Well I didn't know what it was when I was told by an attending physician at 6:30am after spending the whole night in the ER. All I knew is that it meant some sort of surgery.
Here's a good definition: Normal Pressure Hydrocephalus is a neurological condition which normally occurs in adults 55-years and older. NPH is an accumulation of cerebrospinal fluid (CSF) causing the ventricles of the brain to enlarge, in turn, stretching the nerve tissue of the brain causing a triad of symptoms. Here is a good site http://www.lifenph.com/about.asp
However, it seems that no one on my wife's team agreed with the hospital staff? Again, how the hec could they mis-read a CT scan?? From what I was told, it would be pretty obvious from a CT scan if it was NPH. Who do you believe? I really have a grave mistrust of the medical profession, and now is not the time for me to be feeling that, but if you read my initial post about my wife I would hope you'd understand how I feel.
I would say my wife is Stage 5.
Yes, I know if it was NPH, it would have been reversible, but at the time I was without sleep and horrified about surgery!
Guy, from what I've read, it can be difficult to diagnose NPH correctly, and it is frequently misdiagnosed as AD. I think we talked about this on another thread ... I'll see if I can find it.
When we were trying to diagnose my husband and the neurologist who is in research suspected MCI, my husband had consented to a research trial in which he had to have a lumbar puncture. He laid flat in the office for maybe an hour after the procedure before we headed home. He had no problem with it except for a headache that was gone by the time we got home (which was about 2 hours). Our doctor asked if we wanted him to take a little extra fluid out to be diagnosed for our benefit (we could find nothing out from the research study), and we said yes. The results came back that it showed probability of Alz. Besides helping with research for Alz., we also knew what we were faced with. Now my husband is probably in Stage 5 and some times in Stage 6. I still don't regret him having the LP back in 2004 mostly because then we knew what we were dealing with and didn't have to keep wondering. At this stage of Alz., I would no longer consent to an LP because there would be no benefit for us at this point and it would be much more traumatic for my husband. Another thing to keep in mind is that your loved one forgets about the LP but you don't. On a separate note, what does DH stand for? :-)
The neuro finally returned my calls and letters, rather apologetically, and is prescribing Risperdal 0.5 mg twice daily. Also he said that at DH's last appointment he had started to wonder whether it might be FTD rather than AD! I had wondered the same thing myself sometimes. So he wants to see DH again soon for more testing and also would like to schedule a spinal tap, as diagnostic tool. Said we should think about this, and can decide whether to do it or not.
I have been reading the above thread on this topic and I'm wondering: what good would it really do at this stage to know for sure whether it's AD or FTD? Would they take him off the Exelon and put him on something else? Does it make any difference for the Risperdal? (Apparently not, since the doc is willing to prescribe that today, without further testing).
Jeanette, As you asked, what good would it do (IF you could find out for sure) whether its AD or FTD? Why put them through the additional testing and maybe discomfort, and more money spent, if the doctor is willing to prescribe what is needed without the additional tests?
The medication is to keep them ambulatory, (not the Risperdal, of course), not heal them. I'm at the point that I want him as comfortable as possible, in no pain, no anger, no issues; and the same for me - comfortable, no pain, no anger, no issues!
Jeanette, I agree with Mary, really what makes the difference whether it is AD or FTD, same outcome. Also, my husband had a spinal tap (Lumbar Puncture) as one of the many test...probably 2-3 years after problems began, the results were inclusive. He was diagnosed with FTD last July after his 2nd PET Scan.
My husband is having a lumbar puncture on June 21st. It's part of the research project that he's participating in regarding EOAD and Agent orange (he's a Viet Nam Vet). They told me that Agent Orange, and many other pesticides will stay in the spinal fluid for years and years, and so they are looking to see if there's any AO or other pesticides. Does this sound right Bluedaze? With all he's going through, I'm not sure if I want to do this, but he seems to be okay with it.
I don't think the lumbar puncture is terribly invasive, or painful, and if there is hydrocephalus, draining fluid should help.. my husband had it but nothing was helped. It might be really helpful if they're looking for Agent Orange; if my husband didn't mind, I wouldn't, no matter what stage he was in.
Diane I did the research and couldn't come up with conclusive evidence in favor of the lumbar puncture unless you are pursuing a settlement for AO. At this point the damage is done and all you can do is treat the symptoms. As your husband is part of a research project why not ask the powers that be what their object is. As briegull says the LP really isn't a big deal.
Bluedaze, they are looking for deposits of Agent Orange. This is what this particular research project is about. I was just questioning the fact that does this stuff actuallly stay in the spinal fluid that long.
One of the few places where I would want to find out which dementia it is, is FTD or Alzheimer's. Because what happens with those two diseases is NOT the same. And some drugs that work well on Alzheimer's or even cardio-vascular dementia, not only don't work on FTD, they make the symptoms much worse.
So although I won't let them do any more tests on my husband for anything (except regular blood work and a half yearly urine test) I'd do a spinal tap in this one case.
Our neurologist wanted to do a Spinal Tap, we refused, so instead "we" go for an MRI and PET Scan every 6 mos. The MRI shows the changes in atrophy and the PET Scan shows the progression of the disease. Active areas light up red and orange, diseased, less active or non active areas are dark, purple, blue or black.