Normal Pressure Hydrocephalus

[livingwith]

I am a 55 year old female who was diagnosed with NPH at age 39. After the usual diagnostics, I was shunted in 12/93. I have had the same shunt since that time, with no problems.
My symptoms prior to surgery were the usual for NPH–headaches, nausea, visual problems, urinary frequency, numbness and tingling in extremities, cognitive difficulties/memory problems. My physician felt migraines were the cause, but ordered a CT to rule out any other causes. Hydrocephalus was the diagnosis̵...Read the full article

[girlcop3]

I have many questions about this disease. My mom started to develop issues at 49. She is now 56 and in a nursing home with dementia. She exhibits many signs of this disease, however she has yet to really be diagnosed with anything. Does anyone have an idea of a expert on these types of diseases and it is possible for this disease to be overlooked even with all of the common tests?

[mp327]

I'm sorry to hear that your mother is having these difficulties. From all the reading I've done on hydrocephalus, it is very common for someone to be misdiagnosed with Alzheimer's or dementia instead of hydrocephalus. I believe this is because the doctors focus on the cognitive difficulties and fail to check for other tell-tale symptoms of hydrocephalus. My disease was found on a CT scan. Has your mother had this done? My recommendation would be to get a referral from her doctor to see a neurologist or neurosurgeon for a more extensive evaluation, which may include CT and/or MRI. It would definitely be worth it, as hydrocephalus can be treated in a lot of cases with a shunt. For me, that was the answer. The surgery was not that traumatic and my symptoms went away immediately. I urge you to seek further medical opinions for your mother. She is young and should not have to face this current situation if something can be done.

Please keep me posted on what you find out. I really do care about others who have this disease. It is something that you can live with if you get the right diagnosis and treatment.

Martha

[teri25]

Glad to hear the shunt helped you. My Dad was diagnosed with Progressive Supernuclear Palsy, which has a lot of the same symptoms as NPH. He had an MRI or CT scan, I can't remember which, and the Dr. didn't act like there was anything to unusual on them, other than because of his age there was some deterioration as he is 75 yrs old now. A few years ago he was still mowing the lawn and riding his bike, and then it seemed like all of a sudden he was falling, having little accidents, getting clumsy and then he had problems walking, and talking. Now, getting up and down are hard for him and he is having to go to the bathroom alot and sometimes doesn't make it there in time. I was just wondering if the CT scan or the MRI doesn't prove NPH, is there no reason to pursue NPH with other tests or do you know? I would just hate to see him being diagnosed wrong and not finding out for sure that there is nothing that would help him. He used to be so outgoing and energetic and full of life. It kills me to see him this way and he gets so frustrated cause he can' t do anything for himself much anymore. Thanks.

[mp327]

Hi Teri--

I'm sorry to hear of your dad's problems. NPH is often misdiagnosed as Parkinson's or Alzheimer's. Even though an MRI and CT may not have shown NPH, I suppose it's still possible that your dad has it. Did he happen to have a spinal tap done? I have never had one, but it's my understanding that the pressure can be measured during this procedure and that many patients see an improvement in their symptoms simply by having the tap done. Does he currently see a neurosurgeon for his diagnosis of PSP? I would definitely bring this up with him and ask for a thorough interpretation of both scans and why these would rule out NPH. If the answer is, they do not rule it out, perhaps the doctor could do more studies--there are several more. If you are still not satisfied with the doctor's response to your concerns, then I would seek a second opinion. But before you do any of the above, take some time to research NPH on the internet--there is some very good information out there, including on Neurology Channel. This will give you more information so that you can ask more questions and have a better understanding of the doctor's response. I wish you the best in helping your father get answers to what is causing his symptoms. Please let me know what you find out.

Martha

[PCheeks]

Hi Martha,

I am 55 and have been diagnosed with NPH.. I have been having trouble walking for quiet a few years now and it seemed to be all in my imaginagtion when I spoke with doctors.

However a year or so ago I fell and went to a hospital here in town that is a teaching hospital..and low and behold the residents found the NPH on one of my earlier CT scans. They in turn brought it to the attention of the neurologist on staff and he came to see me. But once again he didnt feel I truely had NPH...........he even did a spinal tap on me and my symptoms went away but he told me he didnt know how much of it was real or how much was psycosymatic....sure made me feel wonderful.

