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thegoodwife

NPH

Posted by @thegoodwife in Brain & Nervous System, 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

pedie

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.

thegoodwife

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

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......

thegoodwife

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

Posted by @pedie, Jul 28, 2014

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

thegoodwife

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

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. 

thegoodwife

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.

thegoodwife

Posted by @thegoodwife, Mar 6, 2016

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

colleenyoung

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

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!

thegoodwife

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

thegoodwife

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

colleenyoung

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

thegoodwife

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

colleenyoung

Posted by @colleenyoung, Mar 6, 2016

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?

thegoodwife

Posted by @thegoodwife, Mar 9, 2016

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

pedie

Posted by @pedie, Mar 9, 2016

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

thegoodwife

Posted by @thegoodwife, Mar 9, 2016

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

thegoodwife

Posted by @thegoodwife, Mar 9, 2016

Hydrocephalus Association
14th National Conference on Hydrocephalus
June 16 - 19, 2016
Minneapolis, Minnesota

Hydrocephalus Conference Information

http://www.hydrocephalusconference.org/conference-information/conference-fees/

NEW PRICING - KIDS ATTEND FREE! This year we have new pricing for
conference that includes reduced individual rates and family packages. Just
announced - Kids Camp is FREE to our participants ages 3 - 11! As you plan
your summer, we hope you join us in Minneapolis. If you cannot attend in person, join our NEW virtual track! See registration options...

MEET OUR MEDICAL CO-CHAIRS. Dr. Michael A. Williams and Dr. Marion Walker welcome you to this year's National Conference on Hydrocephalus. Joined by our Local Medical Host, Dr. Michael Partington, they are excited to share the new sessions planned for this year with all of you. Meet our Medical
Chairs...

SPEAKER ANNOUNCEMENT! Amy Booher. Many in our community follow Amy on social media. We are excited that she will be speaking at this year's conference.
#relentlesspursuit #stayinthearena . Read Amy's blog...

NEW LEARNING LAB FOR ADULTS AND NPH! Practical Tips and Tools for Dealing with Memory and Executive Function Challenges led by Dr. Cynthia Smith and Dr. Andrew Zabel, neuropsychologists, explores how memory and executive
function challenges impact those living with hydrocephalus in the work place and with daily living activities. You will leave with valuable take-aways to integrate into your life.

SESSION HIGHLIGHT. Sports, Activities, Gadgets and Hydrocephalus led by Dr.
Samuel Browd explores the interaction between shunts and the external environment. Should patients with shunts avoid certain activities? Can exposure to certain things damage shunts? Is sports participation okay for patients with shunts?

TIPS ON MAKING CONFERENCE AFFORDABLE. Our blog covers various funding sources to assist you with your registration and travel expenses, including our application for financial aid.

June 16 - 19, 2016
Minneapolis Marriott City Center
30 S 7th Street
Minneapolis, MN 55402

Learn more at http://www.hydrocephalusconference.org

alicein_wonderland

Posted by @alicein_wonderland, Mar 23, 2016

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?

colleenyoung

Posted by @colleenyoung, Mar 23, 2016

@alicein_wonderland, I moved your message to this thread on NPH so you could meet @thegoodwife and @pedie who know about living with NPH.

Have you talked to your doctor about your suspicions about NPH or slit ventricle syndrome?

jeancary

Posted by @jeancary, Nov 6, 2016

After falling a lot and having the other symptoms of NPH, I came to Las Vegas to help my brother who was recently released from hospital after a bad diabetes episode. I had consulted with staff at a large university medical school, but they had no advice. Fortunately, my brother's primary care provider, a DO from Philadelphia Osteopathic, diagnosed me, referred me to an excellent neurosurgeon and I have been improving steadily for 6 months-from flat on my back and completely helpless to walking well with all other physical faculties. Because I scraped a fender on my new car about a year ago, and because I know that I have suffered from some cognitive deficits, I am participating in OT, PT and will focus on the driving soon. I want to be sure, by independent measures, that I can live alone, drive my car, etc.
If I can't, I'll have to arrange something else, but I have hopes. It all depends on what I can do with therapy.

Essentially, I think that the adjustable shunts are great, along with intensive therapy, including strength training and continued exercise and good diet.

It turns out that my former couch potato days (advised against by my home physician) were a probable cause of my pre-diabetes, which likely contributed to my NPH.

