head, the on-call surgeon decided that the E.R. physician should staple my head  and then send me home to follow up with my doctor.  What they should have done was do exploratory surgery that night. 

Since I don't go to E.R. as often I have to make an appointment with the office.  I can't always see my surgeon though.  A lot of the time I see a physician's assistant.  When I was growing up I never saw one.  If my surgeon wasn't available I saw one of his colleagues. I know physician's assistants can be very helpful but in my case sometimes they give me the wrong information or have made me wait longer than I should have which made matters worse.

When you become an adult they don't seem to have such an urgency to treat you.  I've actually had to wait a month or longer for surgery and sometimes months to even get in to see someone.  Treating hydrocephalus is very common among pediatric neurosurgeons.  Adult neurosurgeons treat people with neck injuries, do back surgery, remove brain tumors, etc.  Hydrocephalus doesn't seem to be high on their list of ailments to treat.

Brain surgery is scary for anyone at any age.  As I stated before, my pediatric neurosurgeon was very comforting.  Since I've had this condition my entire life, people act like I should just be "used" to it.  No.  You never get used to this.  In fact when you find out  you need yet another revision, all the pain and trauma from all the other surgeries come back.  You know what to expect and you don't want to do it again and again and AGAIN.  Seems like there is a lack of compassion when you become an adult.  But adults need compassion and comfort as well. 

Also when you have that emergency in the middle of the night or on the weekend, you get whoever is on call.  As a child you see your surgeon unless he or she is out of town.  That is probably the most difficult aspect for me to deal with.  It is extremely hard to trust someone you don't know to operate on your brain.  Especially in my case because I have slit ventricles.

But I have to say I am blessed to have my current neurosurgeon.  He has come in on the weekends several times, is scheduling the next surgery when he is on call and is very comforting.

Not everybody may share the same experiences as me.  I am just one in millions but I still wanted to share my experience in case any parents with young children were having questions about it.   If you have any more questions feel free to ask me.  I will admit that I am a sensitive person so I may take these experiences harder than someone else would.

Also a warning to all you young neurological patients out there-the first time you sign your consent for surgery may be very unnerving.  My mom was always the one who signed the consent when I was growing up.  The first time I had to sign it, I cried.  I kept thinking what if I don't make it and I just signed my life away?!  To be honest I still cry when I have to sign them just because I don't want another revision.

The important thing to remember as a patient is that you know your body better than anyone else.  If you know something is wrong and you aren't getting the help that you need, get a second opinion.  Make yourself heard until they do something about it.  You will have to be an advocate for yourself.  If you are lucky you will get a surgeon who trusts that you know what you are talking about if you've had the condition your entire life.  Just know that you are not alone.