Backstory: A sinus CT had inadvertently found a Chiari 1 herniation of 6mm back around January/February. My primary doc referred me to NS. The NS ordered a brain MRI to get a better picture. I had that done May 5th and finally saw NS again yesterday to get the results.
The results...NO Chiari!! He said it the herniation was only about 2mm and not enough to be classified as Chari. I asked him about all the symptoms I'm having that are textbook Chiari. I am in pain every single day. I'm taking the maximum dose of Tylenol AND Advil daily just to be able to function. He said there's nothing they can do for me since it's not a surgical problem and put in a referral for me to see neurology. I'm in the county healthcare system and will have to wait months for that appointment. I cried on the way home. The good news is I don't need surgery, but I still have to live in this chronic and often debilitating pain with no relief for who knows how much longer!! I'm so frustrated.
I'm sorry. Can you talk to you GP about pain management? My GP works with me and makes it the cheapest he can for me (two different generic pills with the meds for a propriatary med. It's another option, I hope.
I'm heading to the NS on Thursday. I'm scared of the surgery, but I'm scared of having to live with the symptoms too. I'm a teacher and when I walk I list to one side (usually to the right, but not always.) If a kid sees that... they will think I'm drunk... yeah. I hold my hand against the lockers in the hallway, that helps.
I'm glad your GP works with you. I couldn't get an appointment with mine until July 25th (county health system.) I'm praying that I can get into the NL before then, but it's highly doubtful.
I will keep you in my thoughts and prayers on Thursday. Please let us know how the appt goes!
Thank you, Emmaline. I feel the same way! Unfortunately, I am on disability and don't have insurance. So, I can't afford to just go get a 2nd opinion. :( I will look through the resources, though, and see if there might be any other providers here in Houston that would be willing to make some sort of payment arrangements with me.
Also, does standing versus laying down have an effect on what the imaging shows? The CT was standing and showed a 6mm herniation. The MRI was laying down and only showed 2mm. I ask because my mom has a uterine prolapse. I took her to the ER clinic a few months ago because she was freaking out, and we didn't know that's what it was. The doc couldn't see it on multiple examinations lying down. I told him to examine her standing up, and it was obvious then. Would chiari work similarly?
Thank you ALL for your information and support!! I don't know what I'd do without this site!
Thank you, again, Emmaline! That's a very helpful link!!
And unfortunately, my disability is too much to allow me Medicaid, and Medicare won't kick in for another few months. I'm stuck at the moment.
Please look into the EDS! EDS is genetic and prolapses are a common finding. Google the Brighton criteria. If you have EDS you will be at risk for cranio cervical instability. Yes, uprights can show the true length of a herniation when you are in the upright position, when laying down gravity can allow the tissue rest back up closer to where it belongs.
Thank you, jcdemar!
I felt this should be looked at further, and y'all's posts have only reinforced that. I just called radiology and found out that I can get my CT/MRI images put on cd. I'm going to go get that done this week and see whom I can contact about a 2nd opinion.
Sounds familiar. My NL minimizes many of my symptoms. I have a question that I forgot to ask this morning when I met my NS. I formally met my NS today. Aside from Chiari I have straightening of the cervical lordosis, my neck. My NS is scheduling me for an MRI of my neck and upper back. My neck and head will be tilted in an upright arch, and then an MRI will be done with my head tilted forward so that my chin is as close to my chest as possible. I have severe neck pain constantly, and of course problems with Chiari besides headache including poor balance, dizzinesd, occasional vertigo and nausea, faintness, and hearing loss among otherd. Is the two MRIs to check for an obstructive area like a syrinx? Or is he checking CSF flow? I haven’t had an MRI since Septembet '12. My NS deals mostly with spine and neck. While I am at it, do otherd have cognitive diffculties like poor memory and focus?