Replies to This Discussion

Permalink Reply by Nea's Mom on June 11, 2010 at 8:34pm

Hi Diane,

My daughter, Nea had a bleed/stroke and crainiotomy in March 2009, so it' been 15 months. She's doing pretty well, all things considered. But she, too, has memory issues. She returned to university in September but ended up dropping all but one class that first quarter. The next quarter she again had to drop a class, completing 2 of the 3. She did complete all 3 classes this last quarter. But it's been very hard for her. Not only does she have memory issues that make getting decent grades very hard, but she also says she barely remembers Sept thru Jan. This makes her sad because she doesn't want to just complete college, she wants to relish the experience. She's talking about taking a year off. Last year was just so hard.

I think Nea's issues are less profound than your daugher's. But I do understand a bit of your family is experiencing.

One of the things that we found a bit ironic is all the WORK it takes to take advantage of the various disability programs in her college. Nea can sort of laugh about it... that if she was able to physically do all she needed to do (get to the office, make appointments, request special test taking environments in time for her professor to be notified before tests) she wouldn't NEED the services.

I do hope that since our girls are relatively young, their brains will learn new ways to process information.
Please feel free to contact me if you want to share the good or the bad. I check in here frequently.

Permalink Reply by Diane K on June 11, 2010 at 9:51pm

Thanks for the reply. It was good to learn your daughter has problems too. Katie is so hesitant to mention anything to her professors. She alternately decides she has to but then backs away from it. I have to say it never occurred to me that this stuff would be going on 3 years after the bleed. I think it's more noticeable now because college is a more independent environment. I can only hope that once she's out in the world, she will find it easier -- less constant demands on learning and memorizing material. And thank you. Appreciate your response A LOT.

Permalink Reply by Lisa Wilson on June 12, 2010 at 10:03pm

hi diane
my daughter had 2 embolisations and a craniotomy last july, so although not a year yet she is having ongoing problems which are very hard for a 15 year old to deal with. we have been given the all clear with regards to the avm but she has been left with the loss of her lower peripheral vision which she finds very frustrating as at times she bumps into things or knocks them over. her concentration is not as good, but this appears to be due to her vision getting worse when she has to do alot of reading or concentrating. her school is in the process of helping and she has been given extra time etc for exams, but at 15 she doesnt want to really be different!
we have had a few weeks of bad headaches again with numerous trips back and forth to hospital, even though they say it has gone, my heart skips a beat when she mentions headaches. initially she had a few months of bring very well and the vision didnt seem to bother her, but i suppose as time has gone on and she feels physically stronger, things like that become more annoying. i thought it might have been over but it seems we will forever be planning and thinking about solutions for her in her life.
lisax

Permalink Reply by Diane K on June 13, 2010 at 9:12am

Lisa

Katie had the partial blindness also, affecting both looking down and to the right. After a while your daughter will still have the missing spots but her brain will adjust and it'll seem as though she is seeing what she normally sees. I know, pretty strange. But her blindness should fade over time, Katie's is now about 80% normal. The school allowed her to sit wherever she could see most, gave her notes etc from the board and she didn't have to bullet in test circles on exams. Don't be afraid to advocate strongly for your daughter, even if she seems reluctant. The school system in general doesn't completely understand the often 'hard to see' deficits of head injury so you have to educate and find those in your system that can support what you say. For example, when Katie had a terrible time passing Algebra 2 (which she had been handling fine prior to the avm bleed) they accepted the mark mid way thru as 'final'. She took one course less each session, had a resource period where someone helped with homework, classwork. And we chose to give her the ACT rather than the SAT and got someone to intensely tutor her. She got a good enough score which was the goal. Katie also had 'read to' accomodations, extended time, frequent breaks, and reduced course load). It all helped her get thru high school.

Lisa Wilson said:

hi diane
my daughter had 2 embolisations and a craniotomy last july, so although not a year yet she is having ongoing problems which are very hard for a 15 year old to deal with. we have been given the all clear with regards to the avm but she has been left with the loss of her lower peripheral vision which she finds very frustrating as at times she bumps into things or knocks them over. her concentration is not as good, but this appears to be due to her vision getting worse when she has to do alot of reading or concentrating. her school is in the process of helping and she has been given extra time etc for exams, but at 15 she doesnt want to really be different!
we have had a few weeks of bad headaches again with numerous trips back and forth to hospital, even though they say it has gone, my heart skips a beat when she mentions headaches. initially she had a few months of bring very well and the vision didnt seem to bother her, but i suppose as time has gone on and she feels physically stronger, things like that become more annoying. i thought it might have been over but it seems we will forever be planning and thinking about solutions for her in her life.
lisax

