I know this is probably a topic that has been covered, but as I am on my phone, it’s hard to go through all of the posts. Here’s a small background. I was diagnosed with Chiari on February 28th of this year after they took a CT scan when I got a concussion. Before that, I had headaches for years (migraines, stress related, etc) plus a plethora of other issues that I’ve chalked up to stress or allergies or just the fact that I’ seem to be that 1 in a xxx person. Ever since the concussion, it seems that symptoms are popping up all over the place and the ones that I had pre-concussion have magnified a great deal. I guess that it’s a little concerning that I can fill out a patient questionnaire and send it in only to realize that something new has cropped up. Maybe I am just more aware of what’s going on. Either way, though, it’s a lot scary 
I have found my symptoms are a bit worse since I found out but I don't know if that is because I am more tuned in to them or what. I think a lot of things I used to brush off as just being quirky I now realize are symptoms so I'm more focused on them. Things are harder to ignore now that you know the implications!
Hi...
You mentioned that symptoms are popping up since your concussion...I have heard of folks who have had an injury and then worsening of symptoms..so sorry you are having to go through all this.
Have you seen a NS yet? Are you having surgery???
Good luck and please keep us posted.
Lori
Anglyn - That is one of my thoughts as well, maybe I am just focusing more on what is wrong so I can ultimately give whoever needs to hear it an all-encompassing view of what I am going thru.
Lori - Thanks. I haven't seen a NS yet. Ever since the diagnosis (only a month ago although it seems like it's been way longer than that), it feels like everything is hurry up and wait. Upon reading the CT scan report, my PCP immediately referred me to a NL (who I didn't like). He ordered MRIs of my brain and neck. I got the MRIs done this past Wednesday and on Thursday, I immediately mailed a copy of it off to Dr. Heffez at the Wisconsin Chiari Center. The nice guy at the post office said my package should arrive today at WCC. So again, it's hurry up and wait. I do have a PCP appt on the 6th and go back the the nerdy NL on the 10th as well.
Hi...
So glad you got the MRI of brain and neck ...you are on top of things it appears!!! Already sent them to WCC..you go girl~~~
Keep us posted!
I feel for ya. The hurry up and wait is frustrating. I am getting tired of the game to so made apt at mayo in MN, but still have apt on 9th april with NL and 9th of may with NS who sent me to the NL who i don't like. It does seem we pay more attention to everything now that we know what is going on even though the dr's don't seem to care.
Good luck with everything
Lori - All the stuff I've read, people I've talked to, plus the fact that I am a single mom of 4 who can't seem to do much for her kids anymore (oh and the fact that my mom won't accept anything less than what a specialist says) has pushed me to keep on top of EVERYTHING now. I have my "handy dandy notebook" in which my appts, current medications and current symptoms are. I'm doing the best I can to be on top of it. Just really hating the wait time ...
Christine - Thanks. It is definitely frustrating. My NL is a nerd, so already knew by about minute #2 in his office that I would need to find someone else. For once in my life, it seems that moving to Milwaukee paid off for me ;-) My PCP is totally on top of things, however, so that makes me feel good.
Trauma can definitely bring on or worsen existing symptoms. My pain and other symptoms started after I was rearended on 7/3/07. My pain/symptoms got even worse after I was rearended again on 5/12/10. Yep…I was rearended for a 2nd time! Seriously?! I have deteriorated significantly in the last year or so. I’ve heard of other people who had a slower progression of symptoms. Everybody is different. I think your Concussion contributed to your rapid progression of symptoms. I’m glad to hear that you’ve had MRI’s and already forward them to a Chiari specialist. You are definitely on top of things…good for you…that’s awesome! Please keep us posted.
