Chiari Malformation Community
Abnormal Symptoms?? HELP PLEASE
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Abnormal Symptoms?? HELP PLEASE

Hi all I'm new to all this and could really use some help :) In January of 2010 I was told I had a syrinx in my spine near T3-T5. They had done an MRI of my C and T spine and brain but this was the only thing that they found at the time. My symptoms then were dizziness and headaches in the occipital region ALL the time. In the summer of 2011 I started getting the dizziness again and the headaches were really bad. Also my lumbar area is untouchable, you touch it or if I lean up against something it brings me to tears, my hands and arms would get this weird feeling (like someone was pulling long hair up and down them) and then they would get tingly and numb. Well they did another MRI and I still had the syrinx but they also found that I had Chiari Malformation 1 but said there is nothing that they could do for me and sent me home. Well my symptoms are starting to get worse now and I was wondering if the following are any symptoms that any of you have had: nausea (like all the time and it makes me not eat), really harsh head aches in the lower back of the head made worse by laughing too much, coughing, sneezing, getting too angry/excited, sometimes my right eye will lose some vision (and this is the only eye I have so this makes things hard) sometimes the vision will go in and out with throbbing of headaches, I'm dizzy all the time whether I'm laying down, sitting or whatever (made worse by closing eyes), my neck hurts all the time, range of motion in neck is limited, tired and weak all the time, lymph nodes at the back of head are swollen often, when I make my head go forward I can hear what sounds like liquid squishing in the base of my skull, my hands and arms still get the "hair" feeling and tingly and numbness, I get off balance when walking and will sometimes almost fall over just standing or sitting there, my legs hurt so bad all the time (not made worse or better by anything), my toes will turn purple at random times (not brought on by being in the cold), my muscles feel like they get tired abnormally easily, occasionally I have trouble with speech (it's like it has trouble coming out the right way like my words and letters within the words are jumbled up). If anyone could give me some advice or let me know what symptoms you have experienced?? Should I see a different neurologist?
Tags: balance, numbness, troubled speech, Advice, weakness, Headaches, Syrinx
3 Comments Post a Comment
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620923_tn?1402936350

  Hi and welcome to the Chiari forum.

YES< YES< YES !!!

These are deff  Chiari and Chiari related symptoms....so u will need more testing including the lumbar spine, it is possible u have tethered cord as well.

Get the copies of ur MRI's and the reports and going forward always request copies of each test and report so u have it to get other opinions.

We have a list of Drs for u to use to research Drs, the list is not meant to be a referral and not all on the list may be true Chiari specialists but have treated a member here....

I had a NS tell me the same thing...u have Chiari, but it is above me...no suggestions where to look or go next...

U need a NS that is a specialist with Chiari.
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The NS I was seeing had mentioned the possibility of a tethered spine but never ordered any tests to rule it out. It is great to know that these are also symptoms of Chiari, I was afraid there was no hope and that I was just going to hurt forever :) I just want to be fixed, I sent a request for my MRI that found my CM1. Should I also get the records of what the doctor said?? Thanks for all the help!!!
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620923_tn?1402936350

  Well do not hope to be fixed as u can be disappointed....there is no cure or real fix for these issues...once u have them u always will....and surgery does not always help with ALL the pain...sometimes some of it....so be aware of that....

U will want the report....but that is all...not all Drs read the report but it is one way  for u to know what was noted and not told to u.

If u have the report for ur brain MRI see if it indicates an elongated brain stem, that is a sign of tethered cord...along with a sacral dimple...and a few others,,...but if u have those it is more then likely .
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