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  #1  
Old 23rd June 2013, 10:59 PM
Angiejo Angiejo is offline
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Default New and seeking info on Magnetic Growth Rods

Hi, I am new to posting on this forum and I'm so pleased to have found it when I did. Reading the posts of others has been so informative and eye opening.

At a local hospital in London, my daughter who is 10 years old was recently diagnosed with A.I.S with an S curve of 64 degrees. We were referred to the Evelina Hospital and advised my daughter will need two operations (1) very soon to insert magnetic growth rods, (part of the trial taking place at GOSH, which I understand have produced really good results) and operation (2) when my daughter is a bit older and grown some more to have a spinal fusion. We were then referred from Evelina hospital to GOSH to see the same surgeon so all the patients on the trial can be kept together. We were pretty shocked by the news of 2 operations and as a result asked very little questions but we are getting questions ready for the next appointment.

Other than what I have shared above, no additional info on the treatment has been given. So whilst awaiting an appointment at GOSH, I've gathered all that I know about A.I.S from these forums and the web. Its not always a good idea to search the web like this but this forum has been very good resources.

The roller coaster of emotions have been incredible. Right now we are good (thank God) and I'm trying to stay focussed for my child's sake who is in a good place and excited about GOSH. My daughter has shared she is getting pain in a few places which has caused me some anxiety. I want to take away the pain but I'm limited, so I gentle rub the affected area and give some pain relief when she needs it the most.

I would like to hear from others who have experienced the MAGnetic treatment at GOSH or another hospital where its taking place.

How long was the operation and the overall length of stay in hospital?
What could you do after the operation?
Did you have to wear a brace?
Once home how long before returning to school etc?
How often is the lengthening taking place?

I have load more questions but any info would be appreciated.
Thanks in advance
A. x
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Old 24th June 2013, 09:57 PM
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GillyG GillyG is offline
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Default Re: New and seeking info on Magnetic Growth Rods

Hi there

Have you already read this thread?
http://www.scoliosis-support.org/showthread.php?t=16632

I think it should answer at least a few of your questions
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Old 25th June 2013, 07:14 PM
emma's mum emma's mum is offline
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Default Re: New and seeking info on Magnetic Growth Rods

hi my nine year old daughter has had the magnetic rods operation at queens medical nottingham on may the 18th this year.The operation took 6 and a half hours but we were told 4-6 hours.There was a slight problem with leaking spinal fluid so that could have been the extra time,also because of this she had to lay flat for 2 days which delayed her recovery.She went in to hdu for the first 24 hrs and normally the physio comes to get them out of bed the next day! When I was told this I was horrified but actually if you took away the two days flat she was perfectly ready to move at that point.Emma came home after 6 days and could stand,walk and go up and down stairs.She has to wear a brace which is not as bad as it sounds if you pm me your email i can send you a picture.The brace i am told is for 3 months but may be more or for certain activities.Funnily Emma feels happier in her brace and so am I. she is supposed to be off school for six weeks but was well enough to go back after three but she can't because of the danger of being knocked over,but she is going for an hour or so every other day with me as a minder! She also has a home tutor which she loves! All the attention on her obviously.She is having her first lengthening 3 months after the operation but this time depends on how quick the child is growing it can be every month. All in all I know it will be a totally stressful time but I can assure you it is no where near as bad as you are imagining. And Emma at 4 weeks after the operation said "i feel back to normal".The only problem now is knowing her limits and slowing her down.I hope this helps as we knew nothing when we started and know what a nightmare and whirlwind it is.Please contact me if there is anything else that I may be able to help you with but we are still learning as we are going. Good luck
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Old 26th June 2013, 11:46 PM
Angiejo Angiejo is offline
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Default Re: New and seeking info on Magnetic Growth Rods

thank youGilly G for the link which lead me to access more info.

