My son had his AVM rupture almost 3 years ago. He has been in a wheelchair since. He was recently diagnosed with neurological scoliosis and will be having a spinal fusion (with rods) soon. Has anyone had a similar experience and did the spinal fusion make you more comfortable ? How long did it take you to heal from surgery?
Thanks for your feedback.
Hi Randee. My 14 year old daughter has a brain avm and scoliosis due to a connective tissue disorder. We are waiting for a diagnosis for this. We originally thought it was ehlers-danlos but it is now looking like loeys dietz or possibly both. She hasn’t had any treatment yet for any of her disorders
I wish her (and you and your family) the best of luck with everything.