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Newly diagnosed Aussie - incl post surgery update! (Read 10256 times)

Womble

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Adelaide, Australia, australia, 219, 260, SA, South_Australia
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Newly diagnosed Aussie - incl post surgery update!
Jun 18^th, 2008 at 9:32am

Hello all

I was very pleased to discover this website today after my diagnosis with Moyamoya disease. Not pleased about the diagnosis, but pleased to find some understanding people!!!

A quick run-down of my story...

I am a 34 year old female from Adelaide, South Australia, and it is believed I have had MM for at least 2 years, after a mild stroke which left me with persistent right hand side headache, left hand side facial paralysis and speech difficulties for about 2 weeks or so.

At the time I was in a hugely stressful situation, having just brought my very ill daughter home from the hospital 6 months after she was born. So the symptoms were put down to an "atypical" migraine headache and, as they mostly disappeared (not totally, I still struggle with some of my speech)... I went without following it up any further.

2 years later and I have had 2 or 3 other episodes that have put me in emergency, nothing major, just the speech problems, facial numbness, left hand side weakness, but enough to scare me. Again it is a very stressful time in my life as my husband and I have just separated, and I am coping with a child with special needs at home by myself.

After the neurologist ordered an MRI, CT and cranial angiogram I finally have the MM diagnosis as of today. Evidently out of all the neurologists at one of the major teaching hospitals here in Adelaide, only a handful have ever come across MM.

They say that MM for me seems to be "mild" as in I have not had a major stroke yet, but they can't rule one out! Scary! They also have no idea about surgery, as in the risks vs the benefits in cases such as mine. I feel quite lost as no-one seems to know what to do, or what to advise... I suddenly feel as though I am left without any options. I have no idea if the surgery is even an option in my city.

I feel worried about being the sole carer for my little girl should something happen to disable me, such as a major stroke. I have no family support.

Do any of you know of any surgeons or neurologists in Adelaide, South Australia who are familiar with this disease and the surgical options? I know it is a long shot but maybe there is someone who can find this information out, as I have not had any luck with google.

Thanks in advance for any info, or any support, and for reading through this marathon post!!!

Kylie

***Please note I have a post surgery update in the replies....***

« Last Edit: Aug 7^th, 2008 at 11:40pm by Womble »

Successful STA-MCA bypasses - performed by Professor Marcus Stoodley, Sydney Australia&&16th July 2008 - Right side&&30th July 2008 - Left side&&I have my life back, and it's wonderful!

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Mar

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Re: Newly diagnosed Aussie
Reply #1 - Jun 18^th, 2008 at 11:32am

Hi Kylie,

Welcome to our MM family!

Your post wasn’t a marathon post at all. The more info you give us, the better we understand your situation and can help you better. I just wish to God I could give you the name of a doctor in your area who is experienced with MM, because IMO, from what you’ve posted, it’s vital you get treatment ASAP, but unfortunately even here in the USA, we have a limited amount of doctors who are experienced enough with this rare disease.

I noticed we have 15 members here from Australia who registered on the “member map” but the closest to you seems to be in Melbourne and they didn’t post any medical facility or doctor information, to my knowledge. There is a doctor from Sydney mentioned under the “Surgeons with bypass experience” section, but I’m sorry to say that’s all I could find. We have a few members here from Australia who said they had a good MM surgeon but I think they’re much further away in Perth, WA, Australia.

My advice to you is to please keep searching. Call every neurologist/neurosurgeon, stroke facility you can find and ask if they can recommend and EXPERIENCED MM neurosurgeon. You can’t have a mild case of MM with the episodes you’ve described. With MM you’re not getting the proper blood, oxygen and nutrients to your brain or you wouldn’t have experienced what you have thus far. This is a progressive disease; it gets worse over time, so prompt treatment is vital! With MMD you know a stroke is coming, you just don’t know when. All that’s happened so far IMO are warnings of a pending stroke. I’m not trying to frightened you but rather educate you to the importance of treatment ASAP, because surgery is the ONLY treatment for MMD, but the good news is, this is a treatable disease!!!! But they key to success is getting an experienced MM neurosurgeon who will know the proper approach for your particular case.

