Hydrocephalus due to surgery

For those have gotten hydrocephalus due to the decompression surgery, how bad is it or how big of a hassle is it to manage?

Hi,

I had hydrocephalus after my PFD surgery. They ended up putting a VP shunt in my head that drains into my abdomen to help with the extra CSF and to get it to flow right. It's not bad. The surgery for the shunt was easy and I have had no trouble with it. I've had it for 2 1/2 yrs now and nothing has been wrong with it.

Carla

Johanna,

Are you having surgery soon or have you already had the surgery? What type of problems are you having? Have they mentioned to you that you have hydrocephalus? Just wondering what is going on. Let us know the best way to support you right now!

Love,

Carla

I haven’t had surgery yet. I’ve been toying with the idea…especially after being on here and seeing what other people have said about it. I’m on anti vertigo meds right now…I hate them. I learned about the hydrocephalus from people on this website. My main symptoms right now are headaches, dizziness (which is the worst), trouble balancing & swallowing. It seems to be getting worse. Sometimes I wake up in the morning and the side of my head that I’m on is numb…I’m assuming from the lack of CSF flow. I have an appointment in July so I’m going to talk to my doctor about all of this more in depth.



Carla Jo Stone said:

Johanna,

Are you having surgery soon or have you already had the surgery? What type of problems are you having? Have they mentioned to you that you have hydrocephalus? Just wondering what is going on. Let us know the best way to support you right now!

Love,

Carla

Thank you Abby! I just wanted to find relief…even if it’s only 80% from where I am now. You understand…I hate feeling the way I do.



Abby said:

Johanna,

sometimes folks develop hydrocephalus after their surgery. Your NS will know what to do, and advise you in the managing part. Praying for you honey.

Love,

Abby