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Old 12-01-2012, 07:33 PM
Reillygirl Reillygirl is offline
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Red face New Member needing support

Hello Everyone
I am a concerned mother of a 14yr old daughter with special needs. She has an undiagnosed condition but comes under the Global Development Delay label. My daughter is in a wheelchair but can stand with help. She has had scoliosis all her life and in the last three years the cobb angles have gone from 35 degrees to 55 degress to the lastest xray being of most concern with the following cobb angles - S-shaped scoliosis right-ward in the thoracic spine and left ward in the lumbar spine cobb angles are T3 to T12 65 degrees and T12 to L4 87 degrees. What concerns me is that my daughter is non verbal and has challenging behaviours which are very serious with self harm eg biting hands, head banging, punching herself in the face. Over the last 12mths I have noticed that she has a red like burning around her mouth and red gums which I feel could be reflux due to the scoliosis. Reilly use to eat pureed food and now has stopped eating and will only drink a supplement drink to survive literally. I am from brisbane and see her Orthopedic Surgeon each year. I ask him every time could she be in pain, organs being crushed. I have made an urgent appointment for next week but feel it is time for surgery before she gets much worse. Her Dr is worried about her behaviours with post surgery recovery but I feel we could handle this with medications. What I am asking is have many of you had second opionions and parents with children with disabilities have you felt like your Dr has put you off the surgery. Having read alot of the message posts there seems to be people having surgery with alot less cobb angles to my daughter.
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Old 12-01-2012, 09:43 PM
Christine Christine is offline
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Default Re: New Member needing support

Hello

I am an adult with scoliosis. I had my corrective surgery in June last year in Melbourne. Unfortunately I have little to suggest but I have been following many on this forum who have had their children go through surgeries and bracing. There are a few who are from Brisbane and have had positive outcomes with their surgeons, so I expect some advice will come your way.

Anyway, I just wanted to say hello and to reassure you that someone will post a reply to you soon. The forum has been quiet lately, probably many members are enjoying summer holidays. But we are a very helpful bunch! If not helpful, very very supportive.

I do hope you find the right answer from your surgeon's appointment next week. It sounds like your daughter needs some help, pronto.

Warmest wishes for you and your daughter
Christine xxx
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  #3  
Old 17-01-2012, 09:22 PM
MySon MySon is offline
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Join Date: Sep 2011
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Default Re: New Member needing support

Dear Reillygirl - welcome to the forum.

My son had similar curves to your daughter and had very successful surgery in Brisbane in October. Send me a private message and I will share the Doctor and Hospital details and they are highly recommended.

You have a lot of worries on your hands in dealing with an undiagnosed condition - that really must be a challenge for you.

From my research it seems that most 14 year olds with similar scoliosis to your daughter don't experience much (if any at all) pain. It is more the risk of the curve only getting worse over time that prompts us to get the surgery when they are young and more resilient to the operation.

My son had no pain at all prior to the operation and that made it difficult in choosing to put him through such a major op. But I am so glad we chose to have it done now when he was able to rest and recouperate and recover without the stresses of work and family or studies.

Dane is so good - he is straight and tall and feels no pain at all from the operation or two rods inserted from t3 - t12. He has resumed sailing, riding, swimming and going down water slides etc. It is wonderful to have this behind me and I feel great that the curve in no longer causing him rib cage to press on his heart and his bladder problems have also improved.

See the specialists first - they are fabulous - they don't push but really do have tremendous patience in helping you deal with the millions of questions you will have.

The operation is major surgery, and it is stressful making sure you have addressed all the potential risks and concerns before taking the big step.

I felt I had time to make my decision - a couple of months won't make a big difference.

Your daughters lack of communication skills probably makes it even more difficult for you - but if I can help in any way from my own son's experience feel free to ask as many questions as you like.

Good luck in your decision.

KInd regards
Chris


Quote:
Originally Posted by Reillygirl View Post
Hello Everyone
I am a concerned mother of a 14yr old daughter with special needs. She has an undiagnosed condition but comes under the Global Development Delay label. My daughter is in a wheelchair but can stand with help. She has had scoliosis all her life and in the last three years the cobb angles have gone from 35 degrees to 55 degress to the lastest xray being of most concern with the following cobb angles - S-shaped scoliosis right-ward in the thoracic spine and left ward in the lumbar spine cobb angles are T3 to T12 65 degrees and T12 to L4 87 degrees. What concerns me is that my daughter is non verbal and has challenging behaviours which are very serious with self harm eg biting hands, head banging, punching herself in the face. Over the last 12mths I have noticed that she has a red like burning around her mouth and red gums which I feel could be reflux due to the scoliosis. Reilly use to eat pureed food and now has stopped eating and will only drink a supplement drink to survive literally. I am from brisbane and see her Orthopedic Surgeon each year. I ask him every time could she be in pain, organs being crushed. I have made an urgent appointment for next week but feel it is time for surgery before she gets much worse. Her Dr is worried about her behaviours with post surgery recovery but I feel we could handle this with medications. What I am asking is have many of you had second opionions and parents with children with disabilities have you felt like your Dr has put you off the surgery. Having read alot of the message posts there seems to be people having surgery with alot less cobb angles to my daughter.
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  #4  
Old 24-02-2012, 04:51 PM
tracy tracy is offline
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Join Date: Jul 2010
Posts: 129
Smile Re: New Member needing support

Hi there and welcome,

Firstly, what an incredible Mum!! Just wondering how you got on with Reillys appointment and what the outcome was?

I really cant comment on fusion, as we havent had it yet (weve had everything else!! LOL Waiting for Emily to grow, for fusion) I think sometimes when you are not happy with what you are hearing, a second opinion, can not hurt. Mothers instinct is not to be underestimated. Contrary to what we had been told, that Scoliosis doesnt cause pain??? Our daughter WAS IN PAIN!!! We saw 2 surgeons, in Newcastle and Sydney, before opting to go to Brisbane. We have an amazing, compasionate team, and have not looked back on travelling. At the end of the day, our kids health and happiness, is all that matters. It must be so hard for both you, and Reilly, without being verbal. Please private message me if you would like any information.

All the best

Tracy
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