Help! Chiari Specialist in Newcastle Australia

[annelie1980]

Hi
Up until March 2013 I was pretty healthy then bam! I have been struggling since and have racked up quite a complex medical history in 20 months which is ongoing. Im 34 going on 54! My dad had the decompression surgery in May this year and even though I shared similar symptoms my GP told me there was no need to get checked (i have headaches; stiff neck/shoulders; weak upper arms; brain fuzz and word loss; poor concentration; restless legs; seize up if been still too long; insomnia; palpitations - apparently this is asymptomatic!) . I was diagnosed with Chiari 1 officially in September this year after brain MRI. I had pneumonia at beginning of September then a bout of left sided facial numbness 3 weeks later, the MRI was done and I was told that the Chiari had nothing to do with the numbness and it was diagnosed as neuritis. I have many symptoms but finding someone willing to look into it or who has a clue on the significance of Chiari is nigh impossible. I asked my GP for the referral to NS as I felt this needed a specialist opinion, for my peace of mind if nothing else. I do not want surgery if it can be avoided but I don't want to end up with symptoms/damage down the track that could have been prevented with surgery. I sent my referral to the NS back in October, I am still waiting to hear back from them with an appointment date! (to their credit I was ordered to have Whole Spine MRI which Im glad to say showed no srynx) Im fed up of waiting and waiting and waiting. Im frustrated, I look ok on the outside, inside my body is screaming and I constantly get the feeling drs think that Im just bunging it on. I am a terrible patient and hate being sick, I just want to get well!!

My most recent adventure was an ERCP which naturally went from a day procedure to a 3 day stint in hospital with pain, headaches and blurry vision. My Gastro stated that he wanted me to see a Neurologist urgently and he would speak to an Neuro the next day and organise appointment for the next week. 2 weeks later and several calls to his office I was told to get a referral from my GP and organise appointment myself. Referral was sent Wednesday this week and I don't expect to hear from anybody until the new year now.

I feel like I am not being heard.....should it be this hard to find help or at the very least someone with knowledge who can answer my questions? I know my symptoms have been worse since my pneumonia, like the virus triggered my Chiari. I know this is quite common. My home and work life are suffering, I really need help!

Does anyone know of a Chiari specialist in Newcastle Australia or even Sydney?

Appreciate your time to read this and hope to hear from anyone with some advice.

Other conditions: Endometriosis; Neuritis; Hypothyroid; Blood clotting disorder; Reflux; Biliary Stricture (stent)

[annelie1980]

Certainly will. Thanks for your time Selma. Merry Christmas and I wish you health happiness i 2015 )

[selmaS]

  You  are  quite  right  .....the  only  thing  rare  about  Chiari  is well  informed  and  experienced  Drs.....

Even tho Chiari  was  discovered  late  in the 19th  century....MRI's  were  not  around  and  it  was  only  seen during  an  autopsy.....so  they  really  had  no  idea how  it  could  and  does   affect those  living  with it...

MRI's  in  them self  are  still  new  to being  used  to  detect  this condition,...and  seeing  it still  does  not  tell a  Dr  what  it is doing  to  us for  that  reason  we  need  to see  a Dr that researches  and focuses  on Chiari  and  related  conditions.,..,and  they  are  few  and   far  btwn...so  most  of us  have  to  travel  to get  to a  Dr  that  is  a true  Chiari specialist.

  If  you  find  a  Dr  in your  area  that is  not  on  our  list  be  sure  to  add  them  once  you  have  been  treated  by  the Dr....as  we  need the list  to  grow  <3

[annelie1980]

Hi and thanks. I did take a look, thought it wouldnt hurt to ask as things change regularly. Im still in awe of just how many doctors dismiss this condition as not serious or nothing to worry about. I feel there is a serious lack of understanding/knowledge in regards to chiari. This site is a wealth of knowledge and really helps knowing im not alone.
Annelie

[selmaS]

Hi and welcome to the Chiari forum. We do have a small list of Drs for Australia. See the Health pages link to the list. Keep in mind the list is not a referral nor an endorsement for those listed. Use the list to research Drs.You may need to travel to get to a Chiari specialist.