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  • If You Were Diagnosed with MAV-PLEASE READ!

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    Old 05-29-2009, 10:03 AM   #1
    pitbull1111
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    If You Were Diagnosed with MAV-PLEASE READ!

    Hi-

    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 This condition was not diagnosed from my MRI previously because most radiologists use an outdated method for determining this condition.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.

    Last edited by pitbull1111; 06-01-2009 at 05:47 AM.

     
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    Old 05-30-2009, 05:11 AM   #2
    xtine04
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    Re: If You Were Diagnosed with MAV-PLEASE READ!

    you might want to take a step back and see what is causing the chiari. i have this too although i don't have a diagnosis... i have all the classic MAV symptoms although have discovered it's when i leak a clear, warm salty fluid from the side of my mouth... and on the same side as the bad ear.

    turns out that i have a perilymph fistula leaking CSF or a CSF leak in my ear.

    nothing is confrimed yet but i improve if i limit my activity.

    thanks for sharing this.. i'm going to way unpopular when i say this but i believe that MAV is over-diagnosed.

     
    Old 05-30-2009, 09:11 AM   #3
    pitbull1111
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    Re: If You Were Diagnosed with MAV-PLEASE READ!

    I'm happy to hear you found out what's causing your problems. And yes...I do believe the MAV is used too much as a diagnosis when nothing else can be found. And due to the fact that the drugs for migraine can take months to work and then because it's not working a new drug is tried...and more months of waiting...people can go for a long time suffering without getting a proper diagnosis. It's really a shame. I had one neurologist tell me he didn't even believe in MAV as a real diagnosis!

    I just knew I did not have MAV and after the first drug failed after a few months I didn't try anything else. It's so important to pay attention to your intuition.

    Last edited by pitbull1111; 05-30-2009 at 10:47 AM.

     
    Old 05-31-2009, 08:28 AM   #4
    rondapearl
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    Re: If You Were Diagnosed with MAV-PLEASE READ!

    I had my A. Chiari Malformation corrected with suboccipital decompression at the University of Michigan Hospital a year and a half ago. My symptoms were relieved IMMEDIATELY. The surgery didn't even have a painful recovery. The worst part was getting the staples out.
    However, from the surgery (side effect) I now have 2 bulged discs C4 and C5 which causes spasms in my back near my scapula and down my right arm...but this is nothing compared to the headaches associated with ACM. Also I have TMJ disorder which I never had before. So I am looking for answers on that. My local docs can do nothing about it except refer me to an oral surgeon which my insurance will not cover. Still, I would never go back pre-ACM. I have a routine MRI coming up here shortly.
    Here is another incident. You may know ACM is hereditary so I want to tell you about my mothers ACM. She had level II ACM with a large syrinx...(mine was tiny). She had the sub-occipital dec done and her symptoms were NOT relieved. So she had another surgery done where they plated her c-spine which has caused her to lose function in her arms and her entire neuro functioning is slowly declining. She is wheelchair bound and can no longer dress, eat, or use the bathroom by herself.
    Please please if you are having the surgery done make sure to research your doctor down to the color of his underwear (just kidding). The doctor that did my mom's was a first-timer. The doctor that did mine at U of M supervised a student that did mine. I am far in favor of learning/teaching hospitals because the head doc is VERY experienced and the student doc WANTS to do a perfect job. Dr. LeMarka at U of M did mine and I highly reccommed him. His secretary is amazing and I am always paid attention to with his ENTIRE staff. Good luck to you and your surgery.

     
    Old 06-11-2009, 09:55 PM   #5
    alexiwildchild
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    Re: If You Were Diagnosed with MAV-PLEASE READ!

    This is so strange that I came across this. I used to be on this board since 2007, but haven't been on in a while now. I was the crazy girl with the jumpy, shaky vision. I was diagnosed with MAV, lyme disease--which didn't pan out, and all sorts of other things.

    WELL>>>>i just came across my MRI report from last July, and for whatever reason, they didn't see that i have a herniation of 6mm, which is enough for a diagnosis of Chiari Malformation I. So I am being referred out to a neurosurgeon to discuss further testing. I am relieved to finally have an answer that makes sense for once. it just took TWO YEARS (today actually) and now I have something more than just a doc saying, "well, i'm not sure what's causing your symptoms, so let's put you on a migraine med". so yeah, wanted to update with this. which i'm not discounting MAV at all, but I figured all along this wasn't my particular problem.

    hope everyone here is well

     
    Old 06-16-2009, 06:48 PM   #6
    pitbull1111
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    Re: If You Were Diagnosed with MAV-PLEASE READ!

