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

A month ago I was diagnosed with NPH (normal pressure hydrocephalus). I take no meds; have neuropathy in feet aggrevated by chemo and radiation. Any hope for the NPH. Was always very active, but now can hardly walk. Very tired most of the time.

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@pedie

A month ago I was diagnosed with NPH (normal pressure hydrocephalus). I take no meds; have neuropathy in feet aggrevated by chemo and radiation. Any hope for the NPH. Was always very active, but now can hardly walk. Very tired most of the time.

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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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@pedie

A month ago I was diagnosed with NPH (normal pressure hydrocephalus). I take no meds; have neuropathy in feet aggrevated by chemo and radiation. Any hope for the NPH. Was always very active, but now can hardly walk. Very tired most of the time.

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I have an appt on Thursday with a neurosurgeon. Thanks for your reassurance that it will get better. I have been so dragged down by all of this. Two bouts of cancer and now Nph. God bless……

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@pedie

A month ago I was diagnosed with NPH (normal pressure hydrocephalus). I take no meds; have neuropathy in feet aggrevated by chemo and radiation. Any hope for the NPH. Was always very active, but now can hardly walk. Very tired most of the time.

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Blessings to you as well – don’t hesitate to email me with any questions or opinions. Some neurosurgeons do a spinal tap to see if a sample onetime drain will give the results that a shunt will and then proceed to schedule shunt surgery. Our neurosurgeon did a drain trial for 3 days – in hospital and had a psyc IQ test prior and after.
Its important to have someone accompany you to all visits and procedures – take notes and support you in getting answers. If you want more info on VP shunt and your tubing let me know and I’ll give you the details.
In the future, you will have to avoid strong magnets and only do MRIs in a controlled setting under the highest medical necessity – as it will screw up your setting and you will need to get it immediately back to the correct setting or all your bad symptoms will come flooding back. CT scans and ultrasounds will be your go to tests.

Think positive and be persistent in satisfying your need for good info. The NPH group has a great free book that they will quickly send. You can get their contact # on line.

Sending you positive thoughts for the gift of health and happiness.

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@pedie

A month ago I was diagnosed with NPH (normal pressure hydrocephalus). I take no meds; have neuropathy in feet aggrevated by chemo and radiation. Any hope for the NPH. Was always very active, but now can hardly walk. Very tired most of the time.

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I did request the book, but it never arrived–and then I forgot about it.

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@pedie

A month ago I was diagnosed with NPH (normal pressure hydrocephalus). I take no meds; have neuropathy in feet aggrevated by chemo and radiation. Any hope for the NPH. Was always very active, but now can hardly walk. Very tired most of the time.

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http://www.hydroassoc.org/docs/NPH-bookletA.pdf – you can read it on line – it looks like or phone them for another copy.

All the best

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@pedie

A month ago I was diagnosed with NPH (normal pressure hydrocephalus). I take no meds; have neuropathy in feet aggrevated by chemo and radiation. Any hope for the NPH. Was always very active, but now can hardly walk. Very tired most of the time.

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I did read the book on line. 

Is surgery usually successful?  I am so tired of stumbling around, unable to even walk my dog. 

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@pedie

A month ago I was diagnosed with NPH (normal pressure hydrocephalus). I take no meds; have neuropathy in feet aggrevated by chemo and radiation. Any hope for the NPH. Was always very active, but now can hardly walk. Very tired most of the time.

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How did your appointment go today with the neurosurgeon? Was a spinal tap discussed or a drain trial? Usually doing one of these give definitive results which tells you if surgery & shunt are the fix. With all of the doctors that we talked to, our worst case scenario was that our situation would not get worse.

