Aa
Chiari?
Here is my story.... does this sound like chiari to anyone else that has had it? I just discovered chiari today on line and I am ecstatic to have discovered something that seems to fit my symptoms...
I am a 38 year old female living in the Pacific Northwest. In December 2007, I woke up with an eruption of shingles on my right side - from my rib cage to the middle of my back. I immediately went to the Dr. and was given a dose of Acyclovir and the condition resolved. Beginnning in February 2008 (after two weeks of stress), I had some lightheaded episodes and gradually became aware of a frequent urination problem. During the course of the next 6 weeks, I had an ultrasound and saw a kidney specialist to determine the cause of my urination problems. All tests were normal. In April 2008, my symptoms progressed to a full blown neurological nightmare. I had problems with dizziness, speaking, walking and writing. I was hospitalized for a week. I had an MRI with and w/o contrast and an MRA of my head. With the exception of a slightly enlarged pituitary, they were fine. All blood work was normal. A battery of tests for pituitary hormones was conducted and were normal. A spinal tap revealed normal pressure, an elevated protein of 47 and no olligoclonal bands.
The strangest part is that while in the hospital, I discovered that if the bed were at approximately a 30 degree angle, the neurological symptoms would resolve completely. If however, I moved out of this position, even slightly, all of the symptoms would immediately return. After a few days of experimenting with this, I discovered it had to do with my spinal alignment. I felt like a circus trick. One moment completely incapacitated and the next able to speak clearly as long as I didn't move. After much testing, the physicians scratched their heads and told me I had conversion reaction from the stress of my father dying 7 years ago. My father had lung cancer that metastisized to his brain. He had problems with speech in the last month of his life. I loved my father very much, but a group of doctors that have known me for a week telling me that my illness is psychosomatic from a seven year stressor is a stretch.
Here it is 3 months later, and my symptoms are persisting in much the same manner. I have continued to seek medical treatment and have resorted to a holistic chiropractor and a physician that specializes in diagnosing strange things. My symptoms seem to round robin. In the mornings, I have a buzzing feeling in my head when I wake up. I am not sleeping well - generally 3 hours at a stretch. I am exhausted. Some days I can't speak - I stutter and my tongue feels too large for my mouth. Some days, I have to pee 30 times. Consistently, I have had lightheadedness and headaches behind my left eye - to the point that I have had to stop operating a vehicle. Since I was hospitalized, I have had a GTT that was normal and a Field Vision Test that was normal. Additional blood work for heavy metals - all negative. The only deficiency so far has been for Vitamin D and a high IgG for Zoster. My Doctor assures me I don't have MS, diabetes or any auto immune disease. My Doctor thinks that the shingles did neurological damage to my spine and that it will take a while to resolve.
This past weekend, I was not able to speak on Friday and Saturday. On Saturday evening, I tried to duplicate my hospital stay and put a small ball under the left side of my neck. Within 30 seconds, my head cleared and I was able to speak fluently. I can find no information on the internet of anyone with a positional neurological problems. I feel as though I am going crazy. Sometimes shifting my weight from right to left foot will affect my vision and speech. Has anyone ever experienced anything like this? I am having a cervical MRI on Monday.... hopefully this will reveal something...
I am a 38 year old female living in the Pacific Northwest. In December 2007, I woke up with an eruption of shingles on my right side - from my rib cage to the middle of my back. I immediately went to the Dr. and was given a dose of Acyclovir and the condition resolved. Beginnning in February 2008 (after two weeks of stress), I had some lightheaded episodes and gradually became aware of a frequent urination problem. During the course of the next 6 weeks, I had an ultrasound and saw a kidney specialist to determine the cause of my urination problems. All tests were normal. In April 2008, my symptoms progressed to a full blown neurological nightmare. I had problems with dizziness, speaking, walking and writing. I was hospitalized for a week. I had an MRI with and w/o contrast and an MRA of my head. With the exception of a slightly enlarged pituitary, they were fine. All blood work was normal. A battery of tests for pituitary hormones was conducted and were normal. A spinal tap revealed normal pressure, an elevated protein of 47 and no olligoclonal bands.