If you research it you’ll find that the major pitfall we see everyday is delay of treatment. The "risk" they speak of is more about their LACK of knowledge of MM, rather than the actual risk to the patient. Don’t get me wrong, I’m not a doctor and I don’t know your specifics, but I do know that I’ve seen people wait when their doctors aren’t experienced with MM and end up with a devastating stroke or hemorrhage, so I’m only urging you to get the advice of an experienced MM neurosurgeon so that won’t happen to you.

If you have any questions or if we can be of any help, please don’t hesitate to ask. No question is too small. We have a wonderful group of people here, we’re like family and want you to know you’re not alone.

I’ll definitely have you and your daughter in my thoughts and prayers.

Mar

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Womble

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Adelaide, Australia, australia, 219, 260, SA, South_Australia
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Re: Newly diagnosed Aussie
Reply #2 - Jun 19^th, 2008 at 7:06pm

Thank you so much for your reply Mar.

You have really helped inspire me to keep searching for the right treatment, and not just rely on the limited information I have been given thus far.

After 4 or 5 years of poor health (possibly much of which related to undiagnosed MMD), you begin to feel like a hypercondriac and at least now I can see a light at the end of the tunnel! (I just wish it was better understood by the medical community here in Adelaide).

From my research yesterday it seems as though, should the surgery not be offered in my own city, being part of the public system, they will fly me to the nearest available city and experienced MM surgeon to be treated. There are two I have been in contact with interstate who are willing to look at my angio/CT/test results and give their experienced opinion, so I am making progress!

Anyway, thank you for you kind words, thoughts and prayers. I appreciate them so much. I have so much to live for and I want to make sure my little girl has her Mummy for a very long time yet!!

Kind regards Kiss

Kylie

Successful STA-MCA bypasses - performed by Professor Marcus Stoodley, Sydney Australia&&16th July 2008 - Right side&&30th July 2008 - Left side&&I have my life back, and it's wonderful!

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Mar

Ex Member

Re: Newly diagnosed Aussie
Reply #3 - Jun 19^th, 2008 at 9:32pm

Amen Kylie! I too wish MM was understood better by the medical community, both there and here in the USA. That’s why I’m so proud of you and commend you for researching it further. Everyone I know who has had successful treatment for this rare disease has had to be aggressive in some way to get it. Atta girl!! You’re definitely on the right track.

I’m so happy to hear you’re getting a second, perhaps even third opinion, that’s very wise!! The more you learn about this disease the more confident you’ll feel in your decisions and it will be less likely anyone will be able to steer you in the wrong direction like we see so often.

I knew my prayers were answered when you said you’d have some help getting to an experienced neurosurgeon, that’s definitely making progress! I can’t ask for more than that.

Your precious little girl sure does need you, and from the way you’re handling all this, the outlook is EXCELLENT that you’ll be around for a long time for her! God love ya!

My continued prayers will be with you both. Smiley

Would you keep us posted??

Mar

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Womble

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Adelaide, Australia, australia, 219, 260, SA, South_Australia
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Re: Newly diagnosed Aussie
Reply #4 - Jun 25^th, 2008 at 5:18am

Hi Mar, and everyone else

Well I am well on my way to getting the surgery sorted out. My neurologist sent all my test results and a clinical summary to Professor Marcus Stoodley in Sydney (about 2 hour flight from where I am). He has contacted me already and discussed me getting a SPECT scan done (here is Adelaide), after which he will organise surgery ASAP.

