I was told I have chiari malformation I. It was discovered after i had my first daughter and i began getting sever headaches and nothing was helping. Not only was i having headaches but i had tingling and numbness in my feet and in my hands. Amongst other symptoms that became scary. after having a reaction to a medication i didn't go back to the doctors for about 2 to 3 years later with more annoying symptoms. After all kind of blood work and ruling out tons of things (oh and lots of meds), multiple doctors telling me they cant find anything. must be in my head. I was told I have fibromyalgia and PTSD. I should go talk to someone.
Made me feel crazy. So the kicker is I've looked in to this Chiari thing and I've been really optamistic about so much because i'm afraid to get my hopes up and find another dead end. They told me that it can't be chiari malformation.
They only concider that if it is greater then 5mm.
Mine is only 2mm.
Could they be right? Could I be back to square one?
I too stopped seeing doctors after I felt they weren't helping, but now, 7 years later, I haven't come up with any answers myself and am waiting for a doctors appointment. I've gone through all the bloodworks being perfect, all tests saying I'm perfectly fine, doctor saying " you're fine, I don't know what to do woth you." all when I was in highschool. I think most people thought I'm making that up just so that I could skip school.
The best advice I can give- don't just go thinking "oh, this is me, nothing helps, this is normal". Not knowing what is going on will make you feel crazy, so try to find a doctor who listens.
I've been watching lectures about chiari on Chiari & Syringomyelia Foundation's youtube channel. The doctors say, some people with 7mm have no symptoms, some with 2mm have terrible ones. They don't know why it's like that, but they are sure the "less than 5mm is not chiari" is not a good approach in helping patients.
In a lecture about chronic pain, fatigue and depression asoitiated with chiari, a doctor said, most patients who do improve, usually feel ~30% better. That is because chiari is complicated and even doctors don't know that much about it. There haven't been any major researches about it, therefore the treatment options are very few. In this context, felling 30% better seems pretty ok. Also, when starting treatments, setting realistic goals will help ( with the help and knowladge of your doctor, of course).
If you want to learn more, watch some of their lectures! The language is apropriate for people with no knowladge in medicine.
I've had some of the same issues. Little background for context. Started having migraines and chronic headaches 1983. Went through various Dr., always told it was all in my head or I was just seeking attention, etc. Prescribed heavy painkillers, muscle relaxers, anti-depressants, counseling. Nothing worked. 1999 my primary finally sent me to a nurosurgeon that did the full MRI, found the Chiari (7mm) and offered the surgery. I declined surgery. I made some lifestyle changes but not enough.
Now it's 2015 and the symptoms had gotten so bad, my attitude and the pain so bad, I'm having trouble at my job but can't afford to lose the insurance so i have to make adjustments.
I'm seeing a surgeon again in October with fresh MRI's for a new baseline. But I've already decided I will probably veto the decompression procedure.
Now, what's helped: 1) you are NOT crazy. Constant pain and fatigue will cause that. 2) Find a Behavior Modification Therapist who deals in chronic illness. 3) switch to a really healthy diet, I went mediterrainin, lose and keep off extra weight, it really helps with the pressure. 4) get into a healthy routine of at least walking everyday, I do 2 miles. 5) rest when you need to, don't let stress or hopelessness get you down. You can live with this. 6) make your living space comfortable. I use a soft neck collar when my neck hurts so bad i can't hold my own head up. I use a chilled gel collar for intermmediate pain. Comfy shoes, ibuprofen, plan your activities. I spend 10-12 hours a day laying down and it makes a huge difference in how i feel.
Most of all, you have to do what works for you! Don't give up, don't believe them when they tell you you're crazy, your're not. No one else understands the pain, weakness, pressure, of this condition.