I went and got a copy of all my labs and MRI reports today. When I was reading over the MRI report it says I have low lying cerebellar tonsils or Cerebellar ectopia. My neuro didn't even mention this to me! What does this mean? Should I be concerned about this? I looked it up on the internet and talked about something called Chiari? Does anyone know anything about this?
"Many persons with a Type I CM do not have symptoms and may not know they have the condition. Patients with other CM types may complain of neck pain, balance problems, muscle weakness, numbness or other abnormal feelings in the arms or legs, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, insomnia, depression, or headache made worse by coughing or straining. Hand coordination and fine motor skills may be affected. Symptoms may change for some patients, depending on the buildup of CSF and resulting pressure on the tissues and nerves. Adolescents and adults who have CM but no symptoms initially may, later in life, develop signs of the disorder. Infants may have symptoms from any type of CM and may have difficulty swallowing, irritability when being fed, excessive drooling, a weak cry, gagging or vomiting, arm weakness, a stiff neck, breathing problems, developmental delays, and an inability to gain weight."
I know I watched a Mystery Diagnosis about a girl with this and it took her forever to get diagnosed. She had really bad headaches. I would definitely ask your new doctor about it and if it means that you could have Chiari malformation.
this is the second time i've heard of someone with lyme developing this. the neuro may still be trying to piece it together as with the advent of MRI testing, the diagnosis of CM is becoming more common -- even among those w/o symptoms.
My neuro didn't mention this either. I found out about it 15 months after the MRI when I got my records. I have Chiari 1 malformation. I didn't have one on my first MRI when I got sick. I developed it during the six months time that I was the worst. My theory is that I had some swelling or inflammation in my brain. There is not much room for the brain to expand so the only place it can go is downward through the base of the skull, into the c spine area. I also developed a meningioma during this six month period as well. I don't have any proof to back up my theory but I really think this is what happened.
That is very interesting. I didn't have it on my first MRI either two years ago at the onset of symptoms. I think I've read that it can be caused from swelling in the brain. Your theory makes sense to me. And can't lyme cause swelling of the brain? Can they treat Chiari? Will it get worse? I don't think mine is bad now, but am concerned that it will get worse.
It is treatable with a major surgery. However, I was told that mine was not causing any of my symptoms and it was nothing to worry about. He said it is considered a "normal" finding in a certain percentage of the population. I think he said 20%. He said the Chiari 2 and 3 are the ones that need surgery. Since yours are just low-lying and not actually Chiari it is probably nothing to worry about but you could ask the doctor.
I have read otherwise regarding the symptoms. I read any degree can cause a myriad of symptoms.
Another interesting note, when I had a spinal tap (didn't know about the chiari at the time) he had a very difficult time getting spinal fluid as my spinal pressure was very low. With Chiari there is obstruction of CSF flow so I think this is why my pressure was so low. Again, just my theory regarding my own situation.
If you have a Chiari I malformation greater than 5mm it is very often considered for surgery. Even if you have a malformation less than that, and it is symptomatic, you can still be considered a candidate for surgery. I have a 7MM Chiari I Malformation. Have you visited/looked at the site for the Wisconsin Chiari Institute? It seems to offer some pretty good treatment.
Not sure if I have looked at that site or not but have looked at others. Chiari is some serious surgery. I would not have it done unless I was completely and totally incapacitated. The risks are just too high. I was told by more than 1 neuro that it was an incidental finding and that it was not the cause of my problems. My tonsils were 5mm when last checked in 2006 or 2007.
I am seeking documented proof of the link between Lyme and it's co-infections and Chiari being triggered by them. I have found several people who have experienced this, too. It IS triggered by infections and I did NOT have CM symptoms prior to the Lyme!
I want to present this to two neurologists.
Can anyone help me? If so, please email me any info you may have! Thanks!
The thread above is nearly 4 years old, so for more attention to your inquiry, you may want to start a new thread and re-post your message there. Also, the system here blocks email addresses, as you can see in your message (***@****), so responses are either here in public or through private messages on this website, directed at specific people.
As an aside, be aware that neurologists are generally not big fans of Lyme as a serious ailment, so you might want to find a Lyme specialist who would pay attention.
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