The last two weeks have been difficult – trying to accept the path that we are now on and at the same time, trying to forget about it for a while while we wait to get a surgery date. Mr Conlan is away on holiday so I know we won’t hear anything and yet I keep checking emails in the hope that there will be some news.
I still feel so emotional about it all and find I have to hold back the tears when we talk about Chris and what he has to go through. Fortunately, he seems to be coping with it all much better than his mother! He is just enjoying the summer holidays and not thinking about it – sensible boy.
Our next appointment is in September when we are going to Southampton Hospital to see Mr Evan Davies to get a second opinion about what is the best way forward for Chris.
After several conversations with family and with Chris we have made the decision to go ahead with the surgery. I have called Mr Conlan’s secretary and Chris is now in the system and will hopefully have surgery later this year. It is very much what he wants as he is against wearing a brace and having to work even harder at his exercises.
So, I have called and cancelled our RSC brace appointment tomorrow with Hugh Malleson. He was really kind and understanding and even offered to refund our appointment fee – what a gentleman. I wish he had been available a year ago and I think we would have had a brace made that Chris wore at night…I don’t think he would ever have accepted wearing it to school.
I feel completely shattered and emotionally drained. I can’t believe that I have just agreed to Chris having surgery, but I know it is the right decision for where we are now. Hopefully if he can be seen quickly he will be fit and well again before he starts Year 11 – his GCSE year.
After a terrible night’s sleep at the Travelodge in Cambridge (never staying there again!) we met Mr Conlan this morning at 9am.
He examined Chris and then we all sat down to discuss what our options were. We asked about bracing and Schroth clinics and whether this could help to stop the curve progressing further while Chris continues to grow. His advice was very clear.
- Chris has a substantial curve that will cause him significant problems in his adult life.
- His curve is likely to continue to progress with each growth spurt that he goes through.
- We could try bracing and Schroth clinics and come back to see him again in a year and, in his opinion, the curve would probably be worse.
He also explained that surgery is best done when the spine is still flexible and growing. Once growth is completed the spine become fixed and corrective surgery becomes much more complicated. At present Chris’s spine is flexible and his muscle structure is good – thanks to all the Schroth work we have done with him. This means surgery now would be less stressful on his body and have a greater chance of a good outcome and recovery.
We asked dozens of questions and were there for 40 minutes. At the end we asked Mr Conlan for his recommendation and it was very simple:
To book Chris in for surgery as soon as possible.
We explained that we wanted some time to talk it all through and would then contact him with our decision.
We then had a long and emotional drive home. Chris was upset – but when we discussed what it was that was upsetting him most he said it was the fact that we would have to cancel our trip to Canada this Christmas – not the surgery!!
The one thing we learned this morning that really had an impact on me is the fact that the best time for corrective surgery is when the spine is still flexible and growing. I had assumed (wrongly) that we would be advised to wait for surgery until Chris had finished growing. This puts everything in a different light and we have some really tough decisions to make now. Chris is about to start Year 10 and surgery now means he would miss a large chunk of his early GCSE curriculum, but if we wait and operate in 1 or 2 years time it is likely that the surgery will be more complicated and the desired outcome more difficult to achieve.
I have been so busy researching and making appointments for what Steve and I think is the best way forward for Chris that we have been guilty of not properly asking him.
When we did ask him it was not the answer we were expecting…
Chris wants to have the surgery.
This really shocked me as I have focused all my efforts on avoiding surgery. But given the situation we are now in and the size of Chris’s curve (58.9 degrees) he wants to have it straightened. And his reasons are entirely valid:
He wants his back and spine to look ‘normal’.
He doesn’t want to have do exercises morning and night for another 3 to 4 years.
He doesn’t want to have to wear a brace 23 hours a day for 3 to 4 years.
He doesn’t want to go to a residential Schroth clinic and exercise every day.
He just wants to get it fixed.
And I have to accept what he wants because it is his body and his life that will be affected. I am now even more grateful that we have our appointment on Friday with the surgeon as he can answer Chris’s questions about what the surgery would mean for him.
I find myself thinking: “Don’t ask the question if you don’t want to know the answer!” but I am so glad we did ask because now we can all work towards the outcome that Chris wants…which is to be ‘fixed’ as soon as possible.
I can’t quite believe this but I have managed to get an appointment with Mr David Conlan this Friday morning at 9am in Cambridge. I am amazed and delighted that we have got an appointment so quickly but Cambridge is about a two and a half hour drive away so I think it will be best to stay in Cambridge the night before our appointment…Travelodge here we come!
I also need to get Chris’s x-rays sent on to Mr Conlan so that he has them before our appointment on Friday.
I am really pleased that we are going to see a top consultant before we have our appointment in Cardiff for Chris to be measured for the RSC brace. I want to know what Mr Conlan’s views are on bracing and whether it will help us to delay surgery until Chris has finished growing (I am really concerned that if they fuse his spine now he won’t grow any taller). He is now almost an inch taller than me and eating a ridiculous amount of food (as most growing boys do!) but we think he probably still has another 4-5 inches of growing to do.
We are also going to sit down with Chris tonight and start to put together a list of questions that we want to ask at the appointment.
Wow! My sister Jackie has come up trumps with the names of two of the top surgeons working in the field of Scoliosis corrective surgery and I am happy to be able to share this information.
