Probable NPH...new & frightening frontier

Posted by mcwoodham761 @mcwoodham761, Aug 5, 2019

ER physician ordered CT when I presented with Cardiac concerns from one symptom: fullness in my head and ears. The CT revealed enlarged lateral & third ventriculomegaly. Am awaiting referral to Neurologist. I have none of the classic symptoms of NPH. Do not want to wait until symptoms appear. I am 69. Had hard fall several months ago on bathtub, and other head injuries since childhood. Could this recent fall be the cause of the enlarged ventricles? Has anyone had a shunt implanted without severe symptoms?

@gldaniel

I was diagnosed with NPH in 2011
I had a shunt installed at the Jacksonville
Mayo facility in November 2011. My symptom was the inability to walk it took a few months and an adjustment before I improved to the point where I no longer needed a walker. I had no adverse side effects
My walking has recently deteriorated and I have an appointment with a neurosurgeon in Melbourne Florida who has the capability of adjusting my shunt
I’m hoping He can adjust the shunt and my walking improves

Jump to this post

Hello @gldaniel and welcome to Mayo Connect and this discussion on NPH. I'm glad to hear that the shunt was helpful to you and that it can be adjusted now. I'm sure you are looking forward to this adjustment.

As you are comfortable sharing, could you speak a little as to any injuries that might have led to the NPH? Did it take very long to get a diagnosis? Is this upcoming adjustment a surgical procedure?

I look forward to hearing from you again.

REPLY
@hopeful33250

Hello @mcwoodham761

I appreciate you posting about this topic. I can certainly understand your concern. All of us are concerned when we have been told there is a problem with our brain. I can understand that you want to get the best specialist on your side as you seek treatment. While I'm not familiar with NPH, I did find a link to some information provided by Cleveland Clinic.
https://my.clevelandclinic.org/health/diseases/15849-normal-pressure-hydrocephalus-nph
As you read this information you will see that a fall (like you described) can cause a brain bleed which can lead to NPH. I would encourage you to read this article and see how it might apply to your current situation. Do you have any other symptoms, like problems walking, balance, speech, incontinence, etc.?

Jump to this post

I had no success locally, but did find several doctors through the National Hydrocephalus Association @ Emory in Atlanta, a little over 100 miles away. I have a consultation 21 AUG. Thanks to all the encouragement from this site. I will post my results.

REPLY
@hopeful33250

Hello @mcwoodham761

I appreciate you posting about this topic. I can certainly understand your concern. All of us are concerned when we have been told there is a problem with our brain. I can understand that you want to get the best specialist on your side as you seek treatment. While I'm not familiar with NPH, I did find a link to some information provided by Cleveland Clinic.
https://my.clevelandclinic.org/health/diseases/15849-normal-pressure-hydrocephalus-nph
As you read this information you will see that a fall (like you described) can cause a brain bleed which can lead to NPH. I would encourage you to read this article and see how it might apply to your current situation. Do you have any other symptoms, like problems walking, balance, speech, incontinence, etc.?

Jump to this post

No, I have no symptoms other than short-term memory frustration. I credit the ER doctor's attention to my ear pressure & feeling of my head being 'full' that prompted the CT, which showed 2 enlarged ventricles. I am hopeful NPH has been identified early, and can be treated before the debilitating symptoms occur.

REPLY
@mcwoodham761

No, I have no symptoms other than short-term memory frustration. I credit the ER doctor's attention to my ear pressure & feeling of my head being 'full' that prompted the CT, which showed 2 enlarged ventricles. I am hopeful NPH has been identified early, and can be treated before the debilitating symptoms occur.

Jump to this post

Hello @mcwoodham761,

I understand your concerns about treating this disorder early. I'm looking forward to hearing from you after your consultation on the 21st.
As this will be an appointment with a new specialist, I think you might find the following posts beneficial, they address how to approach an appointment with a new specialist. Many of our members have found the suggestions to be quite helpful. After you read it, will you let me know what you think?
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?utm_campaign=search

REPLY
@hopeful33250

Hello @mcwoodham761,

I understand your concerns about treating this disorder early. I'm looking forward to hearing from you after your consultation on the 21st.
As this will be an appointment with a new specialist, I think you might find the following posts beneficial, they address how to approach an appointment with a new specialist. Many of our members have found the suggestions to be quite helpful. After you read it, will you let me know what you think?
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?utm_campaign=search

Jump to this post

Thank you sincerely for this most helpful check list. I will have all this info available. Finding this physician on the National Hydrocephalus Association's directory was encouraging. I am grateful to be a member of this Mayo group.

REPLY
@hopeful33250

Hello @gldaniel and welcome to Mayo Connect and this discussion on NPH. I'm glad to hear that the shunt was helpful to you and that it can be adjusted now. I'm sure you are looking forward to this adjustment.

As you are comfortable sharing, could you speak a little as to any injuries that might have led to the NPH? Did it take very long to get a diagnosis? Is this upcoming adjustment a surgical procedure?

I look forward to hearing from you again.

Jump to this post

Hello I didn’t have any injuries from my nph as I never did fall.
I did get down to the point where I needed a walker
It did take quite a while to get diagnosed with a final assessment and diagnosis add mayo clinic Jacksonville
My shunt is adjustable by using a magnet to change its setting
I’m guessing my doctor will do an assessment to see if the shunt is still working and if an adjustment will help. I certainly hope it will

REPLY
@gldaniel

Hello I didn’t have any injuries from my nph as I never did fall.
I did get down to the point where I needed a walker
It did take quite a while to get diagnosed with a final assessment and diagnosis add mayo clinic Jacksonville
My shunt is adjustable by using a magnet to change its setting
I’m guessing my doctor will do an assessment to see if the shunt is still working and if an adjustment will help. I certainly hope it will

Jump to this post

@gldaniel I hope that an adjustment is possible as well. When is your appointment scheduled? If you can post about your results, please do so. I hope it is very helpful for you.

REPLY
@hopeful33250

@gldaniel I hope that an adjustment is possible as well. When is your appointment scheduled? If you can post about your results, please do so. I hope it is very helpful for you.

Jump to this post

Gene here
My first appointment is August 14 next Wednesday
I Imagine that will primarily be an assessment. The first neurosurgeon I visited noted that I have an old style shunt so he couldn’t help me
So since November 2011 new a style shunt has been developed

REPLY
@mcwoodham761

Thank you sincerely for this most helpful check list. I will have all this info available. Finding this physician on the National Hydrocephalus Association's directory was encouraging. I am grateful to be a member of this Mayo group.

Jump to this post

And we are grateful to have you on Connect, @mcwoodham761.

REPLY
Please sign in or register to post a reply.
  Request Appointment