MRI shows NPH (Normal Pressure Hydrocephalus)
3 yrs ago I developed ET from long covid and hydrea got my platelet count down from 1 million to 400k. (Normal)
2 yrs ago I was told I had POTS from long covid.
Symptoms worsened, meds didn’t help.
I just had an MRI and it’s NPH, not POTS.
I’m scheduled for a spinal tap.
Anyone else have post covid illnesses and difficulty getting a diagnosis?
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I had symptoms for years. I thought I had dementia. I told every doctor I saw for anything (even chiropractors) that I was getting steadily stupid. I was tested for everything, coming back negative. No one tested my brain. Finally, I started falling down. They gave me an MRI, thinking I may have a brain tumor. No, I didn’t have a tumor; I, too, had hydrocephalus. My surgeon gave me TWO spinal taps because he didn’t believe it. But yes, in my 40s, I had hydrocephalus. I’m sure my mother had it, too, but was never tested or diagnosed. She died of it, diagnosed with dementia. When I was finally diagnosed, I got a shunt to drain the fluid, and eventually recovered some of my intelligence. I was near the top of my class in law school and worked for the Washington Supreme Court writing Supreme Court opinions as a young woman, but because of Normal Pressure Hydrocephalus, I lost so much I could barely read. But after receiving a shunt, I’ve recovered quite a lot. I have what I call “Swiss cheese brain” because much of my mental ability is normal, but my brain just won’t do certain things. Like math. I was the person everyone went to as a child when the teacher didn’t know the answer, but after hydrocephalus I could barely add and subtract. My memory is crap. I joke that my brain is like an etch-a-sketch—if I shake my head my memories disappear. It’s not really THAT bad, but my memory is unreliable. I call my husband the other half of my brain, because he has to fill in when my brain fails. But I am alive. So, endure the spinal tap, get the surgery, stay far from magnets (which will screw up the shunt), even weak magnets like the one on a laptop case—if it gets too close to your head, your shunt will slam open or closed. And enjoy your life.
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2 ReactionsGet a programmable shunt. I have a Codman-Certas shunt and they've had to adjust the settings based on my clinical symptoms. My shunt currently is set very low and my headaches are very mild right now. (8 is off, I'm set at 7 right now. Started at 5.) I've even had an MRI done with the shunt. I do feel better, and my walking has improved, and my cognition is getting better as well. It's been 4 months with the shunt. The key is to be patient, because Lord only knows how long you've really had the NPH because of the difficulties encountered with getting the diagnosis. I think I had symptoms for at least 5 years before treatment.
Thanks. I have an Apple Watch and my walking asymmetry is 99%. I wake up an average of 8 times per nt.
One month till my spinal tap…. I want surgery tomorrow but have to wait for the LP, coag tests, etc.
I didn’t know there are diff types of shunts - thank you.
I see my neurologist again early Jan.
I have epilepsy and have recently been diagnosed with NPH and doctors think that a shunt is a option. Is there anyone else that can way in that has epilepsy and NPH