As of this moment I am not diagnosed however, I had an MRI of my brain in November '15 that showed cerebellar ectopia and if I am understanding correctly that is what happens with Chiari. The protrusion(?) is 6mm.
I am scheduled with a Neurosurgeon in January but to be honest today I am very discouraged about going. I called today to see if there are any other tests I should have my pcp order, I told them about the MRI and the response was that my Dr. rarely treats this condition and rarely will do the surgery, I'm not really wanting to have surgery but I sure do need some relief they recommended that I see a Neurologist.
I had an MRI in 2002 that showed the same protrusion but was never told, I have suffered from frequent headaches for a very long time and was put on Migraine meds that sometimes help and sometimes don't, The numbness I have felt in my hands and feet is irritating but not really life altering, At this moment and for the last month I have had an unrelenting headache. I have other issues but right now this is my primary complaint.
I'm thinking maybe I am just going to wait and see what happens.
Hello, I would recommend seeing a few neurosurgeons before you make your decision. Neurologists really can’t provide much help outside of providing medications for migraines and possibly for other nerve Pains. Getting a list of 3 neurosurgeons who deal with Chiari patients and who have done the decompression surgeries is really a good way to start. They will usually order you a cervical spine MRI to check for a syrinx, which is a fluid filled sac in your spine that can cause some of the numbness. They also will usually order a CINE flow MRI to check your spinal fluid as well. Once those tests are done your neurosurgeon can give you a better idea of whether he thinks surgery would be indicated now or not. I wish you the best with your appts and pray you get some headache relief. I use a water pillow called a Mediflow pillow- bought on Amazon, which has helped reduced my headaches, if that helps.
I'm sorry to jump in here, but I must. IF you have a NS that orders a Cine Flow MRI or does it in the "office", RUN and RUN fast ESPECIALLY if he is a "Chiari Specialist" A cineflow is at BEST 60% accurate and 100% dependent on when the slices are taken. If you happen to be holding breath or the slice is take while exhaling, you will have different results than not. The only practical use for Cine is Cine is to measure absolute coronary arterial flow in the left anterior descending artery.
Outside of a private practice, cine is not used for much. To the "Chiari Specialist its like a "dirt meter" to a door to door vacuum salesman - totally meaningless bet a great sales tool.
The doctor who " rarely treats this condition and rarely will do the surgery" is a good one. Almost every chiari is found accidentaly while looking for something else. It is very common.
I sympathise with your headaches, and hope you will find some treatment that works. There are many advances, and many options available that weren't even around 2 years ago. BUT there are no silver bullets, not yet anyway, and Chiari surgery is not one of them excep under some pretty strict guideline. Even then, while the prospect of permanent damage to nerves and Brainstem regulated activities may be stopped. The pain may continue and OFTEN be worse because of the scar tissue.
A syrinx is a different matter. It should be treated
This Dr has seen my husband before and refused to do surgery for him due to the risk of paralyzing him. He is a throat cancer survivor and has a great deal of scar tissue and a lack of blood supply to his neck due to large amounts of radiation. He has 2 bulging discs and they cause him great pain. I do believe he will not do anything that is not in my best interest.
It is so easy to get discouraged when I hear so many patients are ignored or disbelieved. I'm good at advocating for my loved ones but not so much for myself.
Thank you for your input it was encouraging.
Having a doc you trust and connect with is three fourths of the battle. Hang in there, you are actually doing a great job for your self. Docs LOVE educated patients when they use their knowledge to base discussion and questions. It gives them some freedom to share their thoughts. Suddenly what they are doing makes sense when it didn't before. Try and beat them over the head with a Dr. Google education, and it has far less effect.