PSP and Hydrocephalus: Hi, I'm new here and... - PSP Association

PSP Association

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PSP and Hydrocephalus

Hukilu
Hukilu

Hi,

I'm new here and appreciate My husband has both PSP and Hydrocephalus. The hydro was diagnosed first, and he got a shunt in the fall of 2018, clearing up the symptoms almost right away (headaches, fuzzy thinking, incontinence, balance). Nine months later, I began noticing changes...first his gaze, then his big voice became a whisper, and he began to drool, incontinence came back. He was diagnosed with PSP in August 2019. On Dec 31, his shunt failed, causing his ventricular to expand to a dangerous level. He had two emergency brain surgeries in five days to fix the problem. He's now in a neuro-rehab facility. He can't walk on his own, can barely talk, and has experienced significant cognitive decline. I have neurosurgeons and neurologists at Brigham & Women and MGH scratching their heads, trying to figure out what's a result of the hydro/recovering from brain surgery and what's PSP.

Has anyone had experience dealing with both issues?

Thanks

10 Replies
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Thankfully, we didn't have to deal with both. However, the symptoms you describe are consistent with what my husband experienced with PSP. Also, sometimes it seems like PSP symptoms get worse after having anesthesia so you may be seeing some of that too. It's not uncommon to experience a rather sudden decline followed by a plateau with very little change for awhile.

Pat

Hukilu
Hukilu in reply to racinlady

It’s almost been a month and he seems to be getting worse

Something of interest...early on while trying to diagnose my late husband he too was, what they called "borderline hydro" but nothing was ever done about it. I remember at first thinking we had finally found his condition. As time went on he continued to advance in decline until he was finally diagnosed with PSP. But I always wondered about that earlier test he had for the fluid in and out of his brain!

Welcome to the site! I have no info on the hydro issues but what you describe sounds like PSP. Hopefully the doctors can come with a plan to deal with the hydro.

Ron

Today Ron had 3 min. of whole body tremors and is having a more difficulty getting out of bed. We’re still in rehab for another week. I’m nervous about going home. His decline since Jan 1 has been so steep

As well as Rehabilitation Therapy, you should probably see about Occupational Therapy. If you can attend those sessions it would provide some knowledge of how to better assist without injury to yourself. OT can also normally do a home assessment to talk safety and quality of life.

I didn't think someone could have both NPH and PSP, so I can't comment on the "what's what" question. But maybe the answer doesn't matter since you have to treat the person and symptoms before you.

Being in a hospital to have surgery, having brain surgery, and being in a rehab facility are never good for neurologically-fragile people. So hopefully little by little your husband can recover to his pre-crisis baseline.

Hukilu
Hukilu in reply to rriddle

Thank you! Your right about the trauma. I can’t wait to get him home.

Hukilu
Hukilu in reply to Hukilu

With nursing care!

i have nph and have been through a 3rd ventriculostomy and numerous shunt revisions.id be glad to chat with him.i am not sure what psp is ???

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