I'll take a copy of this to our next eye appointment at Sutton Eye Hospital to make sure so we get the squint issue properly checked/confirmed.
Saturday, 10 August 2013
Letter from GOSH
Thursday, 8 August 2013
Post-Op Appointment on 1 August
Last week, Thurs 1st August, was our first and only post-op appointment at Great Ormond Street Hospital (GOSH), London since Kate's frontal orbital remodelling surgery for left-sided uni coronal craniosynostosis (cranio surgery) on 17th April 2013.
I persuaded hubby to get time off to meet me there and decided, as it was school holidays for Nikki, that we'd make a day-trip to London and go to Coram Fields (right near GOSH) as well as to the hospital.
It was a very hot day so went up at lunchtime to avoid the sun at that point on the train, then bus, and I was pleasantly surprised to find water in the paddling pool at Coram Fields.
Nikki enjoyed that & playing in the playground for bigger kids while Kate slept in her pushchair.
When Daddy arrived Kate woke & we had ice-cream before heading into the VERY hot consultant waiting area.
My questions and Dr Britto's answers are below:
Q. Now that it's done (I didn't want to know the gory details before), what exactly did you do to make her forehead straight?
A. Bone manipulation, scraping and breaking - that's why you can feel lumps on her head, but it's all fine & nothing to worry about.
Q. Her left eye socket still seems bigger than the other. The Ophthalmologist noticed this. I thought you were dealing with that?
A. What do you mean by bigger? We did and she looks fine.
Q. What age does your skull normally fuse to become your adult skull?
A. Early teens normally.
Q. Would it ever re-fuse, the coronal suture, again now?
A. No, never heard of that.
Q. We were told by the Ophthalmologist that she doesn't have a squint. Is that the case?
A. If that's what they say, then she doesn't. That's good.
Q. Could that change? Could she develop a squint later?
A. No, that's never happened before.
Q. I've noticed she still has an asymmetry and her face still looks weird in a mirror. Wasn't the surgery supposed to correct that?
A. No. The surgery changes the skull, forehead & stops any further facial asymmetry as it grows but it won't correct what has already happened.
Q. She still has a few small bits of scab that look a bit green, is that ok?
A. Yes, they will just fall off when they're ready. Just keep it clean.
Q. How long do you continue to see kids for after surgery, until what age?
A. Normally about age 10.
Q. Is there anything we should do, or look out for going forward?
A. No.
Q. When do we see you again?
A. Next appointment in 2 years.
Q. What will that be like, like this, just a general catch-up/chat?! (I meant about any more procedures/tests)
A. Yes, just to see me.
So, all is at it should be from their point of view. For me, except me being able to notice the eye-socket and slight facial asymmetry she's just perfect. She always seemed perfect to me anyway. I feel that we're done. This is really now behind us and the surgery already seems like a distant memory.
I've had contact from a few people going through this and I really hope this blog and the detail helps them/you. Do feel free to contact me if you want to ask any other questions about emotions, swelling, bruising, post-op recovery or see more of our (pretty traumatic) post-surgery photos to prepare.
I don't suppose I'll be posting here ever again! Maybe I will in 2 years after our next appointment, if Blogger still exists!
Here's a last few photos. Before, during & after.
The latest is one of my latest favourite pics of Kate, happy as ever, with her two big dimples, gappy teeth and one curl on top of her head. She is so cute & funny, she makes us unbelieveably happy.
Wendy Ager
I persuaded hubby to get time off to meet me there and decided, as it was school holidays for Nikki, that we'd make a day-trip to London and go to Coram Fields (right near GOSH) as well as to the hospital.
It was a very hot day so went up at lunchtime to avoid the sun at that point on the train, then bus, and I was pleasantly surprised to find water in the paddling pool at Coram Fields.
Nikki enjoyed that & playing in the playground for bigger kids while Kate slept in her pushchair.
When Daddy arrived Kate woke & we had ice-cream before heading into the VERY hot consultant waiting area.
