I hope that your Neurosurgeon helps you if you have Chiari. I have been diagnosed with Chiari 0 and cerebella tonsillar ectoptia but my Neurosurgeon doesn’t think that it is causing a problem with CSF flow even though the Radiologist said it was blocking the foramen major. I would be interested to know how you get on.
Now I have constant pain in my head, neck and left shoulder which stops after a while when I first lie down at night but I am woken sometime between 2-6 hours later by excruciating pain in my head and a feeling as though my life is at risk which makes me sit up for the rest of the night.
I am seeing a Neurologist this week and wonder whether anyone can help me ask the right questions. I believe that my autonomic nervous system may be tested and I know it’s not functioning properly because of the problems I have such as fast heart rate, insomnia, breathing problems, etc.
I haven’t been diagnosed with EDS yet because I am not hypemobile although other family members do have hypermobility. I’ve read Dr Diana’s book but am not sure whether to quote parts to the Neurologist because I don’t want to appear to be telling them how to do their job. At the same time, Dr Diana’s book has made me realise that I have so many of the symptoms she describes. Any ideas how to get an accurate diagnosis and making the Neurologist aware of EDS without them thinking you’ve just been self-diagnosing from the internet?
Best wishes and good luck