I will have to fund the travel myself, and pay any gaps he has (or the hospital has) as Prof Stoodley only sees private patients (the public medical system here makes it so hard for doctors to practise with lack of funding, resources, staff etc.). If I was a public patient, I would be eligible for travel expenses to be paid, as there are no surgeons here who are familiar with MMD. But I will find a way, as I am sure everyone in this situation does.

So that is my update, I will post more once I have the SPECT results and know when the surgery is.

Thanks for listening! Wink

Kylie

Successful STA-MCA bypasses - performed by Professor Marcus Stoodley, Sydney Australia&&16th July 2008 - Right side&&30th July 2008 - Left side&&I have my life back, and it's wonderful!

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Mar

Ex Member

Re: Newly diagnosed Aussie
Reply #5 - Jun 25^th, 2008 at 2:14pm

Thank you for the update Kylie. It’s good to know you’re on your way to getting some answers and treatment. I don’t know anything about your health care system, but I do know it’s a struggle any way you look at it and I want you to know you’ll be in our thoughts and prayers the whole way. God love ya for being so strong!! Sometimes we have to play the cards we’re dealt. Just know we’re right by your side and rooting for you to win! Smiley

Please keep us posted.

Mar

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Emily

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Diagnosed Oct 2005. Direct
bypasses: Nov 05 Apr
06

Posts: 259
Brisbane, Australia
Gender: female

Re: Newly diagnosed Aussie
Reply #6 - Jun 30^th, 2008 at 9:01am

Kylie, I just sent you an email. Also in addition to that I was a public patient, even though Mr Laidlaw generally works in private, when he heard about my case he jumped on board. But yeah I would definitely recommend staying public, wont cost you a cent and the travel costs wont be that great. However Mr Laidlaw wouldn't let you fly back straight away, that's if you get a direct bypass anyway, so you might have to catch a train or bus? And the type of sugery will depend on the severity of your stenoses (how "blocked" the arteries are).
Emily

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Womble

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Adelaide, Australia, australia, 219, 260, SA, South_Australia
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Re: Newly diagnosed Aussie
Reply #7 - Jul 1^st, 2008 at 8:56pm

Hi all

Thank you for the info Emily! I have managed to find a surgeon in Sydney who is quite experienced in treating MMD. He has had a lot of success with the bypass surgery and so I feel confident that he is the right guy for the job!

I am booked in for surgery on July 16th, and then if required, for the second side on July 30th. In between the surgeries I can stay with my Dad who lives in Sydney. I feel so fortunate that I have learnt so much from all of you and was able to assert myself with my neurologist and say "No, I am not willing to wait, I want the surgery asap!". The surgeon didn't have a problem with that at all.

I'll keep you all updated as I can. I have a SPECT scan with and without diamox today, should be interesting!

hugs

Kylie

Successful STA-MCA bypasses - performed by Professor Marcus Stoodley, Sydney Australia&&16th July 2008 - Right side&&30th July 2008 - Left side&&I have my life back, and it's wonderful!

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Emily Senior Poster Offline Diagnosed Oct 2005. Direct bypasses: Nov 05 Apr 06 Posts: 259 Brisbane, Australia Gender:	Re: Newly diagnosed Aussie Reply #8 - Jul 3^rd, 2008 at 11:45pm can i ask the name of the surgeon in sydney? i know someone who's small boy was operated on in sydney for mm only a month ago. p.s i still can't comprehend how so many of you had your surgeries so close together! wow...
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Womble New Poster Offline Posts: 14 Adelaide, Australia, australia, 219, 260, SA, South_Australia Gender:	Re: Newly diagnosed Aussie Reply #9 - Jul 4^th, 2008 at 8:28am Hi Emily - It is Professor Marcus Stoodley. His protocol is the surgeries generally 2 weeks apart if both are required. I actually learned about this surgeon from a recommendation from this website. Cheers Kylie
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Lore

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My brother Kevin (Cubbie)
has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female

Re: Newly diagnosed Aussie
Reply #10 - Jul 4^th, 2008 at 10:50am

Hi Kylie,

Welcome to the site and I apologize for not posting sooner.

