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Low Lying Cerebral Tonsils with no definite Chiari Malformation.

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emilee0204
emilee0204

My mother was diagnosed with Chiari a year ago after years and years of varied symptoms of which doctors couldn't piece together for a proper diagnosis. I have some of the symptoms she does, although not as intense and not as many. I went to my doctor to get tested to rule out Chiari as a cause for my near-constant headaches. Some days these headaches are bad enough to make me nauseous; I also experience balance problems (and have since I was young), brain fog/was told I had ADD due to my concentration problems, neck and back pain, and infrequent ringing in the ears. 

My MRI results came back saying I had "low-lying cerebral tonsils with no definite Chiari Malformation". To my understanding this means that they are not protruding far enough to be classified as Chiari. I have three questions related to this:

1. Do different doctors diagnose with different criteria, would it be worth getting a second opinion?

2. Would having low-lying tonsils themselves be the cause of my headaches and pains and could this worsen and develop into true Chiari?

3. Are pain killers going to be my only option for dealing with these constant headaches since I do not technically have any type of treatable condition?

Any and all help and insight would be greatly appreciated. I'll attach a photo of my MRI for those who are interested. 

0 likes, 8 replies

8 Replies

  • hayleybell
    hayleybell emilee0204

    Posted

    Hi Emilee,

    From my understanding you have what is known as Chiari malformation 0.

    ( I am not a dr, but diagnosed 9 years ago, had Chiari surgery last year & have read lots about it!)

     As you may be aware there are several types of chiari's, 0 has now been added.Have a read about it & see if it fits for you?

    My experience is that pain meds do not help with the typical Chiari symptoms as this is a pressure problem with CSF flow etc, however, if you have other symptoms they may be of help of course. 

    In the world of Chiari you often come across different doctors with different opinions, that be said, this is probably true in many medical situations.

    Most Chiarians seek second opinions at different hospitals.

    Take care

    H

    • emilee0204
      emilee0204 hayleybell

      Posted

      Thank you for the response! I do think I will find a specialist doctor for a second opinion and further testing for CSF Flow. 
  • Searon26
    Searon26 emilee0204

    Posted

    Hi Emilee

    I was diagnosed in 2010, I had been suffering from my symptoms for years, constant headaches numbness down the side of my face, shoulders, hands, back, bowel & bladder problems.

    Last year I was told by a hospital they will carry on reating me medically after a four day stay, they frightened me with the detail of the operation.

    I sort a second opinion at a neurological hospital, the neurosurgeon took one look at my MRI and said we are operating. I've since had my operation and I'm recovering at home.

    You should get a second opinion and try to get more information regarding Chianti Malformation, it's quite difficult unless you go on line which they urge you not to.

    Hope you mum is ok and good luck

    Sharon

    • Searon26
      Searon26

      Posted

      Sorry Emilee after reading back it doesn't make sense some of it

    • emilee0204
      emilee0204 Searon26

      Posted

      Thank you for your reply and insight, I definitely think its wort going in for a second opinion. I don't want to let it get worse if it really is Chiari.

  • Linleel
    Linleel emilee0204

    Posted

    1. My best advice is to get a MRI cisternogram. That can tell you whether there is CPF blockage. 

    2. It looks like your tonsils are not totally protruding through the foramen magnum. So doctors may be leary about doing any surgery, but I would get the aforementioned MRI as that is much more of a determination. 

    3. Also, DEFINITELY get a second opinon. Some doctors have little to no training in treating Chairi. If possible, get  an opinion from a doctor affiliated with a university program- they do research. 

    4. In my understanding, Chiari can cause symtoms and pain even if tonsils are not extended. There is a Chiari Malformation 0 classification. If you look at your MRI, clearly the cerebellum is pretty crowded and is pushing up against the brainstem. This could be the cause of your headaches. I don't know if your condition would progress into Chiari I or more. But its a possibility.

    5.  "Are pain killers going to be my only option for dealing with these constant headaches since I do not technically have any type of treatable condition?"  DON'T GIVE IN!!! Go to another doctor, one who specializes in Brain and Spine issues and tell them you want an MRI cisternogram!   However, in the meantime, you may have to rely on painkillers. Ask your GP for 500 mg Naproxin Sodium (you need a prescription) or just buy a lot of Alleve. 

    NEVER GIVE UP!! 

    Remember: This is a RARE disease!! Doctors are surprisingly uneducated about Chiari because they just don't see it much. Definitely get a second opinion from Brain/Spine specialists. Keep researching and scouting out information. Chiari can be inherited.

    Above all, pester pester pester!! I TOLD my doctor I wanted an MRI because there was something wrong with my brain. I researched when I got the Chiari diagnosis. I pestered them to get me an appointment sooner, I pestered the 2nd neurosurgeon to get my MRI Cisternogram scheduled and called everyday to see if they had read the results yet. Don't wait for them to call you, because they don't do that very quickly!! 

    Good Luck!

    • emilee0204
      emilee0204 Linleel

      Posted

      Thank you so much for the reply and insight. I agree that most doctors are uneducated about Chiari, my mom has had to speak to many doctors to get answers and the help she needed. I will look into meeting with a specialist

       

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