Permalink Reply by Sandie Alger(Kasey's mom) on June 24, 2010 at 10:23am

Hi Diane,
ohmygosh...I can totally relate. My daughter, Kasey, is also a freshman in college. just finished freshman year and she had gamma knife in 2007 also. She will hardly talk about her avm and likes to just act like it's not there. She has had trouble with her grades also, even though she is quite bright. She suffers from bouts of depression and insomnia and has some stange mood swings where she lashes out at family or friends and says unbelievably cruel things when normally she is sweet as pie. We are left to wonder if it is from the avm or is it the gamma knife...or is it the anti-seizure meds? I like to blame it on the meds. The list of side effects is pretty long & awful. I guess I feel that if we could get the avm cured, then we could wean her off the meds and all will be fine.
Your daughter may have a deficit that causes her the inabillity to organize and execute a plan. Or she could be very much detaching herself from the problem and so doesn't want to help herself. I've seen that in Kasey also. Her friends(she's down to about 2 friends) told me of her depression and were worried for her. I can't even get her to talk to a therapist. She says "I just want to be normal!!!" I wish I could make that happen. That's what we ALL want!
I've definitely heard several people on this site talk about their memory problems. I don't know if it's permanent or will get better as time goes. You may want to read some of their posts.
You are not alone. It think it's hard when your child is technically an adult, but she's still your baby, yet you can't just do everything for her like you could when she was little. It's frustrating to say the least! Hang in there. I'd love to hear an update from you.

Permalink Reply by Nea's Mom on June 24, 2010 at 11:53am

Sandie,

Nea suffers from depression, too. Most of the time she says she's just sad, but every once in a while she's slammed by unreasonable grief and sadness and I worry about this. We think it's the meds, too. She was on Keppra, 500 mg twice a day. We switched to 1000mg 1/day with no relief. We're now on 750 mg / day and this seems better. Less occurrances of the really awful bouts and when these occur they don't seem so overwhelming to her.

Sandie Alger(Kasey's mom) said:

Hi Diane,
ohmygosh...I can totally relate. My daughter, Kasey, is also a freshman in college. just finished freshman year and she had gamma knife in 2007 also. She will hardly talk about her avm and likes to just act like it's not there. She has had trouble with her grades also, even though she is quite bright. She suffers from bouts of depression and insomnia and has some stange mood swings where she lashes out at family or friends and says unbelievably cruel things when normally she is sweet as pie. We are left to wonder if it is from the avm or is it the gamma knife...or is it the anti-seizure meds? I like to blame it on the meds. The list of side effects is pretty long & awful. I guess I feel that if we could get the avm cured, then we could wean her off the meds and all will be fine.
Your daughter may have a deficit that causes her the inabillity to organize and execute a plan. Or she could be very much detaching herself from the problem and so doesn't want to help herself. I've seen that in Kasey also. Her friends(she's down to about 2 friends) told me of her depression and were worried for her. I can't even get her to talk to a therapist. She says "I just want to be normal!!!" I wish I could make that happen. That's what we ALL want!
I've definitely heard several people on this site talk about their memory problems. I don't know if it's permanent or will get better as time goes. You may want to read some of their posts.
You are not alone. It think it's hard when your child is technically an adult, but she's still your baby, yet you can't just do everything for her like you could when she was little. It's frustrating to say the least! Hang in there. I'd love to hear an update from you.

Permalink Reply by Diane K on June 25, 2010 at 6:56pm

Hi Sandi.

Wow -- real similarities. The moodiness and lashing out and being seemingly unkind to others. Katie doesn't take any meds at all so it has to be the AVM or the embolization or the gamma knife. I did some research on embolization and did find that memory loss is a problem, something I never realized. Katie lost left side vision and had speech problems much more severe AFTER the embolization -- but then her AVM was in what they call an 'eloquent' area.

And it's very definitely executive function stuff, and that in turn seems to make it harder for her to take the steps to advocate and use her accomodations. She gets so upset by her inability to achieve what she wants. I honestly think the further away we get from the procedure the more apparent it becomes that things have been affected so much. It's subtle but reaches into so many areas.

I will definitely come at update here. Next week we have another meeting with disability staff at her college. This past year I let her steer her own course (which is what both of us wanted) but I think she needs more support, more structure, if she's going to get where she wants to be. What a thing to have right at the beginning of your life.

Thanks to everyone for the feedback. It's so helpful.

diane

Nea's Mom said:

Sandie,

Nea suffers from depression, too. Most of the time she says she's just sad, but every once in a while she's slammed by unreasonable grief and sadness and I worry about this. We think it's the meds, too. She was on Keppra, 500 mg twice a day. We switched to 1000mg 1/day with no relief. We're now on 750 mg / day and this seems better. Less occurrances of the really awful bouts and when these occur they don't seem so overwhelming to her.

