Hoping this post catches the attention of the Aussies. Any positive resources, or, potentially positive, that you can share? An NS who doesn’t go by herniation size rather symptoms or CSF flow, healthcare advocates, Facebook groups, or anything that could help out. Any advice with navigating the health care system? Thank you!!!
Jenn
I have seen some of these Web sites, and although there are some specialists that say they deal with Chiari 1 malformation there is only one neurosurgeon who is considered the best.His name is Prof Marcus Stoodley at Macquarie hospital.Although he is considered the best at what he does ,he is also very conservative about surgical intervention,as many of us Aussies have found out.You have many well recommended doctors in the USA but unfortunately we are limited to very few in this country.Sorry for sounding so negative but unfortunately those are the facts.Stoodley considers borderline herniations unremarkable and cannot understand why it should cause so much pain ,loss of feeling and other complaints that we now understand could definitely be Chiari related.Frustration is starting to settle on me ,but I would also recommend Saint Vincents hospital in Sydney a try.There are doctors there that are interested in unusual syndromes.Hopes this helps although I know it is not much.But as they say the journey of a thousand miles starts with one step.Sorry for the cliche.Wish you all well and look forward to any new information to help treat this condition in this country.
Hi,
My 2 year old just went thru a decompression surgery for chiari malformation type 1. We saw dr a fowler at Westmead childrens hospital. He was really good. Dr Fowler is on linkedin maybe you could get done reference from there.
Apart from this I m not very sure if there are any groups in Australia for chiari… I myself did lot is searching before I signed up here.
Hi ,I went through decompression and duroplasty in Royal Hobart Hospital in June 2013,Mr Hunn is classed as best in our state of Tasmania. He has some years where he has no Chiari patients ,most in one year has been 2 .I had a follow up with one of the Registrars 8 wks post surgery. 12 month one was cancelled with no reason given .After surgery I was sent home with no instructions,I rang the liaison Nurse and all she said was the physios came to get you out of bed for a walk the 2nd day after op and you told them you didn't feel up to it so they decided not to bother.then she hung up.The reason I didn't feel up to going for a walk was 1 :my spine doesn't handle my weight on it and 2:I had my 9th bout of pneumonia in both lungs after aspirating from vomiting coming out of the anaesthetic,those 9 bouts occurred in 18 months.Spoke to my local Dr and his opinion I'd had the surgery so now I'm right.I've tried to get better treatment from him by giving him the CSF info website but he doesn't seem to want to know. I did try and make contact with a mainland Australia group which included a pic of myself.I've heard nothing from them either.Assuming their has to be others around ,especially since they say 1 in a 1,000 have it.Will just plod along till things get impossible to put up with then try again.
Vicki - I am a Mum of a 27 year old that had chairi surgery here in the USA. Please check your symptoms out with regard to dysautonomia and EDS...they are often found under the same umbrella as chairi. Hydration is so very important with all of them... tylenol/codein helps a little with the violent migraines might daughter experiences with less side effects as other meds. Vicki you will be in my prayers from across the ocean. Love Kedi's Mum
Vicki McGowan said:
Hi ,I went through decompression and duroplasty in Royal Hobart Hospital in June 2013,Mr Hunn is classed as best in our state of Tasmania. He has some years where he has no Chiari patients ,most in one year has been 2 .I had a follow up with one of the Registrars 8 wks post surgery. 12 month one was cancelled with no reason given .After surgery I was sent home with no instructions,I rang the liaison Nurse and all she said was the physios came to get you out of bed for a walk the 2nd day after op and you told them you didn't feel up to it so they decided not to bother.then she hung up.The reason I didn't feel up to going for a walk was 1 :my spine doesn't handle my weight on it and 2:I had my 9th bout of pneumonia in both lungs after aspirating from vomiting coming out of the anaesthetic,those 9 bouts occurred in 18 months.Spoke to my local Dr and his opinion I'd had the surgery so now I'm right.I've tried to get better treatment from him by giving him the CSF info website but he doesn't seem to want to know. I did try and make contact with a mainland Australia group which included a pic of myself.I've heard nothing from them either.Assuming their has to be others around ,especially since they say 1 in a 1,000 have it.Will just plod along till things get impossible to put up with then try again.
Vanni, how’s your baby doing?
Hi,
My 2 year old just went thru a decompression surgery for chiari malformation type 1. We saw dr a fowler at Westmead childrens hospital. He was really good. Dr Fowler is on linkedin maybe you could get done reference from there.
Apart from this I m not very sure if there are any groups in Australia for chiari... I myself did lot is searching before I signed up here.
My baby is recovering well… Am waiting for a followup in 6 months… Will get another MRI done at that time.
She has started walking after the surgery and seems to be understanding a lot more … Am very happy we got the surgery done early. I meant to post about my daughter earlier but haven’t had the time… As soon as I saw the post about Australian resources I thought I can help with some names.
@vicki it’s very sad to hear about your experience with the Hobart hospital. After surgery care is very important… It maybe a good idea to get second opinion from doctors in Sydney or Melbourne. Our prayers are with you!
Vanni said:
My baby is recovering well.. Am waiting for a followup in 6 months... Will get another MRI done at that time.
She has started walking after the surgery and seems to be understanding a lot more .. Am very happy we got the surgery done early. I meant to post about my daughter earlier but haven't had the time... As soon as I saw the post about Australian resources I thought I can help with some names.
@vicki it's very sad to hear about your experience with the Hobart hospital. After surgery care is very important.... It maybe a good idea to get second opinion from doctors in Sydney or Melbourne. Our prayers are with you!
Would love to be able to go to the mainland to see Neurosurgeon but the biggest factor is affordability. To fly from close to where I live to Victoria is over $400 each way,to get cheaper flights its a 3hr car trip to airport and sailing is
around the same as flying but takes 12hrs.thats if my Dr would do the referral to begin with.Next visit I'm going to stress to him that the CSF is not the online support group which I'm wondering if thats what he thinks.
theodore45 said:
Vicki - I am a Mum of a 27 year old that had chairi surgery here in the USA. Please check your symptoms out with regard to dysautonomia and EDS...they are often found under the same umbrella as chairi. Hydration is so very important with all of them... tylenol/codein helps a little with the violent migraines might daughter experiences with less side effects as other meds. Vicki you will be in my prayers from across the ocean. Love Kedi's Mum
Vicki McGowan said:Hi ,I went through decompression and duroplasty in Royal Hobart Hospital in June 2013,Mr Hunn is classed as best in our state of Tasmania. He has some years where he has no Chiari patients ,most in one year has been 2 .I had a follow up with one of the Registrars 8 wks post surgery. 12 month one was cancelled with no reason given .After surgery I was sent home with no instructions,I rang the liaison Nurse and all she said was the physios came to get you out of bed for a walk the 2nd day after op and you told them you didn't feel up to it so they decided not to bother.then she hung up.The reason I didn't feel up to going for a walk was 1 :my spine doesn't handle my weight on it and 2:I had my 9th bout of pneumonia in both lungs after aspirating from vomiting coming out of the anaesthetic,those 9 bouts occurred in 18 months.Spoke to my local Dr and his opinion I'd had the surgery so now I'm right.I've tried to get better treatment from him by giving him the CSF info website but he doesn't seem to want to know. I did try and make contact with a mainland Australia group which included a pic of myself.I've heard nothing from them either.Assuming their has to be others around ,especially since they say 1 in a 1,000 have it.Will just plod along till things get impossible to put up with then try again.