I found out in October that I had CM 1 by my GP and was sent to see a neurosurgeon. The surgeon I saw spent less than 10 minutes with me and basically told me to see a neurologist about my headaches and if they didn't stop in the next 4 months I should come back to talk about the surgery. Since then I have been told by my neurologist I just get tension headaches and I do not have enough neurological symptoms for my headaches to be chiari related. I have been in physical therapy for the last 3 weeks and have been prescribed some medication that is not helping. I am still getting headaches every day lasting for more than 5 hours. Besides my headaches my symptoms include: light and sound sensitivity, ringing in my ears, and tingling in my feet.
Should I go find another neurosurgeon to talk to about surgery or do I need to spend more time in physical therapy and trying to play around with medication?
See another doctor! Stay Positive...DC from Chicago
Find a good Chiari specialist. There is no cure for us, so it makes a tough job for any doctor... even the ones who specialize in our condition. I had horrendous headaches that lasted up to a month straight until I tried Midrin. It is a vase-constrictor and sometimes used for Migraine or seizure. It is expensive. I also have tried Fioricet (butal) which seems to work ok for short periods but it is far cheaper...
Laura, I’m sorry you got this diagnosis, but glad you found this group of friends- you are not alone. My advice…get hooked up with a Chiari specialized surgeon. This does not mean you have to have the surgery, but seeing a true specialist will get you answers plain ol NSs can’t give you, and it gives you options for now or later. There are very few NSs who are Chiari specialists, if you are able to travel it will open up more options for you.
Also, please please be aware that there are other afflictions that can come along with Chiari, and can affect the success of a decompression surgery. Not all chiarians have these, but many of us do, and it’s good to be aware and able to recognize the symptoms.
Elhers Danlos Syndrome is a collagen elastin problem that can cause lax ligaments, subsequently causing instabilities in the neck and cranio cervical joints- symptoms can mimic Chiari symptoms. Dysautonomia is also common, it’s a “deregulation” of the automatic nervous system that can cause symptoms of high heart rate, low BP, anxiety, and many others. I hope this didn’t overwhelm you
Jenn