View Full Version : No news is...well....no news
26th April 2005, 09:13 PM
Well, we're back home now and Erin is in bed after a rather long day at Stanmore. The actual plaster change went fine, no problems, although the visit itself wasn't without the usual incompetencies that we seem to experience every time. Every visit we learn something new it seems. The first lesson of today was to make sure the staff know you have arrived! Despite arriving at 7am and the nurse showing us to the cot, she failed to mention to the next set of nurses that we had arrived. The anaesthetist arrived at 8 to speak to us and was told we weren't there so he went away again. They phoned us at home to ask us where we were, and all the time we sat quietly where we were told to and didn't say a word. I always feel bad chasing the nurses as I know how busy they were. By the time they discovered us, they were in for a severe tongue lashing from the head anaesthetist as the list had to be put back because we hadn't had the plaster off or anything. So it was rush rush rush to get the plaster off and Erin into a bath.
The good lesson of today is that we no longer have to rely on the mask to get her off to sleep. They gave her an injection and she didn't murmur or cry and slipped off nice and quietly. She still woke up screaming the place down, but it was nice and calm while it lasted.
The second lesson was never to rely on the right registrar coming to see you, or carrying a cobbometer on them. Mr Taylor's registrar came to see us, even though Mr Taylor is on sabbatical and had nothing to do with the casting and he had only been in the department 3 months and knew nothing. He said he couldn't measure the curve, but the measurement didn't matter anyway (to whom?). It looked ok and he guessed under 30, even though it didn't look as good as last time and that was 34! He ended by saying that it didn't matter if it didn't work as if she needed surgery there were plenty of skilled surgeons who could help!! Hmmm, not really what we were after. I'm putting his lack of compassion and knowledge down to the fact that he was new. Anyone know where to buy a cobbometer? Twice now they havent' been able to find one and give us a measurement. I do see where he's coming from when he says he doesn't need to know, but it's really important for us to see an improvement.
Gosh, sorry, this is really long. Upshot is that it was fine, we don't know what the curve is in the jacket, but it's better than 62 although may not be as good as last time at 34.
Next change in 8 weeks time.
Thanks for all your support.
26th April 2005, 09:30 PM
What a fun packed day! Although stuff like that really worries me. What if you're dealing with a surgery situation and the nurses mess up with the amount of medication that has to be administered to the patient ? Or what if they give the wrong medicine and the patient dies ? I'd be a nervous wreck.
I'm glad everything went well though....
26th April 2005, 09:33 PM
Yes, we go back on 21 June, 2 days after we get back from Canada, so we'll be all over the place!
I try not to let the madness get to me. Today was a really busy day - i've never seen the ward so busy and there were just children crying all day - exhausting! I'm somewhat comforted by the fact that Stanmore has the 3rd lowest rate of MRSA, which is a big problem over here at the moment. I just make sure that whatever they give her, i'm aware of it and know whether she needs it. Surgery situations are different though i'm sure.
26th April 2005, 10:23 PM
I'm sorry you had such a stressful day, but that's great news about the anaesthetic injection. It'd be interesting to own a cobbometer.....I'll do some research and see where they can be obtained from!
26th April 2005, 10:23 PM
Erin doesn't need surgery.Don't even let your mind go down that route.I doubt it made any difference that yer man didn't have a cobbometer,there's scant evidence to suggest he even knew how to use it.If I'd been left hanging around through stupidity,there'd be skin and fur flying.Phone the consultant and ASK!!! That kind of treatmeent is not good enough.
Sarahs Mum aka Chrissy
26th April 2005, 10:33 PM
Sorry to hear you had such a bad day. We've experienced our share of incompetence along the way, as I'm sure you know, so you have my sympathy.
Hope all goes well from now on.