Crystal
Crystal - So sorry about your being rear-ended ... and then to have the accidents exacerbate your symptoms is horrible. But I'm glad (in an off-handed sort of way) to know that I may not just be imagining things. Sometimes I feel like I over worry, but then I remember that this is pretty serious and most definitely something that I should be worrying about. I am so used to pushing things to the side so I can deal with the kids and do for them. At least, this is making me start to slow down a little and I am definitely trying to find ways to listen to my body more. Thank you for the encouragement. I never would have thought to forward them to anyone and been lost had I not started up in groups like this one and had I not started researching the snot out of Chiari. As an IT professional, it turns out that Google can be one's best and worst friend at the same time :-P
I will be sure to keep you guys posted.
My symptoms got significantly worse this past year. I was lifting heavy weights over my head and my work requires me to lift heavy patients. I went from a fit 47 year old who exercised every day, to a person that got home from work just to lie on an ice pack and sob. I also have spinal stenosis which has made symptoms worse. Luckily, my children are grown and out of the house. I feel for you younger people who are raising children. My NS is Dr. Heffez. He is very kind. I had a decompression and laminoplasyy almost 3 weeks ago. Recovery has been slower than I expected. I like instant gratification. Anyway, I hope you get into see Dr. H. soon. I feel very fortunate to have found the Chiari Institute so close to home as well.
sorry if i missed it, but how did you get the concussion?
I fell last year and got a closed concussion. I also developed post concussion syndrome. Read everything you can about POST CONCUSSION SYNDROME......You will find it has very similiar symptoms to CM. I have had massive headaches and I loose my train of thought & words..... but the headaches are the worse....I hope you feel better soon !!!
Tracy Z.
Bill - I was at work trying to fix up the computer and stood up directly underneath one of the overhead cabinets. Usually, they are protected by a desk, but someone was trying to rearrange their office and moved the desk.
Tracy Z - I learn something new every day! Thank you for the information. I will start checking it out and see what I can figure out.
It might ease your mind to read my story. I had a recent diagnosis and symptoms increased fast and dramatically. Why this happened I don’t know if it always was going to or once you know you stop resisting so hard telling yourself to suck it up and actually tune more into how sick you really are…
YOU PAY MORE ATTENTION TO URSLF WEN U FIND OUT OF A CONDITION U HAVE...I FEEL THE SAME...ERY LIL PAIN IS NOW 10 TIMES MAGNIFYIN JUS BCUZ I KN0 I HAVE CHIARI..IT SUCKS...BUT U HAVE A CHOICE TO MAKE..EITHER SURGERY OR MEDS. DID U SEE AN NS? WAT WAS SED IF U DID? HOPE ALL GOES WELL FOR U
Hi Jae,
I definitely have been paying more attention ... but I think that it's more because my body is yelling at me at this point, both with symptoms that I had before diagnosis (and magnified post-concussion) and those that have cropped up since the concussion. I go through my day sitting at about a 5-6 (and that's on a good day). And I have been researching a lot ... probably too much at this point. But that's the way I am (the IT professional in me won't allow anything less than that). I actually came across something very interesting last night, which of course put me in tears as anything does these days. I also have a condition called hidradenitis supprativa which basically means that I get big huge abscesses in crappy places (on the insides of my thighs, armpits, butt crack and breasts) and that this has been linked to Chiari. It seems that everytime I do research on this, I come out with more questions than I went in with :(
I haven't seen a NS yet as my diagnosis is still pretty recent (02/28/2012) but have had my MRIs taken and the follow up for those are on the 6th (with PCP) and the 10th (with NL). A NS is next on my list ... Just haven't made it that far yet :(
jae said:
YOU PAY MORE ATTENTION TO URSLF WEN U FIND OUT OF A CONDITION U HAVE...I FEEL THE SAME...ERY LIL PAIN IS NOW 10 TIMES MAGNIFYIN JUS BCUZ I KN0 I HAVE CHIARI..IT SUCKS...BUT U HAVE A CHOICE TO MAKE..EITHER SURGERY OR MEDS. DID U SEE AN NS? WAT WAS SED IF U DID? HOPE ALL GOES WELL FOR U