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?

Your going to the right place if you'e waiting for a Mayo neurology appointment! I have ventriculomegaly written on my EHR, scared me too, but a shunt was not recommended. They'll give you a thorough workup and make their recommendations at your appointment. I was told that I had to have dementia before qualifying for a shunt procedure. I really don't want a shunt! I found a 60 Minutes YouTube video about NPH, fairly old, describing a couple patients getting a shunt and being misdiagnosed with Alzheimers. Maybe watch that and see what kind of condition a patient has to be in to get a shunt with a good outcome? Helped me understand what mayo was trying to explain to me. Good luck at your appointment!

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Thanks so much for the info. I'm waiting for an inital consultation at my local hospital (Chattanooga). I want a doctor who has actually performed procedures for NPH, not just read about or observed, so Mayo is ultimately where I expect to be treated.

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Well, you can request an appointment at Mayo, they can talk you through if you need a referral or not, referrals sometimes needed for insurance. my consult was with mayo's neurology team and a brain surgeon. It's a quick flight into Rochester really.

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@mcwoodham761, I see that you are a new member on Connect and would like to welcome you. You mentioned seeking help from Mayo Clinic. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Here is some information that might be helpful.

Hydrocephalus care at Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/hydrocephalus/care-at-mayo-clinic/mac-20373615

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@Erinmfs

Your going to the right place if you'e waiting for a Mayo neurology appointment! I have ventriculomegaly written on my EHR, scared me too, but a shunt was not recommended. They'll give you a thorough workup and make their recommendations at your appointment. I was told that I had to have dementia before qualifying for a shunt procedure. I really don't want a shunt! I found a 60 Minutes YouTube video about NPH, fairly old, describing a couple patients getting a shunt and being misdiagnosed with Alzheimers. Maybe watch that and see what kind of condition a patient has to be in to get a shunt with a good outcome? Helped me understand what mayo was trying to explain to me. Good luck at your appointment!

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Thanks, Erin, for reminding me YouTube has info on everything from dishwasher repair to brain disorders. I found dozens of NPH videos. I definitely do not want a shunt after watching several with very serious complications.

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@johnbishop

@mcwoodham761, I see that you are a new member on Connect and would like to welcome you. You mentioned seeking help from Mayo Clinic. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Here is some information that might be helpful.

Hydrocephalus care at Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/hydrocephalus/care-at-mayo-clinic/mac-20373615

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John, yes, I am new, and a week ago I'd never heard of NPH. However, every waking hour since has been consumed by online searches & YouTube viewing. I have been assured I'll see a Neurologist soon. If that does not happen, I will request a consultation with Mayo in Jacksonville.

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@mcwoodham761

Thanks, Erin, for reminding me YouTube has info on everything from dishwasher repair to brain disorders. I found dozens of NPH videos. I definitely do not want a shunt after watching several with very serious complications.

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@mcwoodham761 I love that, you are correct! I was watching a video on chicken hatching at McMurray Hatchery after I verified that the 60 Minutes video on NPH was still there – lol

Seeing the doctor is the most important thing, but I thought it was helpful to see some of those videos to get a better understanding of this hydrocephalus stuff. I felt better prepared to ask questions and understand what they were telling me. I wouldn't want a shunt.

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@mcwoodham761

John, yes, I am new, and a week ago I'd never heard of NPH. However, every waking hour since has been consumed by online searches & YouTube viewing. I have been assured I'll see a Neurologist soon. If that does not happen, I will request a consultation with Mayo in Jacksonville.

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in my journey with acqueduct stenosis and enlarged ventricles written on my charts… I came across the Hydrocephalus Association. There really aren't too many doctors that do that condition actually. I looked on the Hydrocephalus Association website and realized I had spoken to a few doctors not on this list. Just a friendly suggestion is to check with the association and see if you are seeing somebody registered with them. There are few places that treat adults is what I found, doctors listed only treat children born with hydro. This was a few years ago. I'd suggest initiating the request for the Mayo appointment, it may take 4-6 weeks to get in.
https://www.hydroassoc.org/

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No shunt for me! I've always tried to be a knowledgeable patient for any condition; however, I do not have high expectations for a local Neurologist. Prior experience with that speciality was not positive. I am not swayed by a white coat, and if my consult turns into a dictatorship, I am ready to walk out, and call Mayo. I feel blessed that the enlarged ventricles were found BEFORE I exhibited any of the common symptoms. Surely I don't have to have dementia before treatment is warranted.

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Hi, @mcwoodham761 – I also wanted to welcome you to Mayo Clinic Connect. I'd like to see if some others who know about NPH (normal pressure hydrocephalus) might join this conversation to talk with you about your probable NPH and whether your recent fall might be the cause of the enlarged ventricles, as well as whether they have had a shunt implanted without severe symptoms. Please meet @joanmahon @llbrown @randypixie @nikkivpshunt @stephenluptak. I'd also like to introduce you to @hopeful33250.

You mentioned you don't have the classic NPH symptoms. Have you had any NPH-related symptoms that you know of thus far, then?

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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.?

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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

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@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

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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.

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@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.?

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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.

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@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.

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