Connect
← Return to I have NPH and am awaiting shunt. Looking for peer support.
Discussion
I have NPH and am awaiting shunt. Looking for peer support.
Brain & Nervous System | Last Active: 1 day ago | Replies (11)Comment receiving replies
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…
Replies to "I had my shunt almost 4 months ago, at a renowned hospital associated with an Ivy..."
@meagroth read your message and was struck by the fact that you’re a health care professional and yet you’re experience sounds like my daughter’s. My 54year old daughter has been diagnosed with NPH and has had all the testing for a shunt. We thought a world class hospital etc would be the answer, but found there is no NPH guru. There are so few shunt placements there aren’t top specialists. It seems it’s about the 5th or lower sub specialty. We’ve had to do all the research ourselves. We weren’t told that a general surgeon will do the catheter not the brain surgeon who will simply do the shunt. We had to ask the question. There’s been no discussion about possible catheter migration or displacement. Or BMI and catheter issues. Or strenuous exercise.
My daughter has preexisting seizure disorder. Can’t find research except pediatric and surgeon didn’t address issue of possible increase in seizures. It’s been a frustrating and lonely road. She’s in physical therapy trying to get in best shape she can before surgery. Thank you for sharing your journey. Best wishes for the best outcome. Please post updates. My daughter listens to the hydrocephalus monthly meetings to hear others’ experiences.
Connect
@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.