Please help me understand Chiari,my Neurologist is not doing much

[Jennyfer12681]

I have been diagnosed with Lesions on my Brain and Low lying Tonsils,by my Neurologist. My question is,are Low Lying Tonsils the same thing as Chiari? I have several symptoms of Chiari from what I have researched and everything keeps pointing me to Chiari. PLEASE help me I am desperate

[selmaS]

  The white matter lesions can be the result of HA's....so more testing to rule out other possibilities should be done.

And I know it is very difficult to get someone to understand a condition they never heard of....plus, it is invisible to them...they can't see it so we must be ok and faking or making more of it then it really is.....ugh....

  Most of us can relate to how u feel....so know u r not alone and keep pushing to get to Drs that are true Chiari specialists and u  will find they know how we feel and can help./....did u read the poem by Dr Oro at the top of the forum.?

[hevnw8s]

We all understand your frustration...that's why we are here to support each other. Stay strong

[Jennyfer12681]

Im trying,but it seems like nobody listens,understands,cares,or believes me. This is one of the most frustrating things i have ever had to deal with. I have so much going on in my life right now other than this,and its just so overwhelming. Thank you for all the help everyone

[hevnw8s]

I was also told I have "white matter lesions" on my brain along with CM. The Neurologist and Neurosurgeon were not worried about them since they could be damage from headaches or an infection.

Now if you have lesion on the brain AND spine, that is a huge sign of MS. Hopefully that's not the case. We always say here that you need to be your own advocate. Be persistent and keep educating yourself.
Kim

[Jennyfer12681]

No,i was not in an accident. This just started in late May. It was probably about a month before I realized I was taking tylenol or ibuprofin at least 5 times a day and it never helped. I just dont know where to go from here. My Neurologist gave me my muscle relaxer and told me to give it 90 days to work. Im not a doctor but I know they dont have to build up in your system. I have been doing so much research and everything leads me to Chiari.

[bean418]

Were you in an accident or had trauma before all this started ?  

I know that in my situation, my symptoms started after a trauma and the MRI report states low lying cerebellar tonsils as well.  I am just now figuring out that there is a difference between this and Chiari Malformation, which is somewhat confusing.

I also show a couple "lesions" however they are saying mine are probably a result of migraines.  

[Jennyfer12681]

I have had an MRI,CT,and EEG. He has not said anything about the Lesions,and all they have done is put me on a muscle relaxer and gabapentin(neither of which help). The headaches have been going on nonstop 24hrs a day for 7mos. I am starting to have more symptoms and some are getting worse. I have been blacking out(not passing out),dizziness,my short term memory is giving me problems,my vision is distorted and blurry sometimes,nausea,tingling in my fingers,weak and exhausted,my hearing in my right ear is giving me problems,sometimes my headache gets so severe and it happens so fast,etc.... I dont know what to do and I feel hopeless. I feel like im going crazy and sometimes think im dying. This is starting to affect every part of my life

[selmaS]

  Hi and welcome to the Chiari forum.

No low lying tonsils and Chiari Malformation are not the same, however, the symptoms are the same....and many times treatment is the same.

U will want to research Drs and find a true Chiari specialist ....they can tell u if u have congenital Chiari or low lying tonsils...some Drs do not seem to know the difference.

Chiari is the malformation of the skull......the tonsils can be herniated at ne length and if they cause a CSF obstruction, surgery is usually done to restore CSF flow and slow progression.

May I ask what testing was done and what has been ruled out?

[bean418]

Did your Neurologist give you an explanation/diagnosis on the lesions?