Scoliosis SOS

Just a quick post after a very long break to say I had a consultation at the Scoliosis SOS clinic in London the other week and am now trying to get my PCT to agree to fund the treatment, after hearing that other people have been successful.

I would love to hear from anyone who has been to Scoliosis SOS about their experience. And also from those who have managed to obtain funding. You can email me privately via my profile page if you don't want to leave a public comment.

I'd really be interested to talk to people who have used this service.

Thanks!

Lorraine from The Apprentice

It's been a while since I blogged here but just time for a quick one!

Did anyone watch The Apprentice on Wednesday? It was the one when they interviewed the final five and before the main show, they did an extra hour showing the friends and family and life stories of the contestants.

Lorraine, the oldest contestant (still younger than me!) talked about having scoliosis and having a spinal fusion as a teenager. I really liked Lorraine. She was a bit different to the other business types in pinstripe suits, wasn't she? I'm still hoping she gets her own Mystic Meg show.

I'm hoping to pick up the blogging again this summer when other work has calmed down a bit. Continued thanks to those who read and those who have emailed me.

Gill Goodrich on body image, relationships and motherhood

Gill Goodrich, 51, lives with her husband and two teenage sons in Sheffield, South Yorkshire. Gill works part-time at Rotherham General Hospital as a Specialist Biomedical Scientist in Haematology and Blood Transfusion. She enjoys card making, cross-stitch and reading, and the whole family has started Geocaching, a kind of high-tech treasure hunt, which is a great way of getting everyone outdoors.

Here, Gill talks candidly about how scoliosis has affected her as a woman, from body image and relationships to motherhood.

When were you diagnosed with scoliosis?

I was diagnosed with scoliosis at about 14/15 years old but told that it wouldn’t get worse as I had finished growing. By my mid 20’s it was clear that it had progressed and a new batch of X-rays confirmed this. However, I was told that it was too late by then for anything to be done about it – I was simply too old!

How did your scoliosis affect your body image?

By my mid 20’s, my pelvis was badly tilted causing my right hip to be much higher than my left, and a noticeable discrepancy in leg length. I coped with this by making my own clothes in an attempt to hide my unevenness. I think in this regard my scoliosis actually helped me to find my individuality.

I was always quite a bubbly, friendly character, yet found it hard as a young woman to form relationships, as I was so self-conscious about my body that I could never take things to the next level, if you get my meaning!

Meeting my husband was the best thing that ever happened to me as he truly saw the person inside. Yet even so, as my scoliosis continued to progress and my body twisted more and more out of shape, I found that my self-image, and indeed my feeling of self-worth, became so poor that our intimacy was severely affected.

The progressive nature of my scoliosis meant that it became harder to find or make clothes to ‘fit’ as I reached my 40’s. As my body continued to collapse in on itself I went from 5’2” to 4’11”, causing my stomach to protrude, a very noticeable rib hump and my bottom rib to grind against my pelvis. Despite only being a size 8-10, I was wearing size 14-16 clothes in a futile attempt to disguise everything.

What challenges have you faced as a mother with scoliosis?

By the time I reached my 40’s, chronic pain was also becoming more of an issue and had begun to seriously restrict my activities. I felt like I was constantly letting the kids down by being unable to go places and enjoy doing things together as a family.

The thing which upset me most was when my youngest son came home from school one day in tears because one of his so-called friends had told all the class that his Mum was a hunchback. I wasn’t bothered for myself, but the effect it had on him will haunt me forever.

How did you come to have surgery and how has this affected your life?

The irony of my situation was that, having been told in my 20’s that nothing could be done for me; I never once went to the doctor about anything back related. I was actually being investigated for bowel problems and acid reflux when my GP suggested referring me to a specialist as it could be due to my twisted posture.

Assuming it would be a waste of time, I agreed to see a spinal specialist. I think you can probably imagine my shock when he suggested surgery to help stabilise my spine, especially since I was 48 by this time!

I wasn’t promised any great correction due to my age and the stiffness of my spine, but he advised me to do some research - as it’s certainly not a decision to be taken lightly - and let him know if I wanted to go on his waiting list.

I spent from October to Christmas reading everything I could find about spinal fusion surgery, went on the waiting list in January and had the surgery in August 2006 – aged 49!!

