The unknown is such a scarey thing to me right now. I was at the ER for a CT Scan after banging my head and was told I had a concussion. The next day the ER doctor called to say that they saw something else on the CT Scan that he neglected to discuss with me. He explained to me what Chiari I Malformation was, that I probably have it, may be having a problem with the flow of the spinal fluid in my spine and brain and I should follow up with a neurosurgeon. That was almost a month ago. I have a headache all of the time, I'm dizzy, nauseous and I feel like I'm on a spinning ride all of the time. I have had these symptoms prior this, my second concussion, and have been clumsy, falling down, walking into things, dropping stuff and looking at my hand in amazement that it just lets go of things some times. I have my appointment with a neuroglogist finally on Wednesday, May 2nd. I'm so very scared of going and hearing what he might say. I haven't told my husband much about Chiari, just pretty much what the ER doctor said. In 2006 a different neurologist made me take six weeks off from work for testing because she thought I might have MS. After all of the testing, I was told that my symptoms were due to degenerative disc disease and some cognative developmental problems. I guess she didn't know about Chiari. Any way, that was such a scarey, stressful time that I don't want my husband to worry before I go and see what the neuro says. It's just so hard to feel this way all of the time. I hope I can get some answers next week and try to get a plan together to help myself understand what is happening. Thank you all for being here, sharing your thoughts, experience and encouragement. It has helped me so much to see that there are alot of you who are like me. I look foward to getting to know you and also learn how to cope with this.
I do hope that you dont have Chiari. Its not a fun thing. If you do there are great doctors to help. It sounds like you have had headaches and problems for awhile now. My daughter has migraines but has no Chiari, at least yet. She got a bad concussion in a soccer game and has not recovered yet. She was put in the hospital for several days, her school work is suffering and she has not been one day without a headache since the consussion. Reason that I am telling you all of this is that for the last two months I have done a lot of research and spoken to many people about migraines and concussions. If you already have migraines, getting over a concussin can take a year. Like you, she is dizzy and very nauseous. Her head ALWAYS hurts and has become very clumsy. Google migraines and concussions and read up on it then ask your dr about it. My daugher has been going to a NL, but one lady that I spoke to about migraines and concussions told me to get her to a headache specialist. Kind of thought thats what I had her at. We are now waiting for an apt at Baylors headache dept.
Best of luck to you! I also very sincerely hope what you are experiencing is not Chiari, I wouldn't wish this on anyone (well...maybe the ex husband...) and it's definitely no picnic. My Chiari was diagnosed via CT by an ER doctor. He referred me to the NL I see now, who, after the MRI, has referred me to the NS I am meeting with Friday. As for talking to the hubs, I'd encourage you to share what you're experiencing with him. While my parents, brother, in-laws, and friends have been great sources of support, the hubs has been my rock through this journey, and I don't know what I'd do without him. And then, there's this site. I can't tell you how much help all these wonderful people have been.
Thanks so much for your well wishes, support and encouragement. I will try to talk to him about Chiari. I have been talking to him alot about how I'm feeling, just not too much about the illness itself. Pounding headache again today, so hard to get myself up and going, but I really need to try. I'm a court liason and provide information to the judge and other parties in court. Basically I need to be alert while I talk and provide information to the various parties involved. Hard to do the past few weeks. Today will be an office day for me if no one calls out, so I can just stay at my desk and try to get my work done. I'm at about 60% of my productivity right now. Anyway, I'll keep in touch. I have my apppointment with a NS on Wednesday next week. Hopefully he'll be able to give me some answers or direction. Best wishes to you as well for a good day today.
so sorry that you are having a painful morning to put it mildly right those head aches are pure hell
my key borad is goofed up so there will be no punctuation sorry
i am both shocked and impressed by the er doc who called you about the chiari finding and you too queen vic had the same experience i had a hard enough time trying to kind a doctor who could even prounce chiari correctly ha ha
i was so happy to read in your last post that you have an appt this friday with a neurosurgeon may i suggest a couple of things
can you bring someone along with you to the appt a friend or family memeeber 2 sets of ears is always better than one in my opinion
bring a detailed list of your symptoms when they 1st started occurring and how often you get the symptom daily x2 weekly ect
also do you have a copy of the mri if so bring that as well the surgeon will most likely order a new mri
if the surgeon only orders a brain mri ask about a full spine mri i say this because some people with chiari also have a syrinx which is a fluid filled cyst on the spinal cord
i hope i didn't come across as a know it all or bossy by telling you what to bring and ask at your appt
i mentioned these things becasue i have been through it and just want to share any tid bit of info i have
i am far from a know it all so how i wish i knew more everyday it seems i learn more from the gang here on our site
Glad to hear you have an appointment. I was writing (and agreeing with Lori) to tell you to please take another person with you to your appointment if you can. These type of appointments can be so overwhelming. My husband always remembered way more that was said during the appointment than I ever did. He would also have questions for the surgeon that never would have crossed my mind..or that we had discussed prior to the appt that I couldn't remember to ask. Make a list of question too...very helpful! Concussions stink and do take quite awhile to recover from....I pray it's not Chiari, but if it is you are in the right place here!
Thanks for all of your advice...and no, I don't think you are pushy at all. I'm getting all of that info together over the weekend...my appt with the neuro isn't until Wednesday. Head ache a little better today, but balance not so much. Feels like my body wants to go towards the left while I'm walking straight or trying to at least! Also very dizzy upon turning my head/body or bending down. I'm just resting and trying to relax and looking forward to getting some answers finally next week. Hope today was a good one for you:)
lori said:
hi
so sorry that you are having a painful morning to put it mildly right those head aches are pure hell
my key borad is goofed up so there will be no punctuation sorry
i am both shocked and impressed by the er doc who called you about the chiari finding and you too queen vic had the same experience i had a hard enough time trying to kind a doctor who could even prounce chiari correctly ha ha
i was so happy to read in your last post that you have an appt this friday with a neurosurgeon may i suggest a couple of things
can you bring someone along with you to the appt a friend or family memeeber 2 sets of ears is always better than one in my opinion
bring a detailed list of your symptoms when they 1st started occurring and how often you get the symptom daily x2 weekly ect
also do you have a copy of the mri if so bring that as well the surgeon will most likely order a new mri
if the surgeon only orders a brain mri ask about a full spine mri i say this because some people with chiari also have a syrinx which is a fluid filled cyst on the spinal cord
i hope i didn't come across as a know it all or bossy by telling you what to bring and ask at your appt
i mentioned these things becasue i have been through it and just want to share any tid bit of info i have
i am far from a know it all so how i wish i knew more everyday it seems i learn more from the gang here on our site