Hi, I am new to posting on this forum and I'm so pleased to have found it when I did. Reading the posts of others has been so informative and eye opening.
At a local hospital in London, my daughter who is 10 years old was recently diagnosed with A.I.S with an S curve of 64 degrees. We were referred to the Evelina Hospital and advised my daughter will need two operations (1) very soon to insert magnetic growth rods, (part of the trial taking place at GOSH, which I understand have produced really good results) and operation (2) when my daughter is a bit older and grown some more to have a spinal fusion. We were then referred from Evelina hospital to GOSH to see the same surgeon so all the patients on the trial can be kept together. We were pretty shocked by the news of 2 operations and as a result asked very little questions but we are getting questions ready for the next appointment.
Other than what I have shared above, no additional info on the treatment has been given. So whilst awaiting an appointment at GOSH, I've gathered all that I know about A.I.S from these forums and the web. Its not always a good idea to search the web like this but this forum has been very good resources.
The roller coaster of emotions have been incredible. Right now we are good (thank God) and I'm trying to stay focussed for my child's sake who is in a good place and excited about GOSH. My daughter has shared she is getting pain in a few places which has caused me some anxiety. I want to take away the pain but I'm limited, so I gentle rub the affected area and give some pain relief when she needs it the most.
I would like to hear from others who have experienced the MAGnetic treatment at GOSH or another hospital where its taking place.
How long was the operation and the overall length of stay in hospital?
What could you do after the operation?
Did you have to wear a brace?
Once home how long before returning to school etc?
How often is the lengthening taking place?
I have load more questions but any info would be appreciated.
Thanks in advance