congenital hydrocephalus

[14penny]

Hi everyone, I usually post on the RA part of this forum but thought I would ask if anyone has had a third ventrisculotomy done ( hole in brain to drain fluid from blockage) for hydrocephalus I had mine done at Kings neurosurgery ward and it cured the hydrocephalus but still left me unable to walk in a straight line with eyes closed (really wobbly and giddy) I had this done in 2009 with yearly check ups but it has left me with a horrible hissing noise in the head and I would love to know if anyone has had the same thing done with this outcome?

14penny

[moo196]

Hi and welcome,

Sorry I cannot help with this particular condition at all - but hope someone can suggest/ support you here ..

I wonder ( and sorry if this is not at all helpful) if any yoga balance postures done over several months ( keep your other foot on the floor for the first few weeks even with eyes open - fixing on a point about 3 ft away) might help ? My yoga teacher always said these were things that might help me when I had labyrinthitis and I used them when I was coming out of the acute phase of BI.

Also just - since I mention the labyrinthitis - I wonder if the Brandt Darof exercises might be of help too ? Take a look online and take medical advice to see if suitable - again if I start to get dizzy attacks I can usually stave off a full blown severe bout of dizzyness doing these five times a day ....

Hope someone who has had similar might be in touch

take care

Kx

[empath06]

Hello. I have had hydrocephalus all my life. I am 57. There are time when I get a ringing sound in my head. I have had problems with balance as of late. Checking on any fluid build up has been standard with my neurologist visits. There are time when I get ringing sounds in my head which I was told was related to the hydrocephalus. I have had shunt revisions when I was little and know of the discomfort. Should you wish to talk more about your situation please let me know. I would be more than happy to talk with you.

[Matt2584]

Hi Penny,

I havent had a ventrisculotomy but I have got a venticuloperitoneal (VP) shunt which drains the Cerebral Spinal Fluid.

I was diagnosed with a brain tumour in 1996. The tumour was, and still is, located on the brain stem and was blocking the flow of CSF which is why I have the shunt.

Due to complications, the tumour still exists but is of no threat. It calcified during my first surgery but it is continually blocking the flow so I must keep the shunt in at all times.

I have had complications with my shunt in the past and have, in total, had a fair few operations, mainly surgery.

I was a kid when my surgeries began and I had a terrible, junk food diet, like most kids. As I grew older my diet had become more natural and sensible.

Over the last couple of years I have been consuming a lot more natural foods and feel lots better when it comes to keeping healthy.

I encourage anybody to keep a healthy diet as I believe it will do a lot for a person in the long run.

I expect, and hope, to have no more surgery... EVER!

Take care,

MJ