Hi everyone. I was diagnosed with Chiari 1 malformation 10 mm June of 2012 while hospitalized for another health problem. Have bad headaches and neck pain off and on. My neck always feels very tight and hard to hold up at times. Gets very stiff sitting up. Have had numbness and tingling in in my left arm and hand and in my face. I also so feel like I have a sensitivity to heat. My cheeks get flushed and I feel hot and then I feel this heat and prickly pins and needles feeling in my head. It comes and goes. I have difficulty walking at times which comes and goes and have weakness in my legs. They feel very heavy and hard to left legs to walk up the stairs. My balance is off a lot and I feel like I walk to the left a lot of the time. I am clumsy and fall at times. My legs give out sometimes and don't feel like they are under me. I also have difficutly swallowing and have to clear my throat a lot and have a chronic cough at times. I was hospitalized June 2012 with Grand Mal Seizures (never had seizures before) and was treated for Limbic Encephalitis. I was recovering from the encephalitis slowly but my symptoms came back in February of this year. The symptoms are the same as I listed above with no seizures at all. I also have memory, word retrieval problems, concentration problems and cant think clearly at times. I saw my neurologist 3 weeks ago and he did another MRI which came back with the Chairi diagnoses Everything else was normal. I also had 48 hour ambulatory EEG which came back normal. My neurologist said he thinks I might be having symptoms of encephalitis but no treatment is needed. He has not discussed the possibility of my symptoms being from the Chiari but I have concerns about this. I feel as if it is possible that the symptoms could be from Chiari so I want to get an opinion from a Chiari specialist. I only had regular MRI's with and without contrast and was wondering if this type of MRI would show up any problems with CSF flow or would I need a CINE MRI to show this problem. I would appreciate and response from people. Thanks. Does anyone have any experience with Dr. Carl Heilman, Neurosurgeon from Boston?
You would need a CINE MRI to show CSF flow. Your symptoms all sound like they could be chiari related. Not saying they couldn't be caused by encephalitis but the doctor really should do more tests to determine where the issues lie.
Hi..
There was a member here ..a long time agao ..that had great results with Dr. Heilman,,,she recovered wonderfully ! I also remember that she said he had a great bed side manner....sorry , I cannot think of the members name...if it comes to me I will surely let you know.
Anglyn said:
You would need a CINE MRI to show CSF flow. Your symptoms all sound like they could be chiari related. Not saying they couldn't be caused by encephalitis but the doctor really should do more tests to determine where the issues lie.
Thanks for responding. I will be talking with my neurologist next week. I have sent my records over to the Neurosurgeon Dr. Heilman today and hopefully I can get more answers.
mrob62 said:
Anglyn said:You would need a CINE MRI to show CSF flow. Your symptoms all sound like they could be chiari related. Not saying they couldn't be caused by encephalitis but the doctor really should do more tests to determine where the issues lie.
I was treated for the limbic encephalitis last summer when I was hospitalized. My neurologist says that he thinks I have symptoms again but this can happen as you recover. I want to rule out that my symptoms aren't from Chairi. It's complicated.
Beeba said:
Agree with anglyn. Does someone with encephalitis not need treatment? That sounds strange.
Do you think the next step should be to have the CINE MRI. Especially if the regular MRI can't show CSF flow. I don't want to overlook a potential problem. My neurologist never considered Chairi as a possible cause of my symptoms. I had to request my records be sent to a neurosurgeon for consultation. I think my neurologist is focusing on the encephalitis as the cause of the symptoms even though I just had an EEG which came back normal. It's tough when my symptoms can fall into either diagnosis. I will feel better when I get some more answers. Thanks.
mrob62 said:
Thanks for responding. I will be talking with my neurologist next week. I have sent my records over to the Neurosurgeon Dr. Heilman today and hopefully I can get more answers.
mrob62 said:
Anglyn said:You would need a CINE MRI to show CSF flow. Your symptoms all sound like they could be chiari related. Not saying they couldn't be caused by encephalitis but the doctor really should do more tests to determine where the issues lie.
Thanks. I appreciate your response.