I need a specialist in my area. San Bernardino California.

Ironically enough I am a veteran nurse, 13 years practicing in pediatrics. I work at  hospital that is a magnet for rare conditions. I was surprised and curious when I was given my MRI results of cerebellar ectopia 8mm. I was angry when my PMD (private practitioner not related to my workplace) didn't call me with the results. He had his medical assistant leave me a message to pick up a referral from the office. I was shocked when I recieved the paperwork for a referral to see a neurosurgeon. Now I am shuffling form Specialist to specialist to get a firm diagnosis, I am angered and frustrated by the conflicting opinions I have received. A specialist at Cedars Sanai says I have Chiari, Loma Linda says I do not. Does any one know of a "real" chiari specialist in my area. I am very surprised by the conflicting diagnostic results and physician opinions. Meanwhile I am suffering with a host of symptoms that are now seemingly worsening daily. I don't think I have the luxury of time to run around from office to office. Please if anyone can refer me to a specialist, I would greatly appreciate your help.

[selmaS]

  Hi and welcome to the Chiari forum.

  What u r experiencing is what we on this forum call the Royal Chiari runaround.One Dr says u have it, one says no, the next says mayb...ugh

A true chiari specialist is where u really need to go, and here is a link to a thread of drs names we have compiled....it is not meant as a referral, u still need to research the drs. ...and keep in mind u may have to travel...we all do not have a chiari dr near us......http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

Next, Chiari is not really as rare as they claim it to be...it is well informed drs that r rare!!

May I ask what r ur most pressing symptoms to date?

  Have u had a CINE MRI to determine if u have a CSF obstruction, overcrowding?

How about a syrinx? Have u had a MRI of the thoracic and Lumbar spine as well to rule these out?...u will also want to rule out Ehlers-Danlos, tethered cord, sleep apnea....bulging disks...there is an array of issues u can be dealing with all at once and y many drs r perplexed.
Plus they read the same old out dated info that is on teh web about it being rare, there r way too many of us for this condition to be rare.It is just msdx'd and the drs do not connect all the symptoms to the one issue, they consider many conditions none of which r helped with the treatments or meds they offer.

With Chiari u have to modify what u do and how u do it in order to be able to keep going.....save energy one day for a special one later in the week..etc

Listen to ur body.....do not over do by lifting, bending....or not getting the proper rest u need, as a chiarian we tend to have many sleep issues, insomnia being one.

  We r happy to have u join us, but not happy about the reasons that bring u.

    "selma"

[jlebobby357]

Yes the "run around is infuriating. I am embarressed for my field. This is rediculous. I have great empathy and respect for chonic pain sufferrers.
I will review the list. I have been doing a lot of studing on the subject and have found a few chiari "specialists" so If I come accross one worth mentioning I will forward the info to you. Thanks for your response and validation. It means alot!!

Now that I have joined this group I will try to be of any help I can. My specialities are Peds, Peds GI, ER, post anethesia recovery, some infectious disease, some peds cardiac, a little peds oncology, hematology, and immunosuppression treatment, and management. PLease let me know if i can be of any help.

Thank you,

jlebobby357

[selmaS]

  Wow u can be of great help...there r many that do not understand recovery from surgery and most is due to the  anesthesia....and I am CL of the GERD forum too, so nething u can add over there is welcome as well : )

  "selma"

[jlebobby357]

I would love to help. Please send me any questions you may have. I will do my best to answer them.