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Bad News...

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So Meg saw the surgical team this morning for her three monthly check-up, and saw the Professor himself...

 

Unfortunately it was bad news...the progress in her hand has plateaued, and she's been booked in for the major tendon transfer surgery.

 

I'm feeling pretty cr*p, as we didn't see this coming. She's doing stuff she couldn't before (like carrying a glass of water), but apparently neither the function nor the strength has made enough improvement.

 

It has been two years since her accident, and 16 months since neurosurgery to try and repair the radial nerve, so I know we have to see it as the right way forward...but I am absolutely terrified as they prepared us for the op during the early stages, and it's major stuff with a lot of scarring.

 

Oh bollox.

 

Bid :crying:

Edited by bid

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So, so sorry to hear this :tearful:

As you say, the only way too look at this is as 'the right way forward', but that won't for a moment detract from the disappointment, fear and anguish you must all be feeling right now.

She is a brave, beautiful and resiliant kid :wub: (actually, scrub the 'kid' - I've just realised how old she is now and she would HATE me for calling her that!), and I know that as far as bouncing back is concerned she will show all the determination, tenacity and general springiness of 'flubber'. I hope the planned surgery goes as smoothly and unobtrusively as possible, with results that have her popping spinach tins like Popeye in the very near future.

 

L&P

 

BD :tearful:

Edited by baddad

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I'm sorry Bid, that's a huge blow when she seemed to be doing so well. I hope that the operation will go well.

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That's tough news. :( Hope she's taking it reasonably well and isn't too demoralised.

 

>:D<<'> >:D<<'> to you all

 

K x

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Thanks, you guys >:D<<'>

 

Just had a long phone call from her OT, who has explained everything in more detail, so feeling a bit more positive now that I know exactly what lies ahead.

 

On the very plus side, although it's obviously dependent on how well the surgery goes, she shouldn't be left with a noticeably disabled hand, compared to now. And although she won't regain 100% functioning, she should be able to do most things, like drive and so on.

 

He also says she should have two scars, between 2 and 4 cm long, so again not as bad as we were told at the first hospital.

 

We have every confidence in her surgical team, as the hospital is a centre of excellence (RNOH) and they looked after her so well with the first surgery and after-care.

 

So, here we go...

 

Bid :)

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Thanks, you guys >:D<<'>

 

Just had a long phone call from her OT, who has explained everything in more detail, so feeling a bit more positive now that I know exactly what lies ahead.

 

On the very plus side, although it's obviously dependent on how well the surgery goes, she shouldn't be left with a noticeably disabled hand, compared to now. And although she won't regain 100% functioning, she should be able to do most things, like drive and so on.

 

He also says she should have two scars, between 2 and 4 cm long, so again not as bad as we were told at the first hospital.

 

We have every confidence in her surgical team, as the hospital is a centre of excellence (RNOH) and they looked after her so well with the first surgery and after-care.

 

So, here we go...

 

Bid :)

 

That's all sounding much more positive. Still horrible and unfair, but much more positive. Let us all know when, so we can all send positive vibes for the duration.

 

L&P

 

BD :tearful:

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Sounds a bit better. :) I don't suppose you know when it will happen?

 

K x

 

Well, they said a 3 month waiting list...but then with her first surgery they phoned a couple of days later and said it was scheduled for the following week, so I'm prepared for either.

 

Also reassured today that nothing else can be done as there is a timescale for the nerve regeneration after the grafting, and if it doesn't happen within that time, the sort of 'plug socket thingy' (as it were that) the nerve goes into in the hand will have ceased to exist, so we just timed out I'm afraid.

 

Will keep you posted as and when...hopefully it will all be done and dusted before year 10 starts in September

 

Bidx

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It,ll be ok Bid kids can be terribly resilient sometimes >:D<<'>

 

...........on a completely different tangent, my dd has had a tendon transfer too...hers was her foot, they take the tendon through and secure with a button, will her wrist /arm be in a cast?....it would be usual for a 12 wk cast to let the tendon heal/fuse then they,ll simply cut the button off and ta dah !.....

 

..........seriously I know its a worrying time but its amazing what can be done all the best suzexx >:D<<'>

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It,ll be ok Bid kids can be terribly resilient sometimes >:D<<'>

 

...........on a completely different tangent, my dd has had a tendon transfer too...hers was her foot, they take the tendon through and secure with a button, will her wrist /arm be in a cast?....it would be usual for a 12 wk cast to let the tendon heal/fuse then they,ll simply cut the button off and ta dah !.....

 

..........seriously I know its a worrying time but its amazing what can be done all the best suzexx >:D<<'>

 

Thanks Suze >:D<<'>

 

Three tendons tranferred (two to replace the extensors and one for wrist rotation). 4 weeks in a cast, then two weeks in a dynamic splint day and night, then everything off and starting to get it all moving, so loads of OT again! And her brain will have to get used to making the transferred tendons do a new job, if you see what I mean.

