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Williams
15th March 2005, 11:02 PM
Hi thanks for all your advice. I cann't tell you how much of a relief it is to find you all. Here is some more information about us and in particular Emme.Emme is a non identical twin her sister Jenny has a straight back. They were born by c.section at 32wks. Jenny weighed 4lbs and Emme 1lb 10&1/2oz. Emme was on oxygen for 10 months after birth. Her scoliosis was first noticed by her mother (Beverly) at 18 months. We were very quickly processed through to Mrs Metha. at Stanmore and she was started off in plaster casts for the next 2years or so. She has since been in Braces. Her curve when first diagnosed was about 26deg's and this has steadily worsened to 52 top 56 bottom. Her age is now 6years and 11 months. This is the same in the Brace as out of it. She dose have rotation with her cruve. We don't know what her lung capacity is. No Pulmonary workup yet.( This I don't understand). Her height is 3ft 9in. She is still attending R.N.O.H.Stanmore. Her Consultant is now Mr Tucker. She last saw his Registra Mr Hillton. We live in St.Albans Hertfordshire.
At this last meeting we were given the choice bettween casting and growth rods. The latter seems to be more likely to arrest the curve but involves removal of top and bottom discs which is irriversable and of course the traumar or surgery not only at the start of treatment but every 3months after to lengthen the rods. If Emme goes on to have her spine fused at a later date then all her discs would be removed at that stage. I would like to know more about the Titanium Rib. Does anyone know any web sites where I can reserch this or indeed any possible treatment which may be relevent to Emme's condition either now or later on. I have found some but non with info' on Growth Rods or the Titanium Rib. Thanks again Dave.

Jonny
15th March 2005, 11:23 PM
Sorry I can't help on the infantile scoliosis front, but I can reassure you that my consultant is also Mr Tucker at Stanmore - he is an excellent surgeon. On Friday he's going to fix my fusion. If there's anything you'd like to know, tell me :-)

andrea
16th March 2005, 10:18 AM
Hi again Dave. You don't say whether your daughter's scoliosis is congenital or ideopathic. We are also treated at Stanmore and our consultant is Mr Taylor. However, he is currently on a sabbatical and therefore we'll see someone different for a while. I like Mr Hilton, I always find him really good with Erin.

The Titanium rib project has a website (unofficial) - www.veptr.com - so you could start by looking on there. There is also an additional group you might like to join if you haven't already. If you go to www.infantilescoliosis.org there should be a link to a Yahoo Group called CAST. Most of the children are in casts, but a couple of people there have been through the project and will be able to give you heaps of info.

Hope this helps.
Andrea

Sealy
16th March 2005, 01:16 PM
Dave,

Your daughter was treated by Miss Mehta ??? Wow !!!! I wonder why her curve didn't resolve after two years in casts ? Does Emme have a rigid curve ? Did Miss Mehta give you any reasons as to why the curve was not resolving ? What kind of correction did you get with the casts ? Sorry for all the questions... I'm trying to understand. I'm sorry casting didn't work for your daughter - what a disappointment.

The Titanium Rib is a very good alternative. They are doing the procedure in England now. If you go to the website www.veptr.com you will find parents from all over the world that you can connect with.



Sealy

Sealy
31st March 2005, 05:45 PM
Dave,

Thanks so much for your p.m. There are a few moms going through casting with their children right now and your post has some of us ( ME :woe: ) worried. Was Emme first casted when her curve was 26 degrees ? If so, why wasn't Miss Mehta able to control rotation with the casts ? Given my very limited knowledge of scoliosis, my first guess would be that rotation wouldn't be a problem with a 26 degree curve - whether the curve was rigid or flexible. That wasn't the case with Emme though.





Sealy

andrea
31st March 2005, 07:09 PM
Thanks for raising this Sealy. It has also had me worried, the fact that Emme was diagnosed with a smaller curve than Erin and was treated by the "master" of serial plaster casting, yet the curve continued to progress. Hopefully Dave will be able to come back on and let us know more details.

Andrea

titch
31st March 2005, 08:30 PM
I've read on several occasions that curves with a strong rotational component can be harder to control than ones with more minimal rotation.

My own experience, which may lend anecdotal support to this, is that I definitely had a curvature by the time I was 8 which was large enough to cause significant difference in shoulder heights, and noticeable loss of torso length (it was always commented when trying to fit me for clothes, that I was "short waisted" because there was basically next to no gap between my ribs and pelvis), and yet it really was not an aggressive curve at all.

