NPH (normal pressure hydrocephalus): Let's connect and share
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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@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?
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!
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?
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
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,
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.
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.
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.
Hi Colleen, I was directed to this group by John Bishop, and notice that many of the posts are a few years old. Is this group still working? I ask because I have been diagnosed with "probable NPH" and have an appointment scheduled for Mayo JAX in mid August…. Connect has been a godsend, but had missed this group. So wondered….neurologist where I live insists I need a spinal tap, which is a counter-indication when you are an Adhesive Arachnoiditis patient, so have done all I could to get into Mayo, and looking forward so much to the consult and second opinion about the tap….NPH is progressing and symptoms are becoming more and more worrisome. Are you there? If so, all the best, and would love to hear from you and other NPH patients….Best, Joan
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