Just looking for support!!

[hairsarestylin28]

Im a 28 yr old female, full time hairstylist. The last couple of years I have dealt with sore jaw, headaches, fullness *cotton balls* in my ears (probably my worst symptom) Throbbing in my head after getting up or sitting down or *straining*. Blurry vision, tired eyes, ringing in my ears.  My ENT specialist sent me for a mri and I found out I have a 11mm herniation, chiari type 1. I have yet to hear from a neurologist, so now Im playing the waiting game. I was so happy to hear that I wasnt crazy, and that there was actually something wrong. It was to the point where I just hid how I was feeling because I felt embarrased of feeling like **** every day. Im happy they figured out whats wrong, but now Im feeling so stressed out waiting to hear from the doctor. I even had a panic attack last night thinking about it. anyways, Im just looking to make friends with someone who is going through the same thing. what it comes down to for me is that I just want to live a normal life and be here a long time for my husband and kids. If anyone has any tips or advice plz send it my way! thanks!
sylvie

[linnielou232]

I have to agree with you on this website.  Since my husband has bought me a lap top I'm on here each evening reading what is going on in each of your life's.  It hellp's so much knowing we have a Chairian family to come to and talk.  I think you can tell on all my responses that I am on here all the time, but it is comforting.  Nice to see you on here.  Haven't seen you on here in a while.

[cash242]

I hope that this sight gives you support I didn't find it or look for it until I was 2 mo post op and wish I had found it sooner.  This is the place when I am feeling alone in my pain that I can go and know that I there is a community of wonderful people dealing with the exact same thing even though it may be alittle different they get that the word headache is not to be taken lightly! Welcome and best of luck on your journey!

[hairsarestylin28]

Thanks so much to everybody That responded. When I dont feel well, I like to come on here and read what everybody has to say and find strength in that. Good news though!! I have an appointment with a neurologist on the 31st, and I hear he's very good. Hope everyone is doing well, :)

[linnielou232]

I know have Chairi isn't easy, but I think we have all been on your journey.  It took me over 3 to 4 year's to actually be dx's with it, and along the way and each doctor I went to had another illness for me..  It is a relief when you find out that your not crazy as some times I feel with all the pain that we have to deal with.  Our loved ones can try to understand but this website has been a blessing to me because we all know what each other is going through.  I have learned just to appreciate 1 day at a time and try to except the thing's you can no longer do.  It's a hard one to except, but something we all have to do.

[selmaS]

  Hi and welcome to the Chiari forum.

I hope ur OBGYN is aware of ur Chiari and knows u should have a C-section to avoid straining during birth...otherwise u may develop all the symptoms u do not have right now.... straining is on way to trigger symptoms to flare or start.

I wish u all the best with ur pregnancy and delivery : )

    "selma"

[selmaS]

  Hi...for me the best way to sleep is on my left side, with the head of the bed elevated that way I am not flat, this not only helps with head pressure, but with the reflux issues I have as well.

Massage therapy is ok as long as the PT therapist knows about ur chiari and does not get too rough around ur neck...in fact they should really avoid ne manipulation of it.

"selma"

[hairsarestylin28]

Thanks everyone. Nice to get some feedback. I have a feeling my csf is not flowing properly, as I feet alot of lightheadedness and pounding especially after waking up. I'm  assuming when laying down your csf can get blocked by your herniation? does anyone know the best sleeping positions for chiarians?
It feels so good talking to other ppl who understand! :)

ps: is massage therapy safe to get done with chiari?

[kassieann]

Its so ironic how i found this forum. i am 32 weeks pregnant and i have chiari type 1 also. and my cerebellum is also exactly 11mm to low and i have no symtoms at all. i found out i had chiari when i was 14 and im now 18. i think its so weird how our chiari is the exact same and u have so many symptoms and i have none. i felt so scared and it made me wake up crying almost every night. it took a while for me to just "over look" this but i eventually did. it is great to know there is someone to talk to.

[selmaS]

  Hi and welcome to the Chiari forum.

Finding the right dr is the  2nd half of the battle.....the first half was getting a dx....for many of us it took yrs.

The size of ur herniation is not as important as knowing if u have a a CSF obstruction....
There r a few more tests that should be done...a CINE MRI to see if u have a blockage to ur CSF....overcrowding and related conditions like tethered cord, sleep apnea, disk issues,ICP, ehlers-danlos......

We all understand how u feel...and getting validation that indeed something is wrong is something most of us r elated to finally receive....even tho it is not something ne of us want.

Find a true chiari specialist...we compiled a list of the members drs, this list is not meant as a referral but as a means to help u with ur research to locate the dr that is right for u.--http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

  U will need a NL to do all the testing and see if they can dx u with nething else and  then find ur NS...keep in mind most NL's do not believe chiari causes symptoms...

Always ask for copies of ur MRI's and the reports so getting a 2nd opinion is easier on u.

    "selma"

[cekj79]

I'm in the same boat.  However I have seen a neurosurgeon.  I have all of the symptoms but he seems to believe that my horrible headaches are due to something else, he doesn't know what.  
I don't have much advice right now, but try not to worry too much.  I've noticed that my symptoms get much worse when I stress.  Don't beat yourself up when you have to get some rest.  I have a 1 1/2 year old son so I know it's hard to do.  
Hope you can see a neurologist soon!
Beth