Sorry, this is my 2nd time posting this. The 1st opted didn’t go thru… I think
As some of you know, my daughter’s NL stated that she did not recommend surgery, becauseshe doesn’t believe that her symptoms are directly related to her Chiari.We have an appointment soon with a NS because I need another opinion.She is a senior this year and she’s having a really hard time. She has daily migraines,Nausea, depression, anxiety, extreme fatigue, panic attacks, dizziness and trouble processing information.It breaks my heart when I receive texts during the day telling me “mom I feel stupid” or “I feel like I have some type of autism”… all because she just cant retain the information. Especially math. I’m reallyscared that she may not graduate. Her migraines interfere a lot because she wakes up with them. She’staking ADD meds that aren’t working and make her feel really bad. My main concern is, does she have to sufferlike this because her NL doesn’t believe that her symptoms attributed to her chiari? I’m shocked. Doesanyone else experience memory loss, ADD/ADHD or processing problems? It kills me to not be able to help her. That NS appt can’t come soon enough. I’m sick and tired of fighting with the school because they know absolutely nothing about chiari.
I too suffer from awful memory loss i sometimes cant even remember wat i did five minutes ago it kills me because i have a young son and i feel like i cant remember important moments in hes life things i should remember. Im not sure if this is the same as what your daughter feels is happening when she's trying to process something but i feel like im listening im understanding but yet i cant seem to make head nor tails of it sometimes i need things repeat and even at that i still might not get it. Please tell her not to feel stupid its the chiari thats makin her not able to remember or process things not her.She's not alone we are all here to help and support in anyway we can i hope ive helped a bit im not really good at explaining things sorry for that. please let us know how ye get on with the NS love and support to ye both of ye are in my prayers.
Thanks Caroline. I never knew what was wrong with her so I would just brush it off when she complained to me. I didn’t want to feed into her complaints because I often thought maybe she’s just having a bad day. I posted this because I wondered if there are other chiari and who have trouble processing things. You sound just like my daughter. Her NL is putting a 504 plan together for her. Hopefully her teachers will work with her. She already has really low self asteem so not graduating would crush her.
Caroline Power said:
Hi tonya,
I too suffer from awful memory loss i sometimes cant even remember wat i did five minutes ago it kills me because i have a young son and i feel like i cant remember important moments in hes life things i should remember. Im not sure if this is the same as what your daughter feels is happening when she’s trying to process something but i feel like im listening im understanding but yet i cant seem to make head nor tails of it sometimes i need things repeat and even at that i still might not get it. Please tell her not to feel stupid its the chiari thats makin her not able to remember or process things not her.She’s not alone we are all here to help and support in anyway we can i hope ive helped a bit im not really good at explaining things sorry for that. please let us know how ye get on with the NS love and support to ye both of ye are in my prayers.
Your very welcome as i said im not the best at explaining myself. I'm only 23 so understand how your daughter is feeling i too suffer really low self asteem. I remember when i was in school hiding at the back of class feeling like i was an idiot a teacher even ask if i was stupid one day. I'm not happy to have this but i'm happy i now know that i wasnt stupid or an idiot just not well sometimes my friends make fun but thats just there way of dealing with it they dont know about it and i cant really explain to them what it is. I still have bad days where i wish i was able to remember and understand things but i also remember i have great friends family and a wonderful husband and im sure all your daughters family and friends are there for her too not forgetten all of us here. If she ever needs to talk im hear to listen and offer support.
Hi Tonya! I am a graduate student at OSU. I have a HORRIBLE time with memory loss, processessing and memorizing info. Even applying what I have learned or remembering how to use a formula from 2-3 minutes ago. I graduated with a bachelor's degree back in June suma cum laude...now I am getting C's in graduate school. Something changed for me big time over the summer. I totally understand what your daughter is going through - it really interpheres with school and learning. It's just an awful feeling to know that others can do things you cannot. Tell her to keep her chin up! There are those of us who know what she's going through and she's not stupid!!!
I'd say go get a second opinion or a third or a fourth. Sounds like the surgery might help her! I am having surgery very soon for my Chiari to help me. My NS made me see the good in it for me.
I have experience teaching high school...and most of the teachers I taught among would not have understand if they had a student like that. I don't understand teachers or schools being like that! I can't imagine the problems you're having.
You and your daughter are in my thoughts and prayers!
Thank you Katrina! You’re comment just made my day! I’m new to this whole chiari thing. I’ve realized that something wasn’t quite right with her but I just couldn’t put my finger on what it was. Now I feel like the ADD diagnosis is wrong. None of the meds she’s tried have worked. Having a tough time in school has taken its toll on her self asteem, which has lead to depression. Now I see how so many people go misdiagnosed for so long. I so happy to hear that you are in grad school. Hang in there! I hope the NS has a good feeling that surgery will benefit her. This kid deserves a damn break! Most of the posts I’ve read on this site talk about headache, pain in arms, legs, dizziness, etc. I really haven’t found anything about problems with memory or processing information. Your post makes me feel like she’s not alone. Thank you so much! Good luck with your surgery and grades!
