Guest guest Posted February 8, 1999 Report Share Posted February 8, 1999 >After i got the diagnosis from Dr. Milhorat i called and talked with this >neurologist and told him that i was diagnosed with Chiari type 1 and he said >he knew that i had that, but that he didn't think it would account for my >symptoms!!! I was a bit upset about that, but it turns out that he really >only knew the old textbook symptoms and since i wasn't having them, he didn't >think Chiari could be the cause. I am very curious about the old textbook symptoms...what are they exactly? Judy Marie ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 1999 Report Share Posted February 8, 1999 In a message dated 2/8/99 6:03:04 PM Eastern Standard Time, ronny@... writes: << He said it's very obvious >condition and they never leave it off MRI reports if it's there. I've heard of cases where they have failed to notice it or (perhaps worse?) seen it and didn't bother to mention it on the report. >> I never knew that i had ACM until just last year when i went and got my MRI's and looked at them myself and then sent them to Dr. Milhorat in NY. When i went and got a set of the films that were done in 1992 the Chiari malformation was circled in red grease pencil!!!! But the doctor had made no mention of low lying tonsils. Then i looked at the 1996 and 1997 films and the herniation was even larger, the written report did state low lying tonsils which may possibly be under pressure, or some such thing. But my neuro told me that it would not apply to my condition at all. (he was seeing me for possible ms). After i got the diagnosis from Dr. Milhorat i called and talked with this neurologist and told him that i was diagnosed with Chiari type 1 and he said he knew that i had that, but that he didn't think it would account for my symptoms!!! I was a bit upset about that, but it turns out that he really only knew the old textbook symptoms and since i wasn't having them, he didn't think Chiari could be the cause. After discussing this with him he asked me to please let him know how things turned out cause he really was interested. Anyway, just goes to show you that it can be on the films and not in the report, or can be in the report and the doc doesn't tell you about it because he thinks it is irrelevant to your case. ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 1999 Report Share Posted February 8, 1999 Hello everyone, I hope you are all doing well and had a good weekend. I thought I'd give you an update. I saw my doctor today and he said he can no longer help me. He said the MRI report would have said ACM if it was there even though he didn't specifically ask about it. He said it's very obvious condition and they never leave it off MRI reports if it's there. I told him that the fluid/pressure in my left ear was still there after a month and he said that was amazing because there was absolutely nothing wrong with my ear. The whole appointment was such a waste of time and I could see him thinking " mental case " I'm so frustrated!!!! He's going to send a little letter off to my family doctor and I'm sure it's going to be one my insurance company would love to get their hands on. I'm going to get on the phone and call some of the doctors offices that you have all so kindly recommended to me. I think I can only take one more " you're fine " or it's all in your head appointment. Actually I don't know if I can even handle one more. I think the next one he'll be right in saying I'm nuts because I'm quickly heading that way. Well, off to make some phone calls. Take care, Farrow ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 1999 Report Share Posted February 8, 1999 In a message dated 2/8/99 6:49:26 PM Eastern Standard Time, mrmick@... writes: << He said it's very obvious > >condition and they never leave it off MRI reports if it's there. >> Pharoah, Just another example of never say never. I had my first mri ever in 1990 and three or four after that, they all missed it and mine is 68 mm. Always check your records and request copies of everything. Good luck Molly ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 1999 Report Share Posted February 8, 1999 In a message dated 2/8/99 7:00:38 PM Eastern Standard Time, kitten@... writes: << I am very curious about the old textbook symptoms...what are they exactly? Judy Marie >> I believe he stated downward gaze nystagmus, headache - especially cough headache, and loss of sensation in neck and shoulders. (course the latter symptoms to me sounds more like sm) ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 1999 Report Share Posted February 8, 1999 At 01:47 PM 2/8/1999 -0500, pharoah wrote: > He said the MRI report would have said ACM if it was there >even though he didn't specifically ask about it. He said it's very obvious >condition and they never leave it off MRI reports if it's there. I've heard of cases where they have failed to notice it or (perhaps worse?) seen it and didn't bother to mention it on the report. I have no reason to doubt your doctor specifically, but you need to get copies of the results just in case. Not just the report - make sure you get the actual pics. ronny World ACM Association http://www.pressenter.com/~wacma ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 1999 Report Share Posted February 8, 1999 I have been recently diagnosed with ACM. My neuro showed me the ACM on an MRI I had in 1996. No one noticed it back then. At that time I was paralyzed.