You do have your hands full and it saddens me to know you have little or no support in such a time of need but know we are here for you and will support you the best we can from far away.

I'm elated to know you are on your way to surgical treatment for your MM and I will be thinking of you on July 16th.

Please keep us posted on your progress and let us know your spect scan results.

Hang in there and stay positive and strong.

Hugs,

Lore

"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson

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Emily Senior Poster Offline Diagnosed Oct 2005. Direct bypasses: Nov 05 Apr 06 Posts: 259 Brisbane, Australia Gender:	Re: Newly diagnosed Aussie Reply #11 - Jul 4^th, 2008 at 10:15pm sweet yeah prof stoodley is who operated on the person i know as well. and he's done very well. yeah most people seem to have their's two weeks apart.. just surprises me as mine were 5 months apart, but i was in a pretty fragile state! good luck! are you having direct or indirect bypasses?
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Womble

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Adelaide, Australia, australia, 219, 260, SA, South_Australia
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Re: Newly diagnosed Aussie
Reply #12 - Jul 4^th, 2008 at 11:07pm

Hello everyone Cheesy

Thank you for the welcome Lore, I have already benefited from your knowledge and experience with MM by reading many of your posts, so please don't apologise.

I will have my mum come to Adelaide from the country town where so lives, to look after my little girl while I fly to Sydney for the surgeries, and my Dad lives in Sydney, so he will see me when he can. So I do have some support at this time, just not immediate support in my home town. I will definately be relying on any support the MM family has to offer as well, though!!

To answer your question Emily, I am having both sides done as sta-mca bypass, unless when he sees the SPECT results (should be this coming week he receives them) he changes his mind. I had the SPECT done with diamox last Wednesday, and will have the one without diamox this coming Monday. The diamox made me feel like crap for a good 24 hours afterward, but was nothing compared to how crappy the cranial angiogram was. Yuk. But it's all for a good cause Undecided

Anyhow, thats all the news I have, until I fly to Sydney on the 15th of July.

Take care all!! Cheesy

See you on the flip side....

Kylie

Successful STA-MCA bypasses - performed by Professor Marcus Stoodley, Sydney Australia&&16th July 2008 - Right side&&30th July 2008 - Left side&&I have my life back, and it's wonderful!

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Emily Senior Poster Offline Diagnosed Oct 2005. Direct bypasses: Nov 05 Apr 06 Posts: 259 Brisbane, Australia Gender:	Re: Newly diagnosed Aussie Reply #13 - Jul 5^th, 2008 at 3:13am yeah diamox made me really sick too! the last time they wanted to do it i refused! but yeah.. angiogram was probably one the of worst experiences in my life! wouldn't agree to one of those again in a hurry! good luck then.
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Womble

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Adelaide, Australia, australia, 219, 260, SA, South_Australia
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Re: Newly diagnosed Aussie
Reply #14 - Aug 7^th, 2008 at 11:38pm

Hi all

Just wanted to let you all know I had successful STA-MCA bypasses done on 16th/30th July and have just flown home yesterday after 3 weeks in Sydney.

I cannot praise my medical team enough - Prof Marcus Stoodley, Prof Michael Morgan and the specialised ICU/nursing tream at Dalcross Private Hospital.

I will write more later but just wanted to say I feel FANTASTIC, better than I Hvae for many years. ; Grin

;

hugs

Kylie

Successful STA-MCA bypasses - performed by Professor Marcus Stoodley, Sydney Australia&&16th July 2008 - Right side&&30th July 2008 - Left side&&I have my life back, and it's wonderful!

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Mar Ex Member	Re: Newly diagnosed Aussie - incl post surgery upd Reply #15 - Aug 8^th, 2008 at 12:44am Hi Kylie, That’s wonderful news!! Thanks so much for the update. I’ve been so worried about how everything went. As usual, my prayers were answered. Looking forward to hearing more from you once you’re rested. Hugs, Mar
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lotsofkids

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Moyamoya...Oh boya boya!

