Hello everyone, I'm a newbie :)

[Krissy_c]

Hi..my name is Krissy and am I 30 years old. I was diagnosed with chiari malformation last summer. My symptoms are getting worse and it's driving me nuts!! I considered myself to be a very active person but not anymore, luckily I am still working but everyday I wonder how I made it through. I don't think my husband thinks serious and chops it up to me being lazy! Trust me I would rather be up and around rather than laying in bed all the time. I'm happy they finally diagnosed me because the hubby thought I was just suffering from depression...I would take depression over this any day!
I saw a NS and within 5 minutes he told me that surgery was the only thing I could do. This is an extremely scary thought for me (I made the mistake of looking at the surgery on YouTube) I have a 7 year old daughter and am extremely frightened that the surgery will make things worse. I've heard the horror stories of people having to have multiple surgeries!
I'm just looking for people that understand the same pain and frustrations that I do! Thanks everyone! Can't wait to connect with u all!

[linnielou232]

So sorry to see we had to meet this way, but so happy to see that you found this site.  It has been a blessing to me and has gotten me through a lot of hard times.   I know how you feel as being active and having Chairi really get's to you after a while, but as Selma suggested get a 2nd oppion before going through with this just to make sure you have the best.  I am going on 3 yrs of recovery and now not able to work so my life has changed so dramatically, but I would do the surgery again because it does help.  I now deal with other issues such as sensitivity to lights, noise etc but these were probably all here with me before surgery but never noticed them because of all the pain.  Just know your not alone in this and we here all understand what you are dealing with.  Please come to us any time it helps to talk to people who understand and I know this site has picked me up so many times when I thought I would fall apart.  Wishing you better days ahead my friend.  
Linda :)

[klacy]

Hi Krissy my name is Kelly, I have arnold chiari malformation i had surgery 15 years ago my problems are back and I have to have surgery again....I do know your frustrations I get so upset because i can't be myself do anything because everything makes my head start.....I have neck pain, shoulder, arms, leg pain i hate it i think i have syringomyelia with it because of my symptoms.....Hang in there i know its hard with kids i had my surgery when mine was 5 months, and 16 months old so its hard now mine is 15 & 16 years old so then can help me but it still makes it depressing....My eye doctor the other day said my optic nerves r dying out from the pressure in my eyes and if i don't have the surgery ill go blind....I have no insurance so it makes it hard..I wish u well and if u have any concerns plz contact me and again hang in there

[padrssuck]

Just wanted to say hi. Sorry ur here with us, but glad u joined us if that makes sense ;) i know all too well how the headaches tiredness and as selma called it, the chiari brain can affect u. My husband and i have similar "arguments " about be being lazy versus not being able to get out of bed. Feel.free to.message me anytime. My symptoms came on all of a sudden too (severely) landed me in the hospital with a debilitating headache that never went away. Im 28 so i guess mine started at the same age as urs did. As i have looked back at things i have dismissed as other problems over the years i have realized that a lot of it was chiari i just never knew it. I had decompression surgery in  the beginning of JanuAry. I havent found relief yet, but i am still hopeful  it will come....

[selmaS]

  It is possible to have spasms all over really...I had more in my back and shoulders as well as my legs.....

To help stop it u may want to try  a muscle relaxer..talk to ur Dr  about that...and try to figure out what the trigger may be....

For me my eye would twitch when I was over tired,,....and spasms would happen if I did too much,

[Krissy_c]

I will have to try that method thanks :)
Def not an inner ear thing, that's what my primary care physican thought it was and referred me to an awesome ENT. He did what felt like a million tests on me and couldn't find anything. That's when he ordered an MRI and they found the chiari and then it was off to the NS.
I have a question, has anyone complained about spasms in the head? It seems like every night near my temple but more in my hair it spasms like crazy!! I can actually feel it move! I need that to stop ASAP! Lol

[selmaS]

  No worries...feel free to ask nething....I hope that method helps.....I tried it, it may have worked a few times....but, it can be a slow process if u oversleep and have some where to be...lol....

But it is also good to know if it is inner ear issues or Chiari.

[Krissy_c]

It's not as soon as I get out of bed but within 15-20 mins. Thanks so much for answering all my questions, u have been a blessing since I don't personally know anyone else with this disorder!

[selmaS]

  Do u notice it as u get out of bed or later?....U may want to try  a method used for inner ear issues, it is called the Eppley manuver....google it and give that a try....

  For those with Chiari many of us do have anxiety and it is not really from the symptoms but Chiari itself...so try to tell urself this is a neuro sensation and see if u can talk urself out of the anxiety...

Yeah I had heart palps too and had my heart checked....the problem is Drs do not see the big picture to connect the dots...they see each symptom as a separate issue....

Yes, we call it the Chiari brain....it can affect memory, cognitive issues ...emotion....so many things,...even mood...

[Krissy_c]

I've tried the Dramamine as told by my doctor but that didn't help :(
I have extreme dizziness and very unbalanced almost immediately after I awake. My legs and arms often fall asleep, along with my newest lovely symptom...headaches. I also get pains in hips and legs pretty much everyday.
My doctor gives me Xanax because the dizziness and feeling of passing out gives me major anxiety, it seems to help but doesn't take it all away.
I am blessed that it only took 2 years to get diagnosed but it was crazy my symptoms came on all of a sudden (felt as if I was going to black out) so my husband took me to the ER and all they could find was my heart rate was abnormal so they sent me to a cardiologist that couldn't find anything wrong.
Oh and I am starting to be forgetful, is this a normal part of chiari?

[selmaS]

  Hi, yes I had surgery it will be 4 yrs this May.....

Many take the non drowsey formula of Dramamine to help with the dizzy issues....it can help but does not help everyone, but worth a try.

2 yrs is not a long time when u consider many of us have had symptoms all our lives....u may have more symptoms u r not even aware of....as u learn more how Chiari affect u, u may see that u have more then u thought.

May I ask what all u r dealing with?Symptom wise....

[Krissy_c]

Thanks so much for the response! I'm def going to weigh my options but I'm going on 2 years with these horrible symptoms (took them a year to diagnose me) that I am desperate for relief! The NS had me do physical therapy for 12 weeks which seemed to make things worse. The physical therapist had never heard of this malformation and had me doing things that were not so good for my neck.
Did you have the decompression surgery? Is there anything else that has been helpful with relieving the dizzy symtoms??

[selmaS]

  Hi and welcome to the Chiari forum.

First let me say...do not rush into surgery take ur time find the right Dr and make sure ALL related conditions are ruled out as many can affect how u feel and heal...so to help avoid a bad post op experience or multiple surgeries, do the most u can b4.

Not all with Chiari are surgical candidates and it depends on how it is affecting ur overall health and ur symptoms.

SO find the right Dr that is a true Chiari specialist, one with the experience u need, one that knows about how the related conditions can affect u.

We do have a list of Drs for ur use as a tool to research. the list is NOT a referral....

If there is ne way we can help, please let us know : )