Normal hydrocephalus. Is Mom too far advanced with Alzheimer's to research this? Should I get a second opinion?

My ex husband had a large fluid area that displaced most of left brain chamber. What remained was a sliver. We learned of this when he was in his fifties. This had been present since birth. He had been able to get a Master's Degree in Social Work. He had very limited abstract think ability. His people skills were excellent. After a minor head injury and the placement of a shunt, he did not recover fully. He became discouraged. Was never able to return to work and began to lose the ability to live independently. He died in 1015 at the age of 79. The shunt did relieve headaches and did not appear to have harmed him in any way.

If you want to do this, not sure "she is a fall risk" should be a concern. People fall no matter where they are....at home or in assisted living. Just have some help getting her in and out of the car and have a wheelchair for her to be in otherwise. When you get to the neurologist have people help you there as well. I would imagine you will be fine.

I see your update that she is close to Palliative Care. I don't know that I would consider this surgery at all in this circumstance. And I wonder what improvement the "experts" are telling you could be possible?

rancks10: She should see a new neurologist, who could repeat the M.R.I. and go from there on his or her recommendation. As she's already been dx'd with Alzheimer's, she should be seeing a neurologist routinely. Sadly, dementia does not 'reverse' or get better.

Wether or not a stent is worth doing she has been diagnosed with Alzheimer’s/Dementia and should be followed by a neurologist anyway in case there are medications or things to learn that can be helpful along the way down this journey. If she had the MRI recently they won’t need another one and if it’s been a while the new neurologist may want one so they can see how, if and where things are progressing. You can always decide another MRI or any other test just isn’t worth it too but you can’t do that until you hear the reasons for doing it from the neurologist so you can weigh the pros and cons. Now having said all of that she has dementia so she isn’t going to be “cured” and while some things might improve don’t get your expectations too high. Also not all neurologists specialize or are as versed in geriatric issues as others, they can of course all care for dementia patients but may not have a true particular interest in it. It doesn’t sound like there is a choice in your area but often a neurologist might diagnose and say this isn’t really my expertise and I’m happy to refer you to someone who is more on the cutting edge of this area if you prefer. Either way there is no harm in arming yourself with knowledge as you have and being more assertive,

You probably are holding out hope for the impossible. If she is that frail, she may not qualify for surgery.

However, if it will ease your mind to get a second opinion, then do so. A decent Dr will tell you if it’s worth looking into or if she’s too frail to handle surgery.

Dementia often makes loved ones keep looking for a cure, or something to make things better. Sadly, there usually isn’t anything.

How would you feel if a Dr told you it’s too late for her now, but a year ago it may have helped her. Seeking answers won’t necessarily make you feel better.

Do what you feel is best for her in your heart.

My mom (now 92) was erroneously diagnosed with, and treated for, Parkinson's disease for two years before being properly diagnosed with Normal Pressure Hydrocephalus (NPH) in 2007. (FYI, its called "normal pressure" because a lumbar puncture/spinal tap will generally show normal cerebrospinal fluid pressure, despite the pressure of fluid on the brain ventricles that causes its typical triad of symptoms: gait disturbances, cognitive decline, urinary incontinence.) She had a shunt implanted and it almost immediately reversed her balance and mobility problems. She got several more "good" years out of this procedure and I'm so glad we did it. Having said that, she did not have significant cognitive decline at the time. The test they use to determine if a shunt will be helpful is to draw some fluid via lumbar puncture and see if symptoms noticeably improve (they do this in the hospital, usually same day or overnight). As symptoms progress, they can adjust the shunt externally with a magnet so that it drains off more fluid (and that's just a 2-minute procedure in the doctor's office). We did this a few times as I noticed her symptoms worsening, but otherwise there were no further tests or imaging studies needed. Based on our experience, I would encourage you to get a second opinion. Best of luck to you and your mom!

If you or insurance can pay for it and she is up for it then go for it. Even if you’re 99% sure nothing can be done it’s worth a try. Only downside is the possible emotional devastation when they all agree that nothing can be done.

No harm in getting a second opinion, and I doubt she'd be worse off if a shunt was put in.

I'm not a big fan of putting older people through a lot of tests and surgeries, but this sounds like it's worth exploring because it could improve her quality of life.

I would consult with a Neurologist about quality of life issues.........if we restore a life with one procedure, can we offer years of good health or will our loved ones live longer with all their ailments? This is why I wear a DNR bracelet.

Eventually, the car breaks down and we're faced with giving up or reinvesting in what is left. Do we repair the brakes when the engine needs replacement?

My mom had hydrocephalus diagnosed in her sixties. At the time it was too advanced to install the shunt. My impression is the procedure is only available in early stages.

