I am new =)

[TJay13]

Hi everyone!  I found out last November that  I have ACM after years and years of doctor visits and them telling me it's all in my head due to depression and other sent me to physical therapy (which would make the pain on my neck worse) I got tons of x rays that showed nothing wrong but it wasn't til a car accident that I finally got what I had been begging for for year..... an MRI. My symptoms did worsen a little because of the accident but at least I know I'm not crazy. I get real bad spasms where my head and my neck connect and I have horrible balance and vertigo well I have many symptoms  that I am not a fan off. It's been hard emotionally since my family don't understand/ believe how intense my headaches and spasms get a long with everything else..... SO I decided to look into surgery but since I am still learning about the malformation I don't know if it would make it better or worse. So if anyone would like to enlighten me about your experiences before and or after surgery I would greatly appreciate it. I would also like to learn more about the symptoms and stuff since I'm scared to go back to my 80 year old neurosurgon.... thanks

[TJay13]

do you see results right away after the surgery or does it take a while? see is cuz i am so forgetful and clumsy and its taking over my life (im letting it) i felt as if surgery would be the only way to live a normal life but i dont know the risks on it or how bad you have to be before they actually perform surgery...... and also i read some one what matters is how wide the herniation is or something like that and i kinda didnt get it really

[irislita]

Hi and welcome...happy you joined us!!! I understand u so much.it ***** being so young and feeling so sick.i am 28 and feel so much older.i am 4 months post op now...so just write and ask me whatever u want ;) u r definetly not alone and without this chiari family i would feel so lost...

[Rylanesmom]

Welcome:) we all vent this is the place others understand.  Ditto those above I with make sure you are seeing a Chiari specialist.  I have not heard from anyone that did not get a run around medically before getting a Chiari diagnosis.  I am so thankful I finally had a name for it!  Everyone's journey is different I am 20 days post op and hopeful.

[selmaS]

  Never feel the need to apologize for venting, this is the place to do it and know everyone here understands and most feel the same way.

[TJay13]

Thank You both I am SOOOOOOO glas i finally found somewhere where i can express myself without having to hear from family that i am over reacting since i was like 12 i have been having this horrible spasms and noone knew what was wrong with me i am now 24 and was 23 when i was told what it was i feel so much better that i know what it is and that my family finally saw that i was not making it up but i suffer from extreme fatigue and honestly i dont know how to deal i felt like a faliure thinking i was just clumsy making all kinds of excusesfor myself about it and the pain and everything....im sorry im venting its just i wish it would go away so i can live a normal life i cant run i cant work out hard i cant laugh too hard i cant yell too loud i cant do alot and im only 24 thats why i was thinking of surgery thought it would make it all go away =(

[selmaS]

  Hi and welcome to the Chiari forum.

As Linnie mentioned u want a true chiari specialist..so research a few NS's b4 u agree to surgery...and make sure they test u for all the related issues as well B4 surgery is considered.

Do u know if u have a CSF obstruction, over crowding ? How is ur chiari affecting ur over all health?

   Do look at the list of chiari drs we have in the Health pages....the list is not a referral, just the members sharing their Drs names so u have a place to begin with ur research.

  Know that u r not alone, as linnie said many of us we lead to feel we were crazy, and too many Drs just did not listen....

  But with info on what the Dr should be doing, u know how to find the right Dr for u....and end that vicious Chiari run around we all go thru.

    "selma"

[linnielou232]

1st welcome to our forum.  You have come to the right place for answer's and guidance.  You will probably hear from a lot of us about the same experience as you have had.  Thinking you are crazy, and as we call it the Chirian runaround.  I was finally dx'd after 3 yrs of being persistant because I knew I wasn't crazy and that there was someting wrong.  I am sorry to hear you had to have an accident to find the answer's, but at least now you know what is going on and you can take the next step that is necessary for you.  A little of my journey.  After finding out I had Chairi I visited 3 different NS.  As every one on here will suggest you want to find a true Chairian specialist to get the best answer's.  They have a thread on here for you to look for one.  I finally decided on surgery because my life was not even living.  My headaches were severe, bending, etc I just couldn't enjoy life as it was.  Having surgery is not a cure, it slow's down the progression.  As for many on here we are all on different steps through this journey of Chairi, but we are all here to help and guide you in the right direction.  Some of the suggestion's I would give you right now is to get a copy of your MRI so when you go to NS you will have the info available and also start a list of question's that you have so you won't forget when you go into your visit.  I am just thankful that you now know what is going on and that there are answer's.  I have found that having Chairi is a life altering issue so I am thankful that you have found us.  You are not alone in this journey and we are here for you.  Wish you the best.
Linda :)