26th April 2005, 10:38 PM
I'm with Sins tear those guys a new one. Why should you and Erin suffer for their lack of capability. Who in the sam hell do they think they're messing with? This is no ordinary Mom they're dealing with. This is a notebook carrying SSO Mom ! They are on my list to have their kneecaps bitten. Andrea its off to the tub with a glass of adult beverage with you. Hugs from Jean
27th April 2005, 12:05 AM
Were you able to take pictures of her xrays? Or if you've got the films, you could try laying the new xray on top of the old one to compare... then you'll know if there is any change. It's difficult to judge when there's some growth, but you can get an idea. It sounds like maybe everything was too rushed for you to get any pictures, though.
Ugh, I would be so miffed if I waited around patiently while they sent my anesthesiologist away! And the sheer incompetence of the register would have had me livid... on the scene! It does matter what her curves are. You want to know how she's responding to treatment. Blargh.
I'm impressed with your ability to remain calm. *smile* Now call up the supervisor and complain.
27th April 2005, 12:54 AM
What's an MRSA ? I don't know if this helps at all, but I found an article which explains how the cobb angle is measured.
27th April 2005, 03:30 AM
Sorry you had such a frustrating day, but I am sure you are glad it is all over again for another while. Could you ring your consultant and ask him to review her films to see if there was any discernable difference? I know all docs have to get experience but there really are times you wish they would learn on someone else!!
Hope you have had a relaxing evening and that Erin is well recovered tomorrow.
Sealy MRSA is a very resistant form of the staph Aureus (? Sp) infection. It is very common in a lot of European hospitals, I am not too sure what the incidence in on your side of the atlantic.
27th April 2005, 04:28 AM
MRSA sounds like the staph infections that run rampant in US hospitals. Amazing that some thorough hand washing could all but eliminate the problem. Kind of frightening that the people paid to care for us don't care enough to wash their hands. If they don't kill you first hospitals might even help get you better.
27th April 2005, 07:56 PM
Originally posted by andrea@Apr 26 2005, 08:13 PM
He said he couldn't measure the curve, but the measurement didn't matter anyway (to whom?). It looked ok and he guessed under 30, even though it didn't look as good as last time and that was 34!
Maybe its's just because I've had an appointment with a consultant that lasted all of 15mins max .. with no xrays no previous info available and an answer of :
"Well you wont get any worse .. and if you'd been presented to us when you were first diagnosed we would have done something but it would have mainly to save your lung function, and we can see from your records that it hasnt been afected. and the surgery probably wouldnt have worked anyway."
The more I hear someone say "it doesnt matter" for whatever reason possible the angrier I get!
It matters, especially to you Andrea.
This information is what puts your mind at rest , this is how you know what is working and what is not ... Keep pushing til you have the answers you need!
Hmm, am just thinking,
If you have to go to the hospital two days after a long flight back from Canada
you could be very tired and not in the mood for staff slip-ups ...
that could turn out to be a very interesting hospital appointment ;-)
28th April 2005, 03:14 AM
Bless your heart I would of filpped out on them for those type of answers. I hope all is well and the rush job didn't casue her not to get out of the jacket what it's done for. I would complain for sure once you have rested from the day's visit. Cathy
28th April 2005, 11:25 AM
Thanks everyone! I'm just way too British to make a fuss I think!!
Kim - we did take a picture of the xrays, but I think we must have had the settings wrong or something as they didn't come out very well. I have a fairly good one of the curve in the last jacket which looks similar. The big difference in the more recent cast is that the spaces between the veterbra are much smaller - does this mean anything? I've got some movie footage of the original xray (wrong setting again!) so I'll take a grab of that and post the xrays at some point.
I'm going to request (demand) an appointment with a more senior registrar or consultant where I can actually get my questions answered, and hopefully i'll be able to take more shots of the xrays then.
Chele - you're right, next time might be v interesting!! Canada might have rubbed off some of my Britishness, you never know!
Thanks again everyone - you're great :D
Toni - i seriously would like a cobbometer - let me know if you come up with anything. My Googling failed miserably.
