Diagnosis for Chiari

[kwyse]

Hi everyone,
I have been living with 24/7 constant headaches for the past 5 years. I used to get a migraine as a child here and there. Headaches just started to appear in high school more and more frequently until they became an all day every day thing. They have progressively gotten worse over the past 5 years. I tried working in a nursing home for a couple of months and I ended up having to quit because I would come home in tears every night because of the pain. There is certain things I loved to do, like fishing, that has become a challenge for me because I cannot bend over a lot or it aggravates the pain.  I  I have been to all kinds of drs the past 5 years to try and get this resolved. My cousin was diagnosed with Chiari a couple of years ago, her and several other people have told me that my symptoms line up exactly with Chiari. I recently went to Neurology at the University of Michigan hospital to see a new neurologist. Upon our first meeting he was dead set on me having Pseudotumour Cerebri. I then had a lumbar puncture done to confirm and sure enough, everything was fine with the LP. This has been my journey, every test, every scan has always came back normal. The neurologist at U of M did mention that my cerebellar tonsils were low lying based on my last MRI I had done. He also mentioned that he "thinks" there is enough CSF around them for me to have Chiari. So here I sit again being told that they are "just" headaches and he recently put me on Effexor as a treatment for migraines. I am stuck on what to do. Every time I search for low lying tonsils, Chiari comes up. Anyone that could give some insight, it would be greatly appreciated as I feel I hit another wall. I was recently accepted into nursing school and I really fear I won't even be able to do that because the headaches have just become so so so bad.

[Elisaandbucky]

Like Lottida mentions above, what appears on an MRI can be interpreted differently by different doctors - or, not even noted in their assessment. Chiari Malformation is not well understood in the general neurology community. It really is a special area of interest that requires further study, so the neurologist will have to a a desire to do the extra research to really know about the symptoms and how they are related to Chiari. Selma also advises people who are on the journey to find answers, that some of the symptoms can also be present in other disorders, so these need to be ruled out to make a definitive Chiari diagnosis.

As a professor, I have seen some students struggle with symptoms of various illnesses and conditions. Many of these students have difficulty keeping up with the coursework. Because I have this condition, I am a bit more sensitive to students with any kind of learning difficulties. If you do begin your studies, try to budget extra time for your studies to compensate for the days when pain flares. Let your professors know that you care about your work. They may be willing to consider some alternate methods for your exams. For example, one of my students requested to be able to have extra time on exams, so he went to my school's testing cent so other students would not be a distraction.

I hope you can make the best decision about your studies in terms of the timing of your course semesters. Some semesters may have to be lighter in work load than others. I wish you the best.

[Lottida]

I would get a copy of the MRI & report since lots of radiologist will dictate the cerebellar tonsillar ectopia or Chiari on the report, but many doctors will tell you that your result was "normal".  Mine had it documented in the report of a 8mm & 10mm herniation, but my ENT called me & said "your MRI of the brain was normal & there were no problems identified".  Fortunately for me I am a registered nurse at the hospital where I got the MRI, so I just printed the report myself & noticed not only did I have a Chiari, but I also have a 1cm Meningioma tumor that was incidentally found.  I would have never known that I had a Chiari or Meningioma if I wouldn't have read that report myself.............I had my decompression surgery on April 2nd for the Chiari & will need MRIs of the brain every 6 months to a year to monitor the tumor.   I agree with Selma that you will definitely need more testing done even if your MRI does show that the tonsils are lying low.  Good luck with your health & nursing school!!! :)

[selmaS]

  Hi and welcome to the Chiari forum.

Your story is so similar to many others that have come here for support....

There are other tests you could and should have....and related conditions that should be ruled out....a CINE MRI to check CSF flow...a MRI of the complete spine...cervical ,thoracic, and lumbar in addition to a brain MRI.

Then rule out Syringomyelia, ICP (which you had done) POTS, tethered cord,and Ehlers-Danlos. Sleep apnea.....

  As for the "normal" tests....get copies of ALL the reports...some Drs do not know what to look for with this condition....so the nest thing is educate yourself on Chiari and ALL related conditions and research Drs the right Dr is key !

And last know you are not alone.