I have NPH and am awaiting shunt. Looking for peer support.

I have NPH and had shunt surgery 5 months ago.
I was misdiagnosed with POTS for a few years. MRI is the definitive test.
Last month I had knee replacement surgery - much more difficult recovery!

I’ve had 3 shunt adjustments and will return to the neurosurgeon after my knee is better. He holds a strong magnet machine next to your shunt and clicks it to change your setting - easy and non-invasive.

My urinary problems did not improve after surgery so I’m now taking Detrol.

I suggest getting super soft pillows like SquishMallow because sleeping on the shunt feels uncomfortable.
I’ve had no problems with the shunt - avoid metal detectors and be wanded.

The giant gauze head wrap does make you look like a cone head from SNL.
I’m glad you finally have a definitive diagnosis - that’s a major problem!
Good luck.

@janetbender
Thank you Janet, especially for the tip about discomfort with the shunt while sleeping. Wonder if you recall the months leading up to shunt surgery? Did you feel very tired and have poor sleep? It is making me quite discouraged at the moment.

I had my shunt almost 4 months ago, at a renowned hospital associated with an Ivy League medical school. I met the neurosurgeon once, via telemedicine. All other care was with NPs and PAs. I must say it was a bit disturbing to meet in person just before he cut into my head. I have had one adjustment. What I was not told (had to research myself) is that symptoms may flare again on and off afterwards. This can be precipitated by conditions such as bariatric pressure, stress, illness such as a cold. I had 4 straight days of return of gait disturbance, brain fog, apathy 2 weeks ago. Neurosurgery gave me an appointment for 3 wks hence, which to me, is outrageous.
I am interested in people’s experience with anesthesia. I received light sedation and woke up during the procedure- very scary.
As a retired nurse practitioner, I can’t emphasize how important it is to advocate for yourself throughout the entire process.
All the best…

@meagroth
Thank you for sharing your experience. I’m sorry you have painful feelings about the experience. I am also being seen at a recognized NPH clinic, but have been evaluated by a four member team. 2 MDs (Neurosurgeon and Neurologist ) and 2 PhDs ( Physical Therapy and Psychology). I do feel well cared for, but still uncertain about my feelings of extreme fatigue and poor sleep quality. I hope for any improvement and wish it for you as well. Thanks again.

@judithbi My poor sleep then and now is bec I have urinary urgency - NPH side effect.
Wake every hr to pee. 😢 I never feel rested.
I just started taking Detrol which helps a little, but knee replacement surgery is so painful I wake from that.
I hate complaining but it’s been a rough 5 months with the 2 surgeries.
Both surgeries were successful and uneventful, but the side effects are tough.
Next year will be better!

Thanks for response. Wishing you well.