Sandie Alger(Kasey's mom) said:

Hi Diane,
ohmygosh...I can totally relate. My daughter, Kasey, is also a freshman in college. just finished freshman year and she had gamma knife in 2007 also. She will hardly talk about her avm and likes to just act like it's not there. She has had trouble with her grades also, even though she is quite bright. She suffers from bouts of depression and insomnia and has some stange mood swings where she lashes out at family or friends and says unbelievably cruel things when normally she is sweet as pie. We are left to wonder if it is from the avm or is it the gamma knife...or is it the anti-seizure meds? I like to blame it on the meds. The list of side effects is pretty long & awful. I guess I feel that if we could get the avm cured, then we could wean her off the meds and all will be fine.
Your daughter may have a deficit that causes her the inabillity to organize and execute a plan. Or she could be very much detaching herself from the problem and so doesn't want to help herself. I've seen that in Kasey also. Her friends(she's down to about 2 friends) told me of her depression and were worried for her. I can't even get her to talk to a therapist. She says "I just want to be normal!!!" I wish I could make that happen. That's what we ALL want!
I've definitely heard several people on this site talk about their memory problems. I don't know if it's permanent or will get better as time goes. You may want to read some of their posts.
You are not alone. It think it's hard when your child is technically an adult, but she's still your baby, yet you can't just do everything for her like you could when she was little. It's frustrating to say the least! Hang in there. I'd love to hear an update from you.

Permalink Reply by Diane K on June 25, 2010 at 7:03pm

Hi Sandi.

Wow -- real similarities. The moodiness and lashing out and being seemingly unkind to others. Katie doesn't take any meds at all so it has to be the AVM or the embolization or the gamma knife. I did some research on embolization and did find that memory loss is a problem, something I never realized. Katie lost left side vision and had speech problems much more severe AFTER the embolization -- but then her AVM was in what they call an 'eloquent' area.

And it's very definitely executive function stuff, and that in turn seems to make it harder for her to take the steps to advocate and use her accomodations. She gets so upset by her inability to achieve what she wants. I honestly think the further away we get from the procedure the more apparent it becomes that things have been affected so much. It's subtle but reaches into so many areas.

I will definitely come and update here. Next week we have another meeting with disability staff at her college. This past year I let her steer her own course (which is what both of us wanted) but I think she needs more support, more structure, if she's going to get where she wants to be. What a thing to have right at the beginning of your life.

Thanks to everyone for the feedback. It's so helpful.

diane

Permalink Reply by Mary Peterson on December 1, 2010 at 7:00pm

Hi Diane,
I am sorry to hear of your daughters struggles, I so understand and it breaks my heart. My son Tim at 15 was daignosed with an AVM (2007), after he colapsed they found an enormous AVM in the back left ocipital lobe that burrowed through into his visual field. They did 2 embolizations and than a 15 hour surgery. Tim lost his right visual field (heminomus hemianopsia). He had mobility training, PT, OT . Tim too refuses to accept he has learning problems.
He also is considered disabled with the state, and receives services that way too. Tim is now a Sophmore in college, but like your daughter Tim experiences retention issues which is a total frustration, he was an A student and barely makes a C now. Its agonising to watch him suffer. He has long and short term memory issues which doesnt help with organization, though his college having all the same services you stated, it doesnt seem to help Tim.
Tim seems to be experiencing intense bouts of depression, and talks about not wanting to live. He loved life before this and jumped at every challange with shear happiness, its just so sad now. He is in therapy but that doesnt seem to help anymore. I am scared and worried for his furture. He's such a wonderful, kind loving and freindly person.
The realization of what the AVM removal took from his life gets more real every day. I too am at a loss and our challange to help and move him forward is somewhat overwhelming. His disablities will have a huge impact on him. I seek all and any advise, suggestions or help to get him through.
I hope your daughter finds a way to come to terms with her disabilites, I am told that if they can that life can be so much easier.. how do you get them to do that??
I wish you and your daughter the best!
Mary

Permalink Reply by erin lyn hurley on January 3, 2012 at 9:23pm

Hi there. I'm sorry to hear about everyone having problems too. My son has problems. He's has vision issues, learning issues and outbursts. It's been 10 years since his embolizations. They are only getting worse. I wish I could give you some hope that it will get better, but I can't. Your best hope with thea schools are to get traumatic brain injury accommodations for you kids. It is what they have. It covers everything.