What's the latest normal pressure hydrocephalus (NPH) research?
I am interested in info about NPH , normal pressure hydrocephalus From what I read on web, the diagnosis is is based on certain general symptoms (gait/balance/brain fog etc) , & mri reading. From what I can tell , they tap your spinal fluid, potentially lower pressure, & observe if it reduces symptoms.
My questions concern the amount of research & understanding at the molecular level of what's going on. Is or has anyone got a handle (or currently looking at) what the cellular/protein activities causing hydrocephalus are? Is surgery/shunts the only approach?
I have a hearing problem & my reading tells me there are many studies going on to correct hearing loss thru neuro cellular protein solutions.
Seems the same approach should be happening with NPH.
So, my question is who, & where might that kind of research be going on, & where might I find info about it on web.
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I have NPH and actively researched clinical trials for the E-shunt, as opposed to the VP shunt, which has been around for 70+ years. This procedure is done though the blood vessels, less invasive and quicker recovery, and the shunts are tiny. They're being done through Cerevasc and there are 14 trials going on right now. They're in the second phase of development right now.
There's different criteria to be approved for each trial. I was pretty aggressive in researching this method. I looked at Rochester, NY and California.
I ran into a couple of issues. Mainly regarding Follow up and travel costs. There's no reimbursement for travel, food, lodging, etc. Some give you a stipend. But I live in Colorado and there's no trials being done here. Costs for all the testing for pre-screening is split between your insurance and the study. You need a referral from your PCP.
I was mainly concerned with if there was a problem with the E-shunt, post-op there would be no one in CO familiar with it.
The research is very exciting, but right now the VP shunt is the gold standard. But while the E-shunt study sounds very exciting, I think it's a few years away from being adopted nationally.
Look at CEREVASC and you can see the latest developments in NPH surgery.
I also was diagnosed with NPH, four years ago. I went to Cleveland Clinic and I had the third ventricle procedure where they drilled an opening in the third ventricle and you don’t need a shunt. It was a two week recovery. One of the side effects from this procedure is bleeding so you definitely want it done by a doctor who is experienced. It works similarly to a shunt where it drains the fluid in your stomach.
That sounds very interesting! Could you send me more information on this procedure?
Any contact information would be much appreciated.
The only information that I have is they drill a small opening in your third ventricle, it drains into your stomach. Surgery is several hours, you are discharged the next day, you spend one night in the hospital. I would recommend that you have it done with an experienced neurologist. I heard that some one had it done in Detroit but he suffered bleeding and had a stroke. Dr Vositer from Cleveland Clinic did mine! I have not any issues since the procedure. I also know of someone that had the same procedure in Atlanta, and he is doing well from the same procedure. It is a newer procedure. Best wishes to you.
I am 55 years old and I was very lucky to be diagnosed early on. It took 10 years to figure it out, I thought I had Parkinson's like my mother and was terrified. In order to qualify for shunt surgery, I had a MRI of my brain, a Lumbar Puncture, then a lumbar puncture drainage that was 3 days, every hour they took fluid. The first LP, I could instantly walk normally. After the extended LP, again, I felt like I was back to normal and lasted longer. It was a miracle to me. I appreciated going through all that because the thought of drilling a whole in my skull was a bit frightening and they wanted to be sure a shunt would be the solution. It has been 2 months since my shunt surgery, I am doing quite well. My neurosurgen asked me to keep an eye on an returning symptoms, he has my shunt on the lowest level. I have an appointment in August to make any adjustments. I know some of the symptoms have crept back a little, but not like it was before. Cognitively I am not the same in my hey days....so there is room for improvement. I am grateful for my doctors at Mayo as I feel I got my life back.