CC reply to bernie meyer

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Thanks Bernie for taking the time to reply to me. You're a real gem. God bless you.

I had 3 MRI scans and saw a neurologist. I have Chiari malformation Type 1. Protrusion of the cerebellar tonsils, approximately 2.5cms below the foramen magnum, at the level of the mid body of C2. . Is this significant, as your info. said 3-5mms? Bit of a difference. Some degenerative desiccation of the T9-10 and T10-11 discs with small marginal osteophytes and Schmorl's node formation at T11-12.

Disc height and hydration is relatively well preserved in the lumbar region. There is minimal bulging of the L4-5 disc, slightly more to the left of midline. There is no canal stenosis.

I also have Scoliosis and Schuermann's disease. My twin sister also has Scoliosis as does our brother 20 months older. My twin also has significant rotation of the spine. Our father has a discs in his neck protruding into his spinal chord and is currently considering surgery. He also has been informed an artery in his neck is clogged and is cutting off blood flow to his brain. Nothing can be done for this other than taking asprin each day in the hope to thin the blood in the hope of a better blood flow. He has serious serious neck pain as you could imagine and also suffers back pain at times.

Our mother and other brother seem to be pain free in this respect.

I am actually in the state of Queensland and all those doctors you recommended are in other states unfortunately. So, no, I have not seen any of those.

When you say that ACI's can be acquired by head trauma do you mean they are onset by the trauma of an accident or do you mean they can eventuate from a head trauma/accident? I was led to believe they were there from birth and generally speaking were dormant until a certain age or until the trauma of an accident brought the symptoms to light.

So for now I think I will forget I have been diagnosed with Chiari and wait for my next scan suggested for 2002 by my neurologist or perhaps wait for more symptoms.

Thank you so much for your reply.

