CHIARI MALFORMATION COMMUNITY
Help Finding Where to Begin!

Help Finding Where to Begin!

I have been having some problems for about a year and a half now, and I would like to know more about how to go about "solving" them. I'm 20 years old, and started out experiencing something that feels like a tension headache on both sides of the back of my head. This has progressed to upper neck pain that feels as though it's spilling down my back and into my shoulders. I usually take 3 tablets of 200 mg ibuprofen, but recently that has not worked. Today I woke up with this pain at the back of my head. More disturbingly, pressing this one little depression on the left side give me an acute pain! Ouch! I also notice that the back of my right ear feels higher (and warmer) than my left one. I assumed it was just nerve pain. Last summer I had an MRI done for my neck, and a slight disc bulge was detected around the upper disks (I think C4 and C5 or C3 and C4; can't remember). I experienced (and still do) some dizziness when standing up or after bending to pick something up, also usually have low energy levels, but I assumed that this was due to the fact that I've gained a good deal of weight since entering college. I took it easy, and the pain went away when I went back to school. Also read that disc herniation goes away after a while, so I figured mine was about the same. At school, I still get tension headaches and I still have my 'soft spot' (if I press hard), but that's about it. I initially attributed the tension headaches to personal stress I experience; I've had a hard time keeping myself motivated and adjusted to college work, and I am due for a screening for ADD in the fall. I was curious about my head pains, so I participated in a study w/ the neuroscience department, so I could get some MRI images of my head when the study was over. They look fairly normal, though, so I am still confused. Apart from the disc herniation(s), I had scoliosis as a teenager, but the curves weren't really close to my neck. I am very exasperated, because I'm not sure where to start. I've been having some trouble with impulsivity and controlling my temper that started about two years ago, and I've had ADD like learning patterns for most of my life, though until university I was always fairly good at coping by myself. I also have sporatic energy levels, and have always been somewhat lethargic, even as an infant.  I would like to know if the problems I'm having are related to some untreated learning / behavioral problems that are partially expressing themselves as psychosomatic symptoms, or if I actually have a neurological problem that is causing my inattentiveness, 'mental mess', and increased problems with impulsivity, especially since I know that adults are supposed to become less impulsive (even those with AD/HD) as they get older. Help and advice as to where to start would be greatly appreciated. Thanks!
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620923_tn?1335125657
HI and welcome to the Chiari forum.

Do u have copies of the MRI and the report?....Were u dx with chiari, or r u trying to find out if u have it?

If ur MRI shows low lying tonsils u would need to have further MRI's...cervical , thoracic and lumbar spine  and a CINE MRI w/wo contrast.

U would also want to get blood work done...most of u when we had our MRI's had lymes, lupus, and MS ruled out.ANd u should have ur PCP look at ur vitamin and mineral levels....low levels can cause all types of symptoms.
U also want to have ur thyroid checked.

Please keep us posted on what u find out.

"selma"
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560919_tn?1218073969
how long does it take to get diagnosed?
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620923_tn?1335125657
It all depends on what dr u r going to and if u r getting the right testing done.

Most of us can say it took our age to get dx'd bcuz this is congentital...we have had it since birth.I went to drs for as long as I can remeber trying to figure out what is going on....I found out when I was 48......

It is much easier to get dx now bcuz of MRI's....they were not done back when I started going to drs....

May I ask what tests have u had done so far?

"selma"
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560919_tn?1218073969
I have had an MRI, but it was for my neck/ upper spine (they found a bulge there). In addition I've been treated for scoliosis, but that was not for this (and again, the xrays were for my spine). I've also had a TSH test.
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620923_tn?1335125657
If u had a larger herniation from chiari it should have been noted in the cervical spine MRI....But a brain MRI w/wo contrast is needed to rule it out.

TSH will only show if u have a thyroid issue, but HASHIMOTO's is a autoimmune thyroid disorder and just a TSH will not show if u have this....it may say normal......

To rule this out, u need to have a FREE T 3 or FREE T4 along with TSH and TPO antibodies.

Many with chiari tend to have connective tissues disorders and autoimmune conditions.

"selma"
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