Life with Normal Pressure Hydrocephalus

Thank you everyone for telling your stories and sharing your experiences here. Now I know I am not alone.

I have NPH and the symptoms are quite severe. Trouble walking, falling, loss of manual dexterity, changes in behavior, etc. I saw a neurologist in 2013 and another in 2017 and both failed to recognize the problem, even though my enlarged ventricle were quite obvious on the MRI. After doing my own online research, I realized I must have NPH. Like Maureen, all my doctors were quite dismissive. "Come back in a year and we'll see how you're doing." I finally told my neurologist that I knew I had NPH, and he made an appointment with a specialist. I had to diagnose myself to get an appointment with the Hydrocephalus Clinic! I had to fight against incompetence and indifference for 7 years until I finally got the possibility of having a spinal tap and a shunt!

I just had an Endoscopic Third Ventriculosomy done to treat mine. Seems to be working great. I am really glad I was able to have an ETV over a shunt.

My husband was diagnosed with Alz and was told there was nothing to be done. Then neurologist saw him and ordered an MRI which showed enlarged ventricles. He is to have a lumbar puncture and PT evaluation. I loved hearing your story. It has given me hope. Thank you

Thank you so much I to have NPH, i am 69 and never had any problems our stories are almost identical. Initially neurology dr’s said i had Parkinson’s however after several tests my diagnosis wad finally confirmed NPH. I had a shunt pit in and when I woke up from surgery i was able to walk to bathroom on my own with nurse beside me. When I listened to your talk i was so taken aback it was exactly how i felt and what i felt like. So thank you. Appreciate your bringing this subject to light.

Your story taught those medical practitioners to be aware and reevaluate patients for the probability of nph, great

Thank you for the clear and friendly presentation ! Your work for making people aware of the possibility of having a hydrocephalus is precious and important . There can be different reasons , like the c - vac. It makes me happy , that you don't give up . Greetings and love from Shanghai ! 👍🌻🌍

Thank you for sharing your story. I can't say enough how little faith I have in most doctors. They seem to put you in a slot of what MOST people have. Forget about thinking outside the box. I have a skull base CSF leak. They are all for surgery when they can't even see where the problem is. Their thoughts well if that doesn't work we will do another surgery. Thank God you are doing good now. God Bless!

I am 28 I have hydrocephalus since birth. I am experiencing a decline in memory, speech, vision, hearing and balance issues and what not. I know it's my shunt malfunctioning but they don't know that and so I wait until someone listens like you. The 2 CT show little increase in ventricle size but not much. The x ray looked good I was told. Idk why I don't get a copy of the scans I want to see my body. Anyway God is good he's bringing me to him through this and I'm so glad he gave me this. I'm sad and anxious and depressed due to the pressure in my head causing mood swings and this vision issues but with God honestly Its all good! I get a peace from God that's so calming. Your so inspiring Marureen, thank you for sharing your story. God bless you and I pray you good health and happiness.

Thank you Maureen. I have NPH and a shunt for a year thanks to wonderful medical care. Your presentation is faboulous and I find so reassuring. I know it will help many many people. Thank you and God bless you.

Thank you so much, I was diagnosed in my early 40s, I used to bend over and walk and always walk to the left and hit walls and door ways, I was covered in bruises. I lost my short term memory and after a while My long term memory. I woke with a head ache every day. I had anxiety and depression and was always told I was just mentally ill. I was a doctors every week for help And it took years before I got diagnosed. 6 months later I was unwell again and a spinal dural AVF was found and I had spinal surgery another serious illness that effected my poor brain.

Thank you so much for this story!

My mom is having the same symptoms, thanks for sharing the video at least we have an answer now 🙏💯🙌

Thank you so much for sharing, I’m having a shunt inserted next week your story has cleared so much up for me and made it all clearer

Thank you for sharing your story ❤️

You're amazing, thank you, my friend was just diagnosed and he's so depressed. I'm not sure what to do. I was looking to educate myself on YouTube. Thank you.

very well done!

Thanks so much for this, all the way from the Caribbean

Hi, I would just like to say story on - Life with Normal Hydrocephalus was great. I have had Communicating Hydrocephalus since I was born and I am 55 now. Since I was born i have had to get it replaced because of growing up the tube isn't long enough. Then there was a few cases along the way where it would block and I would have to get the tubing replaced. I haven't had to get the tubing replaced since 2003. Once again, thanks for telling your story.

I was recently diagnosed with NPH my doc don’t seem to be very concerned at the MRI report but he referred me to a neurologist which am waiting to see by the end of this year.