i am so glad i found this group!! i have recently been diagnosed with type 1 (5mm). i have an appointment with dr.scodary at depaul hospital (chiari center) in bridgeton, mo in a few weeks. i am curious if any of you have heard anything about him, good or bad, or have any experiences with him?? i am also waiting to hear back from dr. oro in colorado, dr. di at cleveland clinic and dr. heffez in milwaukee. i have what i call "simple" chiari. my herination is a 5mm. i do not have a syrnix or any other complications. however i am experiencing ALL of the dabilitating symptoms and it has taken over my life and my families as well!!! i have heard that the sooner you have the surgery the better (is there any truth to that)??? also i am curious how to get a "top of the line" ns to look at your case and schedule a consultation with only a size 5mm (considering i am experiencing major symptoms)?? it is sooo annoying trying to be your own medical advocate as well as dealing with all the pain as well. any advice or opinions you all have i would greatly appreciate!!! also if i can help any of you with anything please let me know!! one thing that i know FOR SURE is that the only person who truly understands what we are going thru is someone else who is going thru it as well!! hope you all are having a great and "pain free" day !!!
First off if u r having many symptoms and it is affecting ur quality of life, I do not understand u saying it is a "simple" chiari....size is not the true criteria for determining what level of chiari u have.....have u have a CINE MRI to see if u have a CSF blockage?....do u know if u have overcrowding?...these 2 items along with symptoms is what a true chiari specialist will look at to see if treatment is a option .......
I have not heard of Dr Scodary b4, but there is no way to know all the drs that r well versed in chiari.
As for contacting all the others that r chiari specialists..wow, u will have a time deciding among them if they all contact u back....
It is better to get treated when u have the onset of symptoms instead of going yrs with the symptoms b4 nething is done, the sooner u go the better possibilities for a better outcome.
I am happy to have u join our little chiari family here, so sorry the reason u had to seek us out,
It looks like you have a good start on things already..the first thing that we suggest is to look for a Chiari specialist..it looks like you've got that one covered!!
I agree with Selma..there is no such thing as a simple Chiari..there is so much more to look at than just the herniation. When my NS discovered mine he didn't even tell me the measurement, he was confident by the MRI pics and how debilitating my symptoms were that it was the cause.
If your symptoms are altering your life, I do absolutely believe that doing the surgery as early as possible is important. I went through months of misdiagnosis b/c most DR's here hadn't even hear of Chiari and I am sure that is why I am dealing with a number of symptoms still post op. However, it did make a big difference to my walking having the surgery!!
I believe that one of the members here went to the TCI with a 4mm herniation so I really don't think that is what they base it on when they decide to see you. I hope you hear back soon!
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