Hydrocephalus

[Jap1702]

Hi my name is Jane, I live in the UK with my husband and two sons, Joe is 18 and Luke 17. Luke has hydrocephalus and a vp shunt inserted. He was not born with hydrocephalus, it was not noted until he was 5.5 months old (there is no reason for him having it) he has had approx 5 revisions but in his life approx 22 different operations on his head, he has two bore holes on each side of his temple, which need to be re-opened all the time. Luke always has a headache but it does depend on the severity on them as to how much it affects his day to day living. Luke lives each day as if it is his last and will not allow this condition to rule his life. Our life has not been easy, each member of our family have suffered because of it, but it makes us stronger. I am very very proud of my son and how he handles
himself and his hydrocephalus, I am proud of our family for its strength and love and just wanted to come on here and say hi. There is an answer out there somewhere, we just have to keep looking.

[mp327]

My heart goes out to your son, you and your family. I'm sure it's been a difficult road to travel, but it sounds like you have all remained strong and supportive of each other. Your son sounds like a determined young man, ready to live every day without letting hydrocephalus get in his way. That is my attitude as well. I wasn't diagnosed with it until I was 39 years old. I had surgery for my first (and only-to date) shunt on 12/29/93. I have had minimal problems and have lived a completely normal life since. In June 2008, I was diagnosed with anal cancer and the treatment and recovery from that has been much more of a struggle than anything I ever experienced related to the hydro. But I am determined to beat this cancer and am currently in remission, so, so far so good. Tomorrow, at age 55, I am planning on running in a 5K race!

I wish your son the very best and hope he will continue to show his great strength and courage in not letting this disease define his life. He is fortunate to have a loving family to support him and I wish you all well too! Thanks for sharing his story with us.

Martha

[Grammie2]

Hello Jane,
My grandson is turning 5 months tomorrow will enter surgery Tuesday to implant a shunt for he has a buildup of CSF and therefore has acquired Hyrocephalus. We are trying to figure out where, when, and how as well. At birth, his head was noted 82%tile but "normal". After changing doctors is where it was mentioned and a sonogram was performed. Ct scan as well and here we are waiting for this Tuesday. My daughter and son-in-law are diligent educators now and want to educate themselves and their son on this condition/syndrome for a full life.
I was Googleing "Living with a shunt" because I needed to find older patients and their survival. Thank you for your information and strength you have given your sons. If you still blogging here, I will keep you posted to Kaiden's condition after Tuesday in Madera, California. Grammie Patty

[mp327]

Grammie Patty--

Just wanted to let you know I am thinking of your grandson today. I know his surgery will be today and I am hoping it will be successful. I know all will go well! Please let us know how he's doing when you get a chance.

With thoughts and prayers--
Martha

[Grammie2]

Martha, I've been busy loving and hugging and kissing our little grandson since his surgery June 12th. He is doing very well and his development is not skipping any beats. He is enjoying his new-found days of movement, far more than before. The Doctor's at Children's Hospital in Central California are fabulous. Our grandson was released Thursday morning with flying colors.
Of course, there is the what if's especially by my daughter and son-in-law, but he is doing so well. It has been a great week filled with emotions. Thank you for your support as this really has helped ease out fears. We shall keep in touch,
Grammie2

[mp327]

Grammie--

I am so thrilled to hear that your little grandson came through his surgery with flying colors! I know you and your family must be very relieved that this is over and that it has been a success. God really does answer prayers--I'm so happy for the little guy. Now, he can get a restart on life and I'm betting he is going to do great. It sounds like he was in very good hands with his doctors and medical team. That is so important in putting some of the fears to rest.

I wish him the very best, and I do hope that you will think of updating me periodically on how he's doing. I am always up for a success story, and it sounds like he will have one to tell! Take care and give him a kiss for me!

Martha