Dandy Walker at 30
Hello, I am Céline, I am french and 30. I had a DW but I knew that for 2 months…
I have been suffered from dizzy spell, loss one’s balance, i got tired very fast, …… In fact, I have got the symptoms for 2/3 years but as I always got headaches, my doctor said many times that I was too nervous. When I was young, I played piano, ballet, i passed my master.. But now, I can’t. Is there anybody in the same case ? Someone who discover adult that he got a DW because one day, he got symptoms ? The symptoms can increase ? Thanks for your help
Hello, I am Kara. I am american and 34. I was diagnosed with DW at the age of 5 months old. They put in a VP shunt then. After that I had to have a revision at 5 then I didn’t have any problems for 13 yrs. I started having severe headaches when I was a junior in high school and my doctors said I was having miagraines like my mother and brother. Then two years later I got very sick with the headache and vomiting and dizziness and double vision. My mom and dad took me to the emergency room and the neuro-surgeon on call took a CT scan and a shunt series and found that cyst had doubled in size and that my tubing was disconnected. He did emergency surgery and reconnected my shunt but, didn’t give me a new shunt. So, 3 months later I was back in the hospital and had to have another surgery because my shunt had started malfunctioning. Then because of not knowing what pressure shunt I needed I ended up having to have more surgeries. Then in 1997 they found another cyst in front of spinal cord. So, they had to hook my shunt up to that cyst. I kept having surgeries trying to find the right pressure shunt. Then in 1999 a doctor from Germany came and brought the programmable shunt. She put that in and I thought my problems were over except for the other diseases that have come along with the DW. Until I got the staph infection from the surgery. Ended up in neuro-ICU for 3 1/2 weeks. Then in 2004 had to have another surgery because the shunt kept on loosing pressure. The doctor sent the shunt off for diagnosis and there was nothing wrong with the shunt. I kept telling something wrong she didn’t believe me. I found another doctor last year and he found what was wrong, my tubing was disconnected. I had to have surgery again. That was number 15. And this past September I had to have a hysterectomy. My doctors said I have the worst case DW they have ever seen. I don’t know. But, I don’t want anybody to have this disease our pain.
Did either of you experences problems with emotions or lack of or really bad anger. kara have you needed any rehabilitation since you have had 15 surgeries i have had 7 and someone told me after 12 you need rehabilitation
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