Avatar universal

New - looking for advice

Hi There.  I recently went to my doctor because I felt overwhelmingly dizzy  when truning my head or changing positions and ridicuolously tired/foggy.  I'm rarely sick and visit the dr maybe once a year for sports related injuries.  She noticed something neurological (nystagmus, low heart rate, poor balance) and sent me for an MRI of the brain and lumbar(to check on some previously herniated discs).  The results came back Boderline Chiari I with a .6cm herniation, no hydropcephalus.  My doc sent me straight to a neurosurgeon.  The NS said the Chiari explained my childhood history of debilatating headaches and vommitting (I'm 31 now and only get full blown "migraines" once or twice a year but have a dull headache most days).  He also indicated that the dizziness was vertigo.  He said I was fine and did not need surgery, just to watch out for further neurological symptoms, and see an ENT about the vertigo.  I went to an ENT, he said it wasn't vertigo, but was migraine related dizziness.  He directed me to get a mouth-guard to wear as much as possible to save my jaw and to look at my diet and environment for migraine triggers, and then gave me some prednisone (which I ashamedly did not take) and sent me on my way.  
Although I am feeling less dizzy, I'm concerned that I don't have enough info.  I've noticed some other minor possible neurological symptoms prior to and since the MRI, but nothing disabling or substantially impacting my quality of life.  I would only consider surgery as an absolute last resort and am going to try massage, possibly accupunture, and getting enough sleep.
So, a few questions:
Is there anybody out there who has had minor ACMI symptoms and managed them without surgery or further progression?  If so, how?
My Primary doc thinks I need a 2nd NS opinion.  Assuming he agrees with the 1st NS, should I be looking to have this monitored by neurologist?  If so, how often?
Can anyone recommend any neurosurgeons or neurologists with Chiari experience in Delaware or Philadelphia?
I appreciate any advice or just some friendly reassuring.
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Avatar universal

I understand how you feel.  I too have a 6mm herniation and lots of problems.  I had so many problems I saw 15 different specialists and no one would touch me.  I "had too many problems and things going on"... direct quotes from the docs.  Thank goodness my regular doctor knew I was sick and stood by me.  I had terrible migraines in high school and missed half a year of school because i was having them all the time and in the hospital.  They now saw those were because of the Chiari Malformation.  I am having decompression surgery on May 21st and am really hopeful that I will get to feeling better.

I would definitely get a second opinion.  This can be serious.  It can cause lots of problems, for example I have hypertension and slight heart damage, sleep apnea, I have to be on oxygen because it has caused respiratory problems, increased intracranial pressure, I too get dizzy and bump into things/fall down, nausea and vomiting, choking, and that is just to mention some.  Everyone is different.  Some people have more problems and some people have less. It is scary and we all understand.  Surgery is scary, but paralysis is a lot scarier.  Good luck and I hope it all works out well for you.  
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620923 tn?1452915648
Thanks for the clafification I did not see the dot.

: )
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555358 tn?1292532061
I wholeheartedly agree with selma - make sure you have a knowledgable neurosurgeon and neurologist.

Selma, she has a 6 mm herniation - she said .6cm.
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620923 tn?1452915648
Hi and welcome to the Chiari forum.

As to ur first question-Is there anybody out there who has had minor ACMI symptoms and managed them without surgery or further progression?
Well...it depends on how u look at it...chiari is congenital...meaning from birth- I was also symptomatic as a child, but it was not dx until I turned 48 and I have yet to be treated. It can progress...u may fall, get bumped, or just drive downa bumpy road and that can trigger it to grow.So this is a yes and a no answer....and u r included in the yes-so far.
May I question the size u mentioned? u said 6 cm....do u mean 6 mm?

Everyone with chiari should be seen by a chiari specialist not just a NL or NS not all of them are well versed in chiari and it's treatment.

I am in  PA and went to Philly and would not reccommed it....Go to NY to The Chiari Institute, or any of the drs that are recognized as chiari specialists-this means that their practice's main focus is chiari.

Make sure u have ur 6 mm/cm size and then u will need tests to see if u have a CSF blockage or ne other chiari related condition such as a syrinx or tethered cord....

We are here ask as many questions as u need and read the threads here as well as our Health Pages here on MedHelp.

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