There but for the Grace of God....

There is no cure for hydrocephalus and very little research.  The treatment/management tool is a shunt.  It's basic design was developed in the 1950s, and has an average 50% failure rate after two years.  The NIH spend sixty cents per person per year with hydrocephalus, compared with $300 per person per year with diabetes, yet there are the same number of people in the USA living with hydrocephalus as there are with diabetes.

It costs the USA one Billion dollars each year in health care costs to treat hydrocephalus.

But this is where I'm 'One of the Lucky Ones'.  Sixty percent of children with hydrocephalus are not independent as adults. Fifty percent of children with hydrocephalus score 80 or below on standardized intelligence tests.  Even fewer I'm guessing go on to go to college and get a degree.

Support Group?

It seems unbelievable.  After a couple of weeks of "growing pains" with this new shunt, I realized a few days ago, I'm now headache free.  Of course I'm still on my regimen of about eight prescription drugs to keep headaches and other maladies at bay (with two others on stand-by if needed).  However, I feel like I officially can't look for a support group for those in chronic pain any longer :-)

I'm still on the hunt for a support group for "Chronic Illness" or "Adults Who Grew Up With Hydrocephalus."  The second might be a little tougher, as I'm at the end of the first generation of hydro kids to make it to adulthood.  On the other hand, I don't want to be stuck in a support group with a bunch of women complaining about their experience with a "made up" condition like fibromyalgia.  I need to find a group where the adults have had (whatever they have) since childhood, and it needs to be potentially, conditionally, life threatening like meningitis and hydrocephalus.
Maybe a support group for Spina Bifida would work.  Like I said, I'm still on the hunt.

An enormous bald spot

During this year's surgery they shaved off even more hair than they did in 2013.  I know it sounds like a trivial thing to be concerned about.  If  I were a guy, I could shave my whole head and show off my nifty head scar.  If I were a Goth I could shave an equal and opposite amount on the other side, and die my hair black.  However, I am neither of these things.

Thank God for thick hair, when I have my hair down, you can't see the enormous patch of missing hair.  So, unless I have my hair in a ponytail, the bald/growing out hair doesn't show.  My hair near the growing out sight is seventeen inches long.  It will take thirty four months for the shaved area to reach the length of the rest of my hair, so basically three years.  Based on how long the last shunt was in,  I may be due for another shunt revision by then.  Then the process will start all over again.  How depressing.  I guess though if my hair is the least of my worries, and I still don't suffer from any physical or mental handicaps, I am one of the lucky ones.

Also, thank goodness for hair extensions.  I can go back to exercise class (when authorized to do so, the middle of June) with the hair extensions in, and won't have to explain my bald/growing out spot to the rest of the class.  No one will notice, it'll be covered by the hair extensions, which will be secured with barrettes.  Much better than last time.