Chiari or something else?

[Itsaleedanielle]

My radiologist said on my MRI my cerebellar tonsills extended just below the level of the foraman magnum consistent with Chiari I malformation, but doesn't see any major blocks that give him reason to believe my symptoms are caused by it. I'm having numbness/tingling in my arms, and occasionally legs, intense neck pain, and horrid migraines daily that go from behind my eyes all the way into my neck. On top of this I've been in what I can only describe as a fog, and I've been having a lot of problems with my ugh ta. I can never think of what word to say next and lose my train of thought a lot. It's taken me at least 10 minutes to get this far into this message. I have ringing in my ears often, and spend half of my day feeling nauseous because of the dizziness.

My doctor has referred me over to a neurologist to see if I have nerve damage and that's the cause of my tingling, but has written the rest off as a coincidence. Could it be possible that the Chiari is cause for my symptoms or am I just being hopeful because I want a diagnosis already?

I feel like I'm going crazy.

[selmaS]

   Unless  the  Dr   is  a Chiari  specialist....I  would continue  to push  for answers....

   It  is good  your  B12  levels  are  up   as it  shows  the  symptoms are  not  related to  the  levels....the more  you  rule  out  the  more it  points to  Chiari.

[Itsaleedanielle]

I had a B-12 deficiency when we first started checking my synotoms, but we have since brought my levels up entirely and they're only continuing to get worse.

I had a complete MRI or my spine and brain, but we haven't done a CINE MRI. The radiologist said he didn't think it was relevant so my doctor dropped it and handed me off again.

[VMZ14]

My vitamin d level was 9 now it's up to 26 so yes that is low.  But I don't think I had a cine MRI I had an MRI of my brain and neck with and without contrast and MRA.

[Elisaandbucky]

I am so sad to hear about the way you are being treated by some pretty ignorant doctors. I also feel the pain you have over your difficulty caring for your baby. When I read posts like your, I wish there was a way to physically help you. But know that you are cared about and will be heard when you speak (write).

[selmaS]

  Did your  Dr  do  a CINE  MRI  to see  if  you  have  a CSF  obstruction?...what bothers me is the  term..mild   to  moderate when  they  consider  the length of  the  herniation  and not  how it  may  be  affecting  you  and  your  overall health.,...

[selmaS]

Low  levels of vitamins and minerals....can  cause  a plethora of  symptoms....so make  sure your vitamin B12   and  D.....along with  minerals,magnesium and potassium.

[Itsaleedanielle]

The foggy head is my biggest complaint. I don't feel like myself and hardly want to do anything. I'm driving and halfway down the road I realize that I'm driving absent-minded and it really scares me. I'll miss my road or have no idea how I got where I am. I can't concentrate and then when someone's talking to me I look like an idiot and can't hold the conversation because I have no clue what word to say next or how to explain when I'm thinking.

[VMZ14]

I'm somewhat in the same boat sometimes I'm afraid to drive cause feel like I'm so foggy headed. I have dizziness and some headaches earpain and developed social anxiety. You are not alone. My neurosurgeon called my chiari mild to moderate but did not recommend surgery at this time

[Itsaleedanielle]

Even that helps. Thank you! I've been passed between four doctors already who have written off my symptoms. One even went so far as to tell me I was just out for pain medications, but he doesn't realize that the majority of the time they really don't help me. Something as simple as bending over or carrying my son into the store can trigger a headache that sticks for days. It's not easy being only 21 with an infant and not being able to enjoy our time because I'm in pain and feeling crazy for being in pain. Lol.

[Elisaandbucky]

Just rest in the assurance that you are not crazy, you are in pain. Pain- especially chronic severe pain- is a great deal to cope with.

[Itsaleedanielle]

I am really ready for a diagnosis because then I can at least find a way to manage my pain (or at least know I'm not crazy). The headache was so bad today that I had to go to my doctor for a pain shot that unfortunately didn't really help. I've spent the entire day in bed nauseous.

[Itsaleedanielle]

We did a normal MRI of my brain and entire spine. He apparently didn't see anything that would make him believe that there was a problem, however no one knows what is causing my symptoms.

[Elisaandbucky]

Your symptoms certainly sound like Chiari. My compassion goes to you especially for your nausea, that can interfere with your whole day. But, nausea and the nature of your headache pain (behind your eyes and into your neck) have to be tough. If you do vomit, the pain must get worse with the straining. You are not crazy for wanting a name for all of this; at least a diagnosis will put an end to all the uncertainty.

[selmaS]

  Hi and welcome to the Chiari forum.

It  is  very possible  it is  Chiari or  Chiari related....what MRI's have  you  had? Brain w/wo contrast , cervical  spine, thoracic,and lumbar spine...and or a CINE MRI to check  CSF  flow.....

A syrinx  could be  a reason for numbness and tingling...and some  Drs only  look for them  in the cervical spine  but many with Chiari have  them in the thoracic and lumbar spine.

Testing to rule out  related conditions should  be done  as well as the  symptoms are similar.