My 13 yo son have an avm

Bravo pour la décision prise du traitement. Je suis très confiant pour vous. Un an avant votre fils je me faisais opérer - et tout s’est très bien passé.
Bon courage pour l’attente.

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Waiting is a difficult time.

While I was waiting, I bought myself a medical wristband, so if I was away from home or work, I stood the best chance of people acting correctly and finding my medical records quickly. I bought a soft silicone bracelet, very much like those which were popular with younger people a few years ago. I also tried to divert myself with a hobby – one that required plenty of thinking. I’d say that the bracelet helped me feel safer and I’m sure the project helped me to spend less time thinking about my health but it was not as effective in improving my mind as the bracelet.

I was formally diagnosed in August 2016, had to wait for referral to neurosurgery until November and then had to wait for embolisation until April, so I know how slowly the months go by! They do hasten a little as you get closer.

Very best wishes to you both!

Richard

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Bonjour Arthur
I am glad your son has a date and sorry that its not sooner. As Don as said it is hard to wait…I had to wait through the holidays for my embolism as well.
Please keep us posted and Joyeuses vacances
Hugs
Angela

Having the date is really good, waiting is always really hard. I can only imagine the fact that it is your child would make the waiting even more difficult. Make sure you take care of you as well, your health and mental health. As parents we sometimes forget this important part. Take Care, John.

Toutes mes pensées avec vous.

Nathalie

Finaly, the 8 and 9 of february he had an embolization then surgery. He is fine after almost 2 weeks. He normally back to school on next monday !!!
His AVM was discovered due to a seizure (Big).
Located on temporal left brain.
For people who had the same surgery are you seizure free ? Médecine free ( keppra etc …) For thé moment the surgeon Ask to keep keppra during a year.

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Hello there, just catching up on the messages following your initial post.

I am so pleased all went well with embolization and craniotomy. This is also the treatment my daughter had. She had a rupture prior to treatment so surgery was an emergency. She too has bounced back and is going to high school in September. She is also on 1500mg of keppra a day. 2 x 750mg. Our neurosurgeon advised us she will remain on it for atleast one year and if no breakthrough seizures, they will review at 1 year point to see about weaning her off. I am a little nervous about this, as she presented with a seizure when her AVM ruptured. Touch wood, she has not had any since taking the medication. I do know though she has some scarred tissue in her brain from bleed and surgery.

May your son continue his amazing recovery.

Best wishes

Sarah - Millie’s mum.

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