Nervous

Hi! My name is michelle and to give my full story I’ll start at the beginning…last summer I had these stabbing headaches only on my right front forehead and behind my right eye…didn’t think anything of it…it lasted 2 weeks…then went away until December 13…I ended up in the er with the same headaches in the same exact spot only worse! They did a ct scan n it showed nothing…I kept going to my primary he gave me prednisone that did nothing…gave me imitrex 50mg that did nothing so finally he said I’d like u to see a neurologist…made an appointment for a month out…then the beginning of January I was still having the headaches everyday and I woke up one day and my nose was numb and my upper lip…called my primary and was told to go to the er so I did the physician assistant said she thought I had MS in my head I’m like what??? But then the dr came in and said no way is it MS…so he tells me to get my dr to scribe me an MRI and try to get in sooner with the neurologist…called my dr they got me in with the neurologist within 2 days where he also told me to get the MRI…went that night for the MRI called my primary the next day for results woman tells me there are no masses but my dr saw a malformation and she couldn’t give me any other info! I immediately got upset bc my sister also had chiari malformation type 1 and she needed surgery! So called my neurologist took him like 3 days to call me back he tells me I have chiari malformation type 1 but he didn’t seem all that concerned whatsoever…so he tells me to pick up my disk…I pick it up they give me my report and I read my malformation is at 8mm my sisters was 4mm and she needed surgery I’ve learned from the drs I work with (I work in a dermatology office) that it doesn’t always matter the size…but I saw 8mm and cried’ I was scheduled to see my neurologist again on feb 10 (in theean time he put me on imitrex 100mg and I think it’s called verapamil which have helped the headaches) so I bring my dusk in and he tells me my headaches are completely unrelated to my malformation he can’t explain my headaches or my face being numb! So of course I was upset I mean I’m glad he didn’t say I needed surgery but he didn’t tell me anything!

So into me being nervous…I live outside of philly and found a dr. O’rourke who is out of university of penn…says his area of interest is chairi malformations and he is a neurosurgeon…I want a second opinion plus my family was hounding me for a second opinion…I’m nervous what he’ll say I almost want him to say the same as my neurologist but I really need my headaches explained and my facial numbness :frowning: anyways thanks for reading my long story!!

Michelle, your NL sounds pretty typical with the response that Chiari doesn’t cause symptoms. A lot of us have learned to skip the NLs altogether unless we need them to prescribe meds. The NS is the one you want to concentrate on. Finding an NS who truely understands Chiari and the related diagnosis



Tethered cord

Dysautonomia

*Ehlers Danlos Syndrome/ Hypermobility Syndrome

*Cranio cervical instability

Sleep apnea





Will be the key to your best outcome - if you do decide to have surgery. Also, a lot if us have a vitamin D deficiency, so that might be a good thing to have checked soon. Second or third opinions are great, but please become an expert yourself on what you have going on so that you are a good judge of the NSs you see. Your noggin is precious and deserves a true specialist, so take the time resources you need to get the best care you can.



Glad you are here with us,



Jenn

Thanks so much for reading!! I went to the neurosurgeon today and I liked him wayyy better than the nl…he did say my headaches are not due to the malformation but he believes my facial numbness is directly related he wants me to see a nl thru their hospital and also have a MRI done of my cervical spine? He thinks there is some kind of pressure there causing my numbness and he did tell me if that’s the case I WILL need surgery bc that will only get worse over time…

I was so used to seeing my jerk nl that when I met the bs and his nurse practitioner it felt nice because they listened and didn’t blow me off in ( mins…I go Tuesday night for my MRI so I guess we’ll see!!



jcdemar said:

Michelle, your NL sounds pretty typical with the response that Chiari doesn’t cause symptoms. A lot of us have learned to skip the NLs altogether unless we need them to prescribe meds. The NS is the one you want to concentrate on. Finding an NS who truely understands Chiari and the related diagnosis


Tethered cord

Dysautonomia

*Ehlers Danlos Syndrome/ Hypermobility Syndrome

*Cranio cervical instability

Sleep apnea





Will be the key to your best outcome - if you do decide to have surgery. Also, a lot if us have a vitamin D deficiency, so that might be a good thing to have checked soon. Second or third opinions are great, but please become an expert yourself on what you have going on so that you are a good judge of the NSs you see. Your noggin is precious and deserves a true specialist, so take the time resources you need to get the best care you can.



Glad you are here with us,



Jenn

Michelle, so glad you had a good experience, what a difference it makes when someone listens! Does this NS not think your headache is because of the Chiari? Most chiarians have a headache it’s in the top three symptoms. Good to have a c-spine MRI too to rule out problems there, and a syrinx. Keep us up to date with how you are doing and what’s happening. How is your sister doing post op?

He says the headaches are not in the right spot but he’s not completely ruling it out it could be an a typical symptom…he days usually ppl get the headaches in the back of the head not the front like me!!

My sister isn’t doing to well…she had her surgery done at Abington hospital and if u ask anyone around here that was a bad idea! Do she’s now going to Jefferson which is an amazing hospital and she possibly needs another surgery :frowning:



jcdemar said:

Michelle, so glad you had a good experience, what a difference it makes when someone listens! Does this NS not think your headache is because of the Chiari? Most chiarians have a headache it’s in the top three symptoms. Good to have a c-spine MRI too to rule out problems there, and a syrinx. Keep us up to date with how you are doing and what’s happening. How is your sister doing post op?

I'm friends with a girl on another site who had surgery with Dr. O'Rourke a year ago and she had very good results! Best wishes to you!

It’s funny you mention someone on another board bc that’s exactly how I got dr o’rourkes name…I really didn’t know what to do or where to start looking for different drs…so I feel very lucky to have come across that post with that name! I do really like him, he was very kind and informative and gave me other recourses for my facial numbness instead of just telling me I don’t know why your face is numb!! I go for a cervical spine MRI next Tuesday then I see a neurologist that dr orourke referred on Thursday and hopefully I get more information!



Anglyn said:

I’m friends with a girl on another site who had surgery with Dr. O’Rourke a year ago and she had very good results! Best wishes to you!