Struggling with VP Shunt and Lack of Understanding

What’s going on that no one gets? We might b able to relate. Try a Facebook group for hydro, I have chiari too and I love my chiari group they are super supportive and tons of people understand what I’m going through and have suggestions for how to handle it

I find that guys lose interest when they know i have a shunt 😒

Same

I feel that so much. Some days it can be a struggle and no one seems to care.

Oh wow I’m sorry you’re dealing with this. I didn’t get a shunt but opted for the brain surgery etv for my hydrocephalus and it has really helped. I still get headaches, brain fog & etc, but no more feeling like passing out or dizziness! I hope you get better soon!!!

Oh sweetheart. I'm so sorry. I had a VP shunt from the time I was 5 months old until I was 26. At which time, I got a "3rd ventriculostomy" and the VP shunt was removed. That was in the year 2000. I grew a very large pseudotumor, and in 2003 surgeons attempted to remove it, resulting in 2 (of what should have been fatal) brain bleeds. The fact that I even survived is nothing short of a miracle. I did end up having a very small shunt place so that my ventricles could communicate. The distal end was directed down a Stent that had been placed. Prior to this time, I had dozens of shunt revisions from the time I was 10 until I was 29. I had 2 quite serious cerebrospinal fluid infections. 31 major neurosurgeries. Thankfully and miraculously I have not had to have a neurosurgery in 19 years! I am often overwhelmed with how blessed I feel. Please don't assume that because I've not had neurosurgery for near 20 years, that I have been problem free. Absolutely not. However, I am incredibly thankful not to have had this kind of neuro problems. God bless you!

You are not alone! It's something most people just don't understand. Finding a community of people who understand appreciate you for who you are is really important. We aren't any different than others because we have a device in our brains/bodies. We may actually be more unique in a good sense 💕 screw people who don't listen or try to understand. They aren't needed.

I know your pain this last malfunction I had I put my foot down and said enough is enough. I told the people at the hospital that they are going to listen to ne and not what the books say