View Full Version : Update on Cerys
13th March 2007, 07:32 AM
We took Cerys for her appointment yesterday. Got there early and took her up for her x-rays while hubby was still parking! We went back down and measured her. Shes grown nearly 4 cm since November. Then I asked if Dr Freeman was in clinic to be told no we'd be seeing a spinal fellow we'd never seen before. We sat for about half an hour before a nurse announced Dr Freemans clinic was running behind by about an hour and a half :nut:
After trying to keep Cerys entertained, we were finally called in to the examination room where the doctor asked us to take her shoes and trousers off! and looked at her legs?! She didn't once look at her back!.
Good news is that the MRI was ok didn't show any problems with the cord. She then questioned the weakness in her left arm like we were lying about it :-? After making her grip her fingers and touch her shoulders she said that her left arm is shorter than the right. Fine but why would that make it weak??
At this point she said her curve looked about the same as last time and was about to send us on our way until I asked to see the x-rays, mri and ct which I was shown. I asked how many hemis were in the cervical area to be told they couldn't count them! But basically the whole cervical area is made up of hemis and fusion. I then asked about the hemi at the base of her spine which she knew nothing about :nutter: When she found it on the x-ray she said there was also some fusion but the pelvis looked straight for now. We were also told that she was bending forwards at the cervical curve which she wasn't before. (Is this kyphosis (sp)?).
Anyway to really upset them, I asked if I could have a copy of her x-rays, mri and ct scan. They all looked at me as if I'd just murdered their cat before finding me a card to fill in and post off.
We were then told that her notes would be put on one side for Dr Freeman to look at today and if he wanted to see us he would call us back, if not we go back for more x rays in 4 months.
Anyway, rant over! :soapbox: The fusion aspect is worrying me as if it keeps fusing then there will be less options. We were also told that she was due for a growth spurt so things will probably be worse next time we go and then they might do something!
Sorry for waffling just had to get it off my chest!
Love Ella x
13th March 2007, 12:20 PM
Ella, Are you sure this doctor knows what she's doing. She sounds a bit thick. Or maybe it was the cleaning lady dressed up like a doctor.
13th March 2007, 12:45 PM
How many appointments now without having seen Mr Freeman himself? I ask because I was told that they aim to make sure you see your actual consultant for *at least* one appointment in 3, so that might be something you can use as a bit of a stick to kick them into gear with.
About all I can suggest is that as you should hopefully be written up for another appointment, ring Spinal Outpatients to make the next one and insist that they make it for a day when Mr Freeman will actually be there. Also, ring Mr Freeman's secretary and explain that you're getting quite concerned because although it seems that the scoliosis curves have not got worse, which is a relief, you are very concerned by the suggestion that Cerys is developing cervical kyphosis and are worried about the implications of this. I don't suppose the secretary will be able to do much (you'll probably need to ask specifically to be put through to his scoliosis secretary btw, as if he's anything like Mr Webb, he has more than one, for specific purposes!!), but at least it will be noted that you're chasing things.
It's good news though that her pelvis is staying level for the time being, and that the curves don't appear to have progressed despite the amount she's grown in such a short time :-) Also, my impression is that 4 months is a fairly standard length of time between xrays - they try to keep the number down, but at the same time not leave it long enough for there to be a very large change in things.
I can't remember her name unfortunately, but one of the clinic nurses is an older lady probably in her late 40s to mid 50s with shoulder length mousey hair - if you know who I mean, she's generally really helpful with arranging things like getting to see xrays up on a lightbox and take photos of them and so on :-) She's always seemed quite enthusiastic about the idea of this site, so has helped me with getting pictures done before without having to bother the consultants about it, so if things are really harried and she's around, perhaps ask her before you go in if she'll be able to let you see the xrays after you've seen the consultant.
