Aa
A
A
Close
Avatar_universal
new to this page
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 !!!
Cancel
2 Answers
Page 1 of 1
620923_tn?1452919248
Hi and welcome to the Chiari forum.

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,

"selma"
Comment
Cancel
620923_tn?1452919248
Comment
Comment
Submit Comment
1179332_tn?1297482590
Welcome to the forum!!

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!
Carolyn
Comment
Cancel
1179332_tn?1297482590
Comment
Comment
Submit Comment
Your Answer
Avatar_universal
Answer
Know how to answer? Tap here to leave your answer...
Answer
new to this page
Submit Answer
A
A
Recent Activity
620923_tn?1452919248
Blank
selmaS <3 <3 Happy Valentines Day ... Comment
21 hrs ago
4760166_tn?1398360913
Blank
gjjl, and The_beat_goes_on commented on gjjl's status
Feb 10
16744917_tn?1451270439
Blank
gjjl I have a leak and now am ha... Comment
Feb 10
Top Neurology Answerers
620923_tn?1452919248
Blank
selmaS
Allentown, PA
7530528_tn?1428275172
Blank
AKC_75
TX
562511_tn?1285907760
Blank
Karen99
CA
Avatar_m_tn
Blank
Ball123
Avatar_f_tn
Blank
lasel22
1306714_tn?1327260680
Blank
linnielou232
muskegon, MI
Chiari Malformation Community Resources
RSS Expert Activity
233488_tn?1310696703
Blank
Marathon Running Done Over Many Yea...
May 21 by John C Hagan III, MD, FACS, FAAOBlank
233488_tn?1310696703
Blank
New Article on Multifocal IOL vs &q...
May 21 by John C Hagan III, MD, FACS, FAAOBlank
748543_tn?1443740527
Blank
TMJ/TMJ The Connection Between Teet...
01/15 by Hamidreza Nassery , DMD, FICOI, FAGD, FICCMOBlank
Top Neurology Answerers
620923_tn?1452919248
Blank
selmaS
Allentown, PA
7530528_tn?1428275172
Blank
AKC_75
TX
562511_tn?1285907760
Blank
Karen99
CA
Avatar_m_tn
Blank
Ball123
Avatar_f_tn
Blank
lasel22
1306714_tn?1327260680
Blank
linnielou232
muskegon, MI