Emma's mum, thank you too. It helps me to prepare/stay focussed. What an amazing recovery time for your daughter, even with the slight problem. And the home tutor support and gentle reintroduction to school is great tips. We have just been to the explore and learning centre for Maths and English which has an incredible happy supportive atmosphere which will help now and when my daughter is back up on her feet. I will send you a PM too.

How did you cope during those stressful times? I guess you just have to for your child's sake. Where you able to stay in with her the whole time?
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Old 27th June 2013, 01:13 PM
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Anthony's Dad Anthony's Dad is offline
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Default Re: New and seeking info on Magnetic Growth Rods

Hi Angie,

I am so happy to hear that your daughter is going to participate in the MAGEC rod program. You will not believe how much grief, pain and risk she will avoid by getting these magnetic rods made by Ellipse Technology. Most importantly, your daughter will not be facing surgery every 6 months to lengthen her growing rods and thus, be spared quite a bit of trauma. But you all still need to get past the first surgery hurdles.

So, let me tell you my understanding about how the MAGEC rods work. Every patient is different, so please talk to your daughter’s doctor to confirm and discuss your daughter’s specific situation. Anthony’s curvature was 105 degrees. Your daughter’s curve is approximately 65 degrees I believe. You are correct that the MAGEC rods require two surgeries. The first surgery will implant two MAGEC rods on either side of her spine. Your doctors will determine which vertebrae will serve as anchor points to achieve maximum straightness. The MAGEC rods are attached to the vertebrae with special surgical screws that are very long. I believe Anthony has 4 screws securing each rod. The MAGEC rods are usually inserted by making two incisions, each about 4-5 inches long, along the spine. The first incision starts around the waistline. The second incision is high between the shoulder blades. Anthony’s incisions are nearly 50 days old now and the scabs mostly fell off a few weeks ago. There is only one tiny area about 1mm in diameter below the back of his neck that still has a scab. The doctors say that once the incision is completely healed, Anthony can take a bath (instead of a shower) and go in the swimming pool.

A few words about the initial surgery. This was Anthony’s first major surgery, so it was challenging and stressful for so many reasons. Anthony had three skilled surgeons working on him. It only took three hours to implant his two MAGEC rods. I know Emma’s MAGEC surgery took twice as long, but she had some complications. Anyway, those three hours seemed like an eternity to my wife and I. Of course, we were thrilled when Dr. Akbarnia announced the surgery was a success and showed us the amazing x-rays that made my son’s spine look straighter than I ever imagined given his curvature. Anthony immediately grew two inches because of the surgery. However, seeing your child in recovery is still very, very difficult and emotional. Their face is flushed and puffy. They have tubes everywhere. You will feel so many emotions: concerns about their pain, excitement that everything went well, worries about their recovery process and tremendous relief that surgery is over. The first day or two after the surgery is a blur of activity. Nurses and doctors constantly checking on your child, getting acclimated to the hospital, nurses and staff, electronic machines making noises, etc., etc.

A day or two after surgery, your daughter will be measured for a plastic brace. The brace company will usually rush the brace so it is ready in a day or two. She must wear this brace for at least three months after the MAGEC surgery, except when she is sleeping. Most importantly, your daughter cannot bend, lift (more than a few pounds) or twist during these three months. Your nurses will teach you how to get your daughter out of bed safely. There are so many tubes, IV’s, catheter, and cords hooked up to your child immediately after surgery, that it requires a bit of practice and experience, so don’t be afraid to push the button to call for help at the earliest opportunity. The nurses will also roll your daughter from side to side every two hours. Plus, they will give additional medications and take vital signs frequently. Basically, this means no one gets much rest for the first few days. Additionally, your daughter will be extremely uncomfortable and possibly (probably) feel pain after surgery. I personally know that every grimace made by your child is instant pain transferred to the parent. In the U.S., patients (including kids) are given a button to push that delivers extra pain medication. The “pain” button can only be pushed once every twenty minutes. Parents are not allowed to push the button at any time. I hate this procedure, because it forces a child in pain to stay awake. Plus, Anthony sometimes awoke from a short nap in pain and it took awhile before the medication helped his pain. Please please please keep a log of the medications given to your daughter and how often they can be given. You need to monitor the medications because the nurses often receive instructions to administer drugs “as needed”. This can result in your child going for many hours without relief, unless it is requested. Especially when there is a changing of the guard, I mean, nurse. In the U.S., children are shown a piece of paper with different faces on it – ranging from happy to sad/crying. The child is asked to tell the nurse what kind of face he/she feels like. Some kids just don’t want to complain or admit they feel pain, so they give the nurse an inaccurate answer. I was constantly telling Anthony to fully express his condition / pain level.

