Frustrated

[amberlee2013]

Hi, my name is Amber.  In April of 2012, I woke up with dizziness and vision issues that just never went away.  I had vertigo in in the past and was put on antivert and it didn't help.  A doctor at a med express told me that I might have a brain tumor and should immediately go and get a CT scan.  Nothing was found on CT.  I went to an eye doctor who recommended an MRI (head only - that's all he could order as an eye doctor).  St. Mary's Hospital ruled it as normal other than some polyps in my sinus cavity.  I took my films to Bay Medical Center and asked their radiologists to comb through them as I knew something was wrong.  They did and told me that I had Arnold Chiari Brain Malformation and that I would probably need brain surgery.  That it was about 75% better than a brain tumor.  I had to wait 6 weeks to get into a neurologist and during that time my hair started falling out, I felt like I couldn't swallow so I wouldn't eat and I lost about 30 lbs.  I was so scared and fearful.  I didn't know what was going to happen.  My neurologist who liked at my films 3 times, told me that I only had stage one and that my dizziness and vision problems were from my anxiety and not the chiari.  I went to ENT and he told my I have an ear problem and put me on phengren and gave me dizziness exercises to do.  I have a really bad problem with jaw clenching and my chiropractor feels that my jaw is my main problem.  I know seeing a chiropractor isn't the best when you have chiari but my jaw pulls out the the vertebrae in my neck turning them sideways.  My chiropractor does gentle manipulation and he also works on another chiropractor who has stage II chiari and who has had the surgery.  

The dizziness I have is CONSTANT.  It has not stopped since April, 2012.  Has anyone experienced this with chiari?  Most people I come in contact with say they have it occasionally.  I haven't met anyone like me.  I also have snowy vision.  There is stuff running through my vision at all times.  I was working at a Global corporation in the legal department and making great money.  Now I work at a daycare part time making minimum wage.  I feel like it's at the point where I need to decide what's next but I don't even know where to find a specialist in Michigan.  I just feel lost and frustrated.

[NurseGayle]

Your situation is not uncommon for patients with ACM. Type 1 is common, its what I have. There are only 2 types. Many physicians do not understand chiari & they tend to dismiss it & the related symptoms.  I went thru a lot of Drs & a lot of them just thought I was either making it up or I was nuts! LOL.  I allowed the best neurosurgeon in my area of Ohio to do my surgery.  Big mistake. He had no clue what the current & proper treatment was & I went thru hell after with the pain/issues.  I finally got online (you'd think as a nurse I'd have done that first!) & joined a chiari forum & talked to people & found out where everyone was going & having great outcomes.  For me that was in NY at Chiari Institute.  They validated me & all my sympotoms which did include dizziness & visual issues to name a few.  Your symptoms are not uncommon.  Many drs think that if your herniation is less that 5 cm you do not need surgery.  This is not always the case as the herniation can bend & hide.  Often when they do the surgery they find out the real measurement is much longer. That is why it is so important to find a dr that understands chiari fully.  They did thorough tests on me & many my original NS did not do. A spinal tap revealed that I also needed a shunt to keep the fluid drained off my brain.  You can have symptoms head to toe & not everyone has the same symptoms.  I worked on a computer all day & that caused huge visual disturbances for me.  I too was told my symptoms were "anxiety" which they were not.  I got validated when I found the appropriate doctor who fully understood chiari. I used a 99 cent walmart mouth guard for my jaw issues & it worked great.  Be careful with chiropractors & having needles inserted in the spine for pain relief.  They made it worse for me & then I found out, after my research, that they can cause issues for some people.  Good luck on your journey & be well.

[selmaS]

  Hi and welcome to the Chiari forum.

As Lisa mentioned , many Drs dismiss Chiari as a reason for the many symptoms and issues we deal with....so it may have been noticeable on ur CT, but was not reported as the radiologist and Drs felt it insignificant.

And this stage one description is one I have heard b4, but do not understand....there are types, not stages of Chiari.....

I also had the jaw clenching and it can be the Chiari....I had my Dentist rule out TMJD and he suggested I use a mouth guard while sleeping to help with the pain I woe with in my jaw....the ones u can get at a sporting good store that u mold to fit ur mouth is best....and less expensive then one the Dentist will offer....

Getting copies of ALL testing like Lisa mentioned is very important, make copies and then u can just about go where ur INS allows to get opinions.

U deff want a true Chiari specialist to review all of this for u....see the list of Drs we have and use it to research them...as the list is not a referral nor an endorsement.  http://www.medhelp.org/health_pages/list?cid=186

Getting all the right testing done like the CINE Lisa mentioned along with MRI's of ur complete spine to rule out ALL related conditions is also very important.

U have others here that can relate to how u feel and have been treated by Drs,, family and friends...know u r not alone <3

[desertstorm2009]

Hi Amber....
This condition is often dismissed, and/or under treated by Physicians. It would be a good idea for you to get a CD copy of your MRI, along with the report and any other films you may have and make an appointment to see a Neurosurgeon. Do your research and see one experienced with Chiari even if it means traveling to do so. There are NS who specialize in this condition. You may also need another type of an MRI called a MRI Cine which shows any obstruction of flow of your Cerebral Spinal Fluid (CSF). The NS will want to see this. Being in the legal field, I'm certain you will be amazed after researching this condition. I'm sending you a private message with additional information :-) Lisa