My questions and Dr Britto's answers are below:
Q. Now that it's done (I didn't want to know the gory details before), what exactly did you do to make her forehead straight?
A. Bone manipulation, scraping and breaking - that's why you can feel lumps on her head, but it's all fine & nothing to worry about.
Q. Her left eye socket still seems bigger than the other. The Ophthalmologist noticed this. I thought you were dealing with that?
A. What do you mean by bigger? We did and she looks fine.
Q. What age does your skull normally fuse to become your adult skull?
A. Early teens normally.
Q. Would it ever re-fuse, the coronal suture, again now?
A. No, never heard of that.
Q. We were told by the Ophthalmologist that she doesn't have a squint. Is that the case?
A. If that's what they say, then she doesn't. That's good.
Q. Could that change? Could she develop a squint later?
A. No, that's never happened before.
Q. I've noticed she still has an asymmetry and her face still looks weird in a mirror. Wasn't the surgery supposed to correct that?
A. No. The surgery changes the skull, forehead & stops any further facial asymmetry as it grows but it won't correct what has already happened.
Q. She still has a few small bits of scab that look a bit green, is that ok?
A. Yes, they will just fall off when they're ready. Just keep it clean.
Q. How long do you continue to see kids for after surgery, until what age?
A. Normally about age 10.
Q. Is there anything we should do, or look out for going forward?
A. No.
Q. When do we see you again?
A. Next appointment in 2 years.
Q. What will that be like, like this, just a general catch-up/chat?! (I meant about any more procedures/tests)
A. Yes, just to see me.
So, all is at it should be from their point of view. For me, except me being able to notice the eye-socket and slight facial asymmetry she's just perfect. She always seemed perfect to me anyway. I feel that we're done. This is really now behind us and the surgery already seems like a distant memory.
I've had contact from a few people going through this and I really hope this blog and the detail helps them/you. Do feel free to contact me if you want to ask any other questions about emotions, swelling, bruising, post-op recovery or see more of our (pretty traumatic) post-surgery photos to prepare.
I don't suppose I'll be posting here ever again! Maybe I will in 2 years after our next appointment, if Blogger still exists!
Here's a last few photos. Before, during & after.
 |
| Kate, April 2013 |
 |
| Day 2 (I think) post surgery - 19 April 2013 |
 |
| Kate, July 2013 |
Wendy Ager
Friday, 28 June 2013
Letter from eye hospital
"Dear Dr
It was very nice to see Kate today. She has had cranial advancement from which she has recovered extremely well.
From the eye point of view, we have no concerns today and all looks healthy. We will be reassessing her again in the Eye Clinic in 6 months.
Kind regards,
XXX
Consultant Ophthalmic Surgeon"
Saturday, 15 June 2013
Post surgery Eye Appointment
We saw the ophthalmologists and consultant this Thurs, 13th June 2013, at our local eye hospital.
I mentioned the squint and first the lady who did all the basic tests said she sees no squint. This was extremely good to hear. Kate being able to talk a lot more now was able to be tested better than before as she could name all the things they were holding up for her to see this time. She's now 20 mths old.
By the time we saw the consultant Kate had had enough of waiting. Me too! It was difficult for them to examine the back of here eyes etc as she didn't like them (one man & lady) at all. Crying isnt a good 'mode' to be in for an eye examination! I had been prepared as we've waited a long time there before, but she was hungry and she didn't like their lights or headgear!!
A chocolate roll helped & the consultant got to see what she wanted in the end and said there's no sign of any problems, pressure or anything. She seemed happy with everything.
She thought Kate looked remarkably good after her surgery and said that the darkness under her eyes will continue to fade, it's just a very sensitive and translucent bit of skin.
We will have a follow-up appointment with them in 6 months.
Wednesday, 5 June 2013
5th June, 7 weeks post-op
Just a quick post to say Kate still has very slight dark marks under her eyes still but they are fading.
