Hello I have question reguarding the low lying tonsils. I just received my MRI results back and it says tonsils are 2 mm below foreman magnum and no frank chiari malformation noted. I have my first appt with a neuro MD tomorrow. I have so many things going wrong with me I don't know where to begin. I am a 41 year old mother of three , I have had this wooshing sound in my ears... ( hearing my own heartbeat in them )for about 5 years and was told it was menieres diease and to deal with it. Then came the dizzy spells and vertigo. Next came the numbness of my hands and feet out of no where. That could not be explained by my MD. Then the kicker the mind blowing headaches and neck pain! I feel as though an elephant is stepping on the back of my head with an upward motion ! I have other symptoms too but I just wanted some honest feedback of my MRI report and what questions should I be asking of the Neuro MD tomorrow. Thank You for letting me vent :)
welcome to our chiari family, but just so you know, you are a proud member of the arnold chiari malformation family now....not frank! lol! not laughing at you, but with you! all your symptoms are normal chiari symptoms and tell us you have over crowding of your brainstem and most likely a blockage of csf. ask your nl to do a cine mri to check for the blockage and to check for overcrowding. drs who are not specialist, do not know to look for these things and unfortunately, anything under 5mm is listed as a chiari 0 and many drs won't even recognize it. in all honesty, unless you have a truly open nl, you will be wasting your time going to anyone who is not a specialist. we have a list here on the forum of drs our member have used and liked....but please do your own research and find the one that fits for you. it is at least an informed place for you to start your journey!
good luck and i hope you find the friendship, support and help that i have here.
I am not sure if the statement "no frank chiari noted" is ur wording or was this on the report?
It is sometimes best to write exactly what it says on the report when u want to know what it means....many times we inadvertently re-word things to say what we interpret.....and others do not get the same meanings.....
I know several with chiari were mis dx with menieres....I have Hashimoto's an autoimmune thyroid issue that can cause ear issues too.
What u will want is a CINE MRI to see if ur low lying tonsils r creating a CSF blockage...that in itself can cause symptoms...u will also want to know if u have overcrowding...size of the herniation is not a major factor.
U want to know if this neuro is well inform on chiari and how many patients they treat a week with it.....
The response should give u an indication if this dr is the right one for u....
Good luck and do not be too upset if this dr is not one that feels the low lying tonsils r ur problem.
Thanks for the support! Yeah that was the wording on the report "frank Chiari " after working in a burn/ trauma unit for years I knew he ment it was not obvious, but boy I feel like I have been ran over by a truck! Some days are great ! Others it is hard to get out of bed. I just hope I can get another MRI authed by the insurance company. Thank you again for your support in this long journey towards my pursuit of good health :)
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