Katrina S. said:
Hi Tonya! I am a graduate student at OSU. I have a HORRIBLE time with memory loss, processessing and memorizing info. Even applying what I have learned or remembering how to use a formula from 2-3 minutes ago. I graduated with a bachelor’s degree back in June suma cum laude…now I am getting C’s in graduate school. Something changed for me big time over the summer. I totally understand what your daughter is going through - it really interpheres with school and learning. It’s just an awful feeling to know that others can do things you cannot. Tell her to keep her chin up! There are those of us who know what she’s going through and she’s not stupid!!!
I’d say go get a second opinion or a third or a fourth. Sounds like the surgery might help her! I am having surgery very soon for my Chiari to help me. My NS made me see the good in it for me.
I have experience teaching high school…and most of the teachers I taught among would not have understand if they had a student like that. I don’t understand teachers or schools being like that! I can’t imagine the problems you’re having.
You and your daughter are in my thoughts and prayers!
I AM SO GLAD I MADE YOUR DAY!!!!!!! I am new to Chiari too. Diagnosed on 10/18/11.
I hope that if she knows there are others out there it will help her self esteem. Teens these days have enough trouble with peer pressure and peer judgement that leads to those problems without a neurological disorder. I hope that her self esteem will soon be restored, and her depression lessened. If she needs someone to talk to, please feel free to have her email me. I am not much older, I'm almost 23. It's not the same as being 17 or 18, but I've been there. I had "bad days" when I was in high school frequently, I heard the student's comments and had poor self-esteem. Of course I had no idea what was going on, and didn't tell anyone for fear that they would judge me worse. I was lucky I found my "niche" with 4-H and FFA that raised my self esteem. I hope your daughter finds something similar. No young woman should have to feel that way!!
I just saw your comment about a 504 plan. You need to make sure that you stand up to the school, make sure they honor it. It is a legally binding document that all the teachers must adhere to. When I was in a public school it was difficult for me to know that some teachers shrugged off student's IEPs and 504 plans...it's their job to meet the student's needs. While most teachers are great, there will always be the few who don't want to do their job. My bachelor's degree is in secondary agricultural education, and my specialization of my master's degree in ag education is special education. I've taken some classes on things like this. Make sure they honor that 504 plan, some teachers and schools try to take the easy road and not truly make the modifications to meet her needs. She deserves the help she needs!! If you need help making a case to the school, let me know. I know enough about education policy and law to be helpful. If I don't know, I'll find out.
THANKS SO MUCH FOR YOUR PRAYERS!!! I'm convinced that's the only thing that keeps me going most days!
Praying for you as well! God bless!!
Tonya J. said:
Thank you Katrina! You're comment just made my day! I'm new to this whole chiari thing. I've realized that something wasn't quite right with her but I just couldn't put my finger on what it was. Now I feel like the ADD diagnosis is wrong. None of the meds she's tried have worked. Having a tough time in school has taken its toll on her self asteem, which has lead to depression. Now I see how so many people go misdiagnosed for so long. I so happy to hear that you are in grad school. Hang in there! I hope the NS has a good feeling that surgery will benefit her. This kid deserves a damn break! Most of the posts I've read on this site talk about headache, pain in arms, legs, dizziness, etc. I really haven't found anything about problems with memory or processing information. Your post makes me feel like she's not alone. Thank you so much! Good luck with your surgery and grades!
Katrina S. said:
Hi Tonya! I am a graduate student at OSU. I have a HORRIBLE time with memory loss, processessing and memorizing info. Even applying what I have learned or remembering how to use a formula from 2-3 minutes ago. I graduated with a bachelor's degree back in June suma cum laude...now I am getting C's in graduate school. Something changed for me big time over the summer. I totally understand what your daughter is going through - it really interpheres with school and learning. It's just an awful feeling to know that others can do things you cannot. Tell her to keep her chin up! There are those of us who know what she's going through and she's not stupid!!!
I'd say go get a second opinion or a third or a fourth. Sounds like the surgery might help her! I am having surgery very soon for my Chiari to help me. My NS made me see the good in it for me.
I have experience teaching high school...and most of the teachers I taught among would not have understand if they had a student like that. I don't understand teachers or schools being like that! I can't imagine the problems you're having.
You and your daughter are in my thoughts and prayers!
I’m pretty sure from the other posts you have seen that this is common.
I’m having a terrible time with this right now. Like now I’m struggling to even think of what I wanted to type. It’s very frustrating. I can’t even imagine trying to go to school like this.
I would definitely get another opinion. Good luck to both of you.