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What would you do if this were you?
I'm not sure what kind of recourse there is for me... I have been to my family doctor, ENT, neurologist, neurosurgeon, and cardiologist. They all disagree... I have been given a general consultation by my family doctor, Vitamin D supplements, and ENT consultation and hearing test, a neurological consultation, a brain MRI, a neurosurgical consultation, a echocardiogram, an EKG, a cardiological consultation, and now they want me to take a cardiac/chest MRI. Did I mention that the noise and 'shaking' of the MRI machine causes my body GREAT pain and discomfort? All this for unexplained dizziness...
The neurologist found a 'spot' in the brain MRI which is considered to be located near my cochlea, but no one can say for sure what the 'spot' is (suggestions included a spot on the MRI machine, an inflamed blood vessel, etc)... The neurosurgeon while looking at my 'spot' found a 4mm Cerebellar Tonsil Protrusion from the Foramen Magnum, but stated that since I had no 'symptoms' then there was no concerns. I spent the last month and a half 'hacking up my lungs from a sore throat/cold that would not get better... I went to my family doctor for some developing issue of neck / shoulder & arm / hip & leg pain / and lower back of the head headaches. My family doctor stated that there is nothing neurologically wrong and that it is musculoskeletal... I ask my family doctor about Chiari Malformation and she said no, etc, etc, etc... and then drew me a diagram of the Cerebellar Tonsil Protrusion from the Foramen Magnum stating that if these extended to far that one could die...
What do I do? After 5 months of this, I am at a loss... Do I look for a Chiari specialist or do I just keep doing this?
The neurologist found a 'spot' in the brain MRI which is considered to be located near my cochlea, but no one can say for sure what the 'spot' is (suggestions included a spot on the MRI machine, an inflamed blood vessel, etc)... The neurosurgeon while looking at my 'spot' found a 4mm Cerebellar Tonsil Protrusion from the Foramen Magnum, but stated that since I had no 'symptoms' then there was no concerns. I spent the last month and a half 'hacking up my lungs from a sore throat/cold that would not get better... I went to my family doctor for some developing issue of neck / shoulder & arm / hip & leg pain / and lower back of the head headaches. My family doctor stated that there is nothing neurologically wrong and that it is musculoskeletal... I ask my family doctor about Chiari Malformation and she said no, etc, etc, etc... and then drew me a diagram of the Cerebellar Tonsil Protrusion from the Foramen Magnum stating that if these extended to far that one could die...
What do I do? After 5 months of this, I am at a loss... Do I look for a Chiari specialist or do I just keep doing this?
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
As Pam said yes...find a true chiari specialist....for starters, too many drs only look at the size of the herniation which is not the main concern...they will only consider chiari to be chiari if the herniation is 5mm or larger when in fact a smaller herniation can cause more issues if the shape is causing a CSF obstruction and overcrowding.
Ask about a CINE MRI and a full spine MRI to rule out a syrinx and tethered cord....there r other related conditions u should also be checked for such as sleep apnea, DDD, bulging disks, intra cranial hypertension,Ehlers-Danlos.
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483
"selma"
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Yes you absolutely have go to a CM specialist. If you dont the run around is going to continue. The majority of doctors will not admit that CM can even cause symptoms. I am not sure about the sore throat and cough. The rest of the symptoms sound as though they could be related to CM. There is a list here in the forum of docs other members have used and liked. You should gather your records and scans make an appt with one. Most of us have been thru exactly what you are going thru right now. I know it is stressful, frustrating, and just plain sad. The fact is most of us share some of the same symptoms and a CM specialist is going to recognize those symptoms. A CM specialist is usually a NS that devotes his practice to this condition. Not a NS that occasionally sees CM patients.
I hope this helps. Keep us posted.
Pam