 

Everyone is feeling much more upbeat now, and it's very good to know that there is finally an end in sight as it's been over 2 years since the original accident.

 

Bid :)

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Bid

 

Can't believe it's been two years! Horrible to have to face surgery again but if the outcome is more movement and strength, which it certainly sounds like it will be, then it's good news in the long term. You're a great Mum and Meg certainly seems to have that 'get up and on with it' attitude that will lead to a successful outcome - looking forward to reports on progress.

 

Wishing you both heaps of positive vibes.

 

Barefoot x

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Hi Bid

 

I'm sorry you're feeling disheartened,but glad you feel more positive after discussing things with the OT. I saw your post though and nearly jumped out of my chair (which would be bad today with my back!). When you say "Professor", can I ask who you have? I have a 15 year old son with Erb's Palsy in his right arm (brachial plexus birth injury) who has had very similar surgery with Simon Kay and a visiting surgeon from Sweden that I at this moment have completely forgotten the name of. I know of a couple of others who are similarly wonderful and I am betting I recognise the name of your surgeon! Small world. Chris has had exploratory surgery as a baby, including clearing off scar tissue from the nerves, and two subscapular releases. He has about 75% use of his arm now, it is slightly shorter than the other, but considering he had no use at all when he was born, that's nothing short of a miracle. He was very lucky to get a referral to Simon, hevery nearly didn't get it and if his case had been "left to heal naturally" as the community paeds wanted, he would never have regained use of his arm/hand. I know how hard it is to have them in that cast for 6 weeks and to do the painful physio so if you ever need to let off steam or anything just yell.

 

Best wishes

 

Kathy

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Thank you Barefoot >:D<<'> ...it's been a very long journey for Meg since the accident, but when I get down I remind myself how very lucky we are to have her at all, and that compared to the injuries she could have suffered this isn't so very bad really.

 

Bid :)

Edited by bid

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Hi Bid

 

I'm sorry you're feeling disheartened,but glad you feel more positive after discussing things with the OT. I saw your post though and nearly jumped out of my chair (which would be bad today with my back!). When you say "Professor", can I ask who you have? I have a 15 year old son with Erb's Palsy in his right arm (brachial plexus birth injury) who has had very similar surgery with Simon Kay and a visiting surgeon from Sweden that I at this moment have completely forgotten the name of. I know of a couple of others who are similarly wonderful and I am betting I recognise the name of your surgeon! Small world. Chris has had exploratory surgery as a baby, including clearing off scar tissue from the nerves, and two subscapular releases. He has about 75% use of his arm now, it is slightly shorter than the other, but considering he had no use at all when he was born, that's nothing short of a miracle. He was very lucky to get a referral to Simon, hevery nearly didn't get it and if his case had been "left to heal naturally" as the community paeds wanted, he would never have regained use of his arm/hand. I know how hard it is to have them in that cast for 6 weeks and to do the painful physio so if you ever need to let off steam or anything just yell.

 

Best wishes

 

Kathy

 

Oh my word!! One of the things that has been so hard has been not knowing anyone facing similar problems :tearful: Meg was knocked down by a car two years ago and a high complex break in her left humerus resulted in complete radial palsy. She had neurosurgery in Dec 2009, and they discovered the radial nerve had been caught in the fracture...cut above and below and then grafted.

 

She is under Prof Carlstedt who heads the Peripheral Nerve Injury Unit at the Royal National Orthopaedic Hospital. The whole surgical team have been awesome, and the after-care and on-going OT has been fantastic. One of the things that has made such a difference has been the fact that she has had the same OT since the surgery...he has been amazing.

 

So glad that you got the right help for Chris. I discovered a charity for children with upper limb problems called Reach, but I've felt funny about joining...do you know of it?

 

Thank you Kathy, it would be really good to chat >:D<<'>

 

Bid :)

Edited by bid

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That's all sounding much more positive. Still horrible and unfair, but much more positive. Let us all know when, so we can all send positive vibes for the duration.

 

L&P

 

BD :tearful:

 

Thank you BD >:D<<'>

 

Feeling much more positive, and ready to get on with it now...we are lucky to have such a fantastic team looking after her, and they make us feel they really care about her. She wants flower tattoos to cover up the scars!! ;):lol:

 

Bid :)

Edited by bid

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Thank you BD >:D<<'>

 

Feeling much more positive, and ready to get on with it now...we are lucky to have such a fantastic team looking after her, and they make us feel they really care about her. She wants flower tattoos to cover up the scars!! ;):lol:

 

Bid :)

 

Maybe lick and spit transfers will provide a happy compromise until she's old enough to go the whole hog? And whatever the whens/ifs, here's to the surgeons doing such a great job that tasteful little daisies will suffice. :thumbs:

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Hi Bid - sorry to come to this a bit late, and sorry to hear the news, but at least the second bit of news makes things clearer and sounds more positive :thumbs: Doctors should really go on courses on how to talk to patients as they're great at scaring peeps! :shame:

 

She wants flower tattoos to cover up the scars!! ;):lol:

What a great idea! Slightly drastic way to go about having the 'Mum I want a tattoo' conversation, though... :rolleyes:

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Thanks Mumbley, and everyone else >:D<<'>

 

Not such a brilliant day...we saw her OT, who went right through the surgery which was hard to hear about.

