arnold chiari

[nancy]

I have arnold chiari I and syringomyleia.  I have been diagnosed with charcot joints.  According to some doctors, the bones in my shoulder and elbow have begun to destroyed by the charcot joint problems and paralysis has set in.

What is my next option?  Do I operate or can I operate to get my shoulder back or do I sit and wait until paralysis sets in?

[CCF Neuro[P] MD, RPS]

Dear Nancy:

Sorry that your having these problems.  I don't know the details of the progression of your problem as this disorder is often slowly progressive, long periods of stabilization, as well as acute excerbations, may occur.  Surgery is usually not indicated for when symptoms are minimal or very severe, if symptoms persist longer than 5 years, or if the cord is of normal size on MRI.  Surgery may be idicated in the presence of mild deficits of short duration, enlargement of the cord on MRI, and predominant symptoms of pain and spasticity.  Surgery is usually indicated in progressive cases.  However, you should know that only approximately 1/3 improve, less than 1/2 stabilize and approximately 1/4 deteriorate.  Usually the pain and paraparesis show the best responses.  Sensory loss, lower motor neuron signs, and brainstem findings are the symptoms least likely to improve.  Success is less likely in the presence of arachnoiditis.  Given these facts, I would suggest that you sit down with your neurologist and then neurosurgeon and try and fit your particular problem into the equation.  Knowing the outcomes going into the surgery often helps make a wise decision.  I hope that you find relief of your problem.

Sincerely,

CCF Neuro MD

[darcie]

I am sorry to TRY and post here......but I have been trying for over a year now.  I stayed up tonight till 2 AM PST but still can't post, so out of desperation I am trying here.  Please forgive me.....

Doctor,
I am having a difficult time getting a clear diagnosis.  I have seen 4 Neurosurgeons and have conflicting info from all of them.  Why can't my doctors agree on a diagnosis?  Some diagnosis I have had over the years have been: possible MS, early MG, Chiari, MD, RA and fibromyalgia.  

I finally did my own research and found that my symptoms seem to point to a Chiari Malformation.  I have most of the symptoms from the "Chiari Symptom List"on WACMA.  (World Arnold Chiari Malformation Association at www.pressenter.com)

NSG 1 said....I had chiari and then changed his mind, he said he couldn't help me
NSG 2 said....I had borderline Chiari
NSG 3 said....7-8mm herniation and then just to level of foramen magnum, then changed again and said 5 mm, is now reviewing my CINE flow study
NSG 4 said...5 mm definite chiari but all my symptoms are not clinical chiari
So I still have no relief and no clear diagnosis.  I have already flown from Central California to Southern California and then to Chicago...quite expensive..please, please, please help me...

My MRI's show evidence of the following:
* Tonsillar ectopia of 5 mm
* Stenotic cerebral aqueduct with no CSF flow in this region
* Underdeveloped or no cisterna magna
* C4-5 fusion (not surgical nor congenital)
* C4-5 fusion of the facets and spinous processes on the right with some
resulting localized levoscoliosis)
* Spondolytic changes C5-6 and C6-7
* Intensity changes in cord
* Scoliosis
* Increased signal intensity within periventricular and central white matter
* Straightening of lumbar lordosis and suggestion of a mild right lumbar curve
* Mild disc space narrowing L4-5 and L5-S1
* Cojoined nerve root sleeve on the left at S1 and S2

I had an SSEP and EMG last week, he said I had delayed responses consistent with a diabetic..I am not a diabetic, so what is the meaning of this delayed response?

Neurological exams have shown:
Increased DTR in Bilateral extremities, more active in lower extremities
Absent superficial abdominal reflexes
No visualized spontaneous venous pulsations noted in optic fundi
Tandem Romberg slightly unsteady

Here are my symptoms, the list is long so please bear with me:
Neck pain and spasm
Pain in left ear
Hearing loss in left ear getting worse
Headaches
Pain in bump on top of head (severe at times)
Pressure/swelling in eyes (mostly left)
Pressure in head
Loss of balance (especially when I move my head)
Blurring vision (primarily left eye)
See “stars” when turning my head in certain directions
Head shakes
Buzzing sensations in body (I call them "bodyquakes")
Body twitching
Fasciculations? all over body (wakes up my husband, he says my legs are vibrating)
Cognitive difficulties (can no longer drive)
Easy fatiguing of muscles
Feel like I am toxic, flulike, general ill feeling
Palpitations? Then I get SOB, pain and tightness
Feels like arms and legs are waking up from being asleep, hurts to move them
Pain in legs, arms and buttocks (mostly)
Severe upper arm pain with limited ROM
Heaviness of limbs (feels like I'm wearing heavy boots up to my thighs)
Legs feel "tight" at times
Numbess of legs and arms
Frequent choking on liquids
Difficulty swallowing some foods
Tongue weakness when chewing
Frequent hoarseness
Episodes of waking from sleep due to gagging
Frequent waking during sleep
Hand tremors
Diarrhea
Daily low grade fevers (99.3 to 100)
Goozebumps, in patches all over body
Nausea
Swollen, painful right middle finger (since may 2000)
Numb L toe
Toes go numb when walking
Episodes of High Blood Pressure (highest was 190/120)


However, even with the evidence of my MRI, I am told that all my symptoms may not be related to Chiari? I am very confused, as the literature I have read, (many medical Abstracts and then some) lead me to believe that my symptoms are most likely Chiari related.  If not then what is it?

If I wasn't so sick, I definitely would not be pursuing this. I really do have other interests in life:) I, like everyone, want to lead a healthy, painfree life.

Why do I have the anatomy consistent with Chiari, and then am told my
symptoms don't go along with it. The literature says otherwise.  Why do my doctors have differing diagnosis'?
Sorry this is so long!
I am very confused,
Thank you for your reply,
Darcie

[Anneliese...regarding Chiari Diagnoses?]

Darci,  Sorry, You are also having problems...I too have ACM..decompressed 5/99 only after switching my hmo.  My docs brushed me off for three years..finally someone listened ...my csf flowstudy when done correctly showed almost 90 percent occulsion at the forman magnum...but, unfortuantly having problems again...I think the surgery is not a hundred percent cure..so, neuro docs feel it is better to leave it alone.  But, my neurosurgeon feels that not doing surgery at the onset of symptoms only leaves permanent damage.   Has any of the docs you visited were on the WACMA list?  I live hear in CA...but, my nsg...if he sees normal flow..he will not do the surgery....even thou you display clinical findings...don't ask me why...because I think this might be a big mistake because it means more damage that could have been prevented.  

Everytime I read about someone like myself with this condition and not having it taken serious...it drives me crazy.  I see others going through what I did..feel the medical commuinty is making no effort to learn more about it...and how to best help us!

Hope you get some answers soon!!

Anneliese

[Darcie to Renee]

Can you please email me?  I would like to talk to you more about chiari.  I started a support group for californians with chiari.  I think we have about 15 members so far.  The group was started in Sept 2000 to better meet the needs of local folks with problems such as ours.  We are at http://www.egroups.com/group/CaliforniaChiarians
So many other illnesses seem to mimic chiari.  I think there are many, many, many people who are being misdiagnosed.  Or email me at ***@****
hope to hear from you
Darcie

[katie572]

A related discussion, Arnold CHIARI was started.