Robyn

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Robyn,I forwarded your post to our contact person in Australia. She should be gettingin touch with you soon.An ACM can only be detected by MRI scanning and these scans must be reviewed byradiologists, neurologists and/or neurosurgeons who have a lot of experience indealing with ACM's.Our group members in Australia have recommended the following doctors:Dr Ian sConsultant Neurologist Sleep StudiesSydney Childrens HospitalHigh StreetRANDWICK NSW 2031 RANDWICK NSW 20310293821787recommended by: KimProfessor M. NeurophysicianProfessorial UnitPrince of Wales HospitalRandwick NSW 2131Dr. W. BlumNeurosurgeonThe Randwick CentreRandwick, NSW 2031(ph) 61.2.9399.5274Dr A ByeConsultant NeurologistSydney Childrens HospitalHigh StreetRANDWICK NSW 2031recommended by: KimDr. ChristieNeurosurgeon1/16 Telford Street,Newcastle, NSW(ph) 049.292005Dr. CookNeurosurgeonNorth Shore Medical Center66 Pacific Highway St. Leonards,(ph) 02.9437.4125Dr. GarrickNeurologistSt. s Clinic Road,Darlinghurst. N.S.W.(ph) 02.9332.6712recommended by: DebbyDr P SilbertNeurologist34 Churchill AvenueSUBIACO 6008WArecommended by: -AnnDr Brain SommervilleThe Westmead Neurological Centre20-28 Mons RoadWestmead 2145NSW AustraliaVoice 02 9633 4577Fax 02 9891 5714recommended by: MitchW A SteningConsultant NeurosugeonPrince of Wales PrivateLevel 7Barker StreetRANDWICK NSW 20310296504997recommended by: KimDr TengConsultant Neurologist Sleep StudiesSydney Childrens HospitalHigh StreetRANDWICK NSW 2031 RANDWICK NSW 20310293821787recommended by: KimDr Ian sConsultant Neurologist Sleep StudiesSydney Childrens HospitalHigh StreetRANDWICK NSW 2031 RANDWICK NSW 20310293821787recommended by: KimMr WongNeurologist7, 4 Ventnor AvenueWEST PERTH 6005WArecommended by: -AnnHave you seen any of these doctors??When you have another MRI scan, make sure they do it in dynamic (CINE) mode. Itis the normal MRI except they put a small clip on your finger and then specialsoftware is used to monitor the spinal fluid flow. The flow in some Chiariansis affected by the ACM. A good doctor would order this for any patient with anACM.ACM's can be inherited therefore your twin may have an ACM. ACM's can also beacquired from severe head trauma so with your head traumas it is very possiblethat you acquired yours and did not inherit it. Do your parents have anysymptoms???Your symptoms are typical of an ACM and your treatment by the medical communityand family is also unfortunately very typical. The latest theory on ACMsymptoms is that they are caused by crowding of the cerebellum in the posteriorfossa, the skull cavity holding the cerebellum and that the degree of cerebellarherniation is not necessarily a good indicator of symptoms. Make sure yourdoctors read the latest study on ACM by Dr. Milhorat et al. I would notgo to a doctor unless they have read this study. Verify this by phone beforeyour next visit. The abstract for the study is listed below:Neurosurgery 1999 May;44(5):1005-17Chiari I malformation redefined: clinical and radiographic findings for 364symptomatic patients.Milhorat TH, Chou MW, Trinidad EM, Kula RW, Mandell M, Wolpert C, Speer MCDepartment of Neurosurgery, State University of New York Health Science Centerat Brooklyn, The Long Island College Hospital, 11203-2098, USA.OBJECTIVE: Chiari malformations are regarded as a pathological continuum ofhindbrain maldevelopments characterized by downward herniation of the cerebellartonsils. The Chiari I malformation (CMI) is defined as tonsillar herniation ofat least 3 to 5 mm below the foramen magnum. Increased detection of CMI hasemphasized the need for more information regarding the clinical features of thedisorder. METHODS: We examined a prospective cohort of 364 symptomatic patients.All patients underwent magnetic resonance imaging of the head and spine, andsome were evaluated using CINE-magnetic resonance imaging and otherneurodiagnostic tests. For 50 patients and 50 age- and gender-matched controlsubjects, the volume of the posterior cranial fossa was calculated by theCavalieri method. The families of 21 patients participated in a study offamilial aggregation. RESULTS: There were 275 female and 89 male patients. Theage of onset was 24.9+/-15.8 years (mean +/- standard deviation), and 89patients (24%) cited trauma as the precipitating event. Common associatedproblems included syringomyelia (65%), scoliosis (42%), and basilar invagination(12%). Forty-three patients (12%) reported positive family histories of CMI orsyringomyelia. Pedigrees for 21 families showed patterns consistent withautosomal dominant or recessive inheritance. The clinical syndrome of CMI wasfound to consist of the following: 1) headaches, 2) pseudotumor-like episodes,3) a Meniere's disease-like syndrome, 4) lower cranial nerve signs, and 5)spinal cord disturbances in the absence of syringomyelia. The most consistentmagnetic resonance imaging findings were obliteration of the retrocerebellarcerebrospinal fluid spaces (364 patients), tonsillar herniation of at least 5 mm(332 patients), and varying degrees of cranial base dysplasia. Volumetriccalculations for the posterior cranial fossa revealed a significant reduction oftotal volume (mean, 13.4 ml) and a 40% reduction of cerebrospinal fluid volume(mean, 10.8 ml), with normal brain volume. CONCLUSION: These data supportaccumulating evidence that CMI is a disorder of the para-axial mesoderm that ischaracterized by underdevelopment of the posterior cranial fossa andovercrowding of the normally developed hindbrain. Tonsillar herniation of lessthan 5 mm does not exclude the diagnosis. Clinical manifestations of CMI seem tobe related to cerebrospinal fluid disturbances (which are responsible forheadaches, pseudotumor-like episodes, endolymphatic hydrops, syringomyelia, andhydrocephalus) and direct compression of nervous tissue. The demonstration offamilial aggregation suggests a genetic component of transmission.Peace from the USA,Bernie Meyer, diagnosed in '89, Not decompressedmarried 29 yrs, wife Judy, three kids, ages-23, 26, 28