Hi All!
I gave in and asked my internist to refer me to a NL. Now I'm trying really hard to get rid of my pre-surgery prejudice so I can be nice to them.
Since my second Chiari surgery (10/21/13) I have been having nasty (8 out of 10) but short (45 minutes to 2 hours) headaches. They hurt at the base of my skull, back of my head and behind my eyes and can show up on one side or both sides. They are triggered by contact to the back of my head, looking down, riding in a bumpy car and sleeping on a pillow (darn!). But the real grind is that they happen 2-5 times a DAY.
I'm questioning if its occipital neuralgia, but besides that I have no other ideas about what is going on. These headaches are in a similar area to pressure headaches, but they feel and are triggered differently. I thought they were healing pains at first, so I feel a little behind on this process. If you read this and think, "That is JUST like me!" please let me know : )
Instead of referring me to the Neurology department, I have been referred to the Headache Clinic. It is associated with the Pain Management Clinic, but apparently still run by Neurologists. I don't know what to think of this. I just think that my sketchy past with Neurologists has made me worried that I have been shunted off to "Neurology Lite." We'll see what happens.
If I can figure out these headaches I think I can finally start to feel "normal" again. What would that be like?
Beeba,
I admit that I wanted exactly the tests that you want for me in the beginning of these new headaches, then I got complacent and let go of the idea. Everyone around me felt like "finally I was ok again" and I really wanted to think that too. Logically, though I think that you are right and I should ask for the tests.
I'm waiting to get the call to schedule my appointment with the NL. I also have a check-up the NS who did my second surgery (Heffez) on 3/12.
Do you think I should ask both of them for the flexion/extension MRI and spiral CT and hope that one will say yes? Or I guess I could try to get my NS to order those tests and my NL look for less structural issues.
I have technically had a flexion/extension MRI before (8/13) but when I got the cd back only half of the results were there - just the part where I bent backwards, which is not the action where I have problems. Of course, my last flat post-op MRI (12/13) looked good.
I really need to figure out how to play the system to make this work out for me.
PS. I completely fail the Brighton test. I have lots of joint problems (ankle, knee, hip, spine, shoulder, wrists) but am not hypermobile enough to qualify for EDS.
Good advice, and good discussion really. It's good for us newbies to see our frustrating journey is sadly typical. As with all of us, I hope you are able to get what you need Donna.
Oops - I did a PRONE flexion/extension MRI (or part of it...), not an UPRIGHT one. Big difference!
Beeba - if you post those images you mentioned in your first comment I would appreciate it! Also, I assume my symptoms remind you of yours, or you wouldn't have commented, but can I ask you what your symptoms were pre-fusion? My research hasn't really helped me find out about that.
Unwritten - Thanks for your support!
UPDATE!
The NL (who actually listened to me and did NOT prescribe pills - that's a first) thinks that I have occipital neuralgia, in at least in the third occipital nerve if not in both the third and greater occipital nerves. I have an occipital block to officially diagnose it on Monday, March 3rd.
Meanwhile, I found out that my NS wants me to get a lumbar puncture to check my ICP. I'm willing to hunt down all of the possibilities and get them tested, but, man, I am not happy about getting a spinal tap. I have never had one before, and I have bulging discs in the bottom three discs of my lumbar spine, along with a lot of localized muscle tension/pain.
What are your experiences with lumbar punctures? Especially post-op.