Well i had my Appointment today with the Neurologist DR Burke. She wasnt as bad as I thought but basically told me all my pain was down to worrying and that my 10mm Chiari couldnt possibly be responsible for it :( she wants me to try some drugs to see how i get on and has upped my Amatriptalyn to 20mg a Day which doesnt seem that much but she seems to think it will help... The 10mg im on now is doing nothing... she also diagnosed another drug i think it is Gabapentin? but i didnt write the name down so will have to wait till the GP gives me them soon.
She had never heard of a CINE MRI and didnt think i needed to have the full back MRI or a standing MRI. She didnt say anything about having the pressure of the CSF tested.... She said that with a chiari you only get a syrinx at the top of your spine. She did tell me that im technically only 2mm Herniated as anything up to 8mm hearniation below the foramen magnum is completely normal.... is this true? and she said im very tight down there with very little fluid on the MRI. I have photos of my MRI if anyone would like to see them I can email them over and see what you think. (Would appreciate some advice. i know none of you are experts but some a lot more so than me) One thing that is worrying me a little looking at the pictures is that the top of my spine(Bone) appears to be pulled back a bit and creating a depression in my spinal chord.... ive looked at other scans on google images and this doesnt seem normal to me.
Anyway guys she has referred me to DR Mathad at wessex neuro(Southampton) so i can only go along and see what he says... She is very Anti surgery and kept saying how people have died and some left paralyzed with the it....
Lets see now how long it takes to get the neurosurgeon appt..
Thanks for reading and oh has anyone any experience with Gabapentin... i think she said it was used for epilepsy.
hi,i was on gabapentin before i was diagnosed with my chiari.it is also used for as a nerve pain relief.they used it to help treat me because the dr.'s were saying i had fybro.i knew there was something more,that fybro wasn't it.but no-one would listen.for yrs it was like that.last week i went via ambulance because my husband thought i was having a stroke.i had the numbing in my face down my body all on my left side,my speech was horrible,very slurred and hard to get my words out.my pb was very low 65 over 39.ct scan showed lesions on my left side of my brain but the mri didn't show them,but showed very few small white spots.after taking a second look at my mri with another neuro they found the chiari.they then had a neurosurgeon confirm it.it was a good thing they found it because they were going to do a spinal tap to check for ms or what might be causing my problems.i have had severe neck and back of my head pain for such a long time but never had a mri or ct scan because most dr.'s i saw would just say it was fybro related.they did put me on what they said was a new experimental pain relief med called nucynta.it took my pharmacy 5 days to get in and even with my insurance it was $40 :( along with tizanidine a muscle relaxer.the nucynta does help but i can still feel the pain but not as bad.i had one episode like a stroke 2wks before but wasn't like the last one at all,i went to go lay down and when i woke the next morning my sense of smell is next to nill.if it is under my nose and strong i can smell other then that,nothing.i have other symptoms along with but dont want to go on and on.no one could tell me why i had the paralysis though or why my pb is so low.i usually have low bp,but never this low.i was never told the size of mine and i don't have copies of my mri,i just know they told me i have it.they aren't chiari specialist,but did explain what it was.i went for a flow test a couple days ago but haven't got the results yet.my appt is on the 2nd.i guess i will find out then.this is all new and very scary for me.my husband and i have seven children.and i am of no use to them.is anyone ever have it were they can't leave the bed.i get so light headed,dizzy,nasause and wide spread pain?i still have light numbing on my left side but nothing like it was the night my husband called the squad.i feel very lost in this all.i wish you the best!
I would go for a second opinion, I saw two NLs and a NS before I found an NL that was willing to listen and address the Chiari for me. Don't give up, and keep trying until you can get someone to try to help you. You and your family will be in my prayers,
Tommo, i'm sorry that the neuro you saw at QA was Crap to put it bluntly. She as a neuro should know what a cine MRI is and also what a Chiari is also. If you go onto Southampton Wessex Neuro's website you can look up the consultant NS that you are seeing and find out what his specialty is. I have my surgery on 11/9/12 so I shall let you know how it goes. Thinking of you and your family and hope you get the right help and a decent NS that will treat you correctly and be understanding. Simmi
