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NPH is a tough road.

Brain & Nervous System | Last Active: Apr 23 1:18pm | Replies (48)

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I was diagnosed with NPH in my 40s (very rare) after feeling like I was progressively losing intelligence for years with no diagnosis, then finally starting to fall down, which finally lead to testing and the diagnosis. I got a shunt, which sounds scary, but it saved my life, my sanity and most of my mental abilities. Getting a shunt stops the damage. There really is no alternative, but it only SEEMS scary because it is close to the brain. They do have to put a hole in your skull, but only enough to drain the fluid. It’s not like other kinds of brain surgery where they would be doing surgery on actually functioning parts of the brain. The surgery merely allows the fluid to drain away and stop compromising the brain with pressure. And the shunt is magnetically controlled, so it can be adjusted later without further surgery. (You do have to stay away from magnets, however. For example, if you ever need an MRI for anything, you have to get your shunt reset immediately after. And don’t get a cover for your laptop—even the small magnet that holds a laptop cover shut can screw up your shunt if it got too close. Mine did. And don’t get that fancy new induction stove—that could affect the shunt, as well. Thankfully, we figured that out before buying one.)

Unfortunately, by the time I got the shunt, my brain was permanently damaged and some of my mental abilities continue to be compromised. I describe myself as having “swiss cheese brain.” Some things improved, and some things I had to relearn, but I still have “holes” in my abilities. I can’t do math, for example (I had been in the top of my class in school). Your husband may always have some functions that don’t entirely come back, but many should improve with a shunt, and once he is stabilized he should be able to relearn some, and figure out how to “work around” those that are permanently damaged. He may never get all of his abilities back, but at least once stable, he’ll know what abilities he has to compensate for. You may have to take the lead in some areas of life, or hire a professional in some areas. (My husband does all financial math and other math tasks—I just know my brain won’t do it, so I’m OK with relying on him.)

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Replies to "I was diagnosed with NPH in my 40s (very rare) after feeling like I was progressively..."

@again Thank you for…I was diagnosed in my early 50s, but the symptoms began in my early 40s but doctors could not figure out and told me it was just aging. I finally went to Mayo and once I got my shunt, I got my life back. I am still having cognitive issues, and some gait issues too, but not as bad as it was. I appreciate your thoughts of what to watch out for and avoid. Good information. It has just been a year since my implant and I am still maneuvering life with a shunt, am I overreacting when I feel like something is wrong. I wish there was more information discussing when to go to the neurologist or is there such thing as having to have a yearly checkup? Questions I have….Thank you. Again, I appreciate your thoughts. I am not one to seek out medical help when something seems off.