hi

not dx but do think i may have it, as my son was dx 5 years ago, below are a list of my stmtoms if you could please tell me what you think, i would really apprecioate it, i'm struggling to get my gp to listen to the possibilty this could be my problem.

10 years ago had fibroids which led to a hysterectomy at 26 years old.
soon after started having cognitive issues, lack of concentration, mood swings, dizziness.

in the last 5 years it has gone very much down hill.

2005- episodes of
severe sciatica,
extreme face pain,
tingling in legs,
a sensation my legs were not attatched to me,
neck pain ,
headaches.in back of head but also in eye

2006- same as above,
including upper back pain like a burning ache between shoulder blades that would come in waves, usually after doing something like blowing drying my hair, packing shopping into bags.
bending neck causing strange sensation in head, like my head is full.

2007 - current date- all of the above plus numbness and tingling in foot and other various parts, tends to move around.
- numb fingers when weather changes
.- brief hearing loss(a bit like when you get water in the ear),
-skin sensitivity mainly on scalp hurts to touch it.
- random stabbing pains.
-vertigo when going to sitting position when head is flexed down wards
- tight banding feeling around ribs which is not painfull but very uncomforable takes your breath away.
- a few times woke up at night gasping for breath.
-very painful muscle contractions mainly in upper back and legs causes probelms walking
- excess mucus in back of throat that makes me gag
- numbness and tingling in face
-vision focus problems
- sensitvity to bright lights, like those in supermarkets or cars at night-sensivity to noise
- general aches and pains
-sudden episodes of weakness/fatigue, almost like the body just shuts down
-shoulder pain, sometimes i cant lift my arms up as my shoulder muscles are so tight and it streteches across the neck and back.
-excessive sweating
- the feeling i can't breath like i feel i'm not taking enough air in
- body jerks like those when ur about to drop off to sleep, but mine happen in any part of the body not just the leg
- co-ordination problems
- speech issues, words just come out with the wrong pronounciation.
-hoarse voice that comes and goes with no obvious cause

i think thats about it, i have at least one of the above happening every day, my probelm is my gp doesn't listen, up until this year it was all put down to anxiety/depression, then gp dx fibromylgia, then dx chronic fatigue, i have had so many blood tests i feel like a pin cushion, all normal except vit d was a little low but after taking supplements for 4 months this is now ok.

last week my walking, particulay my left leg, the muscles were so tight it kinda of effected the joint movement and my leg was jolting while walking, so off i went back again to gp who said he would get me an mri of the head/neck and spine, however he must have changed his mind when i left cos i got an appoinment thru for a ct scan just of the head, which i am presuming will come back clear, and from what i can gather a ct scan would not pick up cm especially if its just of the head.

thanks for reading any advice or thoughts would be appreciated.

I was diagnosed with Chiari 1 (1.0 cm herniation) in 2003, and had surgery in 2004. Your symptoms sound very much like what I experienced for many years. It was by accident that my herniation was found. I had a neurological rx to Remicade and had MS type symptoms. I was finally sent to Neurology who did MRI. I definitely believe you need a neurologist instead of just GP to evaluate you. GP's are great but not for complex issues like this. Sometimes you have to get 'firm' with your docs and tell them what you want.And if that doesn't work, you tell them you don't think you are getting their best work and need better care.

The only way to find out is a MRI .

here are a list of symptoms
http://chiarione.org/symptoms.html

thanks guys.

well i got my ct scan results from gp today. which say there is significant lessions to the fourth ventricle(don't know what that means)but the most important part is severe crowding in the forearm magnum consistant with arnold chiari malformationtype 1, please follow up with an mri.

so now after many yeras the gp is finally listening to me and is ordering an mri of neck and spine.

the gp is pretty sure an mri will confirm the ct scan but to what degree of the herniatrion remains to be seen, also checking for syrinx and tethered cord?

take care

Dear Chiarichic,
On Oct. 5th of this year I went to see Dr. Green in Miami. I was so hopeful that I would finally have resolution of some kind once I saw him. They did a CINE MRI and I felt horrible during the test. When I saw him for the follow up on Oct. 6th I was told that I do have Chiari 1 and also major neck issues. He told me that he didn't think it was the Chiari that was causing my symptoms, but he thought it was my neck. He ordered 6 weeks of physical therapy and to follow up with a pain management doc. I have medicaid and found that Medicaid does not cover physical therapy or pain management. I continue to have debilitating headaches and seizures. I don't know how much longer I can live like this. I don't understand why Dr. Green would not do the surgery, as I have a 5mm herniation on the right as well as a 4mm herniation on the left side. I thought he was highly recommened but was deeply dissapointed when basically nothing was done. When I told the doctor that I only had medicaid I was told that it was "pretty much impossible to find a physical therapist that takes Medicaid. When I asked what I should do, he simply shrugged his shoulders. Do you have any thoughts or recommendations? Thanks so much and God Bless.

I had to have a vp shunt due to hydrocephalus caused by Chiari I malformation. I have had 8 shunt surgeries since it was 1st placed in 11/2010.
I was diagnosed with Chiari I malformation after a MRI showed the condition. Also diagnosed with Arnold's Chiari which means that my spinal fluid was not leaving my head. I was 48 years old when diagnosed after having headaches and eventually passing out when ever I coughed, sneezed, gagged, or vomited. The shunt did relieve the pressure in my head but did not help with the pain when sneezing, coughing, etc. I had Chiari Decompression surgery in 2/2011 and that corrected the above problems noted. Chiari is hard to diagnose even with a MRI. After being told originally by a neurologist that my problem was a pinched nerve and later after I started passing out that it was not neurological I returned to my Family Physician and HE listened to me! He ordered another MRI and the radiologist diagnosed Chiari I malformation. I was then referred to another neurosurgeon that verified the Chiari and immediately inserted the VP shunt. The 8 shunt surgeries included the insertion, revisions, and 19 days in hospital with infection in my brain due to the tube in by abdomen becoming coiled and not allowing the fluid to flow. After all this and still having Chiari symptons, I decided to have the Chiari Decompression (9th surgery) and I am doing alot better. Just praying the shunt does not malfunction in any way. I recomment Dr. Daniel Barrow @ Emory Hospital in Atlanta, GA. I am not sure if he takes your insurance but it is worth a try to give him a call.

I have heard that physical therapy can do more harm than good if you have Chiari I malformation. My neurosurgeon recommended the same after I had 8 VP shunt surgeries. I declined and found a neurosurgeon at Emory Hospital in Atlanta, GA that felt I needed the Chiari Decompression surgery immediately. I had the surgery and it has relieved most of my lingering Chiari symptons. However, neither of my neurolgist in Augusta, GA or Atlanta, Ga have agreed that physical therapy could make it worse. But it makes sense to me since you brain is pushing through the base of your skull, any type of exercises and/or movement could make it worse prior to having the Chiari Decompression.