NPH (normal pressure hydrocephalus)

Posted by The Good Wife @thegoodwife, Aug 7, 2012

My husband had a note from an interventional radiologist in Dec that he had enlarged ventricles – our neurologist had some consulting – but thought he was within the normal range. In Feb. he had a open AAA surgery – in April, he had a nasty fall with a concussion – has had gait and mobility problems ever since. Now a neurosurgeon suspects he has NPH (fortunately not Parkinsons). On Fri. we have a MRI with a flow study.

A shunt is the usual solution. Any words of wisdom? Am very concerned about more trauma to him – he doesn’t have incontinence or dementia. It would be fabulous if he could walk and drive again.

Many thanks for any help you, all can give.

The Good Wife

@Erinmfs

Hi, @joanmahon I'm here! I can describe my situation if you find it helpful 🙂

The NIH told me I had acqueduct stenosis and prominent ventricles at a research study. NIH told me I had a significant amount of water on my brain. Recommended that I consult with a brain surgeon. From there, I went to Mayo Rochester. The brain surgeon wrote 'clinically insignificant hydrocephalus' in my EHR. Neurology said that they found the acqueduct stenosis, but that it was considered 'normal'.

Rochester Neurology also said I wouldn't qualify for a shunt until I failed the Mini Mental Status exam (diagnosed with dementia) and/or I was shuffling my feet (impacted gait).

Good luck to you! Wishing you health and wellness

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Hi Erin, apologies took me so long to see your kind message. Yes, your message is helpful. Seems to me that sometimes there are conflicting diagnoses (NIH and Mayo), which produces even more worry. I do know that tests have to be conducted to see if one is a candidate for a shunt, and from all my readings, a shunt may also cause a number of complications once inserted….so nothing is a perfect solution to NPH, seems to me. My own complication is that I also have Adhesive Arachnoiditis finally diagnosed in 2010, and current symptoms of NPH can also be signs of progression of AA. I am so looking forward to my first evaluation appointment next week at Mayo. And efforts to tease out both neurological conditions. NPH has treatment, AA does not. Thanks for writing, Erin. I learn so much from everyone.

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@thegoodwife

I just received your post today. The cure for NPH is a brain shunt – this
allows for controlled drainage of the buildup of too much cerebral spinal
fluid in your brain and causing pressure resulting in difficulties starting
from your feet up. As the pressure builds up the problems ascend up your
body until you have symptoms like dementia. Once you get your shunt, your
neurosurgeon will open it at what is thought to be a safe starting point –
you will notice that you are less sleepy and more able. As you start to get
to the right setting on your shunt, you will get back , as close as possible
to your original abilities. Just as the disabilities moved up your body,
they will decline in the same way. You will not need any meds – just the
shunt – I would encourage you to see a neurosurgeon, ASAP. This is
something that is fixable.

Our personal problem is that the shunt we have is almost completely open and
we are about 85% and wish to be 95%. But we are significantly better than
before the shunt. And we are very thankful for that.

Hopefully this will help you – best wishes for that.

Fay

A smile is the lighting system of the face,

the cooling system of the head and the heating system of the heart.

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My husband has the same issue, it started when he fell 15 feet six years ago. Now his shunt is open all the way and I'm very concerned about all this. What happens now when the shunt stops working would he go through a different surgery or is there more that can be done.
The doctors will not talk to me because I exploded on them.
(My story)
My husband was fine when I married him. He would get nose bleeds when the season changes, in 2005 or 6, he got his nose operated on and stopped his nose bleeds, this outcome caused very bad migraines and he started to pass out. The doctors gave him migraine shots which seemed to help at times. In 2013 he went to work, he told me that he was feeling good and that his migraine was making it hard for him to concentrate, I told him to leave early and contact his doctor. He said no that he would be fine.
20 minutes later I get a call stating that he fell 15ft and that the only thing that was wrong with him was a cut on his right side of his head.
Between 2015 to now (can't remember the dates sorry) he went through brain surgeries.
The first surgery was on his neck, where the doctor told us was scar tissue, and they had to remove this for the swollen cerebellum to have room, the tonsils were also coming down to inter his spin to stop the fluid to flow. I told the doctor that he shouldn't have moved the full scar tissue cause now they opened the dam and the fluid is rushing through with nowhere to go but to flood the brain.
When they placed the 1st shunt everything was working fine until he started to change about what he felt about himself and didn't want to do anything but complain. (6 months) They replaced it with a new one. The 2nd shunt became infected and they wanted to put a new one in while the infection was still there, and I said no that he can have the new shunt when the infection was gone.
(This is where I'm against the whole shunt thing) Before they took the infected shunt out, my husbands whole attitude about me as his wife had changed. He didn't want me anywhere near him, he told me that I was trying to kill him. I ignored him and when the infection cleared and they put a new one in, his attitude towards me has gotten worse. I couldn't pick on him or even go places with him without him exploding on me. (This shunt decided to stop working)
Now, this is the last programmable shunt, he can only go through MRI's in Pittsburgh because no other hospital has the machine to reprogram the shunt.
I can't joke, share my problems or concerns with him. When my daughter (his step-daughter) got pregnant he did everything for her. In my mind, he was acting as her husband/boyfriend and when I tried talking to him about it he said that he was being nice and he wasn't doing anything wrong, months went by his attitude got worse. We went to the doctor who put in the shunt and found out that the hose that ran behind his ear was closed off so he had to go through surgery to replace it. I told the doctor about his attitude and if they could place the shunt into a different area because I couldn't handle his mood swings. The doctor laughed and told me that I should leave my husband alone and not talk to him.
Now, he had to have the shunt open wider, he's repeating himself, he has no common sense now, and my feelings as a wife doesn't matter and the doctors will not listen to me at all.

If things don't change, the next step for me would be a divorce. I love my husband I truly do, but I can't handle the attitude from him, and the doctors won't listen, they call me the whining female.
Is there anyone else going through these issues of the shunt or is it truly me?

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One option to anything physical is to wait 6 months (If the situation allows it) Brains are blessed with a special gift that is not full understood. Some adjacent areas have cells similiar to the affected areas. If you can advertize for a physical Therapist who knows the Maggie Knox's book"Proprioceptive NeuromuscularFacilitation Techniquws. with diagonal re-forcement, the technique is special for RECRUITMENT of additional pathways to establish normal motions.(You guessed it? I was an old time physical Therapist before sports medicine).BUY THE BOOK but what do I know? I'm only 90 yrs old with 40yrs of physical Rehabilitation. Reflex Inhibition of tonic necbk Reflexed may be necessary. Inhibition, followed with posturing and pulling off balance for reflex stepping can be helpful. Regular ranges of motion and re-ed are always part of a standard. No technique is good without using all resources of rehab. Even, eventually health gym with specialized strengthening , agility, balance and co-ordination. What age???No such thing. Regardless of what you do, the brain itself with heal but more so with a challenge. Age is only a matter of tolerance. Hope this helps. Study, become in formed.

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