It was diagnosed at 51 degrees and measured at 56 degrees 3 months later when I was 16 - in practice this seems to have been a measuring difference rather than a genuine difference in size. It remained almost exactly the same size over the vast majority of the 4 years that I waited for surgery, and I don't think it had really changed massively from when I was 8 - without doubt it had crept up, but it hadn't aggressively increased as one might expect with an untreated curve in a child that young. However, I had *very* little rotation, especially for the magnitude of the curvature. I strongly suspect that this was what kept it from rapid deterioration, especially as the increase toward the end of my wait for surgery went hand in hand with a destabilisation in terms of rotation.

Williams
31st March 2005, 08:58 PM
Hi just to say thankyou for your comments I am sorry if I have given you cause for concern. We had a long chat with our G.P. last week and recorded the Discovery program last thursday we found this very helpful. Tommorow we have our appointment with Mr Tucker. Thanks to you all I now have a lot of questions for him I must get an eaily night as tomorow is an inportant day. But I will keep you informed as soon as we have time to digest the information we gleen tomorow. Dave. Emmeline's Dad.

sins
31st March 2005, 09:05 PM
Good Luck tomorrow Dave.Fingers crossed for a positive appointment and some good news.
Sins

Sealy
31st March 2005, 09:53 PM
Titch,

Thanks so much ! There is so much I don't understand. I wish scoliosis were more of an exact science.



Dave,

I hope things go well at your appointment tomorrow. Let us know what happens.






Sealy

IansMommy
1st April 2005, 09:29 PM
Dave, I wanted to say ditto to what Andrea said. There are a couple of parents on the Yahoo group whose children have gone through the VEPTR treatment.

Williams
7th April 2005, 12:30 AM
Hi with regard to Emme's last appointment at Stanmore. It has taken a little while to sink in so I haven't been talking about it too much. The meeting with Mr Tucker was somewhat surreal, he didn't have Emme's most recint Xrays.I don't think he had conversed about her case with Mr Hilton hes Registrar. So he seemed totally unaware of what had been told to us at our previous appointment. In fact if we hadn't pressed the matter the meeting would have been over in a few minutes. A quick assessment of Emme's back. He noted that her brace was too small and needed replacement. At that point we could well gave been on our way. However as you can imagine at this point we bombarded him with questions about what had been said to us by Mr Hilton. about all the possible treatment options we had researched in the previous three weeks. He said that because Emme's spine was so flexeble he felt that even though her curve had progressed past 50degrees that he wasn't to worried about it at this stage. He doesn't consider there to be critical point where the curvature necessitates action. He would be more concerned if the rotation ot the spine was greater it is at present 5degrees "Bummell" (not sure about the spelling) at the centre of the lumber curve. He is hopeful that with continued Bracing Emme won't need surgery until she is about 11years when she should get very good results from the "definitive surgery"i.e. rods and fusion. He went into some detail of how he would achieve correction at that time and it involved both anterior and posterior surgery with use or pedical screws. Emme's lung development is at preasent unaffected by the scoliosis.
As to how we feel? We are relieved that at this moment no surgery seems imminent. To operate on a child as young as Emme repeatedly should only be done to prevent a severe disabilaty reducing her quality of life or threatining it.We are still facing surgery as she reaches 11years which will be daunting enough but she should have achieved most of her growth by then. As to the difference of opinion bettween Mr Hilton and Mr Tucker. I can only say that I was in shock at the time. A day latter and the relief was huge. We are hopping for some concistency in the future although I have no doubt that there will be more trials ahead. Dave. :hammer: :hammer:

Jonny
7th April 2005, 12:38 AM
Glad to hear the appointment brought relief. The two of them aren't always consistent, no - when I came off one of my hooks (not Mr Tucker's fault, I don't think, just misfortune) Mr Hilton didn't spot it on x-ray or on my back but after 5 months and my situation getting worse, Mr Tucker instantly scheduled me for revision surgery that he performed three weeks later!

Good to hear her spine's flexible - I trust his diagnosis after he corrected my curves so well.

My surgery was also anterior and posterior by the same surgeon, so of course, ask me about anything you like.

Sealy
11th April 2005, 04:45 PM
Dave,

The thing that strikes me about your appointment with Mr. Tucker is that he didn't have Emme's most recent x-ray. In fact, he seemed totally unaware of the conversation you had with Mr. Hilton. If it were me, I wouldn't start celebrating just yet. I know that post-poning any surgery until she is much older is the best course, however as she gets older the curve will become more rigid and inflexible ( something you want to avoid ). I think you mentioned in a previous post that her curve in the brace and out is 50 degrees ? It's my understanding (correct me if I'm wrong veterans) that if a curve can only be reduced to 50 degrees with traction then that is the correction that can be expected with surgery ???? I would do everything within my power to keep the curve from progressing beyond 50 degrees and perhaps even try reducing it with a round of casting. Interesting about the rotation - I think it's Bunnell, named after the doctor who developed the scoliometer.




Sealy