New diagnosis, difficult to find help

[Braintoobig]

I'm so happy to have found this forum. I was recently diagnosed with this chiari malformation and the way of diagnosis came in such a random way.
I've had migraines my entire life. I'm now 28 years old. Recently, in the last two years, the symptoms changed. I started to get this pressure in the back of my head and severe neck pain that basically rendered me disabled. I could not do anything because even taking steps to walk felt like my head was smashing into my spinal cord. Little did I know that this was literally what was happening! I had a headache last for 4 days once and I ended up going to the ER because I couldn't handle it anymore. The PA I saw said that I should probably see a neurologist and get a brain MRI since my migraine symptoms are changing.

Fast forward to the neurology appointment: The doctor just didn't seem to care nor did he even listen to half the things I said. I walked out of there with three prescriptions, an anti-inflammatory, a muscle relaxer, and a stupid anti-depressant. I was pretty upset because I truly felt like something was wrong and he just didn't care. I even literally said the words, "I feel like my head is smashing my spinal cord!"

Fast forward to this month, I'm seeing an ENT for problems related to my throat/lymph nodes and he orders an MRI of the soft tissue. I asked him if it would be ok  to check my spine too since I'm already having a soft tissue MRI. I told him about about my headaches and the neck pain I get that cripples me. He ended up agreeing to order both the soft tissue and the spine series. The results showed a 5mm herniation of the cerebellar tonsils and two herniated discs in between c5-c6 and c6-c7.
I am in shock because I feel like I tried to seek an answer for this and I was pumped full of drugs and sent away. But what bothers me the most is the only reason I found out I had this is because I went and got the radiology report myself. The ENT doctor never called me with the results, his medical assistant called me and read the report to me and only mentioned the disc problem. I'm kind of at a loss for what to do. I will be seeing a primary care doctor today for the first time since I don't have one. I missed a lot of school last semester because of this and the only reason why I survived this semester is because of the pain killers.
I'm in the Washington DC area. I am very open to any advice you all can give me on what to do next. I'm having such a hard time finding a doctor to take me seriously and I'm really growing weary of this doctor hopping that I have to do.
Thank you so much for reading!

[jessica78203]

So can someone explain to me what exactly  Chiari Malformation is?
Is it something a person has and doesnt kno it and  triggered by injuries in the neck?
And what are the symptoms ... I'm wondering if I have this?

[Braintoobig]

I have a couple basic questions.
What do you all take for the pain?
Do you always feel symptoms of this or does it come and go?

[Braintoobig]

Oh and I was thinking about the whole spinal cord check thing. I have an extra lumbar vertebrae. In stead of L1-5 I have an L-6 too. It showed up on a random back xray after a snowboard injury. It has never bothered me so I just know its there. It has, however given me some pretty awesome back flexibility and I'm kinda tall. I'm not really flexible anywhere else outside a normal healthy adult but my back is super duper! lol

I will be getting a brain MRI tomorrow then seeing this neurologist I was referred to. If he doesn't take me seriously then I'll look for a chiari specialist. I would really like a spine MRI because I feel things sometimes, like shooting pains up and down my thoracic spine. It just spontaneously comes and goes. It's like I'm getting zapped. I sure hope he takes me seriously!
Thank you everyone for replying!

[Braintoobig]

Oh my God I just keep thinking about this! It explains so much! I remember when I used to take yoga and they would have you sit Indian style and then push your chin to your chest. I could never do this because it would cause this horrific electrical shock down my spine. I still can't do this to this day. It feels like my spine is being stretched too far and it will zap me!
I just keep thinking and thinking and I keep remembering this that could all be explained by this! Geez I can't believe this! All these years!

[thieb9]

I just sent you a pm, check your inbox

[Spaceystac]

That electrical shock sensation you describe is a definite sign of cord compression, and extra flexibility can be a sign of connective tissue disorders.    
You must keep fighting, you are young and strong and you must keep being you own advocate. No one cares about your health as much as you, so we are all forced to take the info into our own hands and search for the doctors who will help.
I am so with you feeling like you arnt sick enough to get some help, you were lucky you had mono in a way, that got you your mri.  Glad you found the forum, keep on posting!