Anthony experienced two complications after surgery. The first was constipation from the drugs that slow down your system. The doctors anticipate this and instruct the nurses to give liberal doses of stool softeners. As far as I am concerned, these stool softeners turn your child’s intestines into packed concrete. From my own experience in the hospital, I knew that Ducolax (an over the counter drug) was necessary to get Anthony’s intestines working again. So, I finally insisted that Ducolax be administered and it worked just as I predicted. The second complication was an extremely painful rash. Anthony was literally screaming in pain for several days which required even more pain medication. No one ever figured out what caused the rash – maybe an allergic reaction to tape or surgical solutions or ??? At first, the doctors just gave Anthony an allergy medication called Benadryl, but it did very little. At least 3 experts were called in to address the rash. Finally, the experts prescribed a drug called Kenalog. It worked very quickly to reduce the rash and pain. I highly recommend it for post-surgery rashes.

It all sounds onerous at first, but every day will get easier. Remember, kids just want to be kids and they just want to play. So, they really start to ignore the fact that they are wearing a brace after awhile and find a happy medium. Nearly two months after his surgery, Anthony still cannot put on his socks, but he is very active. He biggest complaint since leaving the hospital about leaving the hospital about ten days after surgery is that the brace and body sock make him itchy most of the time. However, Anthony has felt relatively no pain since leaving the hospital on May 15th. He has not even needed a Tylenol! This is absolutely incredible and a testament to his amazing team of surgeons: Dr. Akbarnia, Dr. Yasyaz and Dr. Mundis, as well as Rady Children’s Hospital San Diego and of course, the amazing people at Ellipse Technology who developed the MAGEC rods. You are so fortunate that the MAGEC rods are available in England because they are still not “approved” in the U.S. Anthony was only able to get the MAGEC rods implanted because my doctors and Ellipse made a special application to our government. I pray that the U.S. will recognize how critical the situation is and make these MAGEC rods available to all the children in the U.S. that must face surgeries every six months using standard growth rods. I was literally ready to sell everything and move my family to England or Europe or any place in the world to get this surgery for Anthony.

About a month or so after the MAGEC rods are implanted, your daughter will get non-surgical lengthenings that are accomplished using a remote control magnetic device that is placed on her back. The lengthening takes only minutes. Most of the time is spent with the doctor locating the implanted magnets using a little plastic stick or wand with a super magnet at the end. Anthony had his first lengthening on June 3, 2013, less than 30 days after his surgery. He felt no pain, but he did feel a little movement / tingle during the procedure. The first lengthening increased each rod approximately 5 mm. Anthony’s next lengthening is scheduled on August 19th.

In about 2 years, the MAGEC rods will have been fully extended. At that point, your surgeon will probably advise you that it is time to remove the MAGEC rods and fuse certain vertebrae your daughter’s spine. I am dreading this day for Anthony because fusion is highly more invasive surgery. There are different methods used to fuse vertebrae that you can read about on this forum or on Wikipedia. Certainly, Scoliosis Support has many members that are more qualified than me to discuss fusion surgery. But the bottom line is that your daughter’s spine will be fixed and no longer grow after fusion. I believe this is the second surgery that you are referring to. At that point, she will be about 12 – 13 years old and probably have reached a good height. After 12 - 13 years old, the doctors tell me that a child grows mostly in their lower torso. However, as an aside, I think some children might gain another inch or two if a second set of MAGEC rods were implanted. Fusion surgery will again impact your daughter’s flexibility, especially in the first year. However, you can read about the many great things people can do with fused spines on this forum (check out the thread “Things you can do with a fused spine”).

