Aa
Chiari Cognizant Dr's in NC? Frustrated and Exasperated
I am dealing with an undiagnosed illness and have been on an unpaid medical leave of absence since June 23, 2015. I applied for the UDN (Undiagnosed Diseases Network) Study at Duke University after going to 15+ Dr's from Neurologist's to Rheumatologist's to an Endrocrinilogist to ENT's to an Otologist, etc. Upon acquiring my 'official' medical records to send to Duke, I reviewed the MRI findings and impressions from my 08/12/2015 trip to the ER for stroke-like symptoms (39 yr old F), I believe something may have certainly been overlooked.
Under the findings section, it states:
There is a mild cerebellar tonsillar ectopia, measuring 5mm on the right. From what I understand.....this phrase is used interchangeably with Chiari Malformation. That night at the ER, I was told my diagnosis was Migraine Variant. I was also told that from the MRI, the Dr. was able to rule out stroke, aneurysm, tumor, and MS. I already had my first neurology appt set for the next day and the ER Dr said to just follow up with them. Upon reviewing the notes from that appt, the neurologist 'copy and pasted' the MRI results in her follow up notes yet stated MRI is unremarkable and sent me to a Myasthenia Gravis Specialist at Wake Forest Baptist Medical Center (that was not my diagnosis).
No one, whatsoever, has mentioned what is clearly the first sentence of the findings of the MRI, to me. I believe this may very well hold the key to my illness. I so desperately want to get well and am terrified as my latest symptoms are that I am losing my cognitive thought process and having difficulty with communication (can't find the words, stuttering, words in wrong order, etc). I am so very afraid that if this is not figured out soon that I may not be able to communicate effectively enough to explain what is happening to me.
I took this information to my new PCP on Monday and he stated, I'm not sure what this means as I am not a neurologist (I understand and respect that). He tried to call the neurologist that I saw the day after the ER to ask if she happened to overlook it and if it were significant. She REFUSED to speak with him (there is a bit of a story there but I will not go into unnecessary information about my opinion of this neurologist).
So here I sit. Hurry up and wait. The earliest new patient neurologist appt I can get is December 22, a month away. So very frustrated and so very worried that I may not be able to communicate by then and that what is happening to me may be irreversible.
My question comes in 2 parts - Could what the MRI states be driving my symptoms and are there knowledgeable Chiari specialist's in the North Carolina area, Greensboro, High Point, Winston Salem or even Charlotte or Raleigh/Durham that might could see me prior to Dec 22? The longer I sit here, the more ill I become, the longer before I can get well, and get back to work.
Symptoms:
Extreme Fatigue
Blurred Vision
Muscle Weakness/ Tremors/ Spasms
Migraines (1st on July 21, 2015 - 11 since)
Slurred Speech
Difficulty/ Inability to Walk
Trouble Maintaining Body Temp (oral thermometer reads normal)
Swiss Cheese Brain (cognitive thinking issues, short term memory loss, difficulty finding the right words)
Brain Feels Heavy (I know this sounds odd- it is NOT my head heavy on my neck- my brain actually feels heavy in my skull)
Feel Pulse Around Brain specifically (not associated with throbbing of headache or any headache pain)
Can Feel Brain Move In Skull
Abnormal Amounts of Mucus in Head
Sleep Difficulties
and on and on
All intermittent symptoms that occur individually or concurrently. Two constants are extreme fatigue and mucus in head.
Under the findings section, it states:
There is a mild cerebellar tonsillar ectopia, measuring 5mm on the right. From what I understand.....this phrase is used interchangeably with Chiari Malformation. That night at the ER, I was told my diagnosis was Migraine Variant. I was also told that from the MRI, the Dr. was able to rule out stroke, aneurysm, tumor, and MS. I already had my first neurology appt set for the next day and the ER Dr said to just follow up with them. Upon reviewing the notes from that appt, the neurologist 'copy and pasted' the MRI results in her follow up notes yet stated MRI is unremarkable and sent me to a Myasthenia Gravis Specialist at Wake Forest Baptist Medical Center (that was not my diagnosis).
No one, whatsoever, has mentioned what is clearly the first sentence of the findings of the MRI, to me. I believe this may very well hold the key to my illness. I so desperately want to get well and am terrified as my latest symptoms are that I am losing my cognitive thought process and having difficulty with communication (can't find the words, stuttering, words in wrong order, etc). I am so very afraid that if this is not figured out soon that I may not be able to communicate effectively enough to explain what is happening to me.
I took this information to my new PCP on Monday and he stated, I'm not sure what this means as I am not a neurologist (I understand and respect that). He tried to call the neurologist that I saw the day after the ER to ask if she happened to overlook it and if it were significant. She REFUSED to speak with him (there is a bit of a story there but I will not go into unnecessary information about my opinion of this neurologist).
