Does this sound/look like Chiari?

Posted , 10 users are following.

Hello!

I've (25 y/o male) been dealing with quite a few unexplained neurological symptoms since the end of May of this year. I haven't received any answer(s) as to what would explain all of them, and I'm getting quite frustrated. There hasn't been a single day where I've felt normal since all of this began. 

One day at work, I suddenly felt a dizzy/rocking sensation (I work a desk job). Later that day I began to experience dull headaches with head pressure that would be mostly absent in the morning and would get worse throughout the day. The head pressure and dizziness was made much worse when I attempted to exercise (especially weight lifting). These symptoms lasted for about a week and a half before things really started to go downhill. I've experienced the following since then:

-Pressure and occasional pain in the back and sides of my head, as well as my neck. Most of the time, I get relief from this by lying down, but it comes back after being upright for several minutes.

-Head feels like it's too heavy for my neck

-Body wide muscle twitching

-Balance issues

-Vertigo, dizziness, and lightheadedness

-Two episodes of presyncope

-Shooting and deep aching pains down my arms. Mainly in my forearms and hands.

-Heavy, rubbery legs

-Difficulty chewing occasionally

-Subcutaneous tissue loss in hands and feet (happened fairly rapidly over three weeks)

-Occasional tremor when holding objects

-Tingling and burning sensations in my feet, hands, and occasionally around lips

-Woke up with numb left leg twice

-Blurry vision

-Ringing in ears

-Easily fatigued shoulders (I was actually unable to raise both of them for several seconds once, which was accompanied by pressure in the back of my head and neck)

-Several bouts of severe nausea

-Fatigue

-Difficulty concentrating

-Occasional loss of temperature sensation in all of my fingers simultaneously (e.g., cold water feels hot)

I've had the following imaging performed (normal, except for lumbar stenosis):

-Brain MRI (lying down)

-MRA of head and neck vessels

-MRI of cervical, thoracic, and lumbar spine 

I've also had a ton of blood tests done, all of which were normal (except for my Vitamin D, which was low). I was tested for Lyme twice. I also had an EMG/NCS, which was also normal. After the EMG/NCS came back normal, my neurologist - of course - suggested I see a psychiatrist. I'm no doctor, but I know my body well enough to know that this is not a psychological issue (my GP agrees with me). I have an appointment with a rheumatologist this week, just to rule out any autoimmune or other odd disorders. 

The reason I'm here is because I came across a case on CrowdMed that was very similar to mine. That individual ended up being diagnosed with a Chiari malformation, which raised my suspicions again (I mentioned it to my first neurologist, but she said that probably wasn't what was causing my symptoms). I'm also suspicious because the head pressure (especially because it's most often at the back of my head/base of my skull), dizziness, and cement-head sensation usually goes away after lying down, but returns after being upright (sitting or standing). 

Here are two screenshots from my brain MRI. Do my cerebellar tonsils look like they are dangling too low? I'm considering asking for an upright MRI, since my symptoms are at their worst when sitting or standing.

https://drive.google.com/open?id=0B8OzVeQ3vMX5UXdCUG1xbHpqckk

https://drive.google.com/open?id=0B8OzVeQ3vMX5MnBKUUlZNU5XTlk

Thanks for all your help!

0 likes, 52 replies

52 Replies

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  • Posted

    I have the majority of all the symptoms you've listed. I have a chiari I would definitely try to find a neurologist who specializes in this field it's so rare that many people aren't familiar with the symptoms. Good luck!

  • Posted

    Hello. This post sounds just like my 19 year-old daughter the past eight months, who is waiting for appointments at Stanford University Hospital. If she needs decompression, surgery, we plan to try to seek help from Chiari surgeons in New York or Maryland. Do you find help yet? Have you been diagnosed with Ehler's Danlos Syndrome. That would be likely. 

    • Posted

      Wow, I haven’t checked in on this thread in a long time. I was able to get an appointment with Dr. Henderson in Maryland (I’m sure that’s who you’re referring to). He spent about an hour with me and, after providing him with my symptom progression and neurological exam, knew right away what the issues were: occipitocervical and atlanto-axial instability. I was also diagnosed with EDS - Hypermobility type - rare for a male like me (whole exome sequencing ruled out all other connective tissue disorders).

      He ordered an upright flexion/extension MRI and rotational CT scan which confirmed his suspicions. My occipitocervical instability was severe: my skull was sliding about 9mm between flexion and extension (the upper limit of normal in adults is 1mm; ideally, there should me no measurable movement). Basically, my skull was sliding off of my head. 

      I had a skull-C2 fusion on March 14. After waking up from surgery, I felt like a new person: my near constant headache and neck pain disappeared and haven’t returned. I’ve also seen significant improvements in my arm and hand strength (I was barely able to write and now I have no issues), and many other symptoms are improving as time goes on.

