As I read the extreme stories of so many others, I'm starting to feel silly. Yes, my images show a chiari, and a condition called "platybasia" (flattening of the base of the skull) and that my C1 is fused to my skull. Yes, I have horrible headaches sometimes that pain meds can't touch. Yes, I have a variety of other symptoms that can be attributed to these conditions. Yes, my symptoms had been coming more frequently and with more intensity and I no longer have zero symptoms.
BUT, I haven't had a headache in over two weeks (for those of you who believe in the power of prayer: ever since I revealed to others what was going on and asked for prayer, my headaches stopped). And all of my other symptoms are totally tolerable (other than the dizziness I had a couple days ago, but it was Sunday afternoon and I didn't have to be anywhere or doing anything). Then again, I've also cut my activity level down to eliminate most of the opportunities to antagonize my conditions.
I'm starting to feel silly, like I'm overreacting. I've been pursuing finding a neurosurgeon to see me and advise me, but I'm hoping this community can address whether it sounds like I'm just at the tip of "getting worse" or if I'm overreacting and should wait this out longer (it didn't occur to me to track my symptoms, etc, until January of this year). I don't have what I consider "extreme" symptoms, other than the headaches a couple times per month for up to 3 days, but sometimes only for one day. And like I said, I haven't had one of those in over 2 weeks. When I feel the pain creeping up my neck, like I might get a headache, I take 2 ibuprofen ... and that's worked for these past 2+ weeks!
What say you, Chiarians?? Am I overreacting?
P.S. No one in my life is telling me I'm overreacting. It's just a feeling I have (maybe an effect of denial??). I didn't want anyone to think I need to be defended from outside sources ... I have great support.
Chiari wise I didn't feel bad pre surgical. My neck was hurting and I thought I had been working too hard and had headaches that I had had my whole life & I almost became a quadripledgic.
CM is unlike any other illness. I have never seen two cases alike. I would recommend you follow up with a NS. Please do not let anyone's stories make you feel like yours isn't as serious.
Hi! I'm brand new to this site and so glad to read your post. I too am at the, what I consider early stages of being symptomatic. I have pain daily, can't remember the last time I got a good night's sleep, always feel tired and sometimes achy everywhere and have many other little things going on that I can't be sure if they are chiari related or just a side effect of getting older and not being in the best shape! And like you, reading the stories of what other's have gone through, I tell myself, "Wow. Your situation is nothing compared to these people!"
But the reason I decided to join this group is because someday, I might be where they are and I know having people who understand and can answer questions will be a big help. I don't know anyone else with this and whenever I explain it, I just get confused, blank stares. I'm also not one to broadcast my personal details with everyone I know so really, not many people even know about it anyway. I'm a stay at home mom so I already don't get out and see too many people on a regular basis. So I thought having people to "talk" to about this would help me understand it and deal with it. I am hoping that I do find others who are at the point that I am because, like you, I really don't know how aggressive I should be with this all right now. I don't think I'm close to needing surgery, but I also think, based on how things are progressing, I will be there one day. I'm hoping not anytime soon!
Anyway, like others have said, every case is different, every person is different and I think the best course of action is to do what you are comfortable with (and your doctor of course!). I have also started keeping a file of my doctor visits and test results and will be adding a journal to my notebook as well. Someday, all of these little daily annoyances will be important in figuring out where I am and what my next step will be. Seeing a neurosurgeon even though you may not need surgery just yet will also help in giving your doctors a point for comparison if and when symptoms progress. I guess it's like your baseline Chiari point. I saw mine last summer and will be following up "as needed" and he will also be able to help me manage new symptoms as they come up, even if we're still not talking about surgery yet. So I personally, don't think you're overreacting. The more information you have and can share with your doctor, the better off you'll be now and in the long run.
And thank you for letting ME know that I'm not the only one feeling this way too! Hopefully we can continue feeling silly for a long time! (I don't know about you, but the though of having this surgery scares the bajeebies outta' me!!!)