By the time my husband had surgery, he was far worse than what you are discussing and now he is being able to walk with a cane and many times without the cane in and about our house and outside area. We are sad that he has only one more adjustment available – which would free up his feet more, but the surgeon wants to save that setting – we are at about 85% recovery. Before the onset of the NPH, my husband was very athletic – golfed and drove the car, etc. We have a young active golden retriever –we became worried the dog would accidentally knock my husband over – I discussed the situation with a dog guru and worked on teaching him “back”, “wait” and I got a harness with a top handle so that my husband could hold on to the handle if he needed to steady himself next to the dog and it helped the dog to become more calm and listen better ( the dog is a rescue).

Others I know, who have had the surgery are happy and able. Some are happy and stable. My husband is happy and able and stable.

I hope this helps. I hope you are able to walk your dog soon.

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They kill with wars, alcohol and abortions. Save us!!!

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Welcome back to Connect @thegoodwife.
It’s been a couple of years since you last wrote about managing NPH. How are you and you’re husband doing?

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@colleenyoung

Welcome back to Connect @thegoodwife.
It’s been a couple of years since you last wrote about managing NPH. How are you and you’re husband doing?

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I had a shunt inserted in 2014 after having problems with balance, incontinence, and difficulty walking.  Gradually, with therapy, returned to almost normal.  Still can’t ride a bicycle, but am able to play tennis with no falls, so far.  Go for it!

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Hi @pedie, Thank you for the update. So great to hear that the shunt along with therapy has helped you regain mobility. From having difficulty walking to playing tennis, that’s quite the recovery. Can you tell us a bit more about the recovery journey? How long did it take from getting the shunt to starting to walk and be more active again? What was and is your therapy regimen?

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@colleenyoung

Welcome back to Connect @thegoodwife.
It’s been a couple of years since you last wrote about managing NPH. How are you and you’re husband doing?

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Dear Colleen,

Yikes, so surprised to hear from you – I have helped many others, but not received any response – help or feedback from Mayo.

The Seattle area neurosurgeons have been a great help (UW, Harborview and Swedish and a private practitioner), as was the Hydrocephalous Society. We are an active part of a monthly support group at Swedish Hospital , funded by a Microsoftie, who contracted NPH after a fall. My husband’s NPH was the result of a AAA surgery. We are very proactive – unfortunately, his mobility is not the same level as before – good around the house – but not much in distance, but he is mentally sharp and very able. Recently, he has joined a Seniors exercise group – 3X per week and enjoys it a lot. He uses a cane, but for travel or special situations, we have a lightweight wheel chair that I can lift and easily push. I drive us.

I would encourage Mayo work more to return contact requests . NPH is not widely recognized and may people could get necessary information and support to be able and have a high functioning and lovely quality of life.

Many thanks for your email,

The Good Wife

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@colleenyoung

Welcome back to Connect @thegoodwife.
It’s been a couple of years since you last wrote about managing NPH. How are you and you’re husband doing?

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Hi Pedie,

We’re doing well, but you win – playing tennis – hurray! My husband can play golf and that is a great gift for him. He was totally incapacitated by the time he was scheduled for his shunt. We celebrate that he can now walk and joke and have a good life. Distance walking is not in the cards for him, but he is very able around the house and in places that he feels comfortable. Glad you got your shunt and that you are enjoying life! Hope all your serves are aces. Regards, The Good Wife

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@colleenyoung

Welcome back to Connect @thegoodwife.
It’s been a couple of years since you last wrote about managing NPH. How are you and you’re husband doing?

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Good to hear from you too @thegoodwife!
There have been quite a few changes over the past couple of months on Mayo Clinic Connect, the online community connecting patients. I am the Community Director dedicated to this project and we have a team of moderators to help connect people and ensure that every message gets a community response. We’re also updating the design and improving the functionality so that it will be easier and easier to use. Have you visited the homepage? See https://connect.mayoclinic.org/ You will see more updates in the coming weeks and months. And we’re always open to ideas you may have to make it better 🙂

Feel free to private message me any time. Simply click @colleen_young and then click the envelope icon.

This discussion is a good start to increasing awareness about NPH. Thanks to you and @pedie when someone searches for NPH they will find someone to talk to.

Let’s keep the conversations going!
Colleen

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