Firstly big THANK-YOU to you all for allowing me access to this group & so many amazing stories of strength & courage. I'm not sure what I'm doing at the moment - still very much confused, angry, sad, in denial, scared, anxious, relieved to have found it etc.
I had a CT-A on 8th Aug & diagnosed with a 6mm aneurysm behind my left eye. Went in for an angiogram on 14th Sept. The Neuro ph me that Fri night to advise he had spoken with the Interventionist & whilst they could coil it, it would need a stent. They believe because of my age (38) that it would be better for me to have it clipped. I was a bit emotional when he called (& was out in a shopping centre) so he said he would ph me back the following week to answer questions etc. When I didn't hear from him I called his rooms & left a message. I've left 3 messages now over a 3 week period & still haven't had a return call. As the weeks have passed my list of questions has grown & I'm getting a bit more anxious as each day passes. I'm sure they annoyed my annie with the angiogram as well because I'm getting little flickers in that eye.
Anyway, I know this is mainly an American group but I was wondering if there are any Aussies on here who could recommend a good Neurosurgeon in either Sydney or Brisbane? Just to explain, I live in Townsville, work in Brisbane but have family in Sydney so happy for either place. Totally understand how busy this gentleman is & he comes very highly regarded however I need to be a bit more proactive with my life so I'm going to make another ph call tomorrow & if no luck then I'll need to find someone else hopefully just as highly regarded. I'm a big fan of word of mouth so would really really appreciate hearing from anyone treated in Australia.
I would also love to hear what advice you were all given as to lifestyle changes whilst waiting for surgery. I've already cut out caffeine (tea, cola) & have stopped going out drinking/dancing as I read somewhere alcohol was not good. Also stopped my personal training sessions as I read somewhere it was important not to have a spike in blood pressure. I also fly a lot for work so now not sure if thats a good thing. Are multi-vits good, do you take aspro/avoid aspro etc etc.
I am from the US but wanted to welcome you and wish you luck in finding a new physician to assist you in your new journey.
Please know that all the emotions you are feeling are normal after first being diagnosed. The best advice I can give you is to write a list and questions that you have and arm yourself with as much information as possible so that when you do speak to your doctor you can get the answers to questions you need.
Best of luck to you in your upcoming journey and again, welcome to BAF
Welcome... so hope you get contacts from others who know your area. My very personal opinion is that surgery/clip is better than coils....I was coiled. I'd love to fly in to help you; tho it would likely take me longer to find my way around, than to help you.
Prayers for your successful results, beginning with that phone call.
Hi Melanie, I live in Sydney, Australia. I saw three neurosurgeons re my clipping surgery and the one that was highly regarded by his peers and continually recommended was Professor Michael Morgan at Macquarie University Hospital. He has operated on over 5000 aneurysms and has very good personal mortality & morbidity rates.
As far as lifestyle changes, I was advised that smoking and high blood pressure are the main risks for rupture. One or two coffees a day and exercise is ok as long as it is not excessive. I have not heard of any problems as far as flying. I just flew for my holiday before surgery. Please don't hesitate to message me if you need any more info.
Well I had a look at Macquarie University Hospital & OMG!!! I work in eHealth & was sooo very impressed with their set up. I also looked up Prof Michael Morgan & Wendy it looks like you are in very safe hands with him.
I was ready to ph his rooms on Thursday but had to tag along to a meeting with my boss for most of the morning. When I got back to my office I searched for the number again & was going to call but got distracted with other ph calls & had to provide a bit of app support to a few district staff. Then out of the blue my mph rang & it was the Neurosurgeon I'd previously spoken with re my ct-a & angiogram.
I was very calm while we spoke on the ph, he answered a few of my questions. I forgot a lot of them. He again explained the processes/issues re coiling vs clipping. His calmess & matter of fact about the whole thing did ease my anxiety a bit but all I wanted him to say was you'll be fine, you're young & healthy can't see you having any problems with surgery or post op. Of course he can't say that ... legally & cause I know you just never know what can happen.
Anyway, I made a rather snap decision while I was on the ph & booked myself in for surgery. I thought its better just to get it done & me control the situation as much as I can vs living like I have these past 4 weeks on edge & all jumpy at any little twinge etc letting it control my anxiety & fear. I am normally not a stress head, far from it, but these past 4 weeks have been horrible.
So I'm to be admitted into Westmead Private on Tues 25th Oct for the big op on Wed morning. He said I'll stay in ICU for the day/night & sometime the next afternoon be transferred to a ward where I'll stay till 2nd Nov. Not too happy bout being in hospital on Melbourne Cup I can tell you! But I had to time it so I was out & staples out before my bday on 11th Nov which is of course Remembrance Day. We will be going down to Canberra to see my Brother-In-Laws name unveiled at the AWM (he was killed in action on 4th July) so I definitely wanted to be out of hospital for that as I know I'm going to want to have a drink (or 2) with my sister to help her through the day.
After hanging up the ph I wasn't quite as calm as I was whilst I was on it. I walked out into the open pod area to my work mates & just blubbered. Once I got it out of my system I was ok. Everyone was so supportive & positive. I told them I had drunk the 'glass 1/2 full' dry & they all offered to keep it topped up.
Now begins the process of getting everything organised. I haven't told my parents yet, I was going to do it after I sorted myself out. I love em dearly but my mum will get all emotional then I won't be able to get emotional cause I'll be worried about setting her off + they have a bad habit of taking over & that just shits me & I don't want to get stressed/angry. My sister is going to have the kids watched so she can come in with me & she is as cut/dry as they come with these sorts of things. I'm going to try & fly out of Brisbane on Friday, thought I'd do a quick weekend trip home to Townsville to have a bit of time out/regroup then fly straight down to Sydney on the Monday. Might have to lash out & buy myself a new pair of pj's. Gotta at least try & look decent in case there are any cute doctors passing by.
Thank-you all again for your kind words. I'm so new to this concept of being on a forum but I like how positive & supportive you all are to one another.
Just know you are not alone in this journey. This is a great support group filled with positive energy sending your way! I had a right internal carotid artery annie that was discovered in March and I had liquid embolization surgery on June 29. I know the stress of the wait that you are feeling and the family stress as well can be worse than anything else.
My thoughts and prayers to you from nashville! We have a couple of Aussie's here:)...Anyway, keep us posted on your progress and thoughts.