If she is up to it, I would definitely consider a second opinion. You may have to drive some distance but it may be worth it if she could be evaluated by a movement disorder specialist (a neurologist with advanced training). They have more experience with NPH (Normal Pressure Hydrocephalus) patients. Parkinson's Disease has often been misdiagnosed as NPH and some PD patients develop Parkinson's related dementia. Again, it may be some distance but may be worth having her evaluated by a neuro-psychologist who can better evaluate the symptoms as they relate to different types of dementia. There may be nothing to help bring her cognitive abilities back but there may be more appropriate treatments to help with various symptoms she is experiencing. Too many times folks are diagnosed improperly with Alzheimer’s and are not getting the best treatment. If she is up to it, definitely at least consider the new neurologist who may be able to answer your questions as to why or why not it may be NPH.

You don't give your mother's age. We use a geriatrician and she explained to me that with my husband's condition (he is 75) many procedures that may be recommended are no longer appropriate for him because of all his health issues. So she often asks me, if we do the test and it is positive... what would we do differently? Right now he has a hernia and the cardiologist won't clear him for any surgery with general anesthesia ever again unless it is life threatening emergency. The surgeon said for the surgery, he needs all the muscles relaxed and will not do it with any other type of anesthesia. My mother (at about 60) had been told the same thing but later required surgery for an aortic aneurysm and while it was hard on her, it saved her life and she lived about another six years. So my heart goes out to you as you make caregiving decisions, but know anything you do out of love for your mom is never wrong.

Absolutely would do everything possible to help her. Do whatever it takes to see if her condition could be reversed.

She would need an up to date MRI. A shunt is not a once-and-done. She would need follow up appointments and MRIs of CT. Here are more negatives...
Loss of function may not come back
Shunts are done for severe conditions for lots of fluid frequently associated with reduction of consciousness
Shunts can slip out of place and require surgical revisions.

I doubt that you will be successful finding that this can be done.

Momma was diagnosed with Normal Pressure Hydrocelpes about four or five years ago. She did have the shunt operation and was only in the hospital overnight. It did help with her incontinence and gait but not very much with her cognitive. A couple of years alter she fell in her house and suffered two hemotomas one on each side of her brain. At that time the er Dr's said they noticed some dementia from the mris. She will be 89 this May. I am glad we did the shunt surgery because I do feel like it improved her quality of life. Of course she has had other medical problems that have arrived since but the surgery only lasted 45 minutes.

If the MRI was done not that long ago, maybe like said, the Dr. Can review it. Would not hurt to run this by a neurologist. You will need him anyway if she needs medications. I would not put that into the hands of a PCP. They know a little bit about everything, and a lot about nothing.

Someone else asked this same question within the last couple of days. I said then a woman from Church suffered from it and had a shunt. It did not reverse her problem and it didn't cure it. She worsened as time went on and ended her days in LTC because her 80 yr old husband could not care for her.

"Normal pressure hydrocephalus can sometimes be treated with surgical insertion of a shunt, a long, thin tube that drains excess CSF from the brain to the abdomen. Surgery is most likely to help correct difficulties walking, but thinking changes and loss of bladder control are less likely to improve."

My father-in-law had hydrocephalus, had a shunt put in, and it did *not* reverse his cognitive decline but it did improve his balance. He had the shunt put in when his cognitive decline/dementia was mild; it's moderate now. And last year, we saw another big decline in his cognition and memory, which increased his anxiety.

That said, I'm not sure what you have to lose by taking her to the neurologist, having him review her MRI, and asking him about a shunt. Explain that she won't lie still for another MRI. I think it's worth investigating. Just manage your expectations.

I would go to the dr with hope, but not raise my hopes too high.

The brain 'dries out' as it ages, and the space is filled with cerebral-spinal fluid. This can cause too much pressure on the brain, but in normal situations, it's not really a problem.

My son had a epithelial cyst in his brain following a 2 year church mission to Brazil.
He had massive migraines almost constantly and the only thing that helped was to have a spinal tap with amazing amounts of excess fluid drained off. Eventually he had a surgery, which removed the cyst. The dr said he would ALWAYS have this huge 'space' in his brain, but was proven wrong as his young brain recovered from the surgery. No signs now of anything wrong.

A year later he had a shunt implanted in his brain and he has been fine since. He was 22--so youth was in his favor.

I hate to be a negative Nellie, but probably the BEST you can hope for is a slowing of the dementia and perhaps a return of some cognitive function.

The good news is, the shunt surgery was a one night stay in the hospital.

It's a LOT to put an aged person through and while I sure admire your hopes--please don't get too excited about this being a 'cure'.

Also--if tests are grueling for her to endure, be sure the drs know that and can offer her meds to help her be calm through any procedures. Be her advocate.

I truly wish you luck. Wouldn't it be great if this were truly a big change in her life.

Go to that new neurologist. He or she can access all prior tests.

Hydrocephalus: Causes, Symptoms, and Treatment (webmd.com)

Your post taught me a new term. I could not see how hydrocephalus could be "normal" but indeed it is a "thing" not uncommon to some older adults. Information below is from of webMD: