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Chiari Malformation type 1

Brain & Nervous System | Last Active: Apr 6, 2023 | Replies (146)

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@david33

To everyone out there who has Chiari Malformation of any kind, please do research on the disease and see if the surgery is right for you and your family. Ask lots of questions, and demand answers.

We didn't and here's my post of why we should have dug deeper and got answers, instead of listening to a doctor who likes and has a Gods complex.

My husband who is now 37 had his first surgery at age 33. The shunt stayed in his head for 6 months and became infected, and he had to take really strong antibiotics to get rid of it. Once the infection was gone they placed another in his head, a couple of months went by and his mood started changing towards his family. He had to get that one replaced because it stopped working and the doctors claim that's why his attitude changed, but when he had it out I had my loving husband back. Now he has another one in and his attitude is worse now than before. He has pain and itching at the site area, and the doctor will not listen to the stress I am going through as well.
Everyone might think I'm being selfish or insensitive about his pain. I would love for him to be pain-free, and to be the loving caring man I know he is but this thing (shunt) that's in his head has really changed him, he has no regret or remorse. At times, he doesn't treat or look at me like his wife I'm more of a stranger to him.

Now I'm waiting for his doctor to contact him for further testing before I call a Lawyer to see if I can force the doctor's hand.

My husband doesn't remember exploding, or how he treats people, and when I try to explain he starts crying and says some crazy things like....."I want to leave him, or I'm treating like a baby," and a lot more. My husband needs help with this shunt to see what its truly doing to his brain, we (wife and step-child) needs help with the stress we are going through due to his mental change.

Please, please get answers for all your concerns, before you think about doing any type of surgery.

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Replies to "To everyone out there who has Chiari Malformation of any kind, please do research on the..."

HI, @david33 - thanks for sharing this experience you and your husband have gone through. Sounds very difficult.

I've moved your post here where you've posted before about chiari malformation, to update the members here and provide a place where a number of members are discussing this condition and can provide input and support.

Have you had the chance to get a second opinion from another medical center on how your husband has done with his shunt? Or, has the social services office of your current hospital been of help to you in this process?