Some advice to others....
Posted: Wed 30 Jun 2010 6:54 pm
Following me getting very fed up with my local hospital (not a specialist eye unit) and them not having a clue about KC i asked for a referal to Liverpool to be able to discuss the option of Intacs with someone who has a clue. Less than a month after requesting my referal, i went for my appointment today - was amazed at the quick turnaround in getting my appointment.
However I am angry with myself for allowing myself to put up with insufficient knowledge and experience at my local hospital for the past few years in relation to keratoconus. The knowledge, even from the nursing staff, was hundreds of times better. the understanding on not being able to get on with contact lenses, and just being able to mention other options without getting a blank look from the professionals was fantastic. Even acknowledgement that contact lenses can cause more problems than they solve sometimes was brillant.
Dont put up with being told that living with substandard vision (poor wearing time on CL or similar) or a graft is your only option until all other options have been explored (intacs, cxl, contact lenses, glasses) with a team of doctors who understand kerataconus and are willing to spend time with you. I was told a graft was my only option, when thanks to this site i knew it wasnt. The time spent with the nursing and doctor team today was around 4 times as long as i have ever spent with the doctors/nursing team at my local hospital. And the Liverpool team were apologetic that they want to wait on making a decision regarding intacs until they receive all the information from my local hospital and also from Centre for Sight where i had CXL done last year.
Hindsight is wonderful, i just i had made the change earlier...
However I am angry with myself for allowing myself to put up with insufficient knowledge and experience at my local hospital for the past few years in relation to keratoconus. The knowledge, even from the nursing staff, was hundreds of times better. the understanding on not being able to get on with contact lenses, and just being able to mention other options without getting a blank look from the professionals was fantastic. Even acknowledgement that contact lenses can cause more problems than they solve sometimes was brillant.
Dont put up with being told that living with substandard vision (poor wearing time on CL or similar) or a graft is your only option until all other options have been explored (intacs, cxl, contact lenses, glasses) with a team of doctors who understand kerataconus and are willing to spend time with you. I was told a graft was my only option, when thanks to this site i knew it wasnt. The time spent with the nursing and doctor team today was around 4 times as long as i have ever spent with the doctors/nursing team at my local hospital. And the Liverpool team were apologetic that they want to wait on making a decision regarding intacs until they receive all the information from my local hospital and also from Centre for Sight where i had CXL done last year.
Hindsight is wonderful, i just i had made the change earlier...