 

On the downside, he showed us the different movements she will have to make with her hand for the transferred tendons to move her thumb and fingers, although over time these will become more subtle. The hardest thing for me at the moment is the fact that she will be left with a smaller hand and forearm than her good hand and arm, as it's never going to be possible to repair the muscle wastage. I keep thinking about wedding photos, which is absolutely ridiculous, but you know how your mind fixates on small details :wacko:

 

So, although I know how lucky we are, just a down day... :tearful:

 

Bid :unsure:

Edited by bid

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Yes, I can quite understand why you feel down. As much as you think about how much worse it could have been, it's still not fair that she's having to go through all this. >:D<<'>

Maybe once the treatment is actually underway it will be easier to bear, sometimes it's the waiting around and anticipation that is worse then actually getting on and dealing with it.

Wish you all the very best for a successful outcome without too much pain, both physical and emotional, for all of you. >:D<<'>

 

~ Mel ~

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[ >:D<<'>

Sorry to hear your news...sending you cuddles and hugs xx

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Bid. As someone with a weaker limb we get by...dont worry :) And , your fixation... the wedding photos?... but she will have sorted out how to put her arm round someone elses by then...a long practiced strategy option for if she wants it What to do with an arm will be less problem to her than you would have with a spot on yours. Certainly wont spoil her day. atb :) Mark

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Thank you Mark for the reassurance, it's very hard when it's something so completely different.

 

Thanks Tally, at least the waiting is over!

 

Bid :)

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>:D<<'> >:D<<'> for you both.

 

At least you have a date now.

 

K x

Edited by Kathryn

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Well, pre-surgery clinic yesterday...15 days to go and I feel :sick: and keep :tearful:

 

Sigh...just wish it was over and done with...

 

Bid :wacko:

Edited by bid

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The waiting must be awful. :tearful: Hope the 15 days go quickly for you and it'll soon all be over and done with. >:D<<'>

 

~ Mel ~

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Thank you Mel and Karen >:D<<'>

 

My Meg very teary now.

 

Bid :(

 

Not surprising. It must be very scary :tearful:

If crossed fingers and other extremeties have any power at all she'll be playing tennis like a pro in no time.

Keep us posted.

 

L&P

 

BD :tearful:

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Can't imagine what it's like to be going through this as a parent. :(

 

>:D<<'> >:D<<'> to Meg and to you all. If you'll excuse the awful pun, she's in the best hands.

 

K x

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Hi Bid

 

I am sorry that I didn't catch up with this thread when it was first posted.

 

I hope the operation goes well.

 

Simon

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Thank you all >:D<<'>

 

Meg at home today as she is feeling sick, but I think it's nerves. Tomorrow we have a meeting with the Hospital and Home Education service from the LA, as she will be at home for 4 to 6 weeks after her surgery. The school/LA have been really good with this, and have offered extra help for lessons with regard to any aids she might need once she is back at school.

 

But...on Friday a little, little boy (only 4) from my youngest's school was knocked down by car just two roads away from us (where we used to live) and yesterday he died :tearful::tearful: I can't put into words how we all feel, it's like looking at the alternative outcome for us 27 months ago. Just unimaginable for the poor, poor family.

 

Bid :tearful:

Edited by bid

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Very, very best for tomorrow :pray:

 

As for the other part of your post, words fail me. I really, really don't know how people get through something like that. :tearful:

 

L&P

 

BD

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Hope the H&H meeting went well. I'd be interested to hear what's on offer from this service nowadays.

 

Sorry to hear about the little boy. :(

 

K x

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Hope the H&H meeting went well. I'd be interested to hear what's on offer from this service nowadays.

 

Sorry to hear about the little boy. :(

 

K x

 

They have been extremely nice and forthcoming over meetings, but won't actually be pinned down to anything concrete until they get a letter from the consultant following surgery ;) I have a feeling they will probably try to wriggle out of home tutition, as it's the last half of the summer term, although I was pushing for maths and the three sciences. We shall see!!

 

What she did offer were lots of 'ideas'...both Meg and myself were too polite to tell her that Meg really wasn't going to want to do a power-point presentation to her year on her surgery!! :o But very kind and well-meaning.

 

Bid ;)

Edited by bid

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