I have good and bad news too...

[aussigal]

and just to keep you entertained all-day

I am going to wait a little while til I post this report on my "2nd opinion" visit because I know you guys already have a ton of answers on this so I need to do my homework to catch-up

so time for coffee and choccy biscuits or whatever it is you fancy while I do some re-checking of my research to get up-to-date!

 

[Ross]

Your so mean!

 

[aussigal]

Ok..part one:..
some of the good bits well the ones I can remember

This cardioligist I saw today for a second opinion is familiar with cases like mine in-fact he has 2 specific cases at the present time the very-same as mine.
He is ordering immediately re-scans etc of the whole lot including ALL the aorta and associated bits where anerysms can pop up and then is sending me off to meet with the surgeon for a consult so we can all then discuss when exactly is the best time to cut!

this surgeon also happens to be the children's specialist as well so he will see them too if need be and this cardio has a special peadiatric one in his pratcie as well...talk about a stroke of luck,,,I nearly didnt bother going to see him but oh boy am i ever so glad I did..
now you will have to wait for morning for the next bit cos its too long to type now...my back is aching madly and i'm tired...i have hydro-relaxing as i call it in the morning then another scan, I am almost bored by them after these last two weeks .

If i remember I shall pop up part two of the visit and the most interesting part of all..well i reckon it is!..

goodnite all
siging out
from perth Australia

 

[aussigal]

because I cant sleep..I shall see how far I get relaying the less-tan-good-news

My first cardioligist missed a few things.
Clearly seen on this CT of the Thoracic Aorta only (not the whole length )
you can see another aneurysm at the beginning of the descending aorta, he also wants to see where else they are hiding we are especially checking the brain and abdomen because of my symptoms.

Now also...within seconds of sitting down to begin our appointment he mentioned the "M" word...MARFANS !...asked me if I had heard of it , I confessed I had often thought I was "Marfan-like" and my dad was the Typical-Image of a Marfan and had happened to die a sudden-death at 38 as had his father at 52..
Well Dr Jo leaned over smiled warmly and held his hand out and said"congratulations, but sorry because yes your'e right you are a Marfan !" I could not be in better hands now...He has arranged an appointment with the surgeon as well,..and was thrilled I had already made an appoitnment at the genetic joint in 3 weeks time.
He said I was right to be scared but that these casualties usually occur when you dont know about your aneurysm which is why he is fast-tracking all my tests so we can quickly get an accurate view of the size and urgency involved here of everything and get it fixed as soon as is possible.
YIPPEE!


now I know why this 2nd appoinment had been nagging me ...it was destiny...this is my MAN...sorry Ross, but you come in right up the top too mate,,,gees its hard when youre the mum of 3 sons as well...ok...youre most definately in the top ten... you can only be #1 if you come over and bring me flowers in hossy when I have my surgery

I shall know more tomorrow after my next scan and I am taking Mum along with me as she hasnt seen one yet and is interested to learn what is ahead for the 4 of us.

 

[PaulW]

My word!

My word!

Congratulations on getting a proper diagnosis and doc at last!!! Now it appears that your doc is on top of things. I wishing you a lot of luck with your brain and addominal diagnostics and hoping that everything comes out well. So sorry that more issues have been found though. My wife (she reads the forums and we talk about and discuss everything and everyone together) and I will be hoping for the best for you and your children. My wife and I have been struggling with our only grandson's very serious illness and it seems, as of yesterday, that finally the docs have discovered what is wrong with him, and now there's this sense of relief coupled with a lot of worry about the future and treatment, etc. Must be a little similar to what you are going through. Blessings and Best wishes.

 

[Karen]

Although the news isn't particularly cheery, I am impressed with the diligence that your new cardio is taking in learning all that he can about you AND your sons. The knowledge you will have about all of this will only serve to provide a much brighter future for you all.

Thanks for keeping us posted. 'Hope you can get some sleep after all the scans!
Karen

 

[Curtsmum]

Wow i don't know what to say. seem like a lot to take in there, all the best to you and your boys.Hope you get some better news after your next scan, look forward to hearing from you, take care and i wish you the very best of luck

 

[Georgia]

Only here would we rejoice over such a result!!!!

Thank God you're finally getting some answers, and that you had the fortitude to fuss until you found a good doctor. Hold on to this one - what a gem!

I'm sure all this is worrisome but not nearly as bad as the struggle to find out why you felt poorly and listening to the half-baked answers you've received from your previous docs.

Hang in there, kiddo.

 

[PJmomrunner]

Well, hallelujah! Congrats to you! It seems you have found the rare Medicus Quaeritare--the eagerly enquiring doctor!

 

[aussigal]

Only here would we rejoice over such a result!!!!

.

EXACTLY! LOL...

what a funny-bunch we are rejoicing in horrible Diagnoses ...

well we know how great it is to finally be getting the right answer...
I imagine many of you are like me having practically worn-out your welcome at the local doctors

but at least now we have a really really excellent guy who is amazingly helpful and even E-mailed me personal doctors' notes regarding thelatest info. on Marfans!

Now I feel SAFE! .

the 3 boys are looking forward to meeting Luigi who is the kids' specialist Cardioligist .

now for a relax in the hydro pool before my exam!...lol
glad I dont have to study for these tests ,,my brain is like a sieve at the moment


more news when I return.

 

[aussigal]

Ok...
my next adventure is to Murdoch cardiology centre for that huge cardiac MRA tunnel thingy (with contrast of course ) at 8.45am on wednesday...

Had a really spunky male technician do my echo today ...shame he was a bit young for me...
and I am rather attatched to my dear hubby of 22 years, hes like part of the furniture.

And I forgot again...a huge enormous thank-you and big hugs to all you guys for your continued support...thank God I decided to go for the second opinion...cos I nearly cancelled it and stayed with this other guy but something kept nagging me,,,must have been all of VR's ESP messages !...lol...they got thru!.

much love
ton

 

[Karlynn]

It probably seems to the untrained observer that we rejoice at bad diagnosis, but in truth, we are celebrating the finding of something that, had it gone on undetected, could have ended rather poorly - to put it mildly.

Also - I thinks it's celebrating finding doctors that seem to be worth their salt.

Aussie - so congratulations on your wreck of a body! (Oh, just kidding)