So I had an appointment with my PCP today and she ordered an MRI. They are also going to start looking at Neurosergeons. I also got a copy of my last MRI which said " There are low-lying cerebellar tonsils measuring 7mm, consistent with Chairi 1 malformation. There is no abnormal signal at the cervical-medullary junction". So I think I understand the first part but can anybody shed light on the last part? Does this mean I have nothing to worry about? She actually only printed out the addendum, so I am not sure what this first part said. This MRI was done in Feb. 2010.
Jaime, I’m sorry you have this diagnosis, but glad you now have a direction and know what you are dealing with. I’m also glad your doctor seems to be taking this seriously and is looking for an NS. I want to encourage you to do your own searching too. Lots if NS perform the decompression surgery, but there some who are better than others, and some who are best. Please research about the different kinds of surgery and become familiar with the other diagnosis that commonly come along with Chiari.
There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.
Vitamin d deficiency
Magnesium deficiency
Ehlers Danlos syndrome- can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required.
Dysautonomia
Tethered cord syndrome
Sleep apnea
Different surgeries: For me, there is a difference between the experience of 10 yearly or several weekly. Does this NS perform:
**a duraplasty -why or why not?
A laminectomy
A tonsillectomy -why or why not?
**Plate placement to back of skull- why or why not?
These are all performed or not performed based on the preference of each NS. For example, If an NS does not do the duraplasty because his patients have a high incidence of CSF leaks when he does…move on to to another NS!
Jenn
Thank you both for the info it is very helpful! I am actually feeling a bit relieved that I have made a decision to start the journey to getting this resolved…if that makes since. I am nervous but feel like I am working toward a resolution.
Yes, Jamie, that makes total sence. I’m glad for you 