So here I sit. Hurry up and wait. The earliest new patient neurologist appt I can get is December 22, a month away. So very frustrated and so very worried that I may not be able to communicate by then and that what is happening to me may be irreversible.
My question comes in 2 parts - Could what the MRI states be driving my symptoms and are there knowledgeable Chiari specialist's in the North Carolina area, Greensboro, High Point, Winston Salem or even Charlotte or Raleigh/Durham that might could see me prior to Dec 22? The longer I sit here, the more ill I become, the longer before I can get well, and get back to work.
Symptoms:
Extreme Fatigue
Blurred Vision
Muscle Weakness/ Tremors/ Spasms
Migraines (1st on July 21, 2015 - 11 since)
Slurred Speech
Difficulty/ Inability to Walk
Trouble Maintaining Body Temp (oral thermometer reads normal)
Swiss Cheese Brain (cognitive thinking issues, short term memory loss, difficulty finding the right words)
Brain Feels Heavy (I know this sounds odd- it is NOT my head heavy on my neck- my brain actually feels heavy in my skull)
Feel Pulse Around Brain specifically (not associated with throbbing of headache or any headache pain)
Can Feel Brain Move In Skull
Abnormal Amounts of Mucus in Head
Sleep Difficulties
and on and on
All intermittent symptoms that occur individually or concurrently. Two constants are extreme fatigue and mucus in head.
COMMUNITY LEADER
Hi Sorry I did not get back to you, hope you had a Happy Thanksgiving as well.....
Yes, your cousin having Chiari is something you will want to let Dr Rosner know......
Since your symptoms change with your positions, have them rule out POTS!
The biggest problem we face is uninformed Drs .....
Hang in there.
Thank you for your response.
I am still trying to get an "official' diagnosis. This showed on an MRI from 2006 as well. Again, no one has brought this to my attention at any time.
I do have a cousin with Chiari Malformation as well, I don't know if that plays in to this at all.
I was in a car accident when I was a teen.
I was at ER last night for "slurred", slow and stuttering speech. It was clearly positional. When I was laying flat, clear speech, no issues. When raised for examination, started back in less than a minute, on 3 different occasions. ER Dr. told me that I was stressed and my body was having a Pavlovian response and that I need psychiatric care.
He emphatically stated the MRI results would in no way cause the speech issues as that was in my occipital lobe no where near the speech production area of my brain.
I am beyond frustrated and exasperated.
As it is Thanksgiving, I just called and left a message for Dr. Rosner. I am thankful his office is only 180 miles from me.
Again, thank you for your response and have a happy day!
I am still trying to get an "official' diagnosis. This showed on an MRI from 2006 as well. Again, no one has brought this to my attention at any time.
I do have a cousin with Chiari Malformation as well, I don't know if that plays in to this at all.
I was in a car accident when I was a teen.
I was at ER last night for "slurred", slow and stuttering speech. It was clearly positional. When I was laying flat, clear speech, no issues. When raised for examination, started back in less than a minute, on 3 different occasions. ER Dr. told me that I was stressed and my body was having a Pavlovian response and that I need psychiatric care.
He emphatically stated the MRI results would in no way cause the speech issues as that was in my occipital lobe no where near the speech production area of my brain.
I am beyond frustrated and exasperated.
As it is Thanksgiving, I just called and left a message for Dr. Rosner. I am thankful his office is only 180 miles from me.
Again, thank you for your response and have a happy day!
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Yes, low lying tonsils and Chiari are used interchangeably, have the same symptoms and treated the same BUT they are not the same....Chiari is the malformation of the skull leaving the area the cerebellum sits too small and the cerebral tonsils are forced out and onto the spinal cord....low lying tonsils are due to blunt force trauma....and can retract back into position....but they do not always retract so the same surgery for Chiari may be done to help give more room to allow CSF to flow.... and hopefully reduce the symptoms....
May I ask, have you been in a MVA, suffered a fall or a hit to the head or neck area?
I know it feels like we are losing our cognitive function and it can get scary but I am not aware of anyone losing it completely they could not explain their condition/symptoms .....it may take longer then most....but this is why we suggest keeping a journal of everything we go thru.
As for Drs in your state -
NORTH CAROLINA
Dr. Fuchs
Duke University
Pediatrics
Dr. Eric Rhoton
Carolina Spine & Neurosurgery
7 Vanderbuilt Drive
Asheville, NC 28803
828-255-7776
Michael J. Rosner, MD, FACS, FCCM
Neurological Surgery
80 Doctors Drive, Suite 4,
Hendersonville, NC 28792-720
Primary: 828 684-1076
Hang in there you are not alone.
Have an Answer?
You are reading content posted in the Chiari Malformation Community
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