Anyway, I encourage folks to do all they can to correct NPH, no matter where they end up on the recovery scale, as it beats the alternative!

colleenyoung

Posted by @colleenyoung, Nov 7, 2016

Hi @jeancary and welcome to Connect. I look forward to your connecting with other members managing normal pressure hydrocephalus (NPH) like @alicein_wonderland @thegoodwife and @pedie. I'm also tagging @rozalia and @mlzeid to join this group discussion as they have experience with NPH.

You raise an important issue about driving and cognitive impairment. @gailfaith recently had to make the decision to give up highway driving and continues to monitor her driving ability after a bit of scare. She writes about it here on Connect http://mayocl.in/2fw95ys

Gail is also a firm believer in PT. OT, occupational therapists are often an overlooked resource. I'm glad you've included both in you circle of care, Jean.

Jean, has some of the lifestyle management of pre-diabetes positively contributed to your management of NPH?

jeancary

Posted by @jeancary, Nov 7, 2016

I think that some of the lifestyle management efforts, such as diet and supplements, as well as, very importantly, exercise, have improved my functioning. I have more energy and mental acuity as I proceed.One of my physicians here in Las Vegas told me that his father improved quite a bit a few days after shunt installation when he got back on his bicycle and took off for a ride around town. Unfortunately, his father had only recently moved to Las Vegas and could not incorporate the new information about directions and got lost for two hours. Perhaps by now, he has succeeded in getting around town.I know that I have a much better understanding of locations here and perhaps in a few months will be able to test that out. Thanks for the other sources. I will write later today.Jean

thegoodwife

Posted by @thegoodwife, Nov 9, 2016

Hi Jean, I was reading you logs and as we have had a rough patch here - not due to NPH, it has taken me awhile to get back to you. To our knowledge, there is no correlation with diabetes and inactivity and NPH. Although, NPH can cause you to be inactive. Diabetes is an immune system disease - NPH is not immune system related. After being at our local support group, I thought that I should take a minute to let you know that one of our participants has had similar cognitive deficits. Driving is a big issue with many of our group members. The important thing is to be able to respond as quickly as needed to be safe and to put yourself in win-win situations. Most report that doing things that were logistically routine years ago, are easy to do. Doing new things -going to new places or places that have changed are more exhaustive and challenging. OT and PT are invaluable. Also consider going to regular senior exercises - whether or not you are a senior - it is a kind group of thoughtful participants. Be patient with yourself, but tenacious in regaining you ability to stay active. Best Wishes,

colleenyoung

Posted by @colleenyoung, Nov 9, 2016

So good to hear from you @thegoodwife, especially with the invaluable information you offer Jean. I'm sorry that you've been going through a rough patch. Anything you'd like to talk about? We're hear to listen.

jeancary

Posted by @jeancary, Nov 9, 2016

I think that my efforts to cut out carbs and add certain vitamins and supplements have given me more energy, which has kept me on the exercise path - essential I think for better rehab. I just did a driving simulation yesterday and it was really tough, though I didn't hit anything or run a stop sign, etc. it was really hard to keep an eye on the road and all the mirrors that I needed to.

AARP has a good classroom course I'm waitlisted for , and some online work I've signed up for. Here in Las Vegas there's a driver training school that also trains older people (I'm 73) and I have contacted an OT who trains as well. I'm planning on keeping up with the exercise and going with the aforementioned actions in the order I mentioned them. I am also working with the Cleveland Clinic at the Lou Ruvo center to get their impression as well.

I have an adjustable shunt that's about at max and I want to do all the therapies to the max before I get another adjustment.

Right now, because I have long term care insurance that covers it, I'm staying at a memory care facility and going out to various therapy sessions, doing exercise in-house and participating in the cognitive therapy provided by the facility. The facility provides transportation to all the treatment I go to, which is very helpful because my brother has not yet got back on his feet and my sister in law has all she can do to help him with his continuing recovery.

On the one hand, my progress has been slower than I would like, but on the other hand, I do see improvement over time. What has been very helpful is my OT's help with organizing my plan for improvement- with goals and sub goals for keeping myself on track.

jeancary

Posted by @jeancary, Nov 10, 2016

I certainly appreciate your comments and observations, and hope that things are looking up for you. I also appreciate all the additional information sources and support sources that you and Colleen have put on this Connect site.

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