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Akron, USA, usa, 421, 123, OH, Ohio
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Re: Newly diagnosed Aussie - incl post surgery upd
Reply #16 - Aug 8^th, 2008 at 2:10am

All I can say is THANK GOD! and reading your story just gave me goose-pimples all over! I am so glad you can here and hooked up with the dear folks on this board!

I walked your shoes just 2 years ago....and I too, stumbled in here and was met with love and support....and oodles of great information to keep my dizzy head spinning more LOL! But most of all....armed with information....it was all a bit less frightening and knowing I actually had options and people had decent results and productive lives post surgery....gave me a lot of hope. I am just shy of my 2 yr anniversary at the end of this month.....I went to Dr Steinburg in California and did both STA-MCA bypass's 5 days apart! We originally thought I was about 75-80 occluded...but surgery proved I was actually 100% blocked on both sides and having negative "reverse" blood flow! I guess if you can be "worse" than 100%, that is it!

Both my surgeries went perfectly and uneventful and I am truly blessed. I am also so very deeply grateful for the people on this site and for all their sincere and unselfish support and friendship. They will always be the light in the dark memory of my diagnosis. I will forever have a special place in my heart for my MM friends! My family just doesn't get it.....they never will....but the bond with another MM'er is something only "we" understand!

keep us posted on your progress! hugs to ya...diane : )

Hmmm....seems I'm kinda "special" LOL

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mc823923 Junior Poster Offline My dauaghter Annamarie lives with mm Posts: 83 Baton Rouge, USA, usa, 345, 271, LA, Louisiana Gender:	Re: Newly diagnosed Aussie - incl post surgery upd Reply #17 - Aug 8^th, 2008 at 6:59am Womble, Great to hear everything went well with your surgeries. My daughter had her first in October and will return to Stanford in April for follow-up and possibly surgery on the other side. My mother was a war bride from Australia. Again, glad everything went well. Love and prayers, Margaret
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Lore MM.com Benefactor Offline My brother Kevin (Cubbie) has Moyamoya Posts: 819 Delaware, USA, usa, 419, 133, OH, Ohio Gender:	Re: Newly diagnosed Aussie - incl post surgery upd Reply #18 - Aug 8^th, 2008 at 7:36am Hi Kylie, Wonderful fantastic news! I too have been thinking about you and am so glad to hear you did well in Sydney. Definately get some rest and I will watch for your updates. Hugs, Lore
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Audge Experienced Poster Offline Daughter Emily has MM Posts: 107 Armada, USA, usa, MI, Michigan Gender:	Re: Newly diagnosed Aussie - incl post surgery upd Reply #19 - Aug 8^th, 2008 at 11:08am HI, I am so glad for you and your family that everything went well!! Audrey
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LA Senior Poster Offline Moyamoya survivor since 1999! Posts: 334 Kneeland, USA, 15, 113, C Gender:	Re: Newly diagnosed Aussie - incl post surgery upd Reply #20 - Aug 8^th, 2008 at 11:56am Kylie~ Big HUGS and congratulations on realizing you have mm and getting it attention! Love goes out to you and your daughter. I had surgery with Dr. Steinberg in 1999. Linda A.
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patch

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NEWCASTLE, Australia, australia, 325, 238, NSW, New_South_Wales
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Re: Newly diagnosed Aussie - incl post surgery upd
Reply #21 - Aug 28^th, 2008 at 8:04am

Hi Kylie

Really happy to see all going well. I wish I had known you were at Dalcross - I could have visited you (I'm only 2 hours from there).

(I had a 5 week "holiday" there in 2005 , with Prof Morgan looking after me).

Looking forward to keeping in contact (whether via this forum, email or facebook).

Keep safe - talk soon

Helene

xx

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