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Old 30-06-2010, 02:33 PM
Patricia Patricia is offline
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Default Looks like 2nd surgery for my 15 year old!

Hi all,
Firstly I'm so excited about the creation of this forum!!! Yayyyy!!! For so long been on the American one so 3 cheers for whoever finally got this off the ground. We needed it badly! Pity about the no mentioning of Dr Names.... sometimes a recommendation can really alleviate concerns, never mind!

Well, here is our story... Leash had her surgery Feb 2008, 2 weeks short of her 13th birthday. She was 46 degrees or 48 (can't remember) with major rotation in her thoracic region. Can never understand why they say Scoliosis doesn't cause pain, because Leash was having days of terrible rib pain.
She was fused in Sydney, T5 to L1 with a Thorocaplasty - removal of 5 ribs to reduce her rib hump and derotate her.

Surgery was a success except..... on the operating table surgeon discovered her pedicles too small and had to use hooks on her instead.

I guess normally this wouldn't be a problem but.... E was only Risser 0.

Everything was going fine and at the 6 month check up - beautiful correction! Then disaster struck.... towards the end of that year after Leash had an enourmous growth spurt I noticed the curve back!! X-rays revealed that there had been some crankshafting through the thoracic region along with a tilting of the L2 vertebrae, told that that was a seperate issue, but this lay person feels when you twist one end, the other end can only protest.

Surgeon advised going back in for a 2nd surgery, taking out rods and extending fusion down to L3, which is apparently the magic number for flexiblility. Problem was we were told, it could get worse, it may stabilise! What to do??? Problem was... why put your child through another surgery IF IT IS GOING TO STABILISE. We took the gamble and decided to play that horrible part of the Scoliosis game.... wait and see!

Well, Leash's rib hump is now back, almost to pre-surgery, her hips are back to totally being misaligned and the worse part is she's having days of excrutiating pain! Not every day, most days its just an ache, but yesterday she collapsed coming off the school bus in agony. Freezing weather didn't help.

I really hope that Leash's case is promoted in the Spine Surgery world of the importance of measuring pedicles prior to surgery.

With the advanced technology using pedicle screws - there is now no need to perform Anterior fusions prior to Posterior on a risser 0 child.... but in E's case if we had known about the Pedicle issue, we could have delayed surgery and waited for her Risser to increase.

I'm so happy about this forum..... I see so much done in the community for sick kids, cancer camps etc..... I feel that sometimes these kids have NOTHING to turn to. No support NOTHING. In fact, when Leash first went into a Boston brace prior to surgery, she was given the brace and sent on her merry way.... no counseling, no support, no follow up appointments to see how it was going!!! The brace can sometimes cause more Physcological damage than the Physical repair it is meant to do. It was horrible!

I'm going to check in often and hope that I can offer support and advice to other Aussie families going through a very difficult time.

Cheers
Trish
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  #2  
Old 21-07-2010, 05:32 PM
Dr Scoliosis Dr Scoliosis is offline
 
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Default Re: Looks like 2nd surgery for my 15 year old!

Patricia

Your post has been read with interest. A few comments may be helpful.

It is widely held but incorrectly so that idiopathic scoliosis developing in adolescence (defined as the period from 10-19 years of age) is painless. What might be best described as rather vague aching discomfort is not at all uncommon and it is presumed that this is because the tissues around the spine are being stretched as the curve develops. When the doctor asks the mother if the pain (or ache) was severe enough that this in itself would have prompted her to take her daughter to see the doctor, the answer to this question is almost invariably No. Teenagers are usually fairly reticent about such matters. On the other hand, when pain is the presenting symptom and is the reason why the patient sought medical advice then this is a red flag and other pathology needs to be excluded. In rare instances a benign tumour of the spine presents in this way.

The crankshaft effect is not well understood but it is well established that it is linked with the growth process. If a posterior fusion is carried out and there is significant growth potential remaining then the front of the spine, together with the ribs, will rotate around a solid posterior fusion. Hence, the term crankshaft.