He did however help me to get to John Hopkins in Baltimore MD my insurance was terrible....JH is out of network and out of state for me. The place they wanted me to go I did and the doctor there wasnt with me for 10 minutes did NO tests on me and said u are too high a risk we wont touch you.

I have also had a triple bypass and am on Plavix a blood thinner but I've had no incidents in 2 years now and my cardiologist said I can stop the Plavix.

Right now I am going to be admitted to JH for a week to do the work up studies....which include the 3-4 day spinal to see if i would be a candidate for the shunt. They are really great there they wont do anything that is not going to help you. I am so hoping to have the shunt put in to get over these awful symptoms. I am now getting headaches; car sickness; and all I want to do is sleep.

I was hoping you could tell me if you had these symptoms also and if they did get better with the shunt. How bad was the surgery? I am the type of person who needs to know before I go in the operating room exactly what is going to be done to me.

Thanks in advance for any info you can give me.

PCheeks

[mp327]

P Cheeks--

I'm sorry to hear that you have been dealing with these symptoms for awhile, with no help from previous doctors. However, it sounds like your doctor at JH is on top of things and that you are going to get some relief with the shunt, if one is indicated.

As for my symptoms: confusion, forgetfulness, excruciating headaches (especially pain behind my right eye), morning nausea, numbness and tingling in my extremities. My GP thought I was experiencing migraines, but ordered a CT scan just to rule out anything else. That is where the hydro was found. The first neurosurgeon that saw me said he wouldn't touch me, as mine was the worst case of hydro he'd ever seen. After a few more studies (MRI's, EEG) and several consults with different doctors (both neurologists and neurosurgeons), it was the consensus among the docs that a shunt was indicated.

The surgery took place on 12/29/93 and I went home from the hospital 2 days later. I'm not sure how long the surgery took, but not all that long--less than an hour, I believe. While in the hospital, I did have some pain, for which they gave me pain meds. The worst part was having to lie flat on my back for those 2 days and not being able to be up. That also meant lying right on the incision area, which was a little painful. Also, the incision that was made on my stomach where they stitched the shunt tube to my abdominal wall was quite sore, as they had to cut through all the layers of muscle.

After discharge, I was home for about 10 days, then was able to return to work. I slept a lot when I first got home, as I was still coming out of the anethesia, I guess. I was not allowed to drive for about 3 weeks post-op.

All in all, it was not all that bad and I immediately felt so much better as far as my symptoms. I have only had a few times when I felt like perhaps some symptoms were returning. A couple of times, I went in for a re-check and everything has been fine. My surgeon tapped my shunt on one of those visits to make sure I did not have an infection--I did not. Ironically, I am scheduled to see a new neurosurgeon on October 2nd. just to have my shunt checked and establish a relationship with a doctor in the town in which I now live, just in case something would ever go wrong. I did have a few symptoms over the summer, but began taking allergy medication and am feeling much better now, so I believe the symptoms were allergies, not due to the hydro.

You are the same age as I am and have lots of life ahead of you. I really hope that you get some answers to all of your symptoms and that a shunt can help you. It certainly changed my life--all for the better! I have had the same shunt for almost 16 years now--many others are not so fortunate, as they have had to have many revisions. I hope if you have the surgery, that you will be as fortunate as I have been and be able to "keep the original equipment." Having hydro and the shunt has not affected my life nearly as much as cancer has. I was diagnosed with anal cancer in June 2008, and after having undergone 6 weeks of chemo and radiation, still deal with many lingering side effects. My life may never be the same because of the cancer. However, before my cancer dx, I was very physically active and did lots of volunteer work. I have resumed some of my prior activities, but not to the degree as before. My advice to you is if you have to have the shunt, think of it as your friend and not your foe. It will allow you to keep doing all the things you love to do.

I wish you the very best with your upcoming studies. Regardless of the findings and whether or not you have the surgery, I would appreciate knowing how things go and what you find out. I hope all goes well for you. Take care and please keep in touch.

Martha