I am still amazed by the correction Mr Cole has managed to achieve. I now have two fairly even hips, a much smaller rib hump and have regained much of the height lost due to the twisting of my spine. I can wear close-fitting T-shirts and the leg length discrepancy is so slight that I don’t even need to alter trousers anymore!

Everyone who knew me before surgery has commented on how well I look (even how much younger I look!) and I feel great! My back pain is greatly reduced, although I do get shoulder/neck ache from time to time, and my bowel problems and acid reflux have completely resolved. I really do feel like I have been given a new lease of life.

The positive effect on my self-esteem has been profound. I honestly hadn’t realised just how much this was bothering me until afterwards. I had always assumed it was just the pain that was making me depressed. Needless to say, this huge confidence boost means that I no longer feel so disgusted by my appearance that I feel the need to shy away from even my husband.

What advice would you give to someone who has just been diagnosed to scoliosis?

The main advice I would give to a younger person who has just been diagnosed is to have regular check-ups with a scoliosis specialist. Some people are lucky enough to have very small curves which don’t go on to progress, or can be held stable by bracing.

Certain exercises can be very helpful in building up the core stability muscles, which act as a kind of ‘corset’ around the spine, thereby improving posture and often helping with pain relief. However, exercise is not able to alter the actual structure of the spine, therefore a curve which continues to progress post-adolescence needs very careful monitoring so that the surgeon can intervene if and when it becomes necessary.

As a general rule, the younger a person is when they have surgery, the quicker they will recover and the better the correction as there is less chance that the curve will have become rigid over time.

And my advice to any adults out there that have been told nothing can be done? - ask your GP for a referral to a different consultant for a second opinion as not all surgeons are happy to operate on adults, but I’m living proof that some of them are and it can quite literally change your life!

There will be a short break between posts while I gather and edit material for further interviews. It would be interesting to hear readers' thoughts and reflections on the interviews so far, so please do post your comments to share with others. Each of the personal stories published on this blog has struck a chord deep within me, with many of the feelings and themes explored echoing my own experiences.

Personally, I've been particularly struck by the similarities in terms of the distress caused by the cosmetic side of scoliosis, as well as the pain. I suspected that many women would feel awkward about the appearance of an uneven back due to societal pressure on women to conform to a certain stereotype. I hadn't realised before commissioning these interviews that men with scoliosis would share the same issues with body image. I found it very enlightening, moving and healing to read stories by men going through the same emotions.

I would like to thank everyone who has shared their experiences so far and continue to welcome new material.

Mark Wilkinson talks openly about psychological pain

Mark Wilkinson is married with a 4-year-old daughter, and currently works as a health and safety inspector in South Shields, UK, as well as pursuing active hobbies including rock climbing and mountain walks. Mark has Schueremann’s Kyphosis, which is different to scoliosis, although there are similarities. You can find out more about the condition via: http://www.scoliosis-support.org/showthread.php?t=2737

Here, Mark shares his courageous and unflinchingly honest account of the psychological pain of living with his condition.

When were you first diagnosed with Schueremann’s Kyphosis?

I first noticed my spine was curved about the age of 10. I noticed people staring at me for longer than would be the norm. When I started high school, I was taunted mercilessly just about every day for four years, in every class. Games were the worse, taking my clothes in front of others left ashamed and embarrassed.

My parents took me to see an orthopaedic specialist when I was 14, around 1984. I wasn’t told by the guy what condition I had; I was told surgery would leave me paraplegic and just to get on with the rest of my life. The whole consultation took about five minutes, after which my father drove me back to the cruel, punishing torture that was school.

It was never mentioned again, except sit up straight, put your shoulders back, stand up straight. Well I was stood up straight, but it was structural not postural. My curve was probably close on 100 degrees back then, but the guy never measured me. I have been now and the curve’s over 100 degrees.

Can you remember the reaction you had when learning you had Schueremann’s?

I didn’t have any reaction, as I was never told what condition I had. I just knew when I walked into the consultant’s office that I had a very significant hunch on my back and I wanted to leave knowing I would soon have a straight back. That never happened.