1. Mr David Conlan is a Consultant Orthopaedic Surgeon specialising in Paediatric Orthopaedics and Scoliosis and is based at Addenbrookes Hospital in Cambridge.
2. Mr Jan Lehovsky is a Consultant Orthopaedic Spinal Surgeon at the Royal National Orthopaedic Hospital, Stanmore.
My GP is writing a referral letter to these two surgeons for me. We are incredibly lucky to have private health cover so I am going to get on the phone and try and book an appointment with them…fingers crossed!
I spoke to Hugh Malleson from Cymortho (www.cymortho.co.uk) this evening and he was really positive about the effectiveness of the RSC brace which was developed by Dr Manuel Rigo of E. Salva Spinal Deformities Rehabilitation Institute in Barcelona. It is precision made in Germany by a company called Ortholutions (www.ortholutions.com) following an assessment with Hugh in which he takes many precise measurements and photographs of the spine. The following quote comes from Hugh’s website:
“The results of the assessment, the X-rays and digital photographs are all used by Dr Rigo to tailor each brace to the individual patient. No other brace manufacturer offers such a high degree of accuracy or clinically effective orthosis made in a CAD/CAM facility. Each brace is manufactured in their state-of-the-art facility in Rosenheim, Germany to exacting standards.”
It would mean travelling to Cardiff but Hugh has an appointment next Saturday morning and we have now booked that for Chris. I wish this form of bracing had been available a year ago and then we might have considered it when Chris was first diagnosed. Wearing the RSC brace and combining this with the Schroth exercises seems to give the best results in preventing curve progression in growing adolescents and, in some cases, even reducing the size of the curve.
I have also learnt that most of the growth in teenage children happens when they are asleep, so wearing a brace overnight really helps. I just hope it is still possible to help him by using this…and that he is willing to do it…and I’m not too sure about that.
On the positive side I really liked Hugh when I spoke to him as he was very knowledgeable about bracing but also understanding and sympathetic about our current situation. Let’s hope Saturday goes well!!
24 hours has now passed since we got the results of Chris’s x-ray and I still feel sick and anxious about what we should do next.
Do we accept that surgery is our only option, or do we look at bracing and perhaps sending Chris to a Schroth Clinic for some intensive therapy? I had a good chat with Debs our Schroth physio who was saddened by Chris’s x-ray results, but still very positive about what could be achieved before we commit ourselves to surgery. She advised us to continue with the exercises and to increase the effort and time spent doing them.
She has also given me details for an expert in orthotics and bracing who lives in Cardiff – Hugh Malleson. Hugh is apparently the first (and so far only) orthotic specialist to offer the RSC brace, considered by many who work with Scoliosis to be the most effective. You can read more about the RSC brace by visiting Hugh’s website: http://www.cymortho.co.uk
I have emailed Hugh to find out more and we are keeping up with the exercises.
Steve and I have also had a good talk with Chris about what the realistic options are for him now. He is anxious and uncertain about having to wear a brace but we are going to research it further and find out what would be involved. As ever he surprises us with his acceptance of all of this and doesn’t seem to be too distressed…unlike his mother!!
The picture below shows an RSC brace.
Once we had eaten some lunch and Chris seemed OK I took the dog out for a walk. This gave me a chance to let out some of my emotions without Chris seeing. I walked and cried and raged my way through the woods and then called my sister Jackie.
She listened and all but cried with me, but she also helped me to put this into perspective. We have tried really hard to beat this bastard condition and to stop curve progression but it hasn’t worked and now we have to focus on what is the best way forward for Chris. He has done these exercises for a year and it hasn’t stopped his curve from getting significantly worse. What it has done though is to keep his spine flexible and his muscle structure strong and balanced and I know from my research that both of these are important factors in surgery.
The other thing that my lovely sister said was that I have to be positive about this. It is not a terminal condition and there is a surgical option that can correct his spine – I just wish it didn’t terrify me so much…but it does. Jackie has also said she will speak to a friend she knows who is top physiotherapist and ask her to find out who is the best surgeon for scoliosis in adolescent teens.
Anyway, after crying and talking for an hour I came home, had a shower and carried on with normal family life…if there is such a thing?!
PS: this photo is of my gorgeous Cocker Spaniel, Roxy. She has great ears for mopping up my tears!
My world just fell apart again today.
Chris had his follow-up x-ray and his curve has progressed from 20 degrees last August to 58.9 degrees this August. That was the most devastating and distressing news but what made it even worse was the appalling way in which the consultant spoke to us. He mocked the fact that we had been using Schroth exercises and osteopathy to try and support Chris while he grows saying “Well that was obviously a complete waste of time”.
He was smug, unsympathetic and reduced Chris to tears. As he examined Chris he kept using the word deformed to refer to his spine and the position of his ribs, treating him like a piece of meat rather than an anxious child.
He told us the only option now was surgery and that he would refer us to Southampton Hospital. Chris sat next to me crying and not once did that vile man offer any words of sympathy or reassurance.
I drove home in a state of shock and when we got home did my best to comfort Chris without completely losing it myself. We had a cuddle and cry together and managed to talk about what our next steps might be.
I feel as if I have been kicked in the stomach again and on top of this I am so angry with the consultant we saw that I am writing a letter of complaint.