NPH overlooked.

My boyfriend Stephen had a head injury as a child; about a year ago he fell 20+ feet out of a tree.  He began to have problems with his balance and walking immediately following this accident.   Since then he has 3 main areas that are problematic everyday:   walking (can't lift his feet from the floor),  urinary urgency (not frequency and no "leaking")... just when he needs to go.. it's now!   And some mild cognitive and memory problems.  My research has pointed these as the classic triad of NPH.  However, he was diagnosed with MS because of lesions on brain even though I have found medical studies that indicate that NPH patients have lesions as well.  He is 36; I have found a case study of a 38 year old man with NPH.  (remember his symptoms began with a fall).  Less than one year later he walks like a 90 year old man.  He has no quality of life.  My question is this :   if a controlled lumbar drainage study over several days is the only Definitive study for NPH and he has a very poor prognosis anyway and very little quality of life and there is even 1 chance in 400 Zillion that he could be helped by a shunt, what in the world would it take to get some HERO of a doctor somewhere in this United States to do that testing for him?   An invasive study is a minimal price to pay compared to the man's life.   Every reason I've been given for not doing it and for justifying the MS diagnosis, I have found medical evidence that states that this could also apply to NPH.  I am desperate to save Stephen's life, mobility, happiness, youth.   Is it possible to refer me to some Superman of a Neuro Doctor who will think outside the box and just do the testing for us?  
Thank you so much,

Susan

[midasrex]

Hi there,
You are right about the triad of NPH, and some people do regard lumbar drainage (one-off or continuous) as the discriminating test for NPH to determine who might benefit from a shunt. Other people prefer ICP (intracranial pressure) monitoring for 48 hours. Although obviously the argument against that is that in NPH the pressure is, erm, normal, and hence ICP monitoring is meant to be normal.

It's perhaps a little more likely that your boyfriend's head injury has caused some slightly different form of hydrocephalus to decompensate and hence present now. Aqueductal Stenosis (AS) is something that usually presents in childhood early on and is hence recognised better in children but you do occasionally see adults presenting with AS in their twenties to fifties.

The MRI scans (if he's had them) or even just a plain CT will suggest one or the other. In NPH (and other types of communicating hydrocephalus) classically the lateral, third and fourth ventricles are all dilated, whereas in AS the lateral and third ventricles are large and the fourth is small/normal. In AS then lumbar puncture or drainage would be strongly contraindicated.

Some people would make an argument if he has symptoms and obviously enlarged ventricles then he should just have a shunt put in to see if it helps on the grounds that nothing else will help! I would be a bit more cautious than that: if the scans suggest NPH then lumbar puncture/drainage first and if they suggest AS then ICP monitoring. If there are signs of MS on the scans then that would make you a little more pessimistic about the chances of a shunt helping but it would still be reasonable to do it. Similarly, if the ICP monitoring or lumbar drainage were not suggestive of a problem, they are not always absolutely correct and the shunt could still be done, but the prospects of a real benefit being seen would have to be lower.

Regarding referring him to someone - I'm not up to much outside the UK I'm afraid! But all patients should be entitled to a second opinion, and the person who has already seen him shouldn't have an issue with arranging one.

Good luck.