Chiari Online Support Group

Hey, any other teenagers here? I'm Kayla!


#1

Hey what’s up. I’m Kayla :slight_smile:


#2

Hey Kayla, Welcome!

My name is Seenie, and I’m a Ben’s Friends volunteer who works on the team that looks after all forty-three of our rare disease support communities. Lots of people here don’t realize how easy it is to see another member’s profile. All they have to do is click on the other person’s avatar (picture or initial) and ka-bam there it is:

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So you’re from the great state o’ Michigan, your a teenager, and you’d love to find some other people your age with Chiari. I’ll help a bit: I’ll change up your subject line

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to help with your search.

Hope this works for you. BTW, did you know that you can search this site using the magnifying glass (just to the left of the hamburger menu next to your avatar, upper right) for things like “teen” or “teenager”? Maybe “high school” would work as well. Give it a go: you never know who you might find. (You might even find somebody who’s really old but kinda nice. Like me. ROFL …)

Good luck with your search!

Seenie from Moderator Support


#3

Hey Kayla. I am Stephanie. I am not a teenager, but my daughter will be 13 on June 14th. She has been diagnosed with chiari malformation and i joined this group to find some other people who were going through some of the same stuff that she is going through. It has helped alot just to have someone to talk to, vent to,and bounce ideas off of. So, just remember that u r not alone in all of this and if u have any questions or just need someone to vent too…this is a great place to do just that.


#4

I am so relieved that there are others like me. I hope she’s doing well- My symptoms personally are a pretty hard struggle but I just hope others aren’t as bad as me. I can see that this group is really nice, I can read up about my symptoms, and I actually found out some of my issues WERE symptoms I didn’t even think about.

I hope your daughter has a wonderful 13th, and I would hope she checks out this website sometime on her own as well. Maybe she can find something you don’t, or can find relief- etc. whatever the case, always wishing well <3


#5

My daughter is very shy, and her Dr’s have taken her out of school for the rest of this year due to her symptoms. The neurosurgeon has told us that her does have to have the decompression surgery as soon as she loses 10 more lbs. I dont know if her weight gain that she has had over the past couple of years is related to her chiari malformation and the cyst in her spine or if that is a complete different problem…but it is making things so much worse. I can’t understand how the Dr’s expect her to lose weight when she isnt able to do much exercising due to severe headaches, dizziness, and blurry vision. She has had a tough time with this, but I thank God everyday that things aren’t as bad as they could be. How are you and your family handling things? I know from a mother’s point of view…it is very difficult to see our child in so much pain and not able to make it better.


#6

I am sorry your daughter had to leave school. I know leaving friendships and other things, like activities at school, or maybe a favorite class can be difficult. Especially when you have to leave for something you can’t comtrol, like an illness. I have been missing a lot of school, from absences and going home early- The lights at my school we’re too bright, triggering my sensitivity to light and causing worse migraines. I ended up getting sunglasses about two weeks ago, which do take away a bit of the pain I get. My doctor never said to just take me out, but he doesn’t really know that much about Chiari regardless. My school has stairs, so of course I have a struggle with those- losing balance, and dizziness. I also have lost feeling in my legs at school, to which I just collapsed on the ground which was scary, that was before I got diagnosed. But that’s how school goes for me currently, and there’s so much more.

I haven’t gone to the neurosurgeon yet, I go on January 18th, so that’s a bit of ways to go. I have noticed I have a little bit of weight gain, and I agree it is very difficult to lose weight, especially if you’re on medication, and of course the symptoms of Chiari. I have a trampoline but I can’t use it, because a couple months ago I dislocated my knee (from which I think the Chiari I didn’t know I had at the time, caused.) and I’m scared to get injured again. Other exercises are difficult but I try to do low-energy exercises like push ups, pull ups… etc. warm up like-exercises. I used to be in dance but of course had to leave, for obvious reasons.

My family is all handling it differently. My mom is the one who listens to me all the time. Her and I are working on a better diet right now, as we speak. My dad and brother dont talk about it a lot. My dad researches it but doesn’t say a lot about it. My brother just doesn’t talk about it a lot and kind of makes fun of it- in a sibling joking way, so I don’t mind. My grandma kind of tells me stories of her experiences with surgery and other stuff, because I’m the most like her, medically. She gives me tips and other stuff. My friends don’t like talking about it, but they don’t understand at all. I don’t expect them to.

I read your message to my mom this morning, and responding to the end part, she said, “She took the words right out of my mouth.” So I guess, from a parent to parent she understands.

I hope your daughter gets that surgery- I haven’t read much about the results, but what I have read has been that it relieves the symptoms. Personally I want to get the surgery, because medications don’t seem to be working. Anyways, what symptoms does your daughter experience? Does she have any tricks to relieving some of them, that’s not medication? Does she experience all the symptoms, or just a few? I’m really curious to see if younger people like me experience all the same symptoms I have, and to what severity. :slightly_smiling_face:


#7

I am so sorry that the medications are not working well for you either. Lakan has alot of the symptoms that you do. She also has ringing in her ears, she sees light orbs and blurry vision, severe headaches and neck pain, dizziness, depression, difficulty with comprehension. I offended have to repeat things for her and give her instructions 1 step at a time. She has good days and bad days. Some days she has difficulty walking due to the dizziness and overall weakness. Recently she says that when she gets too hot (which is very frequently) she feels like there are pins and needles sticking her all over her body. The neurosurgeon said that was from the cyst in her spine causing spinal cord compression. She is due to have the decompression surgery as soon as she loses 10 more lbs. The surgeon is worried that her lungs could collapse if she does not lose the weight before the surgery. Tell your mother that I know how difficult this is for her to go through and if the dr that you are seeing doesn’t know much about chiari then maybe he/she can refer you to a specialist. We see a neurosurgeon Dr Shiflett at the Batson children hospital in jackson ms. And her neurologist is Dr parker. Lakan also has a very rapid heart rate, high blood pressure, she is fully developed and has a horrible time with her period. I hope some of this helps you and your mom and I am here if either of you have questions or just want to talk/text.


#8

I’m sorry that she has to go through that. I haven’t been checked for a cyst, but I often do get very over-heated randomly. It gets so bad that I have to take breaks from just doing anything! I also get pins and needles a lot.

As for her other symptoms, I get a lot of those as well. I think the light orbs in her vision are a lot like my static-like vision I get every so often. I get it every time I play my trombone in band,and also other times as well.

I think Chiari may affect periods, even though I haven’t read up about it, it seems like very likely it would affect them somehow. Mine skip months at a time, and I have been having them since I was 10 or 11, so it should be adjusted by now. It wouldn’t surprise me if the Chiari had something to do with Lakans as well.

I will tell my mom the message you said. We have been waiting for my neurosurgeon appointment on January 18th, (which is five days after my birthday!) for more instructions on what to do from here. Hope the both of you well <3


#9

I hope your appt in January goes well for you, and I hope you have a very happy Birthday. I will keep you and your family in my prayers. If you ever need to talk i am here. Best wishes hun.