Occasionally you do run into one of the more pompous fellows - there was one who really wound me up when I was on the ward after my surgery, because he just seemed so full of himself. He was one who'd have a gaggle of SHOs with him whenever he came round, learning how to do it all and I did find myself wondering whether they were learning the wrong stuff because he irritated me so much with his attitude. Then a couple of days before I was due to be discharged, he came to see me with his usual entourage, to explain all the discharge stuff. As no one had mentioned it one way or the other, I asked if I was going to have a post-op brace, and he said no. Being curious about these things, I asked why, mentioning that I'd had to have one after my previous surgery at a different hospital, and he clearly just didn't engage his brain before opening his mouth as what he said was "We did a much better job!" He was *horrified* that he'd out and said what he was thinking, and I just creased up :D The difference in him after that was amazing, it was like he turned into a human being suddenly - and I got to see that basically, as good as he clearly was to have got to where he was, he was actually pretty much scared stiff poor boy :lol: Gave me the best laugh I had while I was in there! In any case, I know it doesn't help when you're on the receiving end, and I'm sure I'd not have been happy with the appointment you had either, but on balance it's at least not bad news, and it does sound like while she may not know *why* at least everything will be noted (I'm sure I've said this before but I make sure to tell them about any oddities even when I know they're just going to goggle at me, and tell them look, I just want it in my notes in case it turns into a problem), and Mr Freeman will be reviewing it.
One last question, did you notice whether there was still a sign up in Spinal Outpatients referring to the nurse led clinic on Fridays? Assuming it's still running, just remember it's there, and so if there are any changes you can drop in to that, and if they're worried they'll probably send you straight up to D8 to see the duty doc. I found it good to know that back up is there if I ever needed it.
13th March 2007, 01:01 PM
I'm sorry your appointment was so incredibly frustrating. It sounds like you did well handling it. I don't think an hour and a half wait is unusual, but when you don't get a quality appointment at the end of all that waiting, it makes it seem even worse.
She seems to have grown a lot since November. Perhaps she's in the middle of the growth spurt now, which would be good as she seems to be holding her own despite growing quickly. I know when Erin has had previous growth spurts, she's got really bad very quickly. It's definitely noticeable.
I don't have more to add to Titch's post as I have no experience of congenital scoli, but rant away if you need to. That's a lot of what we're here for!
Take care and big hugs to you and Cerys
13th March 2007, 04:30 PM
I can't believe you didn't get to see Mr Freeman this time, how frustrating :nut:
I have to say, I think amazed wasn't far wrong in summing up this lady doctor, did she have a scarf tied round her head and knotted at the front (always a dead give-away!) Please don't take that the wrong way, I'm not trying to trivialise your experience - far from it.
I also got a strange look when I asked about copies of my x-rays, but to give him his due, my consultant did say I could take my camera along to my next appointment (which is tomorrow :-o ), I just hope he hasn't forgotten he said it. Perhaps he had some inclination of why I might want to have copies since on the actual morning of my op he came to tell me that my pre-op x-rays had been 'misplaced' and things would have to be delayed while I got some more taken as he needed them to refer to during the surgery, but luckily he came back a few minutes later saying they'd been found!!!
Hopefully Mr Freeman will read Cerys's notes suggest a further appointment, but if none is forthcoming, I would pester his secretary like Titch advised.
Hope things go well.
13th March 2007, 07:43 PM
It means so much to have your support and advice. We have had 2 appt now when we haven't seen Dr Freeman so hopefully next time! I tried to ring this afternoon to check that the notes have been looked at but I got no answer so I will try again tommorrow.
I'm mainly concerned about the fusion and the fact that she is now also bending forwards so I will voice this to the secretary. I just couldn't believe that she asked us to remove her trousers and shoes and didn't look at her back!
Titch - I think that I know which nurse you are talking about and she always fusses over Cerys and remembered her from last time. She put me at ease far more than the others. There was a notice up about the drop in clinic so will try to go next time hubby is off on a friday and try and get some more answers.
Amazed - I was rather worried that I appeared to know more than she did!! Perhaps her feather duster was hidden away somewhere! Hopefully we won't have to see her again.
Gilly - I have got a form to send off which I've just filled in which gives me access to Cerys' x-rays, mri and ct scans. I've got to get hubby to sign it to say I'm allowed to get them and my gp/policeman or someone 'official' to sign. I don't know what they think that I'm going to do with them!
Will definitely push to see Dr Freeman I don't care if they think I'm a paranoid mum!
Hope that you get on ok tommorrow. Will check back to see how you get on.
Love Ella xx
13th March 2007, 09:00 PM
Sorry to hear that you were less than impressed with your appointment but well done for sticking to your guns and asking your questions.
Sounds like Cerys has had a significant growth spurt and if her curves have remained the same that is really good.
