how old do you have to be?

Hi everyone, sorry havent been on ina while...but i was wondering...when your 18, do you have the right to decide whether you want surgery or not, because my mom will not let me get surgery, shes totally against it, i mean I dont blame her, its a big thing but i guess ive given up on asking her and i guess i have to wait till im 18...so anyways back to my original question can you schedule your own surgery when your 18? or do you still need parental consent, cuz if it was up to my Dr.  he alrerady told my mom that whenever she could schedule it, i could have it....its was supposed to be on april vacation...that never happened...medicines DO NOT work....my neurologist...(not my neurosurgeon)...thinks im like crazy, and just wants surgery..which is so wrong cuz he has no idea what pain im in all the time. the only one i like is my neurosurgeon cuz hes the only one that actually wants to take the initiative and help me. oh well, i guess i have to wait a couple years....ugh

[selmaS]

HI...well this is a very sensitive issue.....may I ask who is ur dr?..is it ia chiari specialist.The reason I ask is, a NS only does surgery...that is how they get paid...so they will say itis up to u but I will be able to do it...

Did this dr give u a % of benefit he feels u will receive from the surgery?It is important to know all these things...do u have a CSF blockage?

DId u get a 2nd opinion from another NS?

I am not taking ur mom's side....or saying u should wait...just wondering if u have the right dr....mom's radar might be saying something....look beyond her reluctance at the dr and see if mayb u might benefit from another opinion.

"selma"

[chiarigirl11]

my dr's name is Dr. Butler, im not sure if hes a chiari specialist, he said that i would benfit from surgery and he said i has a 4-5mm herniation and said there was reallly little fluid....and yes i got a second opinion which i hated...wasnt a good dr. and my mom even didnt like him so..i didnt continue with him

[rod44]

I'm with Selma on this one, not just because of your age but we all need guidance when making a decision like this. Have you talked with your family doctor about this, they will know your history and would look at things with an open mind, your mother has your best interest in mind and such a decision is not an easy one for her.
As you know there is no guarantee that the surgery will work, it is not a cure,  it is something that needs to be thought out, weigh up the benefits  V the risks.

Ray

[jacmurphy]

I'm very new to the whole chiari thing. But as the mother of a newly diagnosed son I'm with Selma and Ray.
The last thing in the world I want is to see my son in pain. I bet your mum is the same and would do anything to take your pain away. I want someone to tell me to feed him 3 McDonald happy meals a day and his chiari will disappear. But that's not going to happen.
And I bet your mother is as confused about all this as I am. It's much easier to make decisions like this when it's for ourselves than it is when it's  for our children.
Listen to your Mum (We really do have that Radar thing!) And talk to your family doctor. and get a 2nd opinion. And then listen and talk to your Mum some more. Your mother isn't making this decision to keep you in pain. It's because she wants to be sure she makes the right decision.
I'm not saying i'm with your Mum on this.. just that I can understand where she's coming from.
Knowledge is power... empower yourself... ask the right questions talk to the right people and if and when the time comes feel confident that you can make an informed decision.

[denverluv]

What are your reasons for wanting the surgery? What are your moms reasons for not wanting you to have the surgery?

[chiarigirl11]

My reasons for surgery are because i've has a headache for 3 years straight.. no relief, im so tired of it...over the past few years ive has to qquit thing i loved to do like dancing...acting class..chorus just because of this awful headache...ive tried every medication you can think of and none have worked..surgery is my last option..i always try to stay positive but its getting ridiculous...i have so many other symptoms too from chiari....it has taken just a huge toll on me and i wanna try anything...and my moms reasons for not letting me get the surgery is because shes afriad..and dont get me wrong,,i know that must be so hard to see her child in pain but she just cant do it and make the decision of letting me get surgery...(thats what she told me anyways)..i understand her being scared but its not her suffering, its me and i know she knows that...she just thinks of the worst case scenario. i mean maybe im wrong and she is doing the better thing...but i just dont know...

