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Neck Problem or Chiari?

I'm a 26 year old male, not diagnoses with Chiari Malformation but based on my research my symptoms match up BIG TIME. Some, however, are still questionable. It seems like a lot of symptoms for Chiari patients are unlimited or "anything and everything" ranging from back problems to gastrointestinal. This is why I'd like to hear from firsthand accounts of people that have had the following symptoms:

Neuropathy (tingleing, burning, stinging, almost static like) all over most of my body. Mostly in quick jolts on scalp and around eyes and forearms.
Severe Tinnitius that gets worse after eating.
GERD
Nearsightedness/Visual Snow/Blurry Vision
Weak Extremities
Teeth/Jaw Pain
Neck Pain
Headaches (not frequent, maybe once a week)
Sinusitis
Frequent Ear Infections
Indistinct throbbing behind throat/back of head
Full-body throbbing

I understand some of these symptoms are very common among many Chiarans but some I haven't really noticed commonly. One thing I need to stress is the staticy neuropathy. It goes a little bit beyond "tingly" and is downright discomforting and very distracting. I think this may be neck related, however I haven't really met the conditions for surgery just yet and my neurosurgeon is recommending intensive physical therapy which, if I do have Chiari, could possibly worsen my condition.

I've been tested thougherally for cardiovascular, gastroentistinal, thryroid and any vitamin deficiency you can think of and they all point to a neurological cause. I've also taken it upon myself to get tested for Lyme, even though  I don't recall a tick bite. This has also come back negative.

The only tests that can back with "iffy" results were the MRI's taken of my spine and brain. I have several buldging discs in my neck and thoracic spine, as well as a protruding disc in my lumbar. The brain MRI which was taken almost a year ago (as opposed to the spine ones which were just over the past two months) did show a slight "drooping" of the tonsilar cerebellum by a millimeter or two. This put my on a hunt for a diagnosis but no one would budge and even now with my neck MRI they still won't, since as my neurosurgeon puts it, there's still enough space by the cerebellum for CSF to flow efficiently. Mind you this was said based on my cervical MRI, not a second brain scan. Even though you can still see this part of the braini n a clear cervical spine MRI.

Apparently I'm not within the threshold of surgery. In fact I was recommended PT but not only does my family doctor not recommend it as it could make my symptoms worse (his words) but I understand this sort of thing can make Chiari Malformations worse. I've seen several chiropractors off and on, including the famously alternative "upper cervical chiro" for nearly a month but my symptoms only got worse. I fear PT might do the same and I'm having trouble deciding if aggressively working towards curing my neck problems will better or worsen my condition.
3 Responses
5640779 tn?1375813366
Well you certainly describe Chiari.... and it could be debated, it always is. But until you find a NS who cares and will listen to you, things won't get any better. Sadly, the truth is that it's very common to be under treated and mis diagnosed by Dr's. It's not at all uncommon. Do your research On the Dr's and seek another professional opinion! Good luck in your quest:-) Lisa
Avatar universal
Was there any test in particular that led to a diagnosis? Mine won't clearly show up on an MRI but if I can convince them to do a certain test that might better my odds.
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Finding a Chiari specialist will help as too many use the length of the cerebral herniation to classify it as chairi when it is the malformation of the skull that makes it chiari.

Next u should have a CINE MRI to see how obstructed ur CSF flow is as a very minimal herniation can block more CSF if it is wider then one that is very long and thin.....so do look for a Dr that will look at other issues then just how long the herniation is.

Also always request copies of the MRI's, tests u have done along with the reports so u can get other opinions faster.

Use the list of Drs in the Health Pages to research Drs...keeping in mind this list is not a referral nor an endorsement and u may have to travel.

http://www.medhelp.org/health_pages/list?cid=186
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