What should i do

[xxMusicSaviorxx]

Hello
I am 15 years old and i also have chiari malformation. I was diagosed about 2-3 months ago due to domestic violence that took place in my house. I have headache, backache, muscle pain in arms and legs. My mom dosent want me to have the surgery becuz she thinks it in my head and she "doesnt want to hear it". Medication does not make a diffrence so i have to go to school while im in pain. This chiari thing is really messin up my school work and i dont know how long i can take it.I get more than enough stress from my mom, school, and other stupid stuff that HAD to happen. So any advice on what i shoud do. Any treatment? Plez  =( And Thank you

[xxMusicSaviorxx]

Well I went to the Physical Theripist(I'm not sure if thats the kind of doc i should be seein for the situation) and she gave me some electricity in the muscle(idk what it called) and that did NOT help at all. So today i have to give her a report on how i feel. And again LOADED with homework and the pressure of finals on my back. soo yah and Thanks for advice =)

[selmaS]

Sending good vibes~~~ and prayers that u feel better at least enuff to BS ur way to up ur grades and get doen what u need to and that ur dr visit goes well.

Keep us posted when u can.

"selma"

[xxMusicSaviorxx]

Hey again im in school cuz for some reason i cant go to my post at home. so i'll update here at class. and right now i wanna drop down and die on the floor cuz it feels like it killing me. plus i have a bunch of homework that i want to bs on, but there is only 2 more weeks untill break and i need to bring up my grades. UGH! i really hate how my life is going now, but im trying soooo hard to get my grades up. So yah, now i gotta finish my homework.
PS: i think my next doc appointment is this thurday so i hope somthing good
happens.

[selmaS]

Moms do tend to keep our best interests even if we r not privy to what or y they do what oe when they do things : )


I am glad that ur mom has shed light on what she is doing so u understand and do not feel alone or frustrated....as this condition can make u feel that way with support.

Hang in there and do keep us posted : )

"selma"

[xxMusicSaviorxx]

To everyone

Well symptoms are still occuring but my ma wants to put the appiontment off untill january. Cuz i just found out the reason why she has been cancelling. she wants to wait cuz she just added hospitalization to our insurence but it is not valid till a month. she is taking the possibilaty of me havin surgery. Sooo she is FINALLY taking my symptoms seriously. Right now my goal is to make it through a month to see a doc.
ssooo ..yaaahh

[trippmusic]

I'm so sorry for all that you are having to deal with. We'll keep praying and pray specifically that she won't cancel any future dr appts. I suggest keeping a log of your symptoms daily, whether they worsen or not. Keep track of it all and take it with you to dr. It'll come in very handy at appts especially if your mom isn't listening to you when you try to tell her. Even though it's hard keep hanging in there. You'll get the help you need if you keep telling people about it. Don't let them sweep it under the rug or tell you your crazy, because your not! And even if you don't wanna tell your whole story, talk to your counselor or school nurse about what's going on. That way if something happens at school they'll at least have some idea of your history medically which is important.

We'll keep praying for you. Keep us all posted and know your not alone.

Penny

[xxMusicSaviorxx]

well i've have given my ma lots of info on the chiari, and what did she say" I dont want talk about it right now" And my ma isnt certain that i was born with it because i never told her about the intense headache that i have when i was little. back then i though that it was normal. Any ways she wont even bother to look at the website cuz we are still dealing with a situation now.

To everyone

   i am very mad cuz she said that i would see to doc. on monday but she canceled it and moved it till later. reason why was cuz she needed to meet up with the lawyer, which i totaly understand. I'm just mad at the fact that i did not get to tell the doc. about my symptoms that slowly are growing. And right now i'm at school aand i feel like i'm going to pass out (but that dont happen to me )with my head murdering me and homework. lol
so ya.

[trippmusic]

also, you need to assure your mom that what ever the domestic violence was, it wasn't the cause of the chiari. chiari malformation is something you have always had. the incident only allowed doctors to discover the chiari. now that you know it's there, you can do something about it.

God is pretty cool that He can take a horrible situation on make something good come from it. if it wasn't for what happened then who know when or if you would have ever found the chiari.

as I said, we'll be praying

[trippmusic]

the best way to convince your mom will be to respectfully give her lots of information on chiari malformation. knowledge is the key! make sure she knows you aren't trying to argue with her or be disrespectful but you want her to really undetstand what's going on. we found the website www.conquerchiari.org was a great help for us along with all the information and support her on medhelp. let her know that you understand that she may be scared of the thought of her child needing brain surgery but if she reads the information she'll learn that the surgery is the ONLY treatment for the condition. good luck and know that we will be praying for you and your family during this time. let us know if there is anything else we can do let us know.

[selmaS]

Good luck tomorrow !!

Please post an update and let us know how it went : )

"selma"

[rod44]

Good to hear that you are going to see a doctor, hopefully you can get some answers soon



Ray

[xxMusicSaviorxx]

Its normal. And i finaly convince to take me to the doc. Its on monday.

[selmaS]

I know a few that have found relief with acupuncture....it can depend on the technician..so try it and show ur mom u r willing to try her way and u might get her to look into other chiari drs.....?????

And u r not sure if they did a CINE MRI on u....
DO u know how ur BP is?...high or low?

"selma"

[xxMusicSaviorxx]

I have had headaches (intense pulsing, knife-stabing), needles poking the center of my back, muscle aches, pain in my arms and legs, dizziness, balence problem (somtimes), neck pain.