(Briefly thank goodness) I just had another MRI in January and no one noticed it then either. I was having all sorts of symptoms. Gait ataxia, slurred speech, dizziness, muscle weakness, vision problems, muscle shocks and the list goes on. I went to see my neuro ( a different one) , he found it on the MRI film while I was waiting in his office. He said quite matter-of-factly, " You do have a congenital anomaly. " So definitely docs can miss it. I've had three MRIs in the last nine years and no one caught it til now. I'm going to get as many opinions as I need until I find someone who will listen and who understands chiari. Good luck Pharoah! God Bless you,Leanne Re: Back to square one >At 01:47 PM 2/8/1999 -0500, pharoah wrote: >> He said the MRI report would have said ACM if it was there >>even though he didn't specifically ask about it. He said it's very obvious >>condition and they never leave it off MRI reports if it's there. > >I've heard of cases where they have failed to notice it or (perhaps worse?) >seen it and didn't bother to mention it on the report. I have no reason to >doubt your doctor specifically, but you need to get copies of the results >just in case. Not just the report - make sure you get the actual pics. > > >ronny >World ACM Association http://www.pressenter.com/~wacma > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 1999 Report Share Posted February 8, 1999 > At 01:47 PM 2/8/1999 -0500, pharoah wrote: > > He said the MRI report would have said ACM if it was there > >even though he didn't specifically ask about it. He said it's very obvious > >condition and they never leave it off MRI reports if it's there. When I had my first MRI done, the radiologist that read it AND the neurosurgeon that I went to did not see the Chiari. It was only when I went for a second opinion that the new nsg saw the Chiari. And he said that it was quite large. So--------if you are not sure of the doctor's diagnosis, get your films and have someone else look at them. M. ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 1999 Report Share Posted February 8, 1999 Hi Kathleen, I'm new to this list. I've been on the Letstalk since last week when I found out about my condition. I have actually been having symptoms since 1990. I have been hearing MS since then, but no evidence from tests. I have had times of 'remission' where I feel so good- except for the dizziness. That's always been there. Just not as bad sometimes. I also had vision problems. But at least now I know what I'm dealing with. I just wish more was known about this disease. Maybe I'll go on a international campaign to get our cause known!!! Anyone want to join me? Hope you're O.K.!! What are your symptoms and your condition now? Look forward to hearing from you. Where are you located? I'm in Canada. Do you know of any docs up here familiar with ACM? Talk soon!! Take Care and God Bless, Leanne Re: Re: Back to square one >Hi Leanne, > >I am glad that you continued to look for help. It always amazes me the >people that have been misdiagnosed for years. I was very lucky and was >diagnosed right away. > >Kathleen > > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 1999 Report Share Posted February 8, 1999 In a message dated 2/8/99 8:58:20 PM Eastern Standard Time, clearlycockers@... writes: << So -- he is so far out in left field here that we may need to pipe oxygen to him! Phoenix, AZ >> Hey I bet left feild is awfully crowded with doc's who need LOTS (just stressing, not shouting) oxygen:) ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 1999 Report Share Posted February 8, 1999 Farrow wrote: >He >said the MRI report would have said ACM if it was there even though he >didn't specifically ask about it. He said it's very obvious condition and >they never leave it off MRI reports if it's there. Tell him that is a big load of BUNK!!!!! I had an MRI done at St. Joe's in Phoenix -- this is where Barrow's Neurological is located and NOTHING I repeat NOTHING was said about it. This was three full years before it was finally diagnosed and at the time of that MRI the herniation was 11mm. So -- he is so far out in left field here that we may need to pipe oxygen to him! Phoenix, AZ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
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