Probable NPH...new & frightening frontier

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!

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.

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.

@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

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.

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.

@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.

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/

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.

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?