    Alexiwildchild...so happy to hear that you got a diagnosis finally!! Please keep us posted on your progress.

     
    Old 06-17-2009, 03:46 AM   #7
    Chil8
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    Re: If You Were Diagnosed with MAV-PLEASE READ!

    Thank you Pitbull and AlexiWildChild! For over a year I have suffered on and off with the wide range of symptoms and been to see a number of consultants and diagnosed with anything from Optical Migraines, Labyrinitis, suspicion of Stroke and panic attacks and more recently Oscillopsia due to Gentamicin poisoning. And I have never knowing taking Gentamicin! Yet all of my symptoms are in the Chiari Malformation range. Having been through so many hoops I feel like a break but when the next episode errupts I'll feel a little more knowledgeable to challenge the muliple diagnosis thanks to you all. It may be some time but I will be back to report. In the meantime I clutch my driving licence and promise never to drive during an "attack" and hope never again to be stranded for hours in a layby far from home waiting for the curtain of doom to lift.

     
    Old 06-17-2009, 09:58 AM   #8
    pitbull1111
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    Re: If You Were Diagnosed with MAV-PLEASE READ!

    Chil8...I can certainly understand where you're coming from. I'm so happy to hear that there is a possibility it is Chiari. The stress of not knowing what's causing your multiple symptoms is debilitating at times. Keep pushing until you get an answer and please keep us posted. I wish you the best...

    Pittbull

     
    Old 06-17-2009, 10:02 AM   #9
    pitbull1111
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    Re: If You Were Diagnosed with MAV-PLEASE READ!

    BTW...I earned the name "Pitbull" due to my tenacity for not letting go of the fight for a diagnosis with this thing. I refused to settle for a diagnosis I didn't believe was correct. I can only hope and pray you can all muster up the strength to do the same.

    Last edited by pitbull1111; 06-17-2009 at 10:03 AM.

     
    Old 09-21-2009, 05:43 AM   #10
    ottyf
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    Re: If You Were Diagnosed with MAV-PLEASE READ!

    Hello everyone, I've read the symptoms list and everything and it sounds somewhat like what I've been experiencing for the past 10 months.

    Here is the list of my symptoms, I might forget some:

    -Memory loss
    -Muscle twitching
    -headaches
    -brain fog
    -vision problems (floaters)
    -sensitivity to light/hearing
    -light ring in ears (only noticable when its a quiet area)


    Thats the basic symptoms that i ever notice, i havn't really been dizzy, i feel like i am but i have tested that by walking in a straight line with my eyes closed and standing on one leg with my eyes closed.

    The difficult thing about this is that there can be a lot of different things that cause these symptoms and im not sure if its MAV or not..

    If anyone can help guide me to what it might be or any advice that would be greatly appreciated.

     
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    Old 10-05-2009, 01:37 PM   #11
    pitbull1111
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    Re: If You Were Diagnosed with MAV-PLEASE READ!

    It's hard to say. Did you get an MRI? If you did and if it was negative, then get it looked at again for a possible borderline chiari. You can actually look yourself to see if it looks like there's a lot of crowding in the area of the cerebellum and no room in between skull and brain.

     
    Old 11-24-2009, 06:29 PM   #12
    fuzzy101
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    Re: If You Were Diagnosed with MAV-PLEASE READ!

    Hi Pitbull, Just wondering how your surgery went? or is going?

    would be good to get an update.

    Thanks...

     
    Old 08-04-2010, 08:07 PM   #13
    Doina
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    Re: If You Were Diagnosed with MAV-PLEASE READ!

    Quote:
    Originally Posted by pitbull1111 View Post
    It's hard to say. Did you get an MRI? If you did and if it was negative, then get it looked at again for a possible borderline chiari. You can actually look yourself to see if it looks like there's a lot of crowding in the area of the cerebellum and no room in between skull and brain.

    Pitbull, I have two syrinx and what looks like a borderline Chiari. However the CSF Flow test came nagetive. But I have so many of the symtoms you listed that my life is impossible. Cannot work anymore. How was your surgery? How that you were able to convince the surgeon to help you. Thank you

     
    Old 10-13-2010, 02:35 AM   #14
    reumi
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    Re: If You Were Diagnosed with MAV-PLEASE READ!

    Thank you !

     
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