November 17. Less than 2 weeks!

Had an appointment yesterday to discuss things with a Nurse, Anaesthetist and Surgeon... to go through all the details, risks etc.... (Yep heard/read it all before)....
And at the end of each discussion they all said "Pretty scary hey?"... and I'm like... "hmmm yeah I guess".... they all think it's quite strange how calm I am, should I be worried??

I also spoke to Emma, another moyamoya patient in Melbourne, yesterday and she couldn't believe how not-worried I was, and felt sorry for what I'm going through... hmmmmm, am I missing something?

I'm worried about cutting off my dreads :( and I'm going into this thing as healthy as possible, but I figure the actual surgery is completely out of my hands and there isn't any point worrying about something you can't control... would just stress me out and from recent experience stress at the moment is kinda a silly idea... i was a little upset to find out i have to take off my jewelry... a few friends made me some very special peices - one containing a large piece of Chrysocolla which is a crystal that aids in healing blood disorders, and another containing Amethyst and Rose quartz - which both aiding in healing the brain..  :D very fitting all round.... but oh well i'll keep them close to me somehow...
and i'll be well prepared for the week in hospital this time, all sorts of assorted coloured hangings will be tucked into my bag  [smiley=laugh.gif]

but apart from all that, anything i'm not thinking of?

Hi Emily,
            Sorry to hear that you was diagnosed with moyamoya, however great to know that you are preparing for you surgery. If i'm not wrong, you will get it done in Melbourne.... i will certainly keep you in prayer and knowing the Lord will carry you through your operation nicely.



yvonne (fm s'pore)

Congrats on the surgery date. I hope everything is smooth sailin ;) Don't forget books an stuff to pass the time ;;D Keep us posted on how everything goes. Best of luck to ya [smiley=thumb.gif]

Hi Emily,

So great to hear that you have a firm surgery date set.  You know, your positive and "calm" attitude is an asset.  ;;D Like you mentioned, added stress is not necessary, nor will it help your health situation.  I did not go in to my surgery with the best of health either...but hey, who plans for something like this?  This just was a wake-up call for me that I need to take better care of myself..and that life is too short.  

I applaud you for your continual positive outlook regarding this very frightening situation.  You are very inspiring to others who have also been recently diagnosed.  Please continue to keep your spirits up and let us know about your progress.  I know that you'll do just fine, Emily.  You've got the right attitude/spirit!  ;)

Take care,
Shan

Emily,

Great news on the surgery date. It is usually the "waiting" that is the hardest. ;)

Should you be worried? Why? What's the alternative?

Also, you have educated yourself, you have listened to other MMers stories and know it is different for everyone. You have been very thorough and asked all the important questions. You have prepared yourself. You also have a very positive attitude and I believe attitutde is everything. You know that old saying "Is the glass half empty or is the glass half full"?

You know the risks with and without the surgery. You also know the risk of everyday living . As others have said, any of us could get hit by a bus. You hit it on the nose when you said the surgery is out of your control so why would you worry about something for which you have no control. [smiley=thumbsup.gif] You also have doctors who are familiar with MM. That's a plus in itself.

If you think you should worry, just exactly what would that worry be?

You probably have no answer because you have done your homework and done it well. You have removed the unknown.  The only posssible negative I see is that once you have the surgery and can once again do the engineering math equasions, you might have to go back to engineering!! [smiley=crackup.gif]

Hopefully, you won't have to be concerned about your dreadlocks either. Hopefully, it's like in the States, wherein they only cut the hair where they have to make the incision and it is usually in between hair above and below the incision. So if you have long hair, it will fall over the incision and cover it up. Yeah!! More good news and one less thing you have to be concerned with.

You keep the positive attitude and you will do just fine.

My motto:  One can get busy living or one can get busy dying. It's a choice.  It 's obvious to me you are busy living.  [smiley=shore.gif]

You will continue to be in my thoughts and prayers.

Keep us posted. I suspect Em will let us know how you are doing.

Hugs, [smiley=hug.gif]

Lore

 

::)Hi Emily good luck with your surgery, you'll have a lot of prayers from the MM family here.
Just one thing,  The Anestesia is a very important part of any MM surgery so a Nurse, Anaesthetist just wont do.  
  Please call your doctor and demand that you have a certified Neuro-anestisiologist for your surgery.  I can't tell you how vital that is.

