Hi
I'm new role this forum and from the UK.
I'm daughter has learning disabilities, cerebral palsy, very complex hydrocephalus she is 28 years old and cannot advocate for herself.
My daughter has been shunted since she was 3lb in weight as was premature and for the first 18 years of her life endured over 49 shunts surgical shunt procedures including having 2 shunts in situ and bilateral subtemporal decompressions, she has bilateral slit ventricles and when xray or mri is done it's very difficult to assess if there's a problem with her shunts.
She has been symptomatic for over a year occasional headaches, awful memory (short term) exotropia and now hearing loss complete in one ear- we had a audiologist mirco vacuum her ears 10 months ago and it dud have a accumulated wax she could hear a little better but 3 months after that couldn't hear again.
Took her to the gp yesterday and he checked the ear no wax build up no inflammation either so was referred to hospital ear, nose and throat consultation in the next few days.
* in may I took her to see a neurosurgeon who did state she was very complex and he would like to get an mri done - this happened 3 days ago - the hearing loss and eye problems were discussed and memory issues and severe lethargy were all discussed awaiting mri feedback or plan.
Over the years I've been with her for prolonged periods I have come across people that have become completely blind and lost hearing so these symptoms really worry me.
I I would like to ask if anyone has experienced any if the above at all or generally any advice regards it all
Thanks for your time