[selmaS]

HI...well I am sure u r aware that surgery may not help ur HA's and could cause them to be worse....
Surgery is not a fix or cure...I know u know this from being here as long as u have been....and there r no guarantees...

Do try to get to a true chiari specialist and mayb they can see a way to explain the benefits to ur mom.

I do know how u feel trust me I do...I had HA's while in high school...and they lasted until I was 48...and since my surgery, I still get HA's...not like b4...but I am not pushing to do thing s either and when I do, I have to take a few days off in bed.

I do not know what other symptoms u have or if u have a CSF blockage....or over crowding...these things would be the top reasons for ur drs to stress to ur mom to help prevent a syrinx to form...which if left go could potentiality cause perm nerve damage.

Hang in there

"selma"

[denverluv]

Selma is right- and have you tried to talk to your mom calmly about why you want the surgery? Maybe, though, your mom does want you to wait because if something happens, she wll feel so bad. We don't see you so we dont know how bad your headaches are, but maybe she feels like they are not bad enough yet to risk the potential things that could happen with the surgery. And as Selma said, the surgery is not going to cure you, and you may in fact get worse. Are your headaches so bad now that you are willing to risk a stroke, or dying from meningitis from the surgery? A stroke could leave you paralyzed, unable to talk, dependent on someone for the rest of your life. Is it really that bad at this point? Or do you think maybe you can find other ways to learn how to deal with your headaches? What if you got the surgery and your headaches did get worse? Would it have still been worth it? Do you have any other symptoms? Are you at a point where you could be paralyzed from the condition- like, I know with me that if I don't get mine fixed, I will be paralyzed. I am having symptoms of numbness, hard to move my legs, my arms get tired easily. At this point I run the risk of being paralyzed either from the condition or the surgery, but my chances are better to not become paralyzed with the surgery than without.  You need to decide if the surgery is worth having a stroke or something else happening. Because although it is rare, it has happened to people and you need to decide if that's ok with you. You have to remember, moms have a way of feeling if things are right or not- and if she is feeling that surgery is not ok right now, maybe just start to think about waiting, and instead of focusing on everything that is wrong, think about what you CAN do. Then tell yourself if things get worse by the time I am able to make this decision on my own, then I will go for it.  I am a mom, and it would be very hard for me to put my child in that position unless I thought for sure that there was no other way.  Keep your head up! Talk to your mom about these thngs after you have thought about it,look online for everything about Chiari surgery, the benefits, the complications, the risks, print out all of your info so you can talk to her clearly about all of it. She will be more likely to listen and see  your side of things if you can show her you have thought about everything, not just the benefits, but the risks too. Good Luck and let us know what happens.

[chiarigirl11]

thanks everyone...i know you guys all feel what i feeeel and some may even feel worse then me. and selma i give you so much credit for dealing with these headaches till you were 48! i dont know how you did it.. i'll try talking to my mom calmly again and i'll let everyone know what happens.


~Elle~

[*Stormy*]

HI Elle

It is a hard decision...I think you should keep pursuing it with your mom b/c most importantly..it should be followed up closely.

Unfortunately, we don't have a cure for this...and what we do have comes with a lot of risks...

Good luck with talking to your mom but ultimately what should really be taken into account is how your feel your symptoms are affecting your life...and whether you feel that is worth the risks of surgery. At 16..it sounds like you have your head on straight and you mom needs to listen to how you feel!! I know there is fear but on the other hand this is not going to go away either...

Take care
Carolyn

[selmaS]

Elle,

It wasn't by choice, but not finding a dr to listen...and believe me I did try...and saw way too may drs over the yrs.....

Seeing this from ur mom's perspective...as a mom myself, I know she is aware of ur pain and is trying to find the right drs...and ones that say u need surgery and they can do it does not mean they r the ones u want.

Hang in there...chiarians r stronger then they realize : )

"selma"