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Old 23-08-2010, 08:40 PM
LynBB LynBB is offline
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Default New with lots of ???

Hi
My 14 yo daughter Laura was diagnosed this time last year with a 50 degree curve and her surgeon recommended a spinal fusion. As you could imagine we hit the net and got as much info as possible and played the waiting game. In early March we had all the pre op tests done and finally saw her surgeon in late June.
When Laura was initially diagnosed she had little to no deformity at all, I think her gymnastics assisted her posture greatly, so by the time we saw her surgeon in June it had become quite noticeable. Her curve is now at 100 degree and her surgeon recommends halo traction prior to the spinal fusion meaning 2 surgeries and anywhere up to 4 weeks in hosp. As you could imagine Laura (and myself) was horrified by the thought of this halo in her skull. She had accepted the spinal fusion but is not warming to the idea of this type of traction. Has anyone had any experience relating to this or could offer advice. She is worried about scaring etc:
Also I seem to have had very little information relating to what to expect, how long the surgery waiting list is etc: Are we normally left in the dark until the the surgery date approaches or should I be hounding my surgeon!!!
Any advice would be greatly appreciated
Lyn
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Old 23-08-2010, 09:17 PM
Rodverta Braefusion Rodverta Braefusion is offline
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Default Re: New with lots of ???

Hi Lynn & Laura, Welcome to the forum. I am so sorry to read that Lauras' curve has progressed so rapidly. I thought 1 degree per month (8 degrees in eight months) was bad, but 50 degrees in a year or less is a lot. Did your surgeon mention why the rapid progression. I hope some of the parents on here can help you. As far as waiting lists etc go, they usually offer you several dates, then inform you of exactly what is being done, whether its anterior/posterior or both in some cases. The length of recovery, what you should and shouldn't do etc. Have you read David Wolperts Book. It is a fantastic read and i highly recommend it. If you have any specific questions please o not hesitate to ask.
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Old 24-08-2010, 11:38 AM
Patricia Patricia is offline
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Default Re: New with lots of ???

Hi Lyn,

That's terrible news for you and your daughter Laura, my prayers and hopes for a good outcome are sent your way.

Such a shame..... there was an excellent blog on the net about a young girl called Emelina who had EXACTLY what Laura will be having. I've had a look and her blog is no longer up. She would be a young lady now and I guess no longer wants the world to see her pics.

From memory, reading her blog, she had screws inserted into her skull and the halo attached and rested in bed in hospital for a number of weeks before her surgery. This treatment was to try and stretch the curvature so that they could get a better outcome once fusion was carried out.
I'm sure Dr Scoliosis on this forum will be able to inform you better than I of the exact nature and reason for this to be done.

I can reassure you though, that I did see Emelina's pictures that she posted on the net and she had NO scaring what so ever. Years later she was a beautiful, normal young lady.

I've sent you a PM with my contact details if you wish to chat about anything. As you will see from my posts, my 15 year old, who had the surgery previously in 2008, will be having revision surgery at the end of November to fuse a further two Veterbrae. More than happy to chat and help out or lend a shoulder to cry on. As mums, we have a good cry as to what is happening to our precious kids, then we pull ourselves up and deal with what we have to deal with. Be strong, you both can do this!!

Cheers
Trish

Last edited by Patricia; 24-08-2010 at 11:39 AM. Reason: Made a boo boo
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Old 24-08-2010, 03:26 PM
Jen Jen is offline
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Default Re: New with lots of ???

I've just Googled "halo traction for scoliosis surgery" and found this:

http://www.eorthopod.com/content/tra...an-no-traction

I really hate to say this, because I don't want to cause alarm, but because this is a huge thing to face for a 14 y.o., I would suggest a second opinion before you go any further.

It may be that it's the best option, but...it's a biggie. Might be worth the expense and hassle of one more opinion. If you get the same report, then you'll know definitely that it's the best way to go.

Wishing you both the very best. Please keep in touch and let us know how your daughter goes on her journey.
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Old 24-08-2010, 03:43 PM
heatherb heatherb is offline
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Default Re: New with lots of ???

Hi Lynn and Laura,
I am new to this site, but not to the world of spinal curvature. My daughter Holly(now 17) was born with kyphoscoliosis(among other things) and she was monitored from birth. At 12, she was braced for 18 months, then had surgery to correct her kyphosis(curvature forward). The surgeon was sure he would do the surgery in 2 parts and have her in halo traction in between, which would mean ~8 weeks in hosp. It was very scary to think of her lying in hosp with a halo pinned thru her head. We had to wait, then when it came time for surgery, he had revised his plan and instead did an anterior posterior release and fusion. He felt this was a much safer way to go tho very lengthy. She was in surgery for 12 hours, ICU for 2 weeks and rehab for 10 days. That was 3 years ago and she is fine. Still has her scoliosis, but her kyphosis is much better.
I would be asking a lot of questions of your surgeon, especially about spinal movement, whilst she is in the halo?
Ask him also about waiting list time. We had to wait 6 months as our surgeon only did children once a week. Then you will get the letter, maybe 6 weeks before with a date for surgery. Before surgery u will need to see all sorts of people, so it won't be overnight.
I know it is very scary, but just remember to ask as many questions as you can. As you think of them write them down so you don't forget to ask the surgeon. Most important, Have Faith.
Cheers Heather
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Old 25-08-2010, 06:51 PM
Dr Scoliosis Dr Scoliosis is offline
 
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Default Re: New with lots of ???

A comment on halo traction.

The use of halo traction in the management of all forms of spinal deformity is much less than it was not so long ago.

First, because the halo is so securely fixed to the skull there is no pain associated with the halo. Very often the halos are put on using local anaesthetic. It depends very much on the individual patient as to whether they would be able to tolerate this. The halo is used for many cervical spine conditions in adults and then it is always put on with local anaesthetic. It is not unusual to have a patient in a halo fixed to some form of a brace for periods up to 18 months without any difficulty. If a halo pin is painful that means it is loose and tightening or replacement is needed.

Generally speaking the scars from the two pins at the front, which are located just above the outer margin of the eyebrow, leave minimal cosmetic blemishes.

Whether or not a severe curve would benefit from pre-operative halo traction depends very much on the nature of the curve and a host of other factors. There are no hard and fast rules and it would be reasonable to ask the surgeon concerned why halo traction is being recommended.

It is always difficult to give precise advice without being aware of all the pertinent clinical details.
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Old 11-09-2010, 04:11 PM
macky macky is offline
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Default Re: New with lots of ???

I would go and get another opinion Laura and make sure that the orthopaedic surgeon you go to is experienced in operating on scoliosis patients. My curve went down as quickly as your daughters and I had three curves, sort of like an S bend. This was in 1966 and had no traction just the operation. . Remembering we are all different though.
Hope all turns out really well for you all.

Lorraine.
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