Sarahs Mum aka Chrissy
29th November 2004, 05:29 PM
At last we now have a list of answers from our surgeon. It has taken long enough though. On the occasions that we've phoned up, his secretary always puts us off, and we never get any answers, very frustrating!. So this time we sent an email.
His reply to our questions:

1). He will be performing a costoplasty on Sarah, as he says it provides a source of bone graft material as well as reducing the size of the rib hump.

2) The fusion will arrest growth in the spine. As far as Sarah is concerned, although she has got some growth potential most will be in her limbs.
He doesn't think height loss or gain is a major issue at Sarah's age.

3)They will limit the spinal fusion to the area of the curve. Generally to try and keep it as short as possible. (This doesn't tell me much - i.e where she will be fused from etc. )

4) They will use titanium implants which consist of a combination os screws, hooks and rods.

I realise that this letter is a very basic letter, and feel that in some ways patronised
by him. He has told me basically what I asked for, without going into any great detail.
I have now emailed him to ask him to speak to us on the phone (God forbid!). I feel corresponding through letter/email is not good enough. as I have answers arising from the letters each time. :nut:
If any of you have some good advice, as always it will be welcomed!!

29th November 2004, 06:09 PM
Thats good that you finally got some answers! I do feel that surgeons somewhat think they no it all or seem like they can do whatever....I have been playing the waiting game for a long time (March - May) (May -Sept) and between those times I got no info.
I hope you get to talk on the phone!
I also feel that surgeons dumb stuff down for us lay people!! But I know stuff.....like he sed that I have idiopathic scoliosis....which means an unknown cause.....ahhhh yeah i did know that!!!!

29th November 2004, 07:10 PM
I think you've done quite well Chrissy.That's not a bad letter as letters go.he's actually given you as much information as he possibly can before doing the actual surgery.Until the day of surgery when she's under anaesthetic he can't be 100% certain of what he will do.Sometimes plans change in the middle of the operation and no consultant is going to give you detailed information that he can't 100% stand over. I can understand how you would feel a bit patronised by the brevity of the letter.I guess he had no idea of how well informed you actually were and when he speaks to you in person I expect he'll come across a lot better.
I've seen no less than 7 scoliosis consultants in my 37 years.There's only one that I would personally turn on a roasting spit for his rudeness and ignorance.The rest were decent blokes who simply didn't have enough hours in the day to deal with the sheer volume of patients they had to attend to.I've even met one or two very recently who have gone a long way to restore my faith in the medical profession.
I know it's natural to be anxious when it's your precious child who's having this major surgery and you're absolutely right to find out as much info as you can.Just try not to be too hard on yourself or get stressed at this stage.I know it's a dreadful feeling to be so powerless right now, but just focus on keeping sarah calm and relaxed and if you find yourself going crazy from the effort just come along here and we'll do our best to get you through it.

Amazed Jean
30th November 2004, 08:38 AM
Chrissy, I think Sins is right. The doc is trying to do his best to answer your uestions but lots of things do get decided in surgery. It doesn't mean you can't ask. I would still keep a notebook of questions and answers and general ideas you have. It can be very valuable in the future and help you focus on a few questions that you might get the doctor to answer. It doesn't hurt to let him know that you are trying to do your best as this particular child's mother even if he sees 50 kids a week he's probably a dad too.

30th November 2004, 01:22 PM
It's definitely true that things can change during surgery. I was told the full plans the day before mine, which had changed significantly from the original plan, a few months beforehand, which were that they would be going from T3 or T4, to L5 or the sacrum, that they were going to do their best to stick with just L5. I woke up fused from T3-L4, when they'd thought there was no chance at all of getting away with it being that short.

So that's definitely one reason they prefer not to say too much. They also don't want to give unnecessary detail that could cause you to worry more than needed - for example, a lot of people have minor aspects of a type of spina bifida. If you read up on it, it makes for pretty scary reading, but a lot of people have this without having any symptoms at all, so because to the doctor it's irrelevant, they tend not to tell you.

If you do a bit of reading between the lines on what he's said to you, the fact a costoplasty is being done means the fusion will be primarily thoracic, and keeping it as short as possible means that it shouldn't involve many of the lumbar vertebrae, which is great for the longer term :-)

Secretaries can be quite a problem. When I was trying to get my notes from my old doc sent to my new doc, I kept ringing, and ringing, and ringing. I never once got an answer from the secretary, and left no less than 11 messages over a 2 week period. Never did hear back, and the new doc never got the notes :rant:

30th November 2004, 07:25 PM
What is costoplasty?

30th November 2004, 08:48 PM
was thinking that myself......hmmmmm *strokes chin*
can someone enlighten us please

30th November 2004, 09:38 PM
I think Chrissy may mean a thoracoplasty, although I might be wrong and this might be a different procedure.

I think it's good that you got a reply Chrissy, and some questions have been answered. I think the others are right with what they say - it must be difficult to know exactly how an operation will go beforehand. I can totally relate to the difficulty and frustration of watching your child go through something and not getting the answers you need. Don't feel patronised. The doctor doesn't know what a great mum you are being by looking things up on the intranet and researching the "condition" your daughter has, so he has to keep it simple. Once you meet him or talk to him, he'll understand how much you know and will allow himself to be more open and detailed. At least this is what I found.

