vertigo???

[beachlover3897]

Hi there...I have had vertigo for several months now and the doctors cannot explain medically why this is happening to me.  An MRI shows that I have Chiari Type 1 with a 9mm herniation.  The neurosurgeon says that the vertigo is not related to the Chiari and does not seem to be concerned at all because I don't have "frequent and severe" headaches...The ENT says to go to vestibular rehab (PT) ...all the research that I have done, vertigo---dizziness and balance issues---appear to be the second most complaint for patients with Chiari...has anyone experienced the vertigo without significant headaches and did vestibular rehab help at all???  I'm wondering if I should get a second opinion??

[beachlover3897]

Thanks...you all have provided very good information for me.  Maybe it is my neck causing these issues?!?!?  I was in a MVA a little over a year ago and had whiplash.  It only bothered me for a couple of weeks and then suddenly went away.  Who knows...I am going to follow up with a second opinion.  I hate to sound like I am whining but this is really a miserable experience and it makes it difficult for me to do the normal things that I have always done, like dishes, laundry, sweeping, etc...

[Shane99]

Don't worry about sounding whinny. As misunderstood as this is, we have to be our own advocates. If you feel bad, you feel bad. You have to make sure that you're heard and understood. Remember that the Doctors works for you.

It's important to know that there is no cure for Chiari. The surgery can help with symptoms, but you will always have it. Chairi isn't considered life threatening, but it is life altering.

[sissy114]

Hi! I like Shane am a zipperhead. I had surgery 5 month ago and am doing much better.
I would have vertigo only a few times a year but it would be so bad that I would have to
lie down for a while because the room would be spinning so. i always thought that mine
was allergy related and seasonal. I never had a problem with headaches, only neck, shoulder and severe aching of my arms. I would have ringing in the ears sometimes but
again thought it was sinus problems. Chiari causes so many different symptoms and
no one seem to have all of the same. I agree with Shane, find a Chiari specialist, not just
any NS will do. Best of luck to you!!

p.s.
I have not had vertigo since my surgery, but it's only been 5 mo's

[dreamweaver359]

I, too, have a Chiari Malformation.  The symptoms first made an appearance in 2001.  I was sent to a neurologist who I gave some family history such as cancer, diabetes and the fact my brother was being tested for MS.  He did some simple tests on me and asked me to walk a short distance for him.  He sent me for a CT scan.  He then sent me to an ENT who listened as I gave the symptoms that I was experiencing and also performed some of the same tests the hearing clinic had done on me.  He then sent me for a MRI on my ear.  After seeing the results, he decided to send me to a balance clinic at one of the hospitals within the health region.  Here again the specialist felt the results were not consistent with Meniere`s or anything else that he understood.   At this point I had two specialists who concluded that it was all in my head and I was craving attention.  For ten years I lived with that belief by medical professionals (other than my family doctor).  
In 2008 I developed more severe migraines.  I had them as a teen but nothing like these.  They had virtually disappeared throughout most of my adult life.  At this point they returned with a vengeance and I was having migraines once a month and they would last for one week.  The auras were not always the same.  Some were the same as when I was a teen (I would have warning), but others were different (no warning what-so-ever).  I finally asked my doctor for medication for migraine prevention and asked whether I should be having a CT scan or MRI on my brain to determine if there was an underlying problem.    In 2009 I had both the CT scan and the MRI done, each with an undetermined result as there was an area around my cerebellum which was unable to be read clearly.  After the MRI in 2010 I was sent to a neurologist to be looked at.  He then sent me to an ENT who specializes in vestibular problems (which it was believed to be).  The ENT was not convinced that the issue was vestibular and felt it needed to be investigated further as a neurological issue.  He examined the results of the MRI and the notes made by the neurologist and sent to a neurosurgeon that specialized in these sorts of problems.
Before meeting with the neurosurgeon I was again sent for balance testing again.  This involved hooking me up to a head set (seemed similar to a virtual reality helmet) and having my eyes follow a red dot on a bar.  She also had the helmet on while I kept my eyes open and then she would lay me back fast either head to the left or to the right.  The tests went on like that and they included putting warm water into my ears and doing the same manoeuvers.  The whole time the machine was monitoring my pupil movement for fluttering.  
Finally in 2011 I met with the neurosurgeon who checked the MRI results and the balance testing and concluded that I had a Chiari 1 Malformation.  I have a diagnosis; it is not all in my head.  After ten years I was even beginning to wonder.  The neurosurgeon ordered another MRI because the one he had to look at was almost 2 years old.  He did some of the tests on me again.  Upon looking at the first MRI he concluded the malformation should not be causing the severity of the symptoms I was having and that surgery was not warranted because the cerebral tonsils did not extend down into the spinal column far enough.
Here I am awaiting another visit with the neurosurgeon.  I spent 7 months last year incapable of driving and unable to walk without either canes or a walker.  I again suffered many migraines.  These migraines involve the world spinning at an unearthly speed.  They come on without warning and make me very ill.  As a result, I also burnt my throat with acid from my stomach and lost my voice for 4 months.  In the last three weeks I have had two horrific migraines to the point that I have had to ask someone to come to my place to come and get me some water so I could take medication.  I have had to crawl in my house because I was unable to stand up with my walker.  At the onset the only thing preventing me from falling to the floor was that I was in the corner of my counter and was able to use my forearms to hold me in place until I was able to get enough stability to get my walker (and then it got worse).  The second time it happened I was sitting in my loveseat and knew better than to try to get up.  This is very disrupting for my life.

[selmaS]

  Hi and welcome to the Chiari forum.

Shane99 is not a reg participant on this forum and this being an older thread, if u would like to talk to him, click on his name and select private message and ask the questions, that way he will get an e-mail notice that someone is trying to contact him.

From what I have read, ur experience with the medical profession is similar to what many of us have also had...we have dubbed it the "royal chiari run around"

  If there are questions u have or ne way we can help, start a new thread so it gets more attention....as this is an older one.

    "selma"

[dreamweaver359]

I was just happy to find a place where there are people like me.  I have been told for so long that it was all in my head and was ignored for so long that I was beginning to believe what I was being told. Thank you for the welcome.  I do have some questions and when I do go through the introduction and figure out how to use the sight properly I will ask them.