Hi, was just wondering if anyone has had similar experiences to what I’ll describe below which is what my wife is going through;
She has long history of migraine since childhood.
She started having speech problems early 2007, which resulted in visiting neurologist who recommended MRI scan.
In November 2007 she was diagnosed with AVM in front left part of brain, which sure enough controls speech.
She had gamma knife surgery in London in May 2008, and was told it would take a few days for pain to subside and then up to 3 years for the AVM to go. She has been put on Topiramate to control the migraine symptoms. 75mg pdy at first, now 100mg pdy.
The pain post GK surgery lasted weeks, including getting an infection at the ‘screw’ sites on the back of her head where the frame had been fitted.
She then had a few months of feeling ok…less migraines etc and we thought everything was ticking along nicely.
Fast forward to spring 2009 - wife getting more and more frequent and intense migraines again. Also getting ‘head-rushes’ when getting up from lying or sitting position. Has bouts of dizziness, feels spaced out and quite often nauseus. The headaches are very severe and debilitating now, to the point where my wife can no longer look after our young kids effectively if I’m at work.
She’s had follow up MRI’s (last one on 3rd Aug) which seem to show that the AVM is shrinking as planned (in fact faster than planned) but that an large amount of fluid has built up in her brain. As far as we know this is confined to the left hemisphere.
She’s currently been admitted to our local hospital, awaiting transfer to the specialist unit at Kings College Hospital in London, where they will probably do another MRI to see if this fluid has spread.
I was wondering if anyone else has had this type of symptoms a year or more post gamma knife surgery, and what was done about it to improve the situation.
I’ve been looking on the internet and wonder if its hydrocephalus but the internet is a wonderful but dangerous thing - you can find anything you want on here and then find the complete opposite story on the next page - so I want to get some real people telling me real examples !!
Anyway thanks for your time and I look forward to your response.