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Inner Ear Disorders Message Board

Inner Ear Disorders Board Index


I am writing in hopes of helping out some of the people on this site. I have been suffering with an undiagnosed condition for over a year now. I've been to 20+ doctors and specialists and had every test you can imagine. I was diagnosed with Migraine Associated Vertigo by a few of the doctors as well as:

Stress, Heavy Metal Poisoning, and just plain crazy. I was put on several medications but nothing ever seemed to work. (Topomax, Ativan and Prozac.) I truly didn't ever believe I had MAV, but I had nothing else to work with.

I experienced many symptoms that are reported with MAV such as head pressure, shaky vision, light sensitivity, sensitivity to sound, tinnitus, neck pain, nausea, burning in the back of the head, electric shock sensation in the neck and head, and most recently difficulty swallowing, strangling feeling, numbness in arms and groin, and pressure at the base of the spine. I went online and did a search with my new symptoms and came up with a condition called Chiari Malformation. Long story short, this diagnosis has been confirmed.

This is a condition where the cerebellum herniates into the spinal column and blocks the flow of spinal fluid into and out of the brain. This can be congenital, but can also be brought on by trauma. This condition was not diagnosed from my MRI previously because most radiologists use an outdated method for determining this condition. It is all based on the length of the herniation, but this is incorrect. I have been diagnosed with borderline Chiari Malformation, which means the length of the herniation is not sufficient to be considered "Chiari". However, there are hundreds of cases of borderline Chiari where the patients report many symptoms. Therefore, there are several organizations that are trying to change this method of diagnosis.

These are the symptoms associated with this condition:

* Headache (esp. if daily or at lower back of head)
* Painful tension in neck
* Fatigue
* Migraines
* Dizziness
* Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or "halos" / nystagmus
* Tingling / numbness in the extremeties
* General imbalance / clumsiness
* Memory loss
* Restricted movement
* Intolerance to bright light / difficulty adjusting to light change
* Vertigo from position change or sudden standing
* Difficulty walking on uneven ground / feeling ground under feet
* Poor / degraded motor skills
* Difficulty driving
* Difficulty negotiating steps
* Pressure / pain in the neck
* Pressure / pain behind the eyes (soreness in the eyeballs)
* Back pain
* Neck spasms
* Insomnia
* Ringing in ears (like the tone heard in a hearing test)
* Swaying
* Pain when changing position
* Tingling / crawling feeling on scalp
* Intolerance to loud / confusing sounds
* Decreased sensation to touch in extremeties
* Decreased sensitivity to temperature
* Pain & tension along ear / eye / jawline
* Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes
* Drooling
* Spontaneous vertigo
* Hand tremors
* Poor blood circulation / cold hands & feet
* Sinus / mucous problems
* Sleep apnea
* Decreased muscle tone
* Pressure in ears / ears feel stopped up
* Nausea
* Difficulty reading / focusing on text
* Depth perception problems
* Burning sensation in extremeties / shoulder blades
* Menstrual problems / severe cramping during period
* Fluid-like sound in ears (like water running)
* Loss of sexual interest / lack of sensation in pelvic area
* Pulling sensation while sitting / standing
* Intense itchiness w/profuse sweating
* Slurred speech
* Gag reflex problems / lack of gag reflex
* Pressure / tightness in chest
* Loss of bladder control
* Frequent urination
* Dehydration / excessive thirst
* Electric like burning sensations
* Unequal pupil size
* Loss of taste
* Popping / cracking sounds in neck or upper back when stretching
* Dizziness
* Loss of smell / problems with sense of smell
* Dry skin and lips
* Sudden / abrupt changes in blood pressure due to awkward position of head
* Hiccups associated with drinking carbonated beverages
* Skin problems

Other: migraines, oscillopsia, lump in throat, colour blindness, albinism, visual floaters, astymosism, thinning hair, hear heartbeat in ears, throat closes when lying flat, vomit in sleep, swollen face, low body temperature, low blood pressure, legs feel heavy, "strangling" feeling, "floating" sensation, thickening of finger joints.

I had at least 40 or so of these symptoms.

I would URGE you, if you have been undiagnosed, misdiagnosed or told you have something such as MAV, MS or fibromyalgia and you don't feel as though that diagnosis is correct, to check out Chiari Malformation and compare your symptoms and MRI with those you find.

The way to treat this condition is with surgery. There are neurosurgeons that are experienced with this type of surgery. I would strongly advise you to seek out one of these surgeons as the surgery is a delicate one.

I am now waiting for my surgery. I can't imagine what the remainder of my life would have been like had I not continued to search for an answer. Even if this is not the condition that you have, please, don't give up the fight. There is an answer out there for you if you keep looking. GO WITH YOUR GUT!

I wish you all the best of health.

If you have any questions, I will be glad to share.

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