I’m in bits
I’m in bits……because Midge needs your help now!
We need £45,000 within 8 weeks!
Just had our meeting with the surgeon. God that was a mixed bag of news!
The hand xray…Midge is a Sanders 7. That’s not great, it means that by looking at her bones it shows she hasn’t got much growth left. BUT she is a Risser 3 which is a better score. This shows that she could have a little bit left.
The type of curve she has is progressive. This means that the bracing we have done, whilst it has kept the cobb angle down, hasn’t kept her back straight enough. A progressive curve like Imogen’s will progress at 1 degree per year meaning when she is my age she will have a 70 degree curve and by the time she is 50 it will be stopping her from breathing.
For this reason we really do have to operate now. His words were ASAP.
He talked us through fusion surgery: he said that due to the length of the curve he would need to go from the back of her neck (T1) to L3 which is almost at the bottom. However Midge also has spondylothesis in L5 S1 which means that if we fuse to L3, it will put too much pressure on the L4,L5,S1 vertebra because her spondy is at L5 S1. Spondy is essentially a fracture. For this reason, he would fuse from T1 to pelvis.
I am crying. I knew fusion would be bad, but I didn’t know it would be this bad.
VBT is obviously the other option. He would do two cords. The reason is that the curve is in a position where there isn’t a great deal of growth left but also it is quite likely that one cord will eventually snap. This is because of where her curve is. The cords would be under a lot of pressure because her curve is what they call thoracolumbar. (in the middle). He said he could do a revision surgery in the future if it is needed, but that not many children have needed a revision (he has only had one).
He said that the EDS massively impacts everything, he said the full fusion with the soft/fragile tissue issue of EDS means that it is likely to cause her pain as well as massively impacting her mobility.
I am so scared right now. You know when you research stuff as a parent and then you think…but I might be wrong, it might not be as bad as I think…and then it turns out you were right but also that it’s worse/more urgent/more serious than you imagined.
I’m in bits.
Mel, Midge’s Mum