    • Posted

      Here are a few images from my upright flexion/extension MRI:

      Rear view of my head in extension. You can see the back of my C1 vertebrae pushing against my cerebellum, due to how much my skull was sliding:

      https://drive.google.com/open?id=1Mn7sx4PSpiPJMFuOoqwo1IXZmtkh9uMJ

      Harris measurement, which determines horizontal translation of the skull:

      https://drive.google.com/open?id=12wgOiyI7z0flo7eDUco7d297q6wPOTkF

      https://drive.google.com/open?id=1iHmu5MM-hBAVDLtoGUEHCTrOYOlEk8iF[/b]

    • Posted

      Sorry, I meant “skull was sliding off of my cervical spine.”
  • Posted

    Thank you for responding. My daughter, Shay, brought me you post and it sounded so much like her that we were hoping you got diagnosed and treated. Shay has hEDS also, she takes most of the supplements recommended by the Cusack protocol. If you don't know about that, you can find it on the Facebook site Ehler's Danlos and The Cusack Protocol and look under pinned post. We suspect cranial instability also, as she has shown signs of that since childhood. Our #1 choice is Dr. Hendersen and we are planning to fly out from CA to see him if he accepts her. We're so glad to hear that you're improving. 😊

    • Posted

      Have you made any progess in getting help for your daughter?
  • Posted

    Hey . It’s been a while! Great to hear you got your answers! Didn’t you have a cervical mri? Was it clear ? Mine was. I have always thought it was my neck causing issues. What scan do I need if MRI didn’t show anything? Do you still have range of motion in your neck? So glad you got things figured out:-)
  • Posted

    Hey I just saw you replied to me . Haha I had already posted to you when I saw it. 

    Again I am so glad you are getting answers. So all of your symptoms were from your C-1? I can definitely see that being the problem. How was surgery? Update on me: I am just now being considered for a blood patch. Not even sure that it will work. Not even sure if I’m leaking . Things seem to run so much slower in my neck of the woods. So many symptoms that are just dismissed as anxiety. I won’t give up . So glad to hear from you it made my day to know you made it !!!

  • Posted

    Dear brp720, I had symptoms for 20 yrs before being diagnosed with Chiari malformation about 10 years ago. Underwent Chiari decompression in 2014. you have not found the cause of your health issues please email me

    I hope you got answers before i read your story but please feel free to email me so I can share what I know with you. And tips for helping the symptoms.

    Best wishes,

    Keebler elf

    Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

  • Posted

    Hey how are you these days? You haven’t commented in a while and I’m hoping that is a good sign that you are doing well. I am headed down the same road as you . I get my flex upright MRI soon . The surgeon thinks Mabe my neck is the cause . How bad was recovery from the surgery?
    • Posted

      Hi Melanie,

      Yes, I’m doing well. I haven’t frequented online forums for the past few weeks, since my life is pretty much back to normal (with a few fairly minor adjustments). 

      That’s very interesting considering that it’s hard to find a doctor that will order one. Was it a neurosurgeon that ordered it? Regardless, their willingness to order a flexion (and I hope extension) MRI is a sign of open mindedness and a desire to figure out what’s going on! Also, do they suspect an underlying connecive tissue abnormality?

      Note that there are very specific metrics used to diagnose cervical instability (especially occipitocervical) that many doctors mnow little to nothing about, and I’d be happy to give you a hand when you get the disc/results.

    • Posted

      I am so glad to hear you are doing better! Yes I believe it will be a upright flexation MRI. To check for cervical instability. You are right. No doctor would order this test. I found a neuro surgeon who specializes in chiari and related disorders. Also EDS. He mentioned testing for EDS also. I am so glad I found him because I am literally about to go out of my mind with this vertigo type feeling , numb face, blurred vision, headpain, weak legs . You know what I mean. Thankyou for offering help! I am definitely going to get a disc. How bad was the surgery? Do you still have the de realization? That’s a big symptom for me. I just feel off and weird. Sort of drugged! I have another odd question. Now that you are fused can you still have MRIs? Or how do they scan you now? Good to hear from you ☺️
    • Posted

      Glad to hear you found an open-minded surgeon. I’d be interested in knowing who it is (you can PM me, I think).

      I don’t have that spaced-out feeling anymore. It was gone when I woke up from surgery. The surgery and recovery wasn’t as bad as most people make it out to be. My surgeons nurse said I’d probably be on strong pain medication for at least a month after surgery, but I was off of them within five days and only had minor muscle spasms for a week or two after. I don’t have any residual pain from surgery nor have I had a headache or vertigo since. 

      And yes, I can still have MRIs. The hardware is made out of titanium, which is MRI compatible.

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