stage 1 of chiari malformation does it get worse

[lollypop28]

type 1 chiari malformation, does it get worse and is it heredity?

[ldeanna67]

Thank you.  I am printing your response to show the Dr next week. I do not know what  Ehlers-danlos is but will goggle it.

[selmaS]

  Hi and welcome to the Chiari forum.

I have heard many that have been mis'dxed as MS...and this is one test we all should have ruled out...not sure how they got that wrong as the LP test should show bans in the fluid...and demylation on MRI....it is possible to have both too.

The length of herniation is not void of what symptoms u will have, and far too many Drs will only look at that....it is more if they r causing a CSF obstruction....so ask about a CINE MRI, and MRI's of the thoracic and lumbar spine to rule out syringomyelia...u already know about tethered cord....so u must have had a lumbar spine MRI b4.

Over crowding of the skull is another issue...retroflexed odontoid is one aspect that some with chiari may have ...and it can cause  many of the symptoms u mentioned.,

Also Ehlers-Danlos...they should check u for that as well, many times we r misdx'd as having fibro when it is EDS. U will want to know about this as it too can cause many of the symptoms and can affect the out come of surgery if u r considered a candidate.

[ldeanna67]

I am 49 years old and was told that I had atypical MS about 20 years ago after being diagnosed with transverse myelitis. I also had a seizure about 8 years ago just 1 time only. Last week I was hospitalized with what appeared to be stroke but after an MRI was told I have Arnold Chiari. I have a 4mm tonsillar ectopia.  My symptoms are numbness and tingling on the left side leg and arm with weakness.  I also have numbness on my face especially my lips and tongue.  I have also noticed that when I shower and lift my arms to wash my hair I go numb on my right side... arm and hand only. I am seeing double out of my right eye only and vision is not corrected with glasses/contacts. Just got new glasses in the last 4 months and they were fine until 6 weeks ago. Using the wrong words for common situations is happening ocassionally.  I feel the MS diagnosis was incorrect. I also have spina bifida occulta and lumbarized sacral vertabrae with Pars defect which they found about 15 years ago. Is this all related? Due to it only being a 4mm ectopia should I be having all these symptoms?  I see a neurologist next week is there anything I should be asking?

[selmaS]

  Hi and welcome to the Chiari forum.

Thank u for reaching out to another chiarian and offering to share ur childs chiari journey...it is so important to this forum that we all do this...and it  is so nice to see : )

I hope u share more about ur DD's journey with all of us, as u never know who is reading may benefit as well <3

[JMKavanagh]

Hi I live in England, just outside of London and my daughter is 11 now and had decompression surgery at the beginning of 2009 with Mr Dominic Thompson at GOSH. Her Neuro consultant was Dr Adelaide martinez who was lovely. My daughters post operative condition is interesting and challenging at times and she will always be special and need extra special help and attention.  If you want to talk more let me know.

Janinex

[Casscarez]

Thank-you for your help and this forum!