Mom is going in on Tues for NPH test. I'm confident that she is well into AZ (Stage 5)and due to shrinking brain now has 'water on the brain'.

What comes after the test and before the shunt? What if we don't have the shunt put in? Does anyone know what I can expect from the NPH test? Her MRI showed possible NPH/vascular blockage and possible tumor.

She is still pretty spirited for her age and in (ohterwise) good health. No awkward gait but yes on the dementia and incontinence. So is there a VERY fine line here? I was all prepared to move her to a secured memory impaired living facility. Now we have this 4 day procedure and she still can't remember 5 minutes ago.

I'm stretched so thin at the moment. Just when I thought I had a good solution for her care...(and my sanity)...

I have read so many downsides to the shunt and am told it won't do all that much. Certainly is no cure.

Anyone out there been through this?

Thanks.

ttt

First you must know the cause of the dilation of the ventricles and how much fluid is there and if a shunt actually WILL make a difference or even if it is warranted if this is secondary to a tumor.

Once you have an actual diagnosis, you need not make your decision that very day unless it turns out that intracranial pressure is increasing to the point that a sudden decision must be made. That scenario is unlikely.

You will be able to make a consultative appointment with your Neurologist and discuss in-depth the cause for what is happening and what the various options are and ask for concrete data in percentages regarding outcomes, longevity and impact upon quality of life.

Discuss the ramifications of taking such an action and what the complexities are. Sometimes tumor removal causes further damage to other areas with loss of function. Shunts do not always remain patent, (stable), and tend to have other issues requiring further interventions; often more than once.

Do go into any discussion armed with information. The best way to do this is to Google the diagnois; NPH or type of tumor and where it is situated. This will give you a baseline of understanding from which to ask questions.

If this turns out to be NPH and they expect marvelous results with return of function; that is one thing. However, if the tests indicate severe problems and the results may not be very positive, then you have the option to NOT go forth with brain surgery or radiation, etc.

At that point, then Hospice could enter the picture.

I wish you the best and hopefully this will have a positive outcome. If you decide not to pursue something that would negatively impact upon your mother's life for the time she has left, and you know how your mother felt about such things; then it is perfectly appropriate to proceed in whatever direction that leads you.

Please let us know what is happening and how you are. We will be thinking of you.

Hi Barb,

We have been through the whole NPH deal with FIL, his first symptoms was his gait that because worse and worse, so much so just going to the bathroom because an ordeal. He has had a shunt in place for almost a year. They first did an MRI, then they did a Spinal Tap and removed a preset amount of spinal fluid to see if it would improve his condition. The one thing I have learned since the procedure is, I wish we had seen the neuropsychologist first as it turns out he not only had NPH, but Alz and some Dementia according to the test. I was there for the spinal tap and it was amazing to see his walk improve so much so fast. What I didn't know until a month after the shunt surgery, that the Dr who did the spinal tap actually took out to much fluid that not only put him at risk, but also gave us false hope as with the shunt his Neurosurgeon said draining the much fluid through the shunt risked collapsing his brain. But over all we are still happy as he can walk much better now then a year ago, unfortunately for his memory it has declined but now with different meds, adult day care, and excess stress removed from his life he seems stable for now. Would we go through the shunt experience again, yes we would as it has given him more mobility. I also will mention that the anesthesia also heightened his memory and agitation problems for a couple of weeks. I know the nurses were very glad to see me come in as for some reason I am able to calm him down 99.9% of the time. Oh yeah, one fun note was the night after the surgery, he was up and about with help from hubby and I and he trotted down to the nurses station and held an impromptu beauty pageant among the nurses, I couldn't believe they lined up for him (even if he was a sweetie at the time, or they maybe they feared upsetting him(LOL)). They one nurse asked who won, he said he couldn't tell because he didn't want to upset anyone and walked off. Good luck and hope if you do have the surgery, you have a great outcome.

Bear :-)