I trust and will pray that everything will go well with your daughter’s surgery. Please feel free to contact me if you have any additional questions or concerns.
Steve Wainess
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Old 27th June 2013, 01:59 PM
Angiejo Angiejo is offline
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Default Re: New and seeking info on Magnetic Growth Rods

Wow Steve . . wow!

I appreciate all that you have shared to help. Im a little wobbly right now but its better now then infront of my child. This is a much bigger process than I ever thought - wow!

My daughter was born extremely prematurely 10 years ago at 23 weeks gestations and we spent 5 months in NICU & SCBU. We are familar with hospitals/surgery but this is at the other end of the scale for me. I'm a bit lost for words but I've very grateful to you for being so open and honest.

Your son sounds like he is doing really really well and I pray he continues to do so. You could do with a wonderful family break somewhere to enjoy and celebrate your son's successful treatment.

Keep talking and sharing, you can't begin to imagine the number of people your story and experiences are helping.

Thank you.
Angiejo
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Old 23rd July 2013, 11:04 PM
Angiejo Angiejo is offline
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Default Re: New and seeking info on Magnetic Growth Rods

Hi had referral appt at GOSH so awaiting MRI in August then assessment appt to follow. We've been added to the waiting list for the MAGEC Rods.

My daughter has been using a cushion for back support at school and much more at home now. She seem to be in a lot more discomfort and just wondering what others have done to help their children with the aches and pains?

We have enjoyed swimming previously so just wondering if that would help along with back rubs!

Angiejo
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Old 24th July 2013, 07:43 PM
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GillyG GillyG is offline
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Default Re: New and seeking info on Magnetic Growth Rods

Swimming is a very good all-round exercise, so should be ideal
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Old 6th February 2014, 02:34 PM
galaxygibson galaxygibson is offline
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Default Re: New and seeking info on Magnetic Growth Rods

Hi just a quick one my daughter as 55 and 35 degree she 11 and at 5 foot 7 she is a good hight now but she has a lot more growing to do , they say she could of got to 6 foot . Would magnetic growth rods work for her and if so where could we get it done and would they do it because she is a good hight already . Thank you all
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Old 6th February 2014, 05:10 PM
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Default Re: New and seeking info on Magnetic Growth Rods

Hi Galaxy, at the age of 11 your daughter is much more likely to be recommended for fusion surgery than for growth rods. Growth rods tend to be used for the under 10s, who have either infantile or juvenile scoliosis and need to buy time to grow so that they can reach a decent height and so their lungs/ribcage can develop fully before they are fused. You can certainly ask about growth rods but I think it's unlikely that she would be offered them.

Magnetic growth rods are done by surgeons at Great Ormond Street in London; you could make a private appointment with Hilali Noordeen if this is something you wish to pursue.

Good luck! And

Toni xx
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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Old 9th February 2014, 09:10 AM
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Default Re: New and seeking info on Magnetic Growth Rods

Hi. I just want to add that GOSH is a great hospital to be at. The spinal team, together with that at RNOH Stanmore, is leading the way and has a large growth rod programme. Magnetic rods came too late for us, my daughter had the traditional ones that require surgery to lengthen them every 6 months. It was a very stressful time but she is now nearly 3 years post-fusion and we are living life where we dont think about scoliosis anymore. Something I never imagined would be possible. Good luck. It is harder for the parents to witness than the child going through it. X
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Mum to Maddy aged 14. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.
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Old 1st April 2014, 10:07 PM
libertylou libertylou is offline
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Default Re: New and seeking info on Magnetic Growth Rods

Hi Angiejo
your daughters story sounds very similar to my daughters.
She was diagnose with a 54 degree curve in September 2013 just after her 11th birthday. She has been wearing a Boston brace under GOSH since December 2013 religiously 23 hours a day. Unfortunately I noticed a new lump in her back recently and asked for an appointment which we went to last week. It appears he back is now rotating as well as the double curve and the consultant has suggested magnetic growth rods as she is still very small.
I look forward to hearing peoples reply to your post as we have been told we have a 4-6 month wait.
They are sending my daughter for an MRI first which they said will take an hour! This seems a very long time.

