Frustration With Mainstream Thinking - Case Of Normal Pressure Hydrocephalus

[tonto]

Just airing frustration ... heard a neurosurgeon talk on Normal Pressure Hydrocephalus (NPH) recently - speaker is a world expert on the subject.

Paraphrasing talk: "Of course you make sure there is no structural cause (tumors, etc) but then when cause is unclear, to prevent rapid dementia, parkinsonism, and incontinence, you put a shunt (drain into the ventricles) which works for 1 year before disease worsens again. Unfortunately we don't know what causes NPH but at least we can provide 1-3 years of some quality of life versus nothing with surgery."

I'll bet this forum can come up with 10+ causes of failure of proper CSF flow in the brain in middle-age to elderly that cannot be attributed to gross obstruction (like a tumor or mass effect).

Here is one article I found listening to this expert:

Changes in Brain Size with Treatment in Patients with Hyper- or Hypothyroidism

 

[shepherdgirl]

I know someone who supposedly developed it because the lining of the lower spine was torn during another operation. He had balance problems and couldn't think straight until the shunt was installed and they adjusted the setting correctly. Before the operation he did not have balance/cognitive issues, and after many weeks of recovery he did, so they installed the shunt. I don't really understand how a tear could cause this.

 

[tonto]

possible if there is blood in spinal fluid it can block CSF flow in brain but not likely if bleeding distally in lower spine (usually with aneurysm rupture in brain does this happen). Persistent CSF leak from a tear can cause low CSF pressure which can repaired with a "blood patch" but not a shunt.

 

[shepherdgirl]

I highly doubt that they checked his thyroid though. A long time in recovery/meds/no sun could no doubt affect it.

 

[HLP]

My daughter suffers with reoccurring spinal fluid leaks above the thoracic area of the spine. Her leak was fixed a year ago but has happened again and she is in agony. No one is available to do a blood patch until the second week in January and so she is at home with tons of pain meds and instructions to not move very much. There is a calcification about half the size of a dime in the C7 range that keeps wearing a hole in the dura. This is likely going to need surgical intervention but in the mean time we need to manage the side effects of the pain medication. I've suggested keeping the diet very simple with milk, potatoes and orange juice to prevent heartburn. Does anyone have any other ideas? I encouraged aspirin taken away for other pain meds. There is only one doctor that we know of, who will do a CT targeted blood patch in the neck area in Western Canada and he's in Jamaica until the second week in January. This is a fairly rare condition so I guess we are sitting ducks for sure. I believe my daughter's untreated hypothyroidism for 20 years has led to this problem. Thankfully we have found a doctor who will ignore "normal labs" and treat it anyway.