This writer remembers well two patients who had severe curves treated when they were about ten years of age and anticipating the crankshaft effect, posterior and anterior fusions were performed and the latter were indisputably solid. Then, to his astonishment, the crankshaft effect still took place. It is to be acknowledged that bone is biologically plastic and the immature skeleton is very susceptible to minor disturbances of neuro-muscular control. This was a lesson learned well in the days when poliomyelitis was a common clinical problem. It became a well-established dictum that there was no point in correcting a deformity, for example by straightening a bent bone, unless you corrected the deforming forces namely, the muscle imbalance. If the imbalance was not corrected the deformity would recur. Hence, in the two patients cited this dictum applied. It is presumed that in your daughter, who had a "enormous growth spurt", this was the explanation for what took place.

As yet, there are no hard data relating to the effect of newer forms of instrumentation, including those incorporating pedicle screws, on the natural history of the crankshaft effect. However, some surgeons consider the pedicle screws inhibit the rotary changes in the vertebra. There is no reason why late rib rotation would be controlled by pedicle screws.

I trust these remarks are helpful.
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Old 21-07-2010, 06:53 PM
Jen Jen is offline
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Default Re: Looks like 2nd surgery for my 15 year old!

Hi Trish. I'm so glad Dr. Scoliosis saw your post and replied, because somehow I completely missed it.

I hope you haven't given up on us and will return to get your reply. Nothing I can add except to welcome you to the forum and hope that parents of adolescents with scoliosis can contribute something in the form of experience.

Best of luck to Leash and I hope you let us all know how she gets on in the future.
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Old 24-07-2010, 09:58 PM
Patricia Patricia is offline
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Default Re: Looks like 2nd surgery for my 15 year old!

Thank you Dr S and Jen,

That makes interesting reading in regards to the patients who were fused both Anterior and Posterior and yet still had crankshaft occur.

A benign tumor on the spine? Wouldn't the multitude of x-rays that she's had/having - have shown that up?

Well yes - the red flag issue meaning the pain that she has with her back. We rely on Mysendol for the really bad days. Taking her to see a GP is 100% useless, because really what are they going to do for her besides prescribe pain killers, she is very anti against taking drugs.

Interesting Dr S that you should mention "muscle imbalance" - that makes perfect sense to me and am totally surprised that Scoli patients haven't had a specific program devised for them. I was surprised when there was no rehabilitation program recommended after Leash's first surgery. No physio, nothing. You would think after such a major surgery for anyone... after muscles are stretched out of place etc, that some sort of rehabilitation and strengthening program introduced later in the recovery stage.

We see our surgeon soon and I know we will be asked what we want to do! What we want to do is obtain a magic wand (ebay perhaps??) and wave it over her to make this all go away. I'm all for (yikes what am I saying) another surgery IF... make that a BIG IF.... it can cure her of her back pain. I know our surgeon won't be able to give us that assurance and even if he did I still wouldn't believe it, this was all supposed to be fixed and Leash getting on with her life after the first time around... the thought of going through all this again is not funny at all. Let alone the financial burden of finding ANOTHER $7,000 Gap fee to pay.

Now a tough choice is in front of her as she goes into year 11 next year. Do the surgery after the SC.... or put it off and bear the pain for 2 years while trying her best at the HSC?? Another year of no sport - after only finally just getting herself fit and back into netball.

I want a medal for my child!!! What this kid has had to bear is unfair but she takes it all in her stride.

Will post the outcome of our visit in a few weeks.

Cheers to all
Trish
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Old 25-07-2010, 02:24 PM
Jen Jen is offline
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Default Re: Looks like 2nd surgery for my 15 year old!

A medal for Mum too, is in order. Looking forward to hearing the outcome.
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  #6  
Old 26-07-2010, 04:36 PM
Rodverta Braefusion Rodverta Braefusion is offline
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Default Re: Looks like 2nd surgery for my 15 year old!

