So an update on my little princess.
My 6 year old granddaughter has a 3cm grade 3 eloquent AVM which has now developed an aneurysm so the gamma knife is now not an option. Her craniotomy is booked for the 14 August. Surgeons are unsure what her movement and touch will be like after but have warned she will need rehabilitation which could be weeks or months.
To say I’m petrified is an understatement.
Would appreciate any advice on what to expect immediately after surgery.
I can’t provide any advice post surgery, but know we have a great community that are and will be here for you. Positive side is there is an option, and she is young which is hugely in her favour. Being petrified, in my estimation, would be exactly what I would be! I like to say that in my family I’m lucky it as me that had the AVM, and not my wife or kids. Thinking of you, John.
Thank you John.
Just want it all done and her up and running!
We then have the potential that it can grow back!!! Only happens whilst she is a child - 20% possibility - so she will be checked regularly until she reaches adulthood.
I do hope you are well and your AVM kicked into touch.
Take care
Jackie
Jackie,
We all understand!
You’ve reminded me of a news article I saw recently about a couple in Leicestershire whose daughter has had over a dozen operations for a brain tumour – and I’ve found the article!
I think what surgeons can do these days is astounding and I think children’s resilience is equally astounding. I hope this might help:
Very best wishes,
Richard
Hello, my son had an AVM which was 4.5 cm wide removed from the parietal lobe when he was 10. It had started to bleed when he was pushed at school and within two days of this happening he was operated on. We were told to prepare for a long hospital stay and months of rehabilitation. But children are somewhat tougher than adults and he was only in hospital for a week with paracetamol as his only pain medication. His hair covers his horseshoe scar, which was very sensitive for many years after his surgery and he will have his last MRI when he is 23 to make sure everything is fine. It has not come back and I am so very lucky to have him. I understand that everyone’s case is different, I just wanted to let you know how much stronger children can be than adults. I hope her surgery goes as well as my sons x
My 14 year son suffered an AVM rupture in August 2022. He had to undergo craniotomy surgery. I truly expected his recover to be terrible. I read that he could experience severe headaches. To be honest with you the recovery was extremely smooth. Directly after the surgery he did experience some pain. I wouldn’t say it was severe. He was in moderate pain and pain meds helped this while he was in the hospital. His hospital stay was seven days and he was up and walking about by the time we returned home.
Try to think positive it is scary. However with therapy and determination your grandchild can fully recover. My son’s situation was a bit different because we were unaware that he had the AVM. You are ahead of this and you can prepare yourself. To be honest my sons hair covers his scar and one would never know what he went through. He has full mobility of the affected hand and arm. His speech has returned to normal. He does have some sensory loss in his hand but other than that it’s as if nothing ever happened. Kids are very resilient. I am praying for your little one and I know all will be well.
Hi Rebecca,
Thank you so much for taking the time to tell me about your son. You have no idea how hearing his story has helped eliminate some of my worries. I feel more confident that all will be well. X
Hello Mommyof1,
I’m so pleased your son is fit and well and his story has certainly made me feel more confident that my little princess will make a full recovery. She’s a tough little cookie and kids do seem more resilient and tend to cope much better than we think they will. I will certainly be glad when the operation is over and she’s on the road to recovery.
Sending all good wishes to you and your son.
Jackie x
Your son is very fortunate to have had such a fast and complete recovery following his rupture. I’m very happy for you both.