Chiari - Suggestions / Next Steps

[Bobbigirl1]

Hello,

Here's my back story:
I"m a 33 female, and in August I went to my family doctor for a yearly physical as suggested by my chiro. When I got an adjustment  i would become short of breath, and get hot flashes and dizzy.  My family doctor thought I had MS, and sent me to an NS.  Along with sending me to urologist for incontinence.  My NS said I did not have MS and do try PT , and see him two months. Well Two months past and PT did not help.  I had a follow up appointment with my family doctor last week.  In our meeting I told her that my pelvic floor specialist believes I have Chiara.  So on Monday they did an MRI and today they came back saying everything is normal.

headaches
pain in bottom of skull, top of neck, some times it feel like my head wants to burst
nausea
dizzy with vertigo
slurred speech or messing up sentences when talking, reversing words
forgetfulness
tingles in feet and arms ( even when walking)
pains in legs
tightness in chest, specially when taking a deep breathe. I easily get short winded, even in talking at times.

Any suggestions on what I should do next?

[selmaS]

  No worries...it is important that we all get copies of all testing and this proves the point....Next, find a true Chiari specialist or u will continue to get the run around and not the best of care.....we do have a list for use in researching Drs, it is NOT a referral, but a means to help u get started...and be advised not all Drs are true Chiari specialists.

[bagheesmom]

Sorry I must have typing as Selma was posting :)

[bagheesmom]

Did you by chance get a copy of the report and disc? I was told my MRI was normal only to read on the report that I in fact had Chiari with tonsil herniation and the measurements. I'm a big record keeper so first I would obtain a copy of your tests. Others will chime in with great advice also

[selmaS]

  Hi and welcome to the Chiari forum.

Do u have copies of that MRI and the report....always get copies, say u r going for a 2nd opinion...what ever, but always get copies going forward request them when u sign in for testing.

Next what other testing did they do, did they rule out MS, lymes, lupus? We all go thru testing for those as the symptoms r so similar.

U will also want to get more MRI's to make sure u do not have other issues with ur spine, disk issues, or tethered cord or syringomyelia.

Then neuro exams for other related conditions like ICP, POTS, and ehlers-danlos.....sleep apnea, even vitamin and mineral levels as well as thyroid all need to be checked,

  How did ur pelvic floor specialist come to their conclusion?