hi everyone, my 14 year old has just had her 2 embolisations and surgery to remove her avm 3 weeks ago and i was hoping for some information as to what it is like on the road to recovery.
she has some blurred vision in the right eye, has anyone experienced this? did it improve over time, or stay the same?
she also has trouble concentrating at times, particularly with reading.
we have to wait 9 months for scans to see if it was all successful although the surgeon was pretty confident, but time will tell.
not sure what i want to know really but if you can give me some idea as to what your experiences are i am sure it would help.
thanks
My 19 year old had her AVM removed via surgery in March. We found that the pain meds she was on really had an impact on her ability to concentrate. Reading was impossible for her at first. But within a month she was reading magazines and within two months she was back to reading books.
She took a course this summer at the local college and did well. But she did say she has to work differently now, that she doesn’t always get the full picture of what the professor discussed in class but had to supplement this with more reading.
She also found that using the computer helped a lot in the early days… why it was easier for her, I don’t know. But it did help.
Congrats on this milestone! I hope it’s all smooth recovery for her from now on.
Every person is different, every AVM is different, and every surgery is different. That being said, I can tell you that I had horrible concentration problems for a few weeks after my surgery. I still have issues with that. Reading was definitely a challenge as well, but it improved over time. I can read well now, but not for long periods of time. I have vision issues (or lack of vision issues), but that was because of where my AVM was, that and that fact that I had a major bleed. Your daughter is still pretty new into recovery. I’m sure things will improve, but it can sometimes take a long time. I’m over a year post op. and some things haven’t improved at all, but some things are immensely better. I wish your daughter all the best in her recovery.
Hi Lisa,
I seem to recall that the doctors told my husband NOT to try to read or concentrate for a while after his surgery, because it drained him so much–which is not to say that that would be good advice for your daughter, but just to say that it seems normal that concentration would be hard at this point.
After recovery, my husband went on to earn several degrees, so even though it was hard to read and concentrate at first, the problem didn’t last. A lot of improvement happens after surgery.
Jorie
thankyou for your comment, good to hear things improve or else they adapt. i can see rosie is getting stronger even though it is only a few weeks since surgery. she has even managed to go to school for a few hours which has boosted her spirits although made her quite tired. we will just have to persevere with her eyesight and hope for the best. it is all early days.
take care
lisax
Nea’s Mom said:
My 19 year old had her AVM removed via surgery in March. We found that the pain meds she was on really had an impact on her ability to concentrate. Reading was impossible for her at first. But within a month she was reading magazines and within two months she was back to reading books.
She took a course this summer at the local college and did well. But she did say she has to work differently now, that she doesn’t always get the full picture of what the professor discussed in class but had to supplement this with more reading.
She also found that using the computer helped a lot in the early days… why it was easier for her, I don’t know. But it did help.
Congrats on this milestone! I hope it’s all smooth recovery for her from now on.
thanks trish. yes it is early days and i suppose i am just keen for it all to be ok. she has done so well and been through so much.
i wish you well
lisax
Trish said:
Every person is different, every AVM is different, and every surgery is different. That being said, I can tell you that I had horrible concentration problems for a few weeks after my surgery. I still have issues with that. Reading was definitely a challenge as well, but it improved over time. I can read well now, but not for long periods of time. I have vision issues (or lack of vision issues), but that was because of where my AVM was, that and that fact that I had a major bleed. Your daughter is still pretty new into recovery. I’m sure things will improve, but it can sometimes take a long time. I’m over a year post op. and some things haven’t improved at all, but some things are immensely better. I wish your daughter all the best in her recovery.
Hard to say, in my opinion, since we’re all different, etc.
But, I would highly recommend for any persons in school at any level (including college), get with the school to get extra help for your student!
Our son had epilepsy (non-AVM) and had surgery while at college. He signed up at the disability office and had people taking notes for him, helping him study, and tutor him–all at ZERO cost to him. Since he was having trouble concentrating from drug interactions, this service was fantastic.
Plus, since he was having seizures prior to the surgery, signing up gave him extra time for tests. Also, if he had a seizure before or during a test, he could excuse himself and take it later with no penalty. If he had to take a test following a seizure, he’d have to work hard to get a ZERO on the test!
I recommend it for anyone with special needs, such as AVMs.
Ron, KS