Who will help me

I was just diagnosed recently with chiari malformation and wanted to share my story and maybe get some answers as to what symptoms of mine r normal chiari symptoms or maybe something else. Ok to start, I have a very physical job and have been in pain for several years now. Because I would feel slightly better on my days off and my pain would get worse near the end of the work week I always assumed it was all do to being overworked or stress on my body. I’m only 31. Had tendinitis in left shoulder around this time last year and had pain, numbness and burning in arm ever sense. Now I think my right side is worse then my left which is how I found out about the chiari. Went to pcp with extreme tightness in right shoulder and neck, some days I couldn’t even turn my head. Have burning in both arms when using the along with burning and pain between shoulder blades, mainly right side. Neck hurts and cracks alot. No headaches though. Had MRI and it showed 3-4 mm herniation and slight syrinx with no evidence a mass and 1.5 cm in lenth, straighting of the cervical lordosis. From what I read a 3-4mm herniation is not enough to cause pain. Is this true? Had emg done in arms because they hurt and go numb. Reports said mild carpal tunnel in right (no need for surgery) and possible patient may have components of tendonitis/epicondylitis or a myofascial pain syndrome. Have not found any connection of this and chiari. Could they be? Have appointment with neurologist next week that my pain specialist set up. Also have another MRI and emg for numbness in feet, mainly right side. Any info or comments would be appreciated. Thanks

Oooh! 3 mm is more than enough to cause not just pain, but a serious amount of other issues. Before my surgery, if you look at the survey of symptoms that Emmaline posted about, I had 65+ out of those 80 symptoms. Today, 2 years after my surgery, I can still check off over 30 of them with a 3 mm herniation.

Sharron, I’m sorry you have this, truly. But the positive side is that you will be getting some answers finally. I suffered too for many years before getting my diagnosis of 3 mms. The girls are right, size does not matter, it’s how symptomatic a person is and how the cerebral spinal fluid is able to flow with the crowding. Also right, unfortunately, about neurologists. I personally don’t believe Chiari is rare, just rarely diagnosed, so there are soooo many doctors who have an old, outdated education about it. I hope you don’t ever get a nay-sayer, but if you do don’t put a lot of stock into it. Most of us have had our fair share of the “there’s nothing wrong with you, it’s not Chiari, go home and try not to be so stressed outs” an NS who précis lizard in Chiari will have the most knowledge to help most likely. Also, Chiari holds hands with all sorts of syndromes, ailments, and day ruiners, so be on the look out as you research. We are kind of on our own with this(besides a few special professionals and your Chiari friends). Glad you are here!