15th March 2007, 12:06 AM
Sorry to hear about your appointment. It rang so familiar to some we have had before, we went to see Dr mehdian and were seen by as they put it a member of his team who to me didnt know nothing about laurens case but we were told that when a consultant isnt avalible tand you are seen by someone else they go through the progress with you but only tel you so much because they are not dealing with your case personnaly on the level you would get with your usual consultant they cant say this needs to be done or that needs to be done they are given notes to tell you the curve what they free may happen next and that you will get more info at your next appointment.
Lauren has had the trousers off socks off etc she had to push her feet against hand pull herself up by holding on to drs hands legs touch in various places and arms. this was a regular thing before and after her first op.
lAUREN AS ONE LEG 4 CM SHORTER THAN THE OTHER even though her hips and waist are now level ish this is still the case.
Some things they do may seem very odd but its all relevent long term lAUREN had a growth spert before her last op and sometimes its better to wait to see over a period of time what happens as slight growth can reduce the curve not b much but even slightly is a good sign.
But when you go back in 4 months phone up the clinic and tell them that you must see dr feeman not one of his team and keep trying to ring his secretary if you have no luck ask the clinic to put you through .
One thing that really does annoy me is i know they are busy people and work very long hours but we are mums that go in we are worried about what news we will recieve yet at the same time need to hear it. wOULD BE GOOD IF THEY SPOKE TO THE CHILD A BIT INSTEAD OF AS i see it sometimes they just see them as cases to be sorted. Lauren was very wary for years she just hated ging and she was 4 when we first started they know even at that age what they feel whats different we used to get asked hows she doing any pains etc i used to snap after a while and say ask her she will know more than m but ask her in a way she wil understand now we get the hello lauren how you feeling any this any that we know our kids well but not always what they feel.
Yes i dont want a dr who is over freindly with her because then its a different level what i like to see is paient dr relationship with a smile for them so they come out with a smile without feeling all confused about bending over having legs pulled etc which must be very daunting but with a can you bend over so i can see how much more you can do since last time, but i guess you know what i mean imagine us going through all those tests wed feel a bit lost too. cos you have to admit some of them do look odd but we know they are for a reason and even though we tell them to a degreee what they are we dont really know what each appointment is going to be.
And the nurse who is of great help in clinic on mon and tues is Bea Smith fantastic with the children and of great help to parents just ask away and she will help you with any problems you have no matter what they are. She also works on the childrens bay on D8.
15th March 2007, 12:57 PM
I tried ringing yesterday to be told that Dr Freeman wouldn't be in until today so hopefully he will get to look at the x rays later! Although it's interesting to know that he was there on Monday afternoon!
The trousers and socks off thing was weird as she didn't make her do anything just looked at her! although she did a few tests on the hands/arms to check the weakness.
I'm just quiet an organised person so find it frustrating not knowing what will be done and when. Hubby's advice is to worry when it's getting near the time when she needs her op!
On the point of talking to the children, I had to laugh as the doctor did ask Cerys if she gets any pain. I don't know what response she expected from someone who has just turned 3! A simple "does it hurt anywhere" may have been better!
I'm glad that Lauren was ok. It was so busy in there but I think some ambulance cases had come in so they were pushed to the front of the clinic hence the delay. Just hoping that we see Dr Freeman and will make sure he will be in for the next appt. No doubt they will have to discuss her on Friday before I get any sense out of them!
I'll make sure that I remember the nurses name as she is really helpful and was great with Cerys.
Will update when (if) I know more.
Love Ella x
15th March 2007, 08:07 PM
There's a smiley face rating for pain that's supposed to be good with children as they can manage it even when they can't verbalise very well - I'll see if I can find a link to it, and then you can see what you think as perhaps it would be useful for future appointments. I'll get back when I find it......
15th March 2007, 08:09 PM
Well, that didn't take long! Here you go:
16th March 2007, 07:15 AM
That will be so helpful as Cerys seems to get most of her pain at night when she hasn't got her hearing aid in so it's more difficult to ask/ for her to tell me how much it's hurting.
Our speech therapist has already said that she will make some picture choice boards up for when she has to go in hospital and then if she doesn't want her aid in she can just point to what she wants. I'll print the faces and get hubby to laminate them!
Cerys is also starting playgroup after easter so would be a good thing for them to have just in case. I think that they are a bit scared about having her there with all the different problems but I'm going to print some info off for them to read before she goes in.
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