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Brain & Nervous System Disorders Message Board

Brain & Nervous System Disorders Board Index

well here is a pretty good list of symptoms from *********.org
Headache (esp. if daily or at lower back of head)
Painful tension in neck
Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or "halos" / nystagmus
Tingling / numbness in the extremeties
General imbalance / clumsiness
Memory loss
Restricted movement
Intolerance to bright light / difficulty adjusting to light change
Vertigo from position change or sudden standing
Difficulty walking on uneven ground / feeling ground under feet
Poor / degraded motor skills
Difficulty driving
Difficulty negotiating steps
Pressure / pain in the neck
Pressure / pain behind the eyes (soreness in the eyeballs)
Back pain
Neck spasms
Ringing in ears (like the tone heard in a hearing test)
Pain when changing position
Tingling / crawling feeling on scalp
Intolerance to loud / confusing sounds
Decreased sensation to touch in extremeties
Decreased sensitivity to temperature
Pain & tension along ear / eye / jawline
Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes
Spontaneous vertigo
Hand tremors
Poor blood circulation / cold hands & feet
Sinus / mucous problems
Sleep apnea
Decreased muscle tone
Pressure in ears / ears feel stopped up
Difficulty reading / focusing on text
Depth perception problems
Burning sensation in extremeties / shoulder blades
Menstrual problems / severe cramping during period
Fluid-like sound in ears (like water running)
Loss of sexual interest / lack of sensation in pelvic area
Pulling sensation while sitting / standing
Intense itchiness w/profuse sweating
Slurred speech
Gag reflex problems / lack of gag reflex
Pressure / tightness in chest
Loss of bladder control
Frequent urination
Dehydration / excessive thirst
Electric like burning sensations
Unequal pupil size
Loss of taste
Popping / cracking sounds in neck or upper back when stretching
Loss of smell / problems with sense of smell
Dry skin and lips
Sudden / abrupt changes in blood pressure due to awkward position of head
Hiccups associated with drinking carbonated beverages
Skin problems

and you don't need ALL to be a chiarian

As for the cause, chiari is a congenital malformation (congenital = born with it) Where the cerebellum (hind brain) is distended down the foram magnum (hole at the base of the skull ur spinal chord goes thru) and there is pressure put on ur brain and some times ur spine which can lead to another condition sometimes associated with it, syringomyelia. Thats where the chiari causes the CSF to stop flowing and creates pockets of spinal fluid which slowly severe and crush ur spinal chord.

Alot of these symptoms can be attributed to things abit less severe then chiari cause chiari is still considered rare. Other things can be lupus, brain tumour, MS, prenacious anemia, sevre thyriod problems, fibromyalgia etc etc the list goes on. Best bet is to get an MRI done to rule out the brain conditions and if they come back clear (make sure u get 2 opinions that they are clear to make sure cause alot of peopel miss CM) then blood work for specific conditions etc etc.

If you have chiari (with or without the syringo) you most likly will need decompression surgery, this is where the remove parts of the skull around the base and sometimes the nobbly parts of C1 and C2 of ur spien to make room. Also some may split the dura (linning of the brain) and put a patch there.

If you have anymore questions feel free to PM me or something. I got a major crash course in it and am right now recovering form the decompression surgery.
Jellebeans, there is no specific “order” that the symptoms occur in, nor particular symptoms that are worse for everyone. Each person can suffer differently from this disorder because it depends on what parts of your brain are experiencing pressure and also on if/where your spinal cord is impinged.

Yes, eye pain can be a symptom, due to pressure on certain nerves. That “pressure” in your head seems most telling to me. Is it worse when you bend over? Sneeze? Have a bowel movement? Those things are typical of Chiari.

I’m sorry you are not receiving support from your partner. I “lost” my husband to this illness. He couldn’t handle it and left after 14 years, but not before becoming a mean, brutal alcoholic and taking all his hatred for the disease out on me. Then I thought I met someone else, and he went the same route in the end. Now, whenever I meet anyone, I tell them upfront that I have MS and Chiari, and they go away before I get a chance to get attached. LOL I’m prepared now to be “alone” for the rest of my life. My daughter says it’s because I’m “too strong” of an individual at THAT is what scares men off, but I see the fear in their eyes when I tell them, and I know what it really is. The last guy said that even though I’m doing fine now, he was afraid that “someday I’d get REALLY sick, and he’d have to take care of me”. Yeah, right!

Luckily, I have a very close, tight-knit family, so who needs men, right?

As for the doctors, I guess that we have to understand that Chiari is still a little-understood condition, that until recently, was only ever diagnosed post-mortem (after you were dead, during the autopsy!), so treatment has come a LONG way in a very short time. Doctors ARE very busy, and need to find time to be educated about these things, but unfortunately, the conditions that they treat more commonly have to come first on their educational and treatment schedules. Thankfully, there are Chiari centers and specialists popping up. Do some more research, Jellebeans – I bet you can find one in the UK, and they may be willing to see you without a referral if you present a good case to them. I spoke to the doctors at The Chiari Institute on Long Island, and they would have seen me if I could have got there.

And even without a diagnosis, a pain management specialist should be willing to work with you to help you get back on your feet. Often they don't KNOW where the pain is coming from, but they do know how to treat it.

Good luck to both of you!


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