Latest on Megan

[RosieRich]

Hello,
I’ve finally had a chance to sit down and write a Megan update. We’re coming to terms with the fact that Megan’s curve is worse than we thought, around 40 not 30 degrees. :(
I'll start at the beginning (this may go on a bit!) We had an appointment about 3 weeks ago. First we saw the registrar who sent Megan up for an Isis scan, as we expected. Unfortunately the equipment they used last time was new and part of a research project and this time they were back to the old equipment. So when the registrar looked at it he couldn't compare the two and sent Megan back for an X-ray. (The isis scan was supposed to limit the amount of x-rays needed so that was a waste of time.) :nut: On returning to the registrar he came in very cheerfully saying there's no change it's still around 40 degrees! Hold on we said it was only 30 in April. :???: At which point he got both x-rays on screen to show us and indeed they were both around the 40-43 mark depending on where the measurement was taken. At this point he fetched our consultant, who couldn't understand why we were so upset. He didn't actually say what had happened last time only yes there must have been a change and then he changed the subject by launching into the fact that an operation isn't all that bad and we shouldn't be worrying about it , etc. etc, in fact he was getting quite irate with me. He could only look as far as the last 6 months which were good as it hasn't changed but yes she is on the threshold of needed an op. This in complete contradiction to April when he said how well she was doing with no change over the year, give her more out of brace time, relax, etc! If he had told us 6 months ago that it was 40 degrees we'd have accepted that as her back did look worse but we didn't question him when he said it hadn't changed as we just grasped at something that was positive. I wonder now if we should have questioned it and also wonder if we had known it was 40 then whether we would have looked at a different bracing route. Megan has since had a new brace which is proving to be a lot more uncomfortable than the last one so she feels like everything is conspiring against her.
We’ve written to our consultant to get him to review her X-rays from the beginning in case it was the first diagnosis was wrong. If her curve has been 40 the whole time that wouldn’t seem so bad.
Sorry to go on but needed to have a moan!
Sam

[gerbo]

it saddens me to once again hear how patients and their families seem to be treated like sh.. .Even if technically nothing could be done different, you still expect to be treeated with respect and consideration for your feelings and fears, and you really want to feel that they care and try to do the best for your child. .

It seems sensible to ask for a review of all x rays from the beginning, and please let us know what comes out of that.

You must feel rather screwed up at the moment, do you feel that surgery will become inevitable?? Any idea where you want to go from here?

:squeeze:

gerbo

[RosieRich]

Hi Gerbo
It's very difficult to know what to do. We went to see our GP to get his advice. He said writing a letter to clarify things would be the best place to start and if we're still not happy to come back to him. I had thought of transfering to a different hospital but treatment will be the same. If it comes to surgery (I'm still hoping it won't) I think then it would be a case of finding the best surgeon. I have to believe the brace is doing something or the past 18 months of discomfort for Megan will have been for nothing.

[gerbo]

It must be so difficult to even decide whether you want to do anything different, just knowing that trying alternatives is going to be such an uphill battle, such a hassle, and most likely your daughter is totally fed up with all the fuss already. Sometimes it feels that just waiting for the "inevitable" surgery (which to many members here has been a very acceptable treatment with good results) is the hassle free way forward. Any idea where you stand on that, considering that whatever clarification you get, it will not chance the basic problem that the curve of your daughter is getting close to surgery level, and your consultant doesn't seem to feel that he can do anything more (but surgery)?

what does megan think of all this?

gerbo

[RosieRich]

Originally posted by gerbo@Nov 13 2006, 06:14 PM
It must be so difficult to even decide whether you want to do anything different, just knowing that trying alternatives is going to be such an uphill battle, such a hassle, and most likely your daughter is totally fed up with all the fuss already



You are right there gerbo.
I was hoping to have heard back from the consultant by now but still nothing. I think Megan has accepted she will need an operation some day but is doing all her exercises and keeping up with good brace compliance in the hope that it won't come to that.

[gerbo]

have you considered "trying" the spinecorbrace to see whether it gives a better correction?? In one afternoon you'll get an out of brace x-ray, trial fitting and in-brace xray, so you'll get an immediate impression as to whether it is likely to work better than you current brace.

saying that, with this degree of curve, and having been in a hardbrace for such a long time, I think you would be told not to expect too much from the spinecor



take care,

gerbo

[RosieRich]

Just a brief update: Megan's curve is still stable but it is around the 40 degree mark. We saw our consultant last week having had the appointment brought forward. After 2 letters and speaking to his secretary we still hadn't had any reply so we went through everything at the appointment. It seems that the digital X-rays (the last 2) can't be compared to the very first one which wasn't digital, so although her curve may have progressed there is probably some disparity in the X-ray too. I won't go into the details of actually making it to see the consultant just to say, the day we were there was the first day they had moved into the new building and we were there for four long hours!
The fact that the curve has been stable for a year now is a relief and Megan has had a huge growth spurt in that time. Fingers crossed that she gets through the next growth spurt with no change.
Gerbo, we have thought long and hard about spinecor but we are at a stage now that I feel it probably would make little difference and any improvement would be out weighed by the extra travelling and Megan having to cope with something new.
Well, that wasn't that brief after all!
Sam