28th April 2005, 11:39 AM
Andrea, cobbometers are more usually called "scoliometers", and sometimes "inclinometers". I've found some on the net, but they are madly expensive. There's one on Amazon.com. I'll keep looking and see if I can find one that's a decent price....
Edited to add: I personally think the best way to measure curves is to use x-rays and a protractor.....quite a few of us know how to do this. Andrea, if you can take a digital camera with you whenever you take Erin to Stanmore, you could take pics of her x-rays (ask the docs to display them on a lightbox for you) and then we'd be able to help you work out what her current measurements are.
28th April 2005, 11:59 AM
If they're v expensive, that'll explain why it appears they never have one. I did take some pics, but they didn't come out very well as i think the settings were wrong. I'll try again next tim.e
3rd May 2005, 07:22 PM
Andrea - I am late with this one (again) but im sorry that the day didnt go as planned!!
Great news that Erin can be put to sleep by IV (less stressful on u I would think)
I hope u can get a pic of the xrays next time.....it would b good to see them! what are Erins curves at the moment (sorry to keep asking)
3rd May 2005, 07:27 PM
Hi Abbi, thanks for the note. I don't know what her curves are at the moment. I'd estimate by looking at them that they're somewhere between 35 and 40, although the "chocolate teapot" registrar held them up to the light and said he thought it was less than 30. We'll see who the expert is, hey?
I've got some dodgy pics of her xrays so will put them up, and hopefully i'll replace them when i get better ones.
ETA: xrays submitted. Told you they weren't v good!
3rd May 2005, 08:27 PM
Hi Andrea, x rays admitted!
I'm stunned.They look very good andrea.The difference is astonishing.She looks so much more upright and her rib cage looks way more symmetrical.If I were you, I'd be very, very encouraged by this and the treatment is obviously working.Even her out of cast photos show such a cosmetic improvement.Hang on in there, you're both doing fine.
3rd May 2005, 08:56 PM
Thanks Sins, your comments mean a lot. I did straighten the xray as it looked as if she wasn't standing straight, but only a little. Even so, at least the rather large rib hump on the initial xray looks better. I've never really studied her xrays so hard as I haven't had pic before - I can't believe how bad her back was.
3rd May 2005, 09:40 PM
Andrea, I must say that I am amazed at how good Erin's spine looks with the cast on! I can't remember my casts ever making such a difference - they held my curves rather than pushed them straight. It is so encouraging to see this! :D
4th May 2005, 01:13 AM
AMAZING.....just AMAZING!!! Erin's spine looks so much better than the first one of 62 degrees! yay - im so happy for you!!!!
The xrays are really good....better than what I have...which is nothing.....next time I will see Mr H I will demand to see him....hehe - I prob wont.....I'll prob b like...um...cud I maybe see my xrays to um take picture please?
lol - I would be all shy and quiet :P I prob wont see him for another good while.....cos I mean whats the point if I aint havin my surgery for ages.....surely my curves wont get any bigger - will they??
sorry Andrea....I have gatecrashed ur post - but yes.....well done with the paster jackets.....I hope u can get a measurement soon! :D
4th May 2005, 03:02 AM
That looks really amazing, I know it is frustrating not to have an actual measurement of the curve but that is really good correction.
I must ask Mr. Mc. Manus if I can take some photos of Niamh's x-rays at our nest appointment.
4th May 2005, 03:05 AM
Andrea,I finally managed to look at all your photos. Everything looks encouraging to me. She is such a little trooper and Mom hang in there. You are going to learn how to bite knee caps before long.
4th May 2005, 04:46 PM
I just saw the most recent x-ray and it looks VERY good. Erin's first out of cast x-ray looks much better than Deirdre's, I wonder if they calculated Deirdre's 60 degree curve accurately. When they applied her cast two weeks later they took an x-ray before the cast application and it was up to 68 degrees ! So... I wonder.
