Hi and welcome to the Chiari forum,
Hursty48 (Sue) is no longer an active member here, but u can try sending her a PM (private message) that will generate an e-mail informing her someone is trying to make contact.....
With Sue's help we did create a small list....here is a link to it-
http://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-Australia/show/1314732
Hi Sue, my partner has just been diagnosed Chiari 1 malformation with 2.5cm below his foramen magnum. We live in Melbourne and would like to know if you have a list of Neurosurgeon specialised in Chiari that practice in Melbourne? Thanks for your help.
Gil
Hi Lyn
Great to hear from you. wow you are in the outback. I have a very good friend who lives at Silverton and thats as close as I think I have ever known anyone to be to your Grawin! (will have to look that up to see where you are)
Yes I googled Dr Marcus Stoodley after I posted to you last and saw the bit on misconduct. It was for having a relationship with a patient.....I guess they are human and get attracted to people...and though this shouldnt affect his brain ops .....I guess its not the right thing for him to have done. Anyway as long as you have found a good one - that is the main thing.
I only had to drive 3 hours north to Perth for my op and to see Dr Popovic. I may as well have been a million miles away during those first couple of days after the op as I didnt want our little boy (who was 6 at the time) to be visiting the intensive care ward...so was lonely but then again wasnt much company anyway!!! I does take time to get moving again and to feel like you are ever going to be able to do things but day by day - week by week, things do get better again. I went to movie world on the gold coast last August (had had the op earlier in march), and I went on the roller coaster, the spooky scooby doo ride etc.. and had a ball. My husband owns a Harley and we often go for a ride down the coast still. Though last weekend we went out to a dam to water ski and I didnt do that one because I just thought it might be a bit risky falling off and being hit in the back of the head......the odds were raised too high with this one!
So thats "recovered" I'm thinking.
No I dont have high blood pressure....the opposite. But just because I didnt have it doesnt mean that Clints hasnt been caused by his chiari as 17mm is not small and we all seem to have mostly the same "but" sometimes also different symptoms as not all chiari's are the same.
My daughter who is 27 was born deaf in her right ear. She always has had coped well with her left ear but 2 weeks before xmas she sent me a text message saying she couldnt hear anything and it appears she now also has permanent hearing loss in her left ear as well. Its been extremely life changing for her and us and we are going through the process now of working out what is the next to do - plod on with hearing aids or go with a cochlear implant etc......She is the same as your Clint...she doesnt want to talk or go on forums to ask questions etc..I dont know why - I think probably because she is not ready to accept that she is going to have to change her life to some extent.
I have another son who is married and 24 with a baby on the way...so am looking forward to being a grandmother in July this year. You know I never thought I would get this old.........
Anyway, best of luck and if you ever want to ask questions or just talk, just write.
cheers
x Sue
Hey Sue
Thank u so much 4 your time.I am really glad 2 hear that your surgery went well.
I looked up Dr Marcus Stoodley but he was been reprimanded 4 professional misconduct.Clint(my partner) has got an appointment with Dr Rodney Allan,who is also in Sydney, on 22nd Feb.
We live at a place called Grawin which is an opal mining field 70km west of Lightning Ridge.it is about 750km 2 sydney so it will be nice long Sunday drive!! Did u have far 2 travel 2 see your Dr?
Clint has been coping really well but wont read many forums and hates listen 2 me rattle on about things. He wasnt 2 impressed when i mentioned selling his motorbike, but he realises that it really is life changing.
Just another question, Did u have any blood pressure problems? Clint is 29 and has high blood pressure and we were wondering if it could from this condition.
Well i hope your daughter is ok. We have 2 great kids who keep us busy.our girl is 11 and our boy is 8.
Well thanks again.ill keep in contact
wish u and your family all the best
love lyn
Hi Lyn
My name is Sue and I'm sorry I have been away from the site here for a while now - been having some health issues with my daughter and have just been exhausted!
I had a chiari malformation with a herniation of 8mm. I had decompression surgery in Perth on 18th March 09. (almost a year ago now) I am happy I have had the surgery and have recovered well.
17mm is quite large. Where abouts in outback NSW are you?
There is a wonderful Dr in Sydney......Please go to your home internet page and in the google bar type in the words "Dr Marcus Stoodley" and then the "search" - he is a neurosurgeon and all his info should come up. Please let me know if you cant find him and I will get onto it for you. I need to be doing this for the site here anyhow. Dr Stoodley was kind enough to email me when I wrote to him and he also offered to see me if I couldnt find a NS who did decompression surgery in Perth.
I went to Dr Emil Popovic in the end, in Perth who did a fantastic job. Again I "googled" him to find him too and then asked my gp for a referral.
Please let me know how you go and I will try and find more info if you need it.
Love and Best wishes
Sue
Hi Lyn,
No worries and I am sure Sue will be on soon and will be in touch....she did research in Australia and has a few diff names of drs.
And please ask for help with navigating.....it can take some time to get used to the site if u r like me...not too comp savvy...lol....but I did it and I am sure u will too : )
"selma"
thank u so much for your time. i am not really up to speed with computers but im slowly working this out (i think!!!)
this is a really helpful sight and im so glad it exists.so much more info here than talking to a doctor.
i wish u all the best and thanks again
Lyn
Hi...I did respond to this post the other day...mayb u missed it, but we do have a member in Aussy and I already sent her a note to contact u with dr names...her name is Sue...Hursty48 is her MH sign on.
I hope u continue to post here for support ...as I am sure we can help u with the day to day issues we all face : )
Again welcome to our little family and if u need help with navigation let us know : )
"selma"