Chiari I Malformation? vs Sarcoidosis?

[lisa]

I am a 39 y.o. female who was diagnosed with fibromyalgia in 1988 and Sarcoidosis in 1989. I have struggled with symptoms from both of these for the past 12 years, and been able to work full-time as a nurse. Since 5/00 I have had constant pressure in my head, and "cough" headaches per a neurologist. I am also starting to have sleep apnea, I frequently "hear" electrical impulses go up the back of my neck into my head, and have severe exertional h/a and pressure with Postural orthostatic tachycardia and HR 180 ( per cardiologist) with attempted exertion. I also seem to be losing coordination in my hands and occ. start to lose my balance. If I try to read the newspaper, my arms fatigue extremely easily, and they start to tremor. My concentration has also been affected and I have been off on disability since 8/28/00.I have severe fatigue problems, and feel best lying down. I do not feel safe trying to take care of other patients when I am feeling this bad.
       I have had an extensive workup with 4 MRI's and the problems found are: non-functioning pituitary adenoma, 1 cm pineal cyst, mild (5mm)Chiari 1 malformation with "normal" csf
flow per radiologist, and the last test done was an MRA to r/o venous sinus thrombosis (no results yet). I have seen a neurosurgeon in Columbus, OH who thinks the chiari is not "bad enough" to cause these symptoms, and he suggests another neurologist opinion. If the MRA comes back normal, I feel that I need to get another opinion form a Neurosurgeon on the Chiari. I am just a nurse, but it appears to me that my cerebellum is packed very tightly in my skull, and I didn't see anything but skull behind it on the MRI films. What are some of the criteria used to determine if Chiari's need surgery? Are there any experts on Chiari at the CLeveland Clinic? I feel I need to get a second opinion as the neurosurgeon I saw is not an expert in Chiari's, and he told me that. The sarcoidosis has not shown evidence on the MRI's either. I am on disability and single, and gradually getting worse instead of better. I have a lot at stake here, as I may lose my career and home if I can't get better and back to work. I feel like I need to explore all my options. Sorry so long, and thanks for your opinion.
                                  Lisa

[CCF Neuro[P] MD, RPS]

Dear Lisa:

Sorry to hear about your problems.  I am not sure what to tell you.  Chiari malformations, usually are not major problems and are only incidental findings.  However, we do know that there are some that can cause headaches and if severe can lead to headaches and sleep apnea and at times syringomyelia in the cervical cord.  As you do not describe these types of symptoms, I am not sure if your symptoms are related to a Chiari malformation or a product of your fibromyalgia.  Let say your having Chiari induced sleep apnea that is related to your symptoms, in the best case scenerio 50% get relied, 25% show no change and 25% actually get worse.  But, a second opinion is always a good idea in that you get a fresh opinion not only about the problem but also your general neurological health.

Sorry, I probably did not give you a more concrete answer.

Sincerely,

CCF Neuro MD

[nancee]

Lisa,

Could I possibly have your email address so that I could write you about your chiari/postural tachacardia?  I have the same conditions.

Thanks,

***@****

[Anneliese...regarding Chiari Diagnoses?]

Hi Lisa, Nancy and CCF.....I have a real hardtime with doctors not having all the info on Chiari Malformation...it took me three years to get my officially diagnosed...but, my surgery was done to late..I ended up with spinal cord damage from waiting to long to be decompressed.  Their is a support group for patients/parents of children with this condition who are just as frustrated as me.  The majority feel that we have to jump through hoops to get treatment.  Recently read an article put out by the director of Nation Orgination For Rare Disease...It described patients with these conditions as carnaries for the medical commuinty because we are over looked because we don't have a more common of a disease or disorder.  

I know recently maybe two years ago they had the ASAP Conference at CCF...with all the top researchers discussing treatment/diagnoses for patients with ACM/Syringomyelia.  Alot of patients are going to these conferences acting has their own health advocate to get the best treatment.  I feel my own HMO prior to my current HMO failed me.  But, I try to move on even thou I will have to learn to deal with my disabilities.  I just hope that all this treatment of patients like myself is educating the medical commuinty about ACM/Syringomyelia...which do have serious ...real symptoms that leave permanent damage if not treated early...because I and other patients like myself will tell you differently..because we are the ones living with this condition.

Sincerely, Anneliese

[KP]

Hi there I had a cat scan a year and a half ago which came back saying i might have charri .. i need to have an mri to confirm this but i can't as i have surgical clips in my head from surgery when i was younger .. I was wondering if there was anyplace i could find information on this as i am quite lost .. my syptoms (symptoms) are .. dizzyness loss of balance wierd facial feelings that would be hard to exsplain arm tingling left arm mostly ..
visual probs although this appears to be some how related to the dizzyness...

does this sound typical of such a thing ? or should i be looking into other areas?

Thanx for any info
KP