Hi Patricia,
my home helper after my surgery, put off her daughters surgery until after her year 11 and 12. I have watched this poor girl go through so much. She had to time her pain relief spinal injections so that they co-incided with her exams. She also had to have special permission to get up and walk around during the exam. Personally, if that was my daughter, i would have had her have the surgery at the end of year10. (My personal opinion only). I asm so sorry you are going through this and i wish you all the best.

PS I wish i could give you and your daughter a medal and that magic wand!
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Old 28-07-2010, 09:08 PM
Dom's mum Dom's mum is offline
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Default Re: Looks like 2nd surgery for my 15 year old!

Hi Patricia,
As another mum I feel so much for you and your daughter. I have a 14 year old son and we are heading towards surgery. It breaks my heart to look at him and see how his body is and think about what he is going to go through. It must be so hard to line up for it a second time. Not having gone through it yet I know we want it done before he heads into his HSC (if that is the best thing for him physically), I think those last two years are such a busy time for them but also they grow so much in personality and socially that it is good to go into it the best they can be.
It is hard with the cost too, anyone who says money isn't important hasn't had to worry about how they are going to pay the electricity bill etc. I am interested to see what our banks reaction will be when we ask to increase our mortgage once we get a surgery date!
One thing I have noticed is that you get a diagnosis which can be pretty devastating and apart fom this forum no help is offered. Have you and your daughter had any counselling? I have spoken to our school counsllor and thought I will strongly encourage Dominic to go there once we have a surgery date.
Best wishes to you and your daughter.
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Old 29-07-2010, 12:15 AM
Rodverta Braefusion Rodverta Braefusion is offline
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Default Re: Looks like 2nd surgery for my 15 year old!

Hi Doms Mum, I agree with you about having no support. I don't see why there can't be a volunteer support group in every state. In the past (after my surgery)i have often thought of applying for the volunteer positions at the hospital (in the spinal surgery ward) where i had my op. I admit that apart from talking to one of my Docs previous patients and joining another forum (this one was not born at the time), I would not have known where to turn for support. I spent a lot of time reading and researching. As Jen on the forum always says 'knowledge is power'! She's right! Keep the questions coming mums and dads and 'we' as a collective forum shall try to help as best as we can. Goodnite all.
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Old 30-07-2010, 09:45 PM
ShortEb ShortEb is offline
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Default Re: Looks like 2nd surgery for my 15 year old!

Hi Patricia,
I just wanted to say that I am really sorry to hear what happened to your daughter! I am 11 weeks post op and am currently in year 11, and I don't regret having the surgery now over waiting until the end of the HSC - who knows if my pain could have been more severe than it was before surgery, and my curves were already increasing incredibly fast (and I still have about 18 months left of development, plenty of time for my curves to grow and grow..).
Your daughter has gone through so much, and it must be an incredibly hard decision as to whether or not she should have the 2nd surgery! I just hope that everything goes well from here on out for you both
Having my surgery now for me I feel was the right decision, as in my situation I was told I could have a very bad future ahead of me. I don't know your daughters situation, but with both your doctors opinion and your daughters feelings, you will come to the right decision
Best of luck to you both!
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Old 01-08-2010, 01:23 PM
Dom's mum Dom's mum is offline
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Default Re: Looks like 2nd surgery for my 15 year old!

Hi Rodverta,
Thanks for your reply, it thought it was just me that was floundering with diagnosis etc. Support in each state would be great only trouble is there has to be people with the time to do it. I know it made a huge difference to me in my early days of grief with our son, just knowing you are not alone, which is why I now help with a grief support group. Our doctor is going to put us in contact with other boys who have been through it (everything we read is about girls so that can cause another issue) but to be put in contact with a social worker or counsellor would be great. This forum is a good start, I hesitate to keep writing on it but I guess as you say the more we communicate the better for everyone.
Thanks for your input
Annette
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