Good luck with your journey.
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Old 4th June 2014, 01:43 AM
Angiejo Angiejo is offline
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Default Re: New and seeking info on Magnetic Growth Rods

Hi all,

Its been a very long time since I've added a post but I wanted to give you all a quick update. My daughter was scheduled to have growth rods inserted but after a pre op assessment, it was agreed that a Spinal Fusion would be best due to her height, age and size of curve. It was a shock getting that news as we had prepared so much for the growth rods and put to one side all info concerning a spinal fusion for a few years. I had no idea it was possible to have a spinal fusion at this age. It actually worked out for best as we now only need the one op.

We had surgery at GOSH on the 10th Feb and I must say the staff looked after my daughter very well on the spinal ward. The surgery was about 5-6 hours long although it felt much longer. My daughter went into surgery in an incredibly positive way, I was blown away by her faith and spirit that no matter what she was 'going to get fixed'. Even as she climbed onto the bed and was smiling and so excited about the whole experience. There was no fear at all. When the anesthetic was administered the atmosphere completely changed. Her joy turned to tears of distress as it was quite uncomfortable due to the tingly sensation going up her arms.

The crys for 'mum' hit me hard but I just had to hold back my own tears. I was so glad I was close by to comfort her. I whispered to her that its all ok and to have a little sleep. I'm pretty sure it helped her as she rolled over, curled up into the fetal position and went to sleep. Its very hard to see your child upset and then watch them go off to sleep for surgery. So many questions go through your mind and its the unknown behind the double doors. Having a family member or friend to look after you during this time is essential and the only way to cope.

Although I was worried about the whole experience, I had no choice but to trust the surgeon's hands and that of the team but most of all God. I'm very grateful it all went well and a double s curve was straightened from L1 to L12. The lower curve was not touched as in their expert opinion this would correct it self naturally in the next year.

The cocktail of meds and pain relief is so needed. Unfortuanately a side of effect of the cocktail was seeing doubles and hallucinations but thanking it was not for very long. For days, my daughter picked the highest score '10' to describe her pain level. After a complete loss of appetite and a drop in weight, on day 3 or 4 after surgery the physio team helped to get my daughter up. She was very dizzy and not able to go very far except first to the edge of the bed and later on from the edge of the bed to the chair. God bless her she did well but felt so rough afterwards. It wasn't long before she was up on a her feet and walking ever so slowly with support down the corridor. For me this was a miracle to see.

We went home by Ambulance on day 7 in hospital and after the Easter Holiday my daughter returned to school. You would not believe she's had such a major surgery if you saw her. I think she gained about an inch in height. Whilst off school we had some home tuition which helped especially as not long after returning to school it was time for her SATs. The school and her friends have been incredibly supportive which make this whole traumatic experience so bearable.


From time to time there is a little bit of discomfort in her side are but I think that's the lower curve and muscle stretching. Otherwise the sensitivity has lessened and I can actually touch the back without causing my daughter to jump.

My daughter takes no pain relief and walks a lot as well as doing the physio exercises. We have entered into a sponsored charity walk in July to raise money for Haiti so I hope its not too much for her but if it is, a mini coach will be at hand to offer a little bit of help.

People on this forum have been very supportive to me and my daughter and so if reading this post helps you, I'm ever so pleased.

all the best.

Angiejo
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Old 4th June 2014, 05:25 PM
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GillyG GillyG is offline
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Default Re: New and seeking info on Magnetic Growth Rods

Thank you so much for taking the time to write such a fantastic update on your daughter - what a little trouper she is! I'm so pleased to hear how well she is doing now
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