Erin's trunk imbalance seems to have been corrected. I'm not really sure what you did to straighten out the photo and if that would impact on the appearance of the trunk. I think that is what they try to correct initially with the casts and then after that the curve's angle, the vertebral rotation, and the thoracic asymmetry. The last brace is determined after almost total correction of the vertebral rotation and of the thoracic asymmetry. Do you know the apex of Erin's curve ? If you notice Erin's T10 vertebra there is a little circle which is close to the midline (it seems to be the vertebra that is most rotated) that is her pedicle and that is one of the methods they use to measure vertebral rotation. Sorry if I have given you more information than necessary - I just find it all very fascinating. :-D
4th May 2005, 05:47 PM
Sealy, I can't beleive how knowledgeable you are. I'd almost trust you to try surgery on me. (just joking ). BUT it seems like a great time for me to remind people that each person is their own best guardian of health. Keep your own records. Do research. Ask questions. Ask questions. Ask questions. The old days of blindly following the orders of every guy in a white coat are over. Help yourself to stay safe.
4th May 2005, 07:19 PM
You're making me laugh. :-D Did you read about my experience last week at the ortho clinic ? I mistook the heart for the lungs ? Now that is one memorable clinic appointment. :-D
4th May 2005, 07:47 PM
Thanks Sealy. You lost me a bit, i must admit, so i'll have to go back and study the xray and see if I can see what you can. I don't know the apex of her curve - what is this exactly? I thought I knew, but am now wondering whether I actually do or whether i'm assuming i know what it is.
I've already got my questions accumulating for when we get to see someone who actually knows what he's talking about! The more the merrier.
4th May 2005, 09:24 PM
I'm probably giving you more information than you need to know. The apex of the curve is the most rotated vertebra in a curve - frequently two vertebrae are equally rotated. Thoracic curves normally have the apex at T8-T9, which is exactly the apex of Deirdre's curve. In Erin's case, it looks as though T9 and T10 are equally rotated which could be her apex. Erin has rotation and I would guess that it's maybe a level 2 rotation. There is also some wedging which is reflected by shading at the edges of the vertebrae.
Trunk balance or lack thereof is an important observation because it tends to be an indicator for progression. In the A/P x-ray, the line of the centre of gravity in an erect position should bisect the sacrum
Clear as mud ? :-D
5th May 2005, 08:06 PM
soooo confussing to me....but then again everything is......
I have heard apex of the curve being mentioned....maybe it was at my last appt. not sure....I kinna half listen a lot.....my mum takes in most of the info....so its like afterwards "mum - what did he say about xy and z" hehe....I get distracted so easy!
Its great u have a lot of Qs the next time u see someone....they'll just love ya for that - lol!!!!
I usually plan a lot of Qs....but when I get there I am overloaded with info, and its like what was I going to say. I would advise writing them down (and the answers also) :D
6th May 2005, 09:29 PM
I was looking everywhere for my protractor and I found it ! Yippeeee !!!. I'm like a little kid on Christmas day - busily measuring everyones cobb angle in the gallery ! :-D I made some very surprising discoveries - Deirdre's initial cobb angle is actually 50 degrees ?!!! I was told 60 degrees. Let me know if you want Erin's most recent cobb angle. Deirdre's rotation is a level one in the pedicle scale. I think we're doing well. :monkey:
7th May 2005, 09:02 PM
Calculating the cobb angle and determining rotation is super easy ! I'll post this here so that others might benefit from the information rather than sending it through PM. Here is a great website that talks about rotation and cobb angle measurements:
Here's what a protractor looks like :-D
Once you know how to calculate these things, it's a lot of fun (sort of). Keep up the great work MUM, you're doing great ! Oh, Happy Mother's day to all the great moms out there :clap:
7th May 2005, 09:04 PM
Oops, one of the images didn't come out.
7th May 2005, 09:10 PM
I'll try this again :thwack:
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