Chiari Online Support Group

Diagnosis confirmed but no measurement


#1

Hi, I was diagnosed with Chiari 1 Malformation just before Christmas. All the posts I’ve read mention measurements as in 4-6mm but the doctor I saw didn’t mention it. What does the measurement relate to and how significant is it in terms of pain and potential surgery? I’m in the UK and just wonder if any other UK members are in the same position in nit knowing? Thanks


#2

I’m not so sure the measurements matter as much as the symtoms. Believe it or not a large percentage of peoople with Chiari never even know, never have a symtom, regardless of size. I think it’s all very indivualized.

azurelle


#3

Hi, measurement is how far your brain descends down the spinal column. But like you were previously told. It’s not only about the measurement. Symptoms play an important role.


#4

Thanks for the info. I won’t worry about that bit. My main problems are, like most I guess, with a constant headache, mild tinnitus but the worst bit is the unbearable pain when I cough, sneeze, strain etc. I’ve got some painkillers prescribed by my GP but they don’t help that much. Does anyone have any tips for how to deal with the unbearable pain? Thanks.


#5

Hi, I had similar symptom and for 2 years I was unable to bend forward, sneeze, or laugh without terrible pain.They said my mine is barely 4mm. I started taking an NSAID 3 times a day and getting PT to improve posture. I have had really good results so far. Down to 1 dose of NSAID each afternoon. Also, I sleep with no pillow and a rolled towel under my neck to improve the curvature. I am 52 and and my thought was why is this just bothering me for the last few years? Must be some change due to aging. When I stop my exercises it gets bad again.


#6

Thank you Linda, that’s very helpful. I had a coughing fit the other night and thought I was going to die, the pain was so bad. I’m having physio and acupuncture so hopefully they will help. I’ll try the rolled towel-anything to help. I wake up every day with a headache and it’s so wearing. Thank you.


#7

I hope it helps. For me, getting tight muscles in my upper back and developing a straight neck seemed to cause the most problems. It is a lot of physical therapy work to improve my neck curve, but well worth it.