P.S. Will acupunture work? cuz my mom is thinking of it, it just i dont like the fact that needles will be in my skin. I know some say that you dont feel it. But if i know what will happen, i will freak. plus i cant keep still for very long.

[selmaS]

Hi...so sorry everything is so mixed up for u right now....but  I did want to clarify that a NL=neurologist is not the same as a chiari specialist...a true chiari specialist is a Neuro surgeon NS....and u do see a NL to get the dx  of chiari.....

And not all NS r chiari specialists...a lot to take in I know and confusing....but trust this, u want a true chiari specialist only if u have a syrinx or a CSF blockage and overcrowding.

Surgery is not a cure or a fix for this- u can get worse or develop other conditions and issues from the surgery.....

Besides HA's what symptoms have u had?

"selma"

[rod44]

Violence is unacceptable no matter the circumstances, this will not get better, you need to talk to someone who is responsible and willing to help.
With your DX of Chiari you may need treatment, you will need further medical testing, if a doctor recommends treatment be it surgery or drug therapy and your Mom is not happy then ask her to get a second opinion however your Mom needs to understand she is not qualified to contradict doctors recommendations on less she has a medical qualification........

Ray    

[xxMusicSaviorxx]

For SelmaS
I am guessing that a neroligist is the same thing, but at the time i was only sufferin backpain and numbness. So at the time he didnt recomend it. And for the report, I dont have them. I have a terrible memory so i cant remember what happen to them.sooo yah =/

For Penguins57
My mom did see the MRI scan, she still shook her head at the fact.Her exact words were "oh i dont want to hear it, I get enough of your lil brother and his father."(My lil bro is a diffrent story)I want to have the surgery to get the pain away. And what is making me even more stressed is that the freakin police have not gone after my stepfather from his 2nd violation an restraining order.Gggr just thinkin of him makes my headache worse.Plus my mom is also against meds. she dont want me killin my liver slowly. soo yeah =/

For denverluv

I dont want to tell my school counselor cuz my mom is gonna have to explain everything on how it started which pretty much is telling my freakin happy (sarcastic) life. I really dont wanna do that. And i know after that she is gonna make the same conversation in which she will drag my dad into this then they will get in a fight.And the story goes on. soo yup =/

For pamk5

I do have stable relatives but (1) they dont know about my chiari malformation or about my idiotic stepfather so that will be alot of explainin(2) we are not that close(to me they kind of feel like strangers)in distance.Plus i had ENOUGH of moving( moved 8 times) soo guess what yah =/

  
And Happy ThanksGiving to All  ( = >

[pamk5]

I am so sorry for your home situation and that you are going thru so much, so young.  Having been a battered wife for 13 years and finally getting the courage to leave 10 years ago I can definitely understand what you are going through.  Having Chiari on top of that really stinks.  I dont know how bad your situation is and if you and your mom are in danger call a hotline if you feel that you are, urge her to go to a shelter with you or something.  If that fails is there a stable relative that you can stay with?

I would agree with Denver and reach out to your counselor at school, they can find resources for you and maybe even call in a social worker to work on your behalf.  

Maybe urge your mom to read some of the post here and learn more about the condition.  With education sometimes comes understanding.

Keep us posted on what you find out and how things progress.  Good luck to you sweetie.

[denverluv]

not knowing the domestic violence situation (and dont need to know sweetie) I am wondering if maybe you can talk to your schools counselor? Maybe they can help you talk to yuor mom. Also you CAN call your doctor and have them call you and tell them what is going on - your doctor might be able to talk to your mom as well.
Let us know - and check back in with us - there is always someone here willing to talk to you. :)

[Penguins57]

Hi! I am a 16 year old with chiari and I went thru a lot of the same stuff you did, except my dad was the one who thought I was making it all up. My school work last year started to get soooo bad, and my concentration and memory were terrible. I had a lot of bad symptoms that started to take over my everyday life to the point where I didnt wanna get up in the morning...The best thing to do is to relax and stay calm. Try meditation! I also found excedrin migraine really helpful, even tho u should b like 18 to take it, so talk to your doctor about tht. The thing you need to do to prove to ur mom that u need the surgery is get more testing done, show her with the testing that ur cerebellum isnt normal. The thing that changed my dads mind is that he saw an MRI i got that showed significant decrease fluid flow from my brain to my body. Thats wen he agreed that i needed the surgery. Till that happens, stay calm. You are not alone with wat you're going thru. I feel so sorry for you because I was in ur shoes exactly at age 15. But I had my chiari surgery March 9th, and Im SOOO much better. It was a miracle, and I got to continue my life after surgery. God bless you.

[selmaS]

Hi and welcome to the Chiari forum.

I am so sorry to hear u r going thru home life issues as well as chiari all while trying to be a teen...no fun!!

Do u know if u were checked for a CSF blockage?....overcrowding?....do u have access to the report? of MRI films?

One person u have to win over is ur mom....u will need a parent to get more testing, and to be seen by the drs.

In the mean time, relax as best u can...most meds will not touch a chiari HA.....a warm soak in a tub....

Ur environment does not sound the best.....to relax in....

Do u know if the dr u saw is a Chiari specialist?...did they offer or suggest surgery?...if so, y?...not all with chiari r surgical candidates.

Happy to have u join us, so sorry for the reasons.

"selma"