When I’m typing here, My son on the bed is keeping retching and moaning. My heart was broken since August of 2016. My lovely son was diagnosed substantial AVM on his left hemisphere by MRI.
The symptom is getting worse and worse since this was found last year. From minor headache to heavy headache,nausea,soft hands/legs,visual disturbance and retching. On his 4th years, he had a seizure and then sent to hospital without finding the reason. I pursusaded the paeditrician to send my boy to MRI scanning after he experienced very often headache and bad sleep. Finally it end up finding this big AVM problem.
I saw two nerosurgeon doctor in Melbourne, one is from Melbourne Royal Childrens’ hospital and another one is from private clinic. Both have some conclusion that this AVM is inoperatable and nothing can be done. Radiotherapy is not suit this case too because this is diffused big AVM with more than 4 feeder artery. I have no other way but to see my boy suffering and eventually to die. And this is not the worse case, the worse case is my boy is become PVS.
Honestly, I’d rather like he can go to heaven than suffering this kind of pain everyday. I’m keeping asking myself why such a young kid experience so much pain? Why not me??? I’de like the God can transfer the terrible AVM to me. Bible says, Jesus like kids. Is this true???
I’m planning to bring my boy to China or US to see other neurosurgeon.Because I believe there are much much cases in these two countries. Maybe the neurosurgeon in these two country have different opinion, good bless. I wish they can offer some treatment plan. Does anyone have recommendation to see which neurosurgeon in US specialized this kind of AVM.
Here is comment from first MRI(Actually it’s diffuse AVM no nidus from neurosurgeon):
The examination demonstrates typical apprearance of very large AVM in the left cerebra hemisohere. The nidus is likely to be close to the trigonal portion of the lateral ventricle. There is exetensive abnormal vasculature in the parietal, occipital and temporal lobes.
the venous drainage is both to substantially enlarged superfical veins including the basal vein of Rosenthal and also centrally to the peritrigonal veins and thence to the vein of Galen and the straight sinus.