Make friends with the secretary. She is the key to getting to talk to him and is much more likely to pass on your message if she likes you and feels she understands what you're going through. Unprofessional I know, but true.

Good luck in getting more information.

1st December 2004, 12:01 AM
I'm pretty sure costoplasty and thoracoplasty are basically the same thing... I seem to remember another thread about it somewhere.

1st December 2004, 07:36 PM
I think there've been many threads, yeah :-D as far as I know they're exactly the same thing.

Amazed Jean
1st December 2004, 08:39 PM
Here's an idea I had and used. I wrote a short note to an old doctor and took the note, a stamped evnvelope and a black and white t yped copy of a request for records to the doctor I wanted records from. I offered to pay whatever they wanted but I did put a four week time limit on it. Stating that I was due for an important consult in 5 weeks seemed to also help. I explained that the doctor had requested copies of all records to help him form a better surgical plan. I also called back after 3 weeks. It wasn't the entire truth but it worked.

1st December 2004, 10:16 PM
aww cool......!!! I would like my xrays and sum other files and stuff.....but i dnt think my surgeon would give me them.....cos he needs them, maybe after my op he may give my the xrays...or at least take a picture of them.
That was such a good idea...even tho you told a porky! tehe

1st December 2004, 10:23 PM
That works if they don't LOSE your records...

I hope that doesn't happen to me again! :P

2nd December 2004, 03:57 PM
yep.....they lost my first set of xrays.....I was so annoyed, cos I thought I would find out my curve and i didnt....I had to wait 4more months.....I hate the NHS

Tweety Pie
2nd December 2004, 04:32 PM
My understanding is that in the US it is called a thoracoplasty and in the UK
it is called a cytoplasty.

2nd December 2004, 04:49 PM
aww right....how do you know how to pronounce them words....?!?

Amazed Jean
2nd December 2004, 09:02 PM
You don't pronounce them - you're on the computer you type in something close and we get it. You can act stupid at the doctor's office and they'll help you pronounce it. I had to have them help me with the doc's name Its L'Heureaux. Pronounced La Roo. And I thought English was weird.

2nd December 2004, 09:10 PM
LOL Amazed!

I've only heard thoracoplasty mentioned once... The person said it "Thor-ack-o-plasty"

2nd December 2004, 11:19 PM
Really? I would have said [thor a' so plass tee]. After all, we don't say [thor ack ick], we say [thor a sick].

Amazed Jean
3rd December 2004, 01:15 AM
I think both of you are thwacted! We get the idea of what you mean though!

3rd December 2004, 10:46 AM
I'm in favour of thor-ack-oh-plass-tee simply because it's thor-ah-cot-oh-mee. The pronunciation of the c seems to vary :-)

4th December 2004, 08:24 AM
That's a good point, Titch. I wonder if there is an Authority on the subject. I'll ask Philip's sister when I'm in Paris. She's a professional French/English translator, and very precise in her speech, so she should know the proper pronunciation.

5th December 2004, 12:38 AM
I didnt no how idiopathic was pronouced....I thought it was (i-dough-path-ic) lol....but then the surgeon was like yes she has idiopathic (id-io-path-ic)....lol silly me!

5th December 2004, 01:36 AM
sk-o-li-o-sis as in "oat"
sk-o-li-o-sis as in "orange"?

a-ket-ab-YOU-lum? ass-it-AB-you-lum?

5th December 2004, 01:59 AM
How would you pronounce sk-o-li-o-sis as in "orange"? I use the 'oat' pronunciation. I wasn't aware that there could be another way of saying it.

And what is that second word?

Amazed Jean
5th December 2004, 06:29 AM
Yeah, what is that second word anyway? Are you making fun of all us trying to pronounce things in type .Haha It IS pretty funny!

5th December 2004, 12:30 PM
It was just I noticed Titch has orange scoliosis, and I have oat scoliosis.

(I hope this goes to the top of a new page :-P)

The acetabulum is the cup-shaped hip socket in the pelvis that takes the femoral head.

5th December 2004, 07:50 PM
Well, I'm pretty sure acetabulum has the second pronunciation, as that's what it was always referred to in hospital when my gran broke hers ;-)

Anyway, I sound ridiculous, like I'm doing some bizarre Hyacinth Bucket impression and claiming to live in a hice if I say scoliosis as in oat :idiot: I'm a yokel, s'not my fault!

5th December 2004, 10:22 PM
I'm so lost in this thread!?!?!? :nutter:

Amazed Jean
5th December 2004, 11:46 PM
Not to worry lost can be very much fun. We should have a place that lets us just post off the wall stuff like how do I pronounce whatever. I still have no idea how to correctly pronounce anything so I go with the "idiot" theory. I mispronounce and act dumb, every one feels sorry and helpful so they help. It works except I still can't pronounce a darn thing in print. I could tell you my "viola" story but even I can't beleive I was so stupid.

6th December 2004, 12:23 AM
do tell!