Take care and we'll be praying for you.  

  Tom G.

Dear Emily Orange Blossom!!!
Hang in there. Do what Tomg suggests and talk to doc about anaesthetist. I love how Lore says oops might be able to do engineering maths again. But of course you will. When all this is over it will be just like we said - with all that blood rushing through your brain again you'll be scarily smart!! ;;D
love and wishes from everyone here - Cec, Judy Darcy, Mary, Daddee, Welwyn, Sue, Leslie, Holly Hops, and especially Mummee :P

Hi Emily
Good to hear that your surgery has been scheduled. I am also glad to see that you are keeping in touch with Emma - she has just had one of these muscle grafts done and seems to be recovering well.

As Lore said they will only shave a bit of hair off and afterwards it does cover up very quickly. I too, have long hair and it wasn't a problem. The only problem I have still is getting my hair back to good condition as the anaesthetic stays in your hair for a long time.
Also as Tom says, anaesthesia is very important - the CO2 levels have to be kept on the elevated side, but I am sure they will be aware of this - if not, tell John Laidlaw to converse with Emil Popovic in Perth.

Best of luck with your surgery- I know that it will all be fine
Moira

thanks mum :) seeya next week.

and thaks everyone too, a lot of what you said made sense.... i guess the staff don't realise how much over the last 2 weeks i have pored over this board ;) and website and talked to as many people as i can to make sure i know exactly what i have "gotten myself into".... so yeah, there's not really much i could be scared of because i know what's going on.

i'm a little confused about the hair thing... i've been told a lot of different things by a lot of different people... don't they have to make a big T shaped intersection going a fair way up-over your scalp? and they have to be able to feel where the arteries actually lie (and that's difficult under dreads!) and they have to be able to fix dressings to your head and change them frequently? i dunno.... hmmmm.. i don't really want to end up with half, or nearly half a head gone.. and i have to know which ones to cut off before i go in cause i'm keeping them!

and don't worry tom and mum, i did speak to the Anaesthetist yesterday (who isn't the one doing my surgery) and asked if they were aware of the added complications on anaesthesia for MM and yeah they are. Dr Laidlaw has done a lot of these surgeries (3 a year recently - which is a lot for australia's small population), used to live in the US and originally trained from a japanese surgeon.. so it'll be sweet.

Emily,

I don't know if someone else has experienced a "T" shape incision but I haven't in my dealings with MMers. I personally know and have personally met a lot of MMers on the board and many have long hair and they still have long hair and to the best of my knowledge, none of them had a "T" shape. But hey, I may have missed a post or two.

What I don't know is if it is different for dreadlocks in terms of testing etc. I would call and ask the staff at the hospital if your deadlocks will be an issue. If so, what is the best way to go about preparing for your surgery without cutting off your locks. If none of them have locks, I would stress to them the importance of your locks and how long it takes to grow them.

I would like to think if your locks were a problem they would have mentioned it to you by now?

I have a friend in the States who has very long dreadlocks and he said it took him a long time to grow them.  They look really great on him so I understand your concern and especially if it takes a long time to grow them. If it is such a thing you have to cut your locks (God Forbid) you could start a new fad you know. I don't know exactly what that new fad would be but I'm sure you will think of something.  [smiley=laugh.gif]

Laying all jokes aside, I would simply ask the medical staff and then you will know. You should go to surgery with peace of mind and that includes answers about your locks.

Keep us posted.

Hugs, [smiley=hug.gif]

Lore  

Hi Emily,

Best of luck with your surgery.  We are all here for ya!  Just give a holler and I'm sure someone will respond.   ;;D

It sounds like you have everything right on track and kudos for getting things set up and running so fast!  That has always been my motto...  When somethinglike this comes along and you know what needs to get done - get it done!   :D  It's not necessarily the easiest choice sometimes, but I honestly think it's the right one.

Please know that many of us will be praying for you and we look forward to hearing from you and the awesome success story of your post-op adventures!   [smiley=laugh.gif]

-= Dewski =-

Hi Emily,

I've read a couple of your postings and you have made me smile on a very stressful day...we leave tomorrow for Swedish Medical for Bill's examine and surgery.

I'm hoping they will have some sort of internet connection and I'll stay in touch.

Good luck with the surgery....and the dreds!!!

Best wishes,
Cindy

PS....Thanks for the smiles  :)