Living with Hydrocephalus

[Pip70]

I am new here a 47 years old woman and living with the effects of Hydrocephalus and would like to communicate with others in the same situation

[lcd8]

Hi Pip70. I suffer from Hydrocephalus caused by an abnormal lesion in my brain called AVM. I had it for the first time aged 12 and had a Shunt fitted at 14. This has been revised several times when it blocked. Do you have a Shunt perhaps? Best wishes Lulu

[Pip70 in reply to lcd8]

Hi Lulu, I had a shunt inserted last year after a failed Endoscopic Third Ventriculostomy the year before! My neurologist in the 1980's was opposed to shunting me when I had my first seizure when I was 13 and my hydrocephalus discovered because I had no other problems these have only developed in the last 18-24 months. Kate

[lcd8 in reply to Pip70]

Sorry to hear that Kate. Medical technology has moved on an awful long way since the 80s. I had my first Shunt fitted in 1987 and it was just a very basic plastic tube. Nowadays they have all sorts of valves and things. I had to wait about 15 years to find out what actually caused the Hydrocphalus because scans weren't detailed enough to tell. Has your Hydrocephalus left you with deficits? Lulu

[Pip70]

Yes I am now suffering the consequences of years of untreated brain pressure! I am still able to walk around my home with the help of furniture and walls but it's more difficult outside and my memory is shocking!