new diagnosis

[allisonmarks]

my daughter went to a neurologist and was told that her madula is going down her spinal cord and that he will see her in 6 months and then she may need surgery. Does that sound like Chiari and would that make her disabled. What procedure would be recomended for this

[selmaS]

  Is ur DD  under the age of 18?....if so, it is good to know NS's that also treat children...not all will....

  And just a side note...not all NS's have the experience to work on chiari...they may be great with other areas, but at least consider getting an opinion from a NS that is a true chiari specialist.

  I am so glad u have a NS u r comfortable with...and  able to help u and ur DD.

  Please keep us posted

  "selma"

[allisonmarks]

daughter is to return to Dr Sonja Fonn in a week to read the latest MRI. He is located in Missouri. He is the surgeon who did my back and I have great faith in him. I have returned to him for an old neck injury. He has great creditials and would and have recommended him to many people have never heard a negative word about him.. I have great faith in him and hopefully he can help her will let you know what happens in a week.

[selmaS]

  Hi...please relax.....it is possible that the change in size could be a difference in the slice taken for the MRI....it can also be if the machine was set different or if it was a different machine...

  and the size they measure is length not width which is more the issue....

  Has ur DD had a CINE MRI?...do u know if she has a CSF obstruction?

   Talk to several well experienced chiari specialists and find the right one for ur DD.....

    Surgery is not always needed...and keep in mind it is not a cure....only a means to restore flow and slow progression.

        "selma"

[allisonmarks]

daughter has had new MRI and it has grown from a 4 to a 6 in a month and 6 days. how serious is this are we facing surgery. we are very concerned please can some reply as soon as possible or email me at ***@**** for an answer

[selmaS]

  Hi...I was happy to see that ur DD is going to see a diff NL and is going for a new MRI....there could be other issues going on causing an obstruction...the tonsils r not the only way for CSF to be blocked...a retroflexed odontoid can do as much if not more ....

   Please keep us updated

     "selma"

[allisonmarks]

my daughter goes to the same neurologist that i go to and he is an excellant surgeon. the infomation i was going off of was what she told me. i had an appointment wth him the next day and told him how much he had scared her.. he sat me down showed me her mri and explained it to me. the cerbellum is at 4mil down the spinal cord and that he was not concerned it would go further..she feel from her horse about 6 months ago while she was laughing and began to have a severe headache and lost her balance this has happened during a water fight with the family. any tme that she laughs she gets weak in her knees and falls. she wakes with headaches that do not go away with head movement and she is concerned now of a brain tumor. she has returned to her regular doctor and they will do a brain scan and will go for a new mri and different neurologist.  

[selmaS]

  Hi and welcome to the Chiari forum.

  It is true that the medulla oblongata is a part of the brain stem, but sometimes the brain stem can be elongated and be longer than "normal" this is usually due to tethered cord*.

Some with TC*  may have low lying tonsils due to the TC* but do not have the malformation of the skull. and the release surgery will most times allow the tonsils to retract....

U need to find out what this Dr actually meant.

And if it is an elongated brain stem, then u would want a MRI of the lumbar spine and thoracic spine, to rule out TC* and syringomyelia.

  SO chiari may be involved and it may not be, but a chiari specialist is the best DR to see to help guide u.

   "selma"

[lydelia]

Did you mean cerebellum? You medulla oblongata is part of your brain stem and is supposed to be down there.