Normal Pressure Hydrocephalus

Question:

Please describe your experience with normal pressure hydrocephalus. Submit Your Comment

Comment from: Lucky guy, 55-64 Male (Patient) Published: May 30

A year ago I was hiking down the service road of a downhill ski area. It was very steep and my legs were tired from hiking up. On the way down I lost the ability to stay upright over my feet. First I started leaning backwards then later backwards and sideways. I could force myself upright but as soon as I started walking again I was leaning. I barely made it down the hill. I went to my primary care physician a few days later, he sent me to a neurologist, and she sent me for an MRI. The MRI came back with significantly enlarged ventricles. I had not noticed any cognitive problems, but I had been having odd bladder problems that I ascribed to prostate. My gait deteriorated over the next few months and my girlfriend said I walked kind of hunched over and I was aware of walking on the characteristic 'wide base.' I found a neurosurgeon and he did the lumbar puncture, and my gait immediately improved dramatically and my bladder issues abated. So the doctor scheduled me for shunt surgery for the normal pressure hydrocephalus and I got wheeled into the operation room and then woke up to the surgeon looking at me and saying they didn't do it. Turns out that owing to extensive abdominal surgery I had as an infant, my abdomen was a mess of scar tissue and adhesions and either they couldn't place the drain tube, or else there was insufficient healthy tissue there to reabsorb the drained fluid. So just a few weeks later (which is several weeks ago now) my surgeon performed an endoscopic third ventriculostomy, which is the alternative to a shunt. (Look it up, it's pretty interesting.). Anyhow, I'm doing great. My gait and bladder problems are nearly gone. I have some balance problems and I get tired easily, but I'm hoping these will improve, and if not I can live with this. I'm feeling pretty lucky that I caught this relatively early, symptom-wise, and that I was in really good physical condition and that I have an aggressive and conversant surgeon.

Comment from: CathyR, 65-74 Female (Patient) Published: November 20

In about 2006 I was getting double vision and my optometrist gave me prism lenses to compensate. Then in 2016 I was having problems getting in and out of the car or up from a table. Then I began having urinary incontinence problems. My husband reported that I was shuffling as I walked. My father died from Parkinson’s supranuclear palsy and I feared I had the same as the symptoms were so similar. A new doctor was filling in for my regular primary care doctor. She thought it could be normal pressure hydrocephalus and I should see a neurologist. With my HMO (health maintenance organization), it took nearly six months to get an appointment and get sent for an MRI. A radiologist immediately saw a colloid cyst and made an emergency call to my neurologist. Since the neurologist could not be located, the radiologist gave me a copy of my MRI and instructed me to go to the emergency room (ER) if I felt strange at all. Two days later I had a 'drop attack' in the shower and hit my head on the shower wall. I was taken to the ER and put through a number of tests and procedures. Three days later I was taken to surgery to have a fixed pressure VP (ventriculo-peritoneal) shunt installed. Two days after surgery I had a grand mal seizure and cardiac arrest. Supposedly, I was out for about 5 minutes. I awoke about two days later. I stayed in ICU for about two more weeks, was moved to a regular room for a week and then went to a rehabilitation hospital for about 2 weeks. I guess I was happy to be alive. Now I am not so certain. After the hospital confinement, my neck was hurting. My neurosurgeon ordered another MRI, this time on my neck and it was found that I had cervical stenosis with myelopathy. In June 2017 I had a 4-level cervical spinal fusion. I started physical therapy but my shunt tube in my neck started protruding and made it difficult to bend my neck. My neurosurgeon thinks it is an early sign of the shunt failure and wants to replace it. After the neck surgery, I started taking Rick Simpson oil (medical marijuana is legal in my state of NV) as there are claims that it can reduce tumors and cancers. It costs USD 80 for a small amount but I thought it was worth a try. My CT scan a couple months ago showed the cyst at 10 mm, which is smaller than it showed on MRI last February at 12 mm. My neurosurgeon cautioned that measurements of scans can be off by 1 to 2 mm. My primary care doctor does not believe the medical marijuana shrunk the cyst. I am pleased that it did not get any bigger as I have been told that once it reaches 13 mm that it will have to be removed and I am not looking forward to a craniotomy. I am going on 66 and hope to live until at least 70. My HMO only offers certain neurosurgeons and it appears to me that most of them are good for back and neck ailments but I am not sure of their expertise with craniotomy. It worries me.

Comment from: Donalea, 65-74 Female (Patient) Published: January 27

I have been seeing doctors for last 5 months, for gait problems. They all felt I had normal pressure hydrocephalus (NPH). I had the lumbar puncture and felt like I walked much better then. I waited for the doctors to have their meeting to see if a shunt would help me. They called and told me I didn't qualify for the shunt. I am very confused as to what to do now!

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