The strangest part is that while in the hospital, I discovered that if the bed were at approximately a 30 degree angle, the neurological symptoms would resolve completely. If however, I moved out of this position, even slightly, all of the symptoms would immediately return. After a few days of experimenting with this, I discovered it had to do with my spinal alignment. I felt like a circus trick. One moment completely incapacitated and the next able to speak clearly as long as I didn't move. After much testing, the physicians scratched their heads and told me I had conversion reaction from the stress of my father dying 7 years ago. My father had lung cancer that metastisized to his brain. He had problems with speech in the last month of his life. I loved my father very much, but a group of doctors that have known me for a week telling me that my illness is psychosomatic from a seven year stressor is a stretch.
Here it is 3 months later, and my symptoms are persisting in much the same manner. I have continued to seek medical treatment and have resorted to a holistic chiropractor and a physician that specializes in diagnosing strange things. My symptoms seem to round robin. In the mornings, I have a buzzing feeling in my head when I wake up. I am not sleeping well - generally 3 hours at a stretch. I am exhausted. Some days I can't speak - I stutter and my tongue feels too large for my mouth. Some days, I have to pee 30 times. Consistently, I have had lightheadedness and headaches behind my left eye - to the point that I have had to stop operating a vehicle. Since I was hospitalized, I have had a GTT that was normal and a Field Vision Test that was normal. Additional blood work for heavy metals - all negative. The only deficiency so far has been for Vitamin D and a high IgG for Zoster. My Doctor assures me I don't have MS, diabetes or any auto immune disease. My Doctor thinks that the shingles did neurological damage to my spine and that it will take a while to resolve.
This past weekend, I was not able to speak on Friday and Saturday. On Saturday evening, I tried to duplicate my hospital stay and put a small ball under the left side of my neck. Within 30 seconds, my head cleared and I was able to speak fluently. I can find no information on the internet of anyone with a positional neurological problems. I feel as though I am going crazy. Sometimes shifting my weight from right to left foot will affect my vision and speech. Has anyone ever experienced anything like this? I am having a cervical MRI on Monday.... hopefully this will reveal something...
We invite all with Chiari to the Chiari forum here on MedHelp : )
http://www.medhelp.org/forums/Chiari-Malformation/show/257?controller=forums&action=show&id=257&camp=msc
I was fortunate that the radiologist reading my first MRI had done his internship at North Shore Hospital in Long Island - The hospital where The Chiari Institute (Chiari and related disorder specialists) do their surgical procedures. Over the years I found that about 98% of doctors have never even heard of Chiari. If you can't find a dx your comfortable with, I would suggest seeing a specialist even just to rule Chiari out.
Also, my own dx came following 2 years of SEVERE neck pain that was entirely relieved when I lay down flat. Just being upright was incredibly painful. Tonsils blocking CSF flow made perfect sense in regard to this positional phenomina.
Also, my own dx came following 2 years of SEVERE neck pain that was entirely relieved when I lay down flat. Just being upright was incredibly painful. Tonsils blocking CSF flow made perfect sense in regard to this positional phenomina.
I forgot to mention earlier that if you have Chiari Chiropractors are not a good idea at all! They can make matters worse!
Ok, first just b/c they said all was clear doesn't necessarily mean that it was. It needs to be reviewed by a NL. A lot of times if they are not specifically looking for something they will say it's clear. I have CM and my NL said there was no way my CM should have all clear yet that's what it said b/c the order said to look for something else. It depends on the person that reads it as to whether they only go by what they were specifically asked to look for, may not have know what they were looking at.
Get a second and third opinion! Keep a Journal of your symptoms everyday to take with you and a list of questions also! If you can't self refer to a neurologist get another dr to refer you and take a copy of the MRI CD with you and the report! They will give you a copy wherever you had it done! Good Luck!
Get a second and third opinion! Keep a Journal of your symptoms everyday to take with you and a list of questions also! If you can't self refer to a neurologist get another dr to refer you and take a copy of the MRI CD with you and the report! They will give you a copy wherever you had it done! Good Luck!
Have an Answer?
You are reading content posted in the Neurology Community
Top Neurology Answerers
Allentown, PA
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
