My AVM ruptured on April 22 2013 but it wasn’t discovered until almost a month later that it was an AVM or that there was a serious issue at all.
I am two weeks out of hospital now and currently waiting to hear when my op will be (I am waiting radiotherapy treatment but my consultant is absolutely useless and I’m completely in the dark about everything)
Lately I can’t sleep which I’m sure isn’t helping but I keep getting tingly tight sensations on the left side of my head behind my eye and its worrying me - should I be worrying? I’m just so scared its going to rupture again or that ill get worse so every little thing panics me at the moment.
Also, my left arm and leg go numb quite a lot and I really struggle to walk and us my left hand - is that normal?
I guess I’m here to just seek some reassurance from fellow sufferers and survivors and to gather as much information about all aspects as I can so I know what to expect, what to do, how to rect to certain things and so on so I’m literally asking for any help or advice her and it’d all be so so appreciated.
Hey Gemma! A) Try not to worry too much, you'll be OK. B) That is weird about your arm and leg going numb, that actually has happened to me a bit lately, and I'm a year post-op. I think I'm going to ask my neurologist the next time I go in, but you should probably give your's a call since you are still pre-op, just to make sure it's nothing to worry about. That is really bizarre that you can't sleep. I was so exhausted after mine ruptured. Maybe it's because it wasn't as bad a bleed as mine though, & you haven't had surgery yet. How did they stop the bleed? I'm sorry I can't give you much info, I just don't really know what you're dealing with. I'd just check in with your doctor, if anything, he'll want to know about it.
My husband also had issues with walking and use of his left hand. He is now 1 year post radiation. Make sure you understand everything about the radiation and side effects before you have it done. We did not and wish we would have asked more questions, we felt like we were in the dark when he started had side effects from it. Try not to worry, and get some rest!
Have his issues with walking and left hand improved? What were his side effects from the radiation? How did he respond to the treatment? I am sorry to hear that you were in the dark about it all, it’s a horrible feeling! Ill try, thank you. Hope you and your husband are well.
Hello! Thank you, I’ll try to calm down its all just still very daunting as its still all new and I’m still very much in the dark about everything. Yeah the numbness is a concern, I’m unsure if its avm related or because I have been immobile for so long - I have an appointment with my consultant Saturday so ill me tigon it then. I slept a lot at the time of the rupture, I think that’s why I can’t really remember a lot but now I’m on a steroid tablet and am really struggling to sleep despite hoe exhausted my body is, it’s a really weird feeling. Thanks for the info
no problem! If it helps, they gave me melatonin in the hospital because it was so loud there, and I couldn't sleep sometimes because of it. I'd check with your neurologist, maybe he or she can prescribe something.
His walking has improved, hand not as much. His is a side effect to radiation and the location of his AVM. As well as necrosis. They believe it is closed off but has not had a angiogram to confirm that just MRIs. The first year after radiation was like he had never had anything wrong.
I’m glad to hear his walking has improved slightly - ill be sure to inquire about my own walking/hand situation and why it’s happening or if radiation will effect it either way. I hope it has closed off but the fact he’s now like he had nothing wrong (despite his arm etc) is hopefully a good sign of that!
