I'm ok for a few days/weeks about Emily's AVM, then the whole situation seems to take over and I get anxious and worried and just want things to get moving. We're waiting for our first appt at the Gamma Knife centre in Sheffield, but after phoning last week her outpatients appt isn't going to be until August, treatment (if it happens) not for 8 - 12 weeks after that. She had her bleed in Jan and it's taken numerous MRIs MRAs an angiogram and CT scans to get to the final decision of inoperable but hopeful for gamma knife. A couple of weekends ago Em had headaches and dizziness and felt sick, so we took her to A&E. She seemed ok and we came home with just calpol for the headache. She has now developed a red lacey rash on her thighs and arms, but no headache. Every day I dread getting a phone call from school to say she's got a headache or other symptom, but I also know I can't wrap her in cotton wool.
In a word: NOPE!
But it does get better. Our son had surgery for seizures 6 yrs ago, which was very successful and he's been seizure free since. When he was able to start driving again, I worried every time he got in the car. It's a little better now................ but still.
Best wishes,
Ron, KS
the GKR would take many years to do its job anyway, but there is hope - when i was young, my first bleed at 17, sheffield said i couldnt have the treatment at all - took me 7 years before i could have any treatment (now 34). Harley street gave me the chance, but that was after 2 more bleeds too!
But theres nothing u can do, but GKR is quite easy (had 2 doses) had no problems myself and have had 90% of my AVM removed.....so i would say there certainly is hope for your daughter...
Hi there!
I completely feel your pain! The worry will never totally go away. I have just come to accept it. The thing that helps me the most is praying. Second is to read about other people's battles and stay thankful for the fact the Sadie is "normal" most of the time. I see so many people and children that are struggling just to live and it really puts things into perspective for me. That's my best advice. Sadie is declared "AVM" free, but we have battled seizures for 6 years now. So I am mostly confident the AVM was completely removed, but not convinced completely and worry free. This kind of thing changes you forever. But I am trying to be changed in a good way and just be as thankful as I can. Good luck to you all :)
No my husband and 8 yr old son worry about me all day everyday. My husband calls me 3-4 times a day from work to check up on me and when I dont answer he does slighly freak (on the inside) until he talks to me. He is always worried about getting a call at work that Im on the way to the hospital with a horrible headache which could mean a bleed or swelling. Or that I have had a grand mal seizure. Then there is me that is ALWAYS worrying that my son will find me or that something might happen to me. Its a horrible feeling that we can never shake and it SUCKS SO BAD. Wish I could make you feel more comfortable but this is the real life AVM stuff :( Best wishes to you all and prayers as well. I have also had 2 gamma's with a possible 3rd needed. My AVM is inoperable as well.