Hydrocephalus

[livingwith]

Our son was diagnosed with Hydrocephalus at birth. Within a 40 year period he had 35 hospitalizations and 25 surgeries for shunt malfunction. He was later diagnosed with slit ventricle syndrome. He, at one point, was sent home to die. We finally found our doctor at UCLA Medical Center who is an expert in this field. He diagnosed David with Acqueductal Stenosis and did a third ventricularostomy. After 40 years David is completely normal. Although probably untrue we consider ourselves, after 4...Read the full article

[mp327]

Mike--

I'm so glad to hear that your son is doing well. It's unfortunate that he spent all those years being treated for a misdiagnosed disease--thank goodness you found your good doctor! Best wishes to your son!

Martha

[Grammie2]

My family and I are looking for expert advise and comments as my grandson, entering his 5th month will be undergoing surgery Tuesday to implant a shunt, I don't know which type of shunt yet, until I get to the Children's Hospital of Madera, California. My daughter and husband are convinced they have the best neurosurgeon there and I have no reason to not believe this. The cause is completely unknown as at birth there was no note by the delivering doctor, which was at Kaiser of Fresno.
As the grandmother, my husband and I are looking for solice and hope of normalcy not to exclude the many, many replacement surgeries we are being told will become the norm.
Technology has to come into play as these shunts should become more sofisticated and simplier on the patient!
We are looking for words of confidence, success stories, as we begin the life with our grandson and his shunt. My daughter is interested in completely emerging him and all of the family with education, knowledge to treat this as a normal part of life.
We of course are looking forward to his cognitive success most of all and the rehabilitaion to achieve this.
Grammie Patty

[mp327]

Grammy Patty--

My heart goes out to you and your family and little grandson. He is certainly getting off to a rocky start in life. You already know about the shunt revisions that are most likely in his future. I wish him the very best with the upcoming surgery.

You asked to hear a success story, so I'll tell you mine. However, please keep in mind that I did not get a shunt until I was 40 years old. Up until the age of 39, I lived a completely normal life and had no idea I had hydro. But that year, I began having severe headaches, especially upon rising in the morning, accompanied by nausea, confusion, memory lapse, extreme pain behind the eyes, and numbness and tingling in my extremities. I finally went to my doctor after a co-worker of mine was diagnosed with a brain tumor and had had some of the same symptoms. My doctor thought I was having migraines, but ordered a CT scan to rule out anything else. Well, that's when the hydro was diagnosed. I was referred to a neurosurgeon who refused to take my case, saying it was the worst case of hydro he'd ever seen and "he wouldn't touch me with a 10-foot pole." So back to my GP, who referred me to a neurologist, who ordered MRI studies, then referred me to a neurosurgeon. It was his opinion that a shunt was the answer, but shunts were not his specialty. So I was referred to another neurosurgeon who does them frequently. He operated on me on 12/29/93 and I have had the same shunt ever since--15 years! Of course, being an adult, I do not outgrow mine as your little grandson will. But the good news is that I have not had any problems with my shunt (knock on wood!). I've only had one episode about 9 months after surgery where I felt like I might be having some problems. The surgeon tapped my shunt and sent the fluid off for analysis, which came back negative for any infection, and ironically, as soon as he tapped the thing, I felt better! Since then, I have moved several times and no longer live in the city where I had the surgery. I saw a new neurosurgeon in the area in which I now live back in 2000 for a "meet and greet," just so I would be established with a doctor in the area, should I have problems. He checked me out, said everything was fine, and I didn't need to come back unless I had problems. I am now 55 years old and since having the surgery have felt great, until last year, when I was diagnosed with anal cancer. Up to that point, I was very active, running and weight training, and in very good shape for a woman my age (or so I thought!). I underwent 6 weeks of chemo and radiation for the cancer, which concluded in September, and I have gradually gotten myself almost back to my pre-cancer level of fitness and strength. Fortunately, my cancer is currently in remission and I am feeling very good.

My point in telling you all of this is just to let you know that people with hydrocephalus can live full and productive lives. I do not currently work, but I am active in volunteer work, helping to build homes for families in need. I climb ladders and do all the things that anyone else can do. I do not feel that I have any limitations because of the hydrocephalus. I hope this gives you some encouragement that your grandson will also have the same great results that I have had. I am keenly aware that at any moment that all can change, but I take it one day at a time. Cancer has taught me the importance of that!

Before I close, I will mention that if you go to Amazon.com or Barnes & Noble.com and search for books on hydrocephalus, there are several very good ones you can get and learn much more about this disease. And, I would highly recommend that when your grandson gets to school age, that a book on hydrocephalus be your or his parents' gift to his teacher, so that he/she can learn more about the disease and what signs to be aware of which might indicate a shunt malfunction while at school. This is a very good idea, and one which I wish I could take credit for, but I can't! I heard someone else recommend doing this, so I am just passing it on to you.

I hope you will post on here again, once your grandson has his surgery, and let us know how everything went. I wish him the very best.

Martha