Please Help

[Jessllong]

I have had dizziness, blurred vision, headaches and depression for 2years now. I've been to ER had CT scans all that. Went to a ENT nothing wrong. So I went to a neurologist and had 2 MRIs. He said the tonsils on the bottom of my brain were large and not formed right but I was vein like that so it's no big deal. I've been doing my own research on Chiari and I'm now freaking out. My main issue is being dizzy, blacking out and not being able to drive or hardly even ride in a vehicle. I don't know what to do next so any help would be great! Thank you

[Jessllong]

Sorry he said I was born like that so he was not concerned at all. I feel like I'm losing my mind and its like I'm in a constant fog. I'm 33 with 3 kids and need to get this figured out. Anyone's input would be great!

[selmaS]

   Hi  and  welcome to the Chiari forum.

  So many Drs  are mis informed about Chiari....yes, we  are  all born with this and the symptoms can cycle....so often they are DX'd  as individual issues and not connected with Chiari....and it can take yrs or a lifetime to get a proper DX....so, yeah we had it all our lives and it took this long to find out I have it and what was causing all my symptoms....ugh,,..

There is more testing to be done ....not everyone with Chiari is a surgical candidate...MRI's of the cervical, thoracic and lumbar spine...and a CINE MRI...this  last MRI is to  check CSF flow...is  obstructed a syrinx may form and the other MRI's will check for those as well  as disk issues, and tethered cord.....

Blood labs to check vitamin and mineral levels,auto immune conditions as well as connective tissue disorders like Ehlers-Danlos....Hashimoto's thyroiditis...

  Finding the right Dr is  key...use  the list of Drs to do research on Drs.....the list is not  a referral nor  an endorsement.....


Know you are not alone.....

[Jessllong]

Thank you I will be calling Cleveland Clinic today for more testing. I was in ER last night because of blacking out and my husband found me on the floor, so of course he made me go. 3 dif Drs at the ER looked at me and said the word Ciari. I'm so confused as to why my neurologist never mentioned that to me. Thanks you though!!

[selmaS]

  As  I  said many Drs  are misinformed on Chiari....they feel it  is a normal  aging process....and nothing more....keep in mind MRI's  were not common place Dxing tool for headaches and balance issues when they were first used  for medical purposes....close  to  the early 1990's they started to use them more  as costs to have one done came down.....so people like myself  that had issues in the 1960's  forward  had no way of knowing....and since it was not common to do MRI's it was  not  an area that Med schools taught about either....testing on the first human was in 1977...the yr  I graduated High school.....MRI's offer us  a  view  to things not seen  b4 a post mortum....but that does not tell Drs  what is "normal" or causing issue....it takes Drs  to do research to figure this out.....and you will have some that do not feel it is anything but an incidental  finding....so this is why I say  find  a true Chiari specialist....

  Good luck  at CC.

[Elisaandbucky]

Two months ago I had my decompression surgery - done by a surgeon who operates prodomenetly on Chiari patients. I am good now.

Many of the symptoms that you describe are the ones I had. I never actually blacked out but lost recognition of where I was or where I was going. Those things alone are alarming enough. With you blacking out (caring for 3 kids), there is definitely a neurological issue. And, the information that can be seen on MRI wasn't able to be viewed a few years back. Yes, you were born with Chiari, but diagnosis and treatment (?) will give you a better quality of life, definitely worth doing research to find the specialists. One thing I know that you must already know is to avoid straining or any type of strenuous exercise, but then you have 3 kids and I only have 1, and I can vouch for the strenuous activity it demands of me. I scarcely dare to imagine a day in your life! But keep pushing on for answers. Do you live near the Cleeveland Clinic? That may be a great place to begin.

[keshia3017]

Hello ive been having similar symptoms since may this year, been to the er 3 times. The last time they did a mri and diagnosed me with chiari. He sent me to a neoro surgeon and he acted like its no big deal and wants me to do physical therapy and said it may just because posture thing. And said hes had patients get surgery and it not even help them. So im going to see another doctor that specializes in chiari. Im 25 and just now having symptoms.

[Elisaandbucky]

My neurologist also sent me to physical therapy, and I did not have any results at all. Like your doctor acted like it was no big deal - mine did also.