Hi all, new here

Hi everyone, I'm new to the forums and just recently diagnosed with Chiari malformation and syringomyelia on 11/5/13. My cerebral tonsils herniation is 3.6 mm and my syringomyelia syrinx is from c2 to t11. The symptoms I deal with are:

Symptoms: Headache- Will start randomly from the back of my head and radiate to the front of my head. headaches come up when making any sudden/fast movements. headaches come up when im physically/active carrying things. headaches will sometimes radiate down my neck and into my upper back aswell. headaches from straining. headaches from coughing (I dont cough much, only when I get colds) headaches from sneezing

Weakness- my left arm is weak, I have a hard time raising my left arm above my head and trouble carrying things. Terrible grip with hands and dropping things.

Ringing in the ears- will happen randomly during the day.

loss of balance- when I walk my left knee will randomly give out causing me to lose my balance/fall, this happens when I also go downstairs or upstairs and even when standing still after periods of time. Also sometimes my walking is clumsy, sometimes I will bump into things/trip over my own feet.

spastisicty- feeling as if my joints get locked up/stiff and hard to move, mainly my left arm/hand/leg.

Incontinence- Spasmodic bladder/Overactive Bladder and Bowel incontinence, I don't have much control at all for both. Most of the time I will end up going and not realize it until after having a urinary and bowel accident. When I try to use the toilet and have a bowel movement and try straining I never have any luck and only get a throbbing headache in the back of my head/neck and I don't feel any muscles at all pushing in my lower back that normally helps people go.

Numbness-My left hand in the fingers are numb, in order to have any feeling at all in the left hand fingers, they have to be crushed/pinched real hard in order to have any feeling in them. My left Leg in the knee area becomes numb when moving a lot and standing stationary, causing me to limp or fall. Sometimes when I'm doing a lot of walking my left foot will become numb and causing me to fall.Left side of face also numb.

Aches and pains- I get a lot of aches and pains in my back and arms. The types of pain I get also in my arm are burning/tingling sensations, usually that happens when my arms are straight out like when I'm on the computer typing. My back aches are triggered very easily from any activity, especially with lifting and bending down. I had an EMG done on my arms with my old neurologist and when he did those shock things on my arms and afterward it caused me to have very bad back pains the rest of the day, before the EMG I didnt have any pain in my back.

dizziness- Sometimes I get dizzy for no apparrent reason while in an upwards position, if I'm walking while I'm dizzy I need to have something to lean on. When I get dizzy and rest my head back onto the back of a chair recliner reclined out or when I lay down I feel relieved.

twitching- I get a lot of twitching in both arms, left is far worse.

trouble swallowing- Sometimes when I eat I have problems swallowing and my mom has seen it before, she will complain asking me why do I make that noise when I swallow. I have easier time swallowing right after drinking. I also have problems swallowing my meds without a lot of water. When I have trouble swallowing, my throat and down through the esophogus leading down to my stomach feels tight/constricted. Depending on some food textures I cant swallow some foods at all, like jello and shrimp, those when I try to eat will make me gag and I cannot swallow it no matter how hard I try, even with some steaks that are hard to chew, I will have the same issue.

Trouble Breathing- happens when I do any physical activity too fast. I also have trouble breathing when I have trouble swallowing.

Fatigue- I get fatigued a lot, some day days I'm too tired to go anywhere or do anything, even after having 10-12 hours of sleep.

Vision- I do have minor issues with blurriness trying to read from a distance, making me to squint my eyes. also sometimes when I get a headache I will see floating yellow star specs that come and quickly fade out. I'm not sure how this happens but it doesnt happen a lot, its kinda rare, though I remember it going on as long as I can remember, even as a kid. sometimes when I'm concentrating looking at something my eyes will jerk, by quickly moving left and right, doesnt happen a lot where it interferes with my life.

forgetfullness/short memory-When told to do things like chores I end up forgetting easily shortly afterwards. Forgetting where I placed items shortly after I put them down.

I have a question to ask. I have read that syringomyelia can cause paralysis.. and of course that scares me, also with the size of my syrinx, does that make me more at risk? I am seeing a neuro-surgeon next Tuesday to see if I'm a candidate for surgery.

btw sorry for my bad grammar.

Tom, Em gave you some great advice. Yes on the tethered cord check (bladder and bowel). Chiari is not a widely understood problem among doctors- including neurosurgeons- along with all that commonly comes with it: syrinx, tethered cord, EDS/ cranio-cervical instability, and POTS. I recommend finding a Chiari specialized neurosurgeon, one who performs a lot of decompressions and understands the complicating afflictions that come along with it. I am sorry you got this diagnosis but glad you are here, and glad you are at least getting some answers about your symptoms. You have been through a lot, you deserve the best treatment.


Hey All,

I have a Chiari that is 14 mm. I also have 15 lesions in my brain. I have known about the lesions since 2007, the neurologist thought I had MS. I just saw a new neurologist last week. He says there isn't much change since 2007 and doesn't think I have MS after all. I have numbness on the left half of my face and my left hand. My skull has hurt since I was younger. I didn't learn I had my Chiari until 2007. Over the last year my skull pain has increased, I have trouble sleeping because of the pain and pressure in my skull. I have an appointment with a neurosurgeon on December 23, my Chiari was 10.3 in June 2013 and I had a Ct 3 days ago that says it is 14 mm. I am anxious to see if this can be causing all my problems. I want to know if anyone has a Chiari as big as mine? Please let me know if anyone does.