The scab of her scar is beginning to come off in bits with the stitches and the skin looks great, though you can see through it a dark line, that I think is where you can see where the bone was cut - or maybe it is just the scar. It's hard to tell when they hardly shaved off any of her hair. I can't really see!
We have her eye appointment next Thursday. This is with the original Opthalmologist department at our local hospital, Sutton Eye Hospital. We'll see the consultant that originally referred us to Great Ormond Street before we knew she had Craniosynostosis. Her squint looks much less than before when I've posted, but I'm keen to discuss what might happen and how this will be dealt with if it doesn't correct itself.
I've noticed since our 5 year old's class at school had vision checks that a few have now got glasses. One Mum I spoke to yesterday said it's because her daughter has a lazy eye (similar to, or can cause a squint) and they're doing glasses before patching. The squint operation isn't anything major but it is something I'd like to avoid, obviously!
The scab of her scar is beginning to come off in bits with the stitches and the skin looks great, though you can see through it a dark line, that I think is where you can see where the bone was cut - or maybe it is just the scar. It's hard to tell when they hardly shaved off any of her hair. I can't really see!
We have her eye appointment next Thursday. This is with the original Opthalmologist department at our local hospital, Sutton Eye Hospital. We'll see the consultant that originally referred us to Great Ormond Street before we knew she had Craniosynostosis. Her squint looks much less than before when I've posted, but I'm keen to discuss what might happen and how this will be dealt with if it doesn't correct itself.
I've noticed since our 5 year old's class at school had vision checks that a few have now got glasses. One Mum I spoke to yesterday said it's because her daughter has a lazy eye (similar to, or can cause a squint) and they're doing glasses before patching. The squint operation isn't anything major but it is something I'd like to avoid, obviously!
I'll post again when we've had our appointment next week at the eye hospital.
Friday, 17 May 2013
One calendar month Post-Op!
It's a month ago, today, since Kate had her surgery. Here are some pics to compare and my current thoughts.
My thoughts and observations:
 |
| 15/05/2013 |
 |
| Before pic from March 2013 |
 |
| Recent Pic, May 2013 |
 |
| Before pic showing dip in forehead |
 |
| 17 May 2013 |
 |
| 17 May 2013 |
I still think her right eye 'looks' bigger than her left, which was the original thing that I flagged up when she was a tiny baby. The surgery was frontal orbital remodelling, so we thought it was supposed to correct this, as well as her head-shape and the premature fusion of the coronal suture. She still has a little darkness to the skin under her eyes.
Her forehead is definitely more even and rounded, without a flat/dipped bit above HER left eye (looking her and the pics - on the right). I still think her forehead is a bit swollen. I think her facial symmetry is better and this is all good :)
I hadn't noticed her eye being turned in (called a squint) before the op but now I look I can see it was a bit pre-op, but it looks more pronounced now, post-op. We were hoping surgery would avoid her getting a squint.
Now that the stitches are loosening and when the wind blows, you can easily see her scar and stitches , but when her hair grows some more this will be hidden I'm sure.
We've got completely back to normal, going to classes, toddler group and I'm even taking her to a fun place we love with a bouncy castle today. She had a bad knock to the head the other day but she's fine, and we've stopped giving her any medicine at all now as she seems fine & isn't obviously swelling up any more.
Thursday, 9 May 2013
Another week went by!
Kate still has just slight dark marks under her eyes that make her look like she's had a bad night's sleep! She's mostly sleeping through though and her eyes are not obviously swollen in the mornings any more. Her forehead and head still look swollen to me. She has had a couple of mornings when her waking screeching is suggestive of pain, so I've given her ibuprofen then and I'm continuing to make her daytime nap in the pushchair, only slightly tilted so she's not flat.
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| Mon 6th May |
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| Tues 7th May |
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| Weds 8th May |
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| Thurs 8th May |
I've almost fully recovered from the horrible flu-like illness of last week, and people have stopped stopping us to ask what has happened to her, though in returning to our classes & playgroups (just the ones without slides and bouncy castles so far!) it's still a major topic of discussion as our absence has been noticed!
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