I think it’s a general symptom of the injury actually. In the beginning, I slept up to 18 hours a day. Your brain needs a TON of sleep to heal. Even now I still try to get 11-12 hours to feel fully rested. Plus, if he’s on anti-seizure drugs, those can also add to the effect.
Hi Mdiam,
How long ago did you have your AVM?
January 2012, so almost a year and half ago.
Did you have surgery on it?
When my son was in the hospital, the doctor didn't seem to be in a hurry to perform surgery on my son. He would just say something like, "we"ll wait and see if he"ll need surgery". Honestly, I don't think the doctor thought my son was going to make it through this. But, some doctor's forget that they don't have the last word, God does!
Yeah, I had an emergency craniotomy. They tried embolization most of the day, but those kept failing, so they did surgery. Yeah, the doctors don’t always know what’s best, & they are hesitant with treatment… Did they embolize your son’s AVM??
He did not have a craniotomy, but the doctor made a burr hole in his head to drain the excess blood and cerebrial spinal fluid. It drained for about 4 weeks and then the doctor placed a shunt in my son's head.
Is this what you mean by "embolize"?
Sorry, I'm not familiar with all the medical terms.
Hi Hope23,
I chose to respond to your post because I go through this daily/weekly and have been since my diagnosis. I'm not sure what causes these bouts of extreme fatigue but today has been one of those days. I have days where my body feels completely drained and tense, my head and back are killing me, and I curl up and say I'll nap for about 30 minutes. When I wake up, three hours have passed and I'll feel completely lost and it's almost as if I have to "find" myself. There are also nights where I can't sleep at all due to pain and others due to insomnia....and perhaps my body clock being off. It's a slippery slope and also something I've been told varries from person to person, but I wish you and your son the very best. You'll be in my prayers.
Jessica
Thank You Jessica.
Have you talked to your doctor about how you feel when you wake up from a nap. Could it be anxiety?
I wish you the best of luck and you will also be in my prayers.
Hi, Hope23 - I was wondering how F is. bye, :)atnt
I actually don’t know what a “burr hole” is. I don’t think it’s an embolization though. An embolization is when they use an instrument which they put up through a blood vessel in your leg & it goes up to your brain & shoots glue at the bleed to stop it up. Then they go back in to get rid of the rest of it in 3-5 years…
hi my son is or was having the same symptoms and they tried a drug called amutiden and it has a lot of side affects but it took his tremers away and gave him a boost to do physio and ocupationial therapy he also started to try to talk and now 2 months after taking this med is saying all his vowels I love you and a lot more three word sentences and we took him off the sleep aid and gave him a natural tea to induse sleep and it works great hope this helps and stay strong it is a fight for there lives to be as normal as possible my son is paralized on his right side and we are now 7 months in to this and is showing signs of moving his right toes and leg it takes a lot of time good luck and stay strong
I'm so glad to hear about your son's improvement, Rich!
I'm so glad to hear about his progress, although the side effects mean that progress comes at a cost, but hey - sometimes we'll take what we can get. Thanks for the update! best to you and your family. :)atnt
Hi Hope23....from reading the posts here i would say that the medication and depression THEN the AVM are all contributing factors to your sons condition.
I would advise the Neuro ASAP and seek further medical advice to address these issues. What you are doing is great for him as far as being positive etc and i would continue to do so as he will pick up soon...its never easy for us AVMers but its also very hard on our close ones also.
Hope he gets better soon and my prayers are with you guys at this time...keep us posted and God bless