NPH (normal pressure hydrocephalus): Let's connect and share

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

Interested in more discussions like this? Go to the Brain & Nervous System group.

@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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@colleenyoung

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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Colleen and Pedie,

Our recovery, included serious PT, and cautiously opening the shunt to the current setting of 1.0. That was over a period of 1 1/2yr. Gradually, the symptoms dissipated and went from wheelchair to walker to cane. Currently he uses the cane when he is tired around the house and takes it with him when he is out. It is more of an occasional prop, rather than a functional walking aid. When he golfs, he uses his clubs to give himself support and a rest. He still has trouble festinating when any distance is involved. He is mentally sharp, a voracious reader and loves to socialize. His senior exercise class is quite rigorous and he only uses the chair as part of the instructed exercise.

As the shunt was opened and he went through the healing and settling stages, he has required less and less sleep and now, I would say that he is in the normal range. He rarely naps and has a fine appetite and has regained all of the weight that was lost during the period of decline and recovery. He takes Carbadopa Levadopa – 2 pills, breakfast, lunch and supper and it is a nice little boost. He has a Medtronic shunt and there have been no issues with it. Medtronic was very helpful in confirming that the massive AAA surgery can often cause NPH. Unless, there is a special circumstance, it is unlikely that his shunt will be opened any further, for fear of bleeding or collapse of ventricles.

If you need more information or feedback, I will give you what help that I can,

The Good Wife

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@colleenyoung

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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My surgery was done at Shands UF.  There was no adjustment of the shunt–it was simply inserted, I went home after two days, and then was told to have therapy. Most of my therapy was dealt with balance. 
My grandson tells me there is something called muscle memory.  Although at times I feel a bit unsteady just walking, on the tennis court my muscles seem to know what to do.  This past Oct. I had an MRI and the neurosurgeon said that all looked well. 
By the way, I will be 81 in May.  God is good.  Pedie

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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?

Jump to this post

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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Yes there is muscle memory and thank goodness you were active and “still have it”. My husband will be 74, this week and is pretty close to his rascally old self. Hats off to you, young man! Yes, we agree, every day we thank God for this gift. The Good Wife

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Do I have slit ventricle syndrome or possibly NPH? I am a 32 y/o woman w/a history of pseudotumor cerebri or IIH. Ive undergone 8 surgeries in the last 13 years for repairs and revisions of my shunts. My doctors dont know why I need 2 shunts or why I still have headaches & fatigue/lightheadedness. Ive had several reoccurances of papilledema & lost vision. My LP shunt overdrained years ago & caused a Chiari Malformation & resulting syrinx. It was replaced with a VP shunt but the LP was later reopened when I was experiencing PTC symptoms again. I had another episode of papilledema a couple months ago. But my headache symptoms were different from what Im used to feeling. I have waves of lightheadedness when I feel off balance, tenderness in my eyes at times & often a loud whooshing in my ears & a fullness in my ears. If I have head pain at all, it is usually sharp rather than throbbing & does not get better laying down. I suspect overdrainage but that would not be consistent with papilledema. My neuro-opthalmologist told me my left optic nerve is elevated but he sees no papilledema now. Yet, Im still having the symptoms I described above more than a month after my eyes are supposed to be showing normal pressure. Ive never had a shunt adjustment take so long to improve if the settings are right. It could simply be the shunt settings are wrong. But Im wondering if my symptoms are more like NPH or slit ventricle syndrome? Could my PTC diagnosis be wrong? My neurosurgeons stopped evaluating me when the neuro-op cleared my eyes. And I dont see a neurologist. How do I get answers?

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