Is it Worth Trying Again?
 

I'm a 69 yo man with, what is to me, rapidly progressing NPH. Last year it was determined that I was a good candidate for a shunt, and I went in for the surgery at the beginning of May. From the very beginning, I had severe positional headaches, so much so that I had to be pretty much lying down constantly.

About 10 days after the initial surgery, I went back to the neurosurgeon, who adjusted the valve (and had difficulty doing so, I might add - they took at least 3 X-rays that day), and sent me home. The pain only resolved somewhat. The headaches returned anytime I was in any way upright, though it took them a bit longer to come on. Still, it was unbearable.

The doctor thought that, because it was set to a very slow drain, that perhaps the valve was malfunctioning, so we decided that I'd go back in once again so that he could deal with it. When he took out the valve and tested it, it was just fine, so the surgeon removed the entire shunting system and pretty much washed his hands of me.

Now, almost a year later, my symptoms have gotten much worse and I'm wondering if it's worth seeking out a second opinion at a different hospital. I'm feeling kind of desperate, actually. I would love to hear any experiences others have had and whether certain of the hospitals are better regarded. We're in New England, and are looking at Johns Hopkins, Brigham & Women's and Columbia so far.

Please try again! Not every surgeon has clicked with our child but we do think our primary surgeon is amazing. The Hydrocephalus Association (hydroassoc.org) has a doctor list, don't know if it specifies the docs who work with NPH, but if not consider calling them for someone who has lots of experience with NPH. There is also an adult clinical research group (ahcrn.org) to pay attention to.

Thanks for the encouragement, especially the tip about the adult clinical research group. We'll be sure to check that out.

Hi Tecari_S,

You asked in another thread about if anti-siphoning device would make a difference. Do you know the name of the valve you had installed? You should be able to get a copy of your hospital operative notes which say what was used, would be good to know. An ASD (or DRS) probably might have helped if you didn't have one but it isn't enough for some people and sometimes it is undesirable. My child's first valve had an ASD built in, she actually needed it removed, she had very low pressure initially and taking it out and using a valve that adjusted to a lower range was wonderful (and kinda outside of normal for kids with shunts). And then she changed and her pressures increased (and her ventricles did go slit, she had low compliance even when she had huge ventricles). Going up in pressure wasn't enough, adding an ASD was enough for about a year and then the surgeon switched her to a fixed low pressure valve + codman so the pressures can be adjusted higher than the standard codman range and it is like having an ASD on steroids. Adults don't usually get slit ventricles so I would think it more likely that you didn't have an ASD and needed one. But I hope you understand this can be complicated sometimes.

Thanks so much, pogo. We've requested a copy of my operative notes, and will be checking in with Dartmouth-Hitchcock this week to nudge them along, if necessary. I appreciate your explanation of the intricacies; your daughter has been through a lot. I think for us what was so astounding was that the NS didn't suggest trying anything else. It really felt like he just wanted to be rid of us. My medical history is complicated (Post Polio Syndrome, recurrent Lyme Disease, degenerative spine disease & one of the neurologists thinks the hydrocephalus was actually congenital) and my wife is a very good advocate for me, if you know what I mean; it was actually heart breaking. Anyway, thanks so much for your interest, concern and help. It is much appreciated.

The notes may not mention an anti siphon device clearly because some valves have them built in. Takes 4-6 weeks for me to get copies of records.

Thanks for the heads up. We thought we might have to do some more digging. We're learning so much - it's one of those, "if we knew then what we know now" situations. Onward.