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The Good Wife
@thegoodwife

Posts: 21
Joined: Aug 07, 2012

NPH

Posted by @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

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Pedie
@pedie

Posts: 21
Joined: Aug 31, 2013
Posted by @pedie, Jul 25, 2014

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.


The Good Wife
@thegoodwife

Posts: 21
Joined: Aug 07, 2012
Posted by @thegoodwife, Jul 26, 2014

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.


Pedie
@pedie

Posts: 21
Joined: Aug 31, 2013
Posted by @pedie, Jul 26, 2014

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……


The Good Wife
@thegoodwife

Posts: 21
Joined: Aug 07, 2012
Posted by @thegoodwife, Jul 26, 2014

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.


Pedie
@pedie

Posts: 21
Joined: Aug 31, 2013
Posted by @pedie, Jul 28, 2014

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


The Good Wife
@thegoodwife

Posts: 21
Joined: Aug 07, 2012
Posted by @thegoodwife, Jul 28, 2014

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


Pedie
@pedie

Posts: 21
Joined: Aug 31, 2013
Posted by @pedie, Jul 31, 2014

I did read the book on line. 

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


The Good Wife
@thegoodwife

Posts: 21
Joined: Aug 07, 2012
Posted by @thegoodwife, Jul 31, 2014

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.


The Good Wife
@thegoodwife

Posts: 21
Joined: Aug 07, 2012
Posted by @thegoodwife, Mar 6, 2016

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


Colleen Young, Connect Director
@colleenyoung

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Joined: Jul 23, 2014
Posted by @colleenyoung, Mar 6, 2016

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?


Pedie
@pedie

Posts: 21
Joined: Aug 31, 2013
Posted by @pedie, Mar 6, 2016

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!


The Good Wife
@thegoodwife

Posts: 21
Joined: Aug 07, 2012
Posted by @thegoodwife, Mar 9, 2016

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


The Good Wife
@thegoodwife

Posts: 21
Joined: Aug 07, 2012
Posted by @thegoodwife, Mar 9, 2016

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


Colleen Young, Connect Director
@colleenyoung

Posts: 3685
Joined: Jul 23, 2014
Posted by @colleenyoung, Mar 9, 2016

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


The Good Wife
@thegoodwife

Posts: 21
Joined: Aug 07, 2012
Posted by @thegoodwife, Mar 9, 2016

Delighted to hear that you are making such a good improvement. I have found that those of us, with a connection to NPH, have found that awareness and support are not readily available. We were lucky to have a fabulous neurologist, who was dismayed with my husband’s sudden decline after the AAA surgery. As with others, we had to jump through all the hoops to eliminate dementia, Parkinson’s, Alzheimer’s, etc. and then get into the surgical schedule after a 3 day drain trial. Our surgeon, was the Chief of Neurosurgery at the UW Medical Center, and he was very responsible making things happen and personally doing the surgery.

It is terrible to see your very able spouse melt into a shell of a person, not even able to turn over in bed, by himself and lose his animation. I can’t tell you how many medical people, I have had to educate on the issue of NPH and understanding that until the shunt is opened to the final setting and the brain has had time to rebalance, the individual, will always have delays on response, whether physical or mental. As the patient returns, the caregiver and friends will often see improvements that he or she is not aware of. Strangers, medical or not, often rush to help or interrupt and can be problematic. Having a support team to cheer and celebrate improvement and success is vital.

It is important not to let the patient being diagnosed to lose important muscle strength prior to shunt surgery – preserve and get ready to rebuild.

Good Luck,

The Good Wife

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