I just felt numb and couldn’t stop crying.I sat a lot in my bedroom with suicidal thoughts running through my head. I thought about suicide a lot back then and returning to the taunts and bullies was terrifying. I would far rather have been physically bullied - physical wounds can heal, mental ones fester and mine are all locked in boxes deep in my mind.

Most people are aware of the physical pain associated with scoliosis and similar conditions but not everyone understands that it can also bring psychological pain. How would describe the psychological pain of living with Schueremann’s?

Awful, depressing, it’s always on my mind. Schueremann’s has run my life. I don’t do too well in crowds, as I think everyone is staring at me, laughing at me, taunting me. When in company, I always stick to the back or against a wall so I can hide my back. I wear very baggy clothes and rarely take my suit jacket of at work.I hate having to go to church for any reason, I can literally feel everyone’s eyes boring into my back.

I don’t like going to warm countries for holidays because I never take off my tee-shirt. I don’t go swimming; I would love to take my daughter swimming but psychologically I can’t, I would be too self conscious.

I had a nervous breakdown in 1998 and was off work for about five months and had to endure taking Valium to get me better. It was not a good time in my life. Valium is a nasty drug to take and even worse to come off.

What have you found helps you with the psychological pain?

I researched my condition in my early 30s and I came across this wonderful website called scoliosis-support.org. They made me feel welcome, I wasn’t such a freak, no one judged me, they just offered the emotional crutch I needed, and I wasn’t alone. For the first time, I didn’t feel so alone.

I am now on prozac and see a therapist once a week arranged through work. I have come to the end of the line with this disease. I am seeing orthopaedic specialist who deals with adult complicated cases and this is my last shot. If I don’t get what I want here, then I don’t think I’m strong enough to cope.

My curve is progressing, its over 100 degrees and I can feel my body going forward.I can sum it up best by saying I was happy for the first 10 years of my life, I hated the next 27 and I want the next 30 or so years to be better than the last. I don’t want to feel miserable anymore. I don’t want to keep hiding. I want to be normal, do normal things without having to constantly think about my back, stop letting my back rule my life.

How have your experiences with Schueremann’s influenced your life and out look?

It affects it everyday. I was so, so angry when I was younger. I hated the kids for taunting me; I hated my parents for giving me this dodgy gene; I hated god for making me into this, what I considered at the time worthless excuse for a human being. I thought I was the only one.

I didn’t know until many years later after finding scoliosis-support.org, that maybe I shouldn’t blame any more.Blaming was making me more and more ill. I needed to let go of the blame and these wonderful people helped me do that. It was a slow process and the only one available to me.

Knowing others were out there were having the same experiences as me, it saved my life, it literally saved my life. I can’t thank these people enough.I visit the website every day to help support those going through the stuff I did. It’s part of my therapy too. I cry sometimes when I read people are still going through the same torment I was subjected to. I honestly don’t think I would be alive today had I not found scoliosis-support.org about five years ago.

What advice would give someone who has just been diagnosed with Schueremann’s?

That’s easy - don’t take no for an answer. Lots of surgeons won’t operate on Schueremann’s because it’s a more difficult operation than scoliosis, with a slightly increased risk, but there are surgeons out there who will. So if you get ‘sorry I can’t do anything for you’, ask for a referral elsewhere, do your research the internet’s a wonderful tool, investigate who the surgeons are that can help you, find a support site. (I found scoliosis-support.org and I consider it to be the best. However, you need to find one you are comfortable with.)

Ask lots of questions. Usually you find someone who can answer the most obscure question. When you go see the surgeon, don’t be afraid to ask questions, even have them written down so you don’t forget and write down his answers so you can think about them later.If you’re a parent reading this please, please, please don’t take the word of the first person you see as gospel, investigate all your options, get a second, third, fourth opinion.

My back was left of the scrap heap for years. Now I’m taking things in hand. I have learned the hard way but back in the day things were different but advances in medical procedures have meant even the worse curves can be saved.The post code lottery that is the NHS hasn’t done me many favours over the years but now I’m back on my journey, I can just about see light at the end of the tunnel, there has to be otherwise I don’t know what I am going to do.

Since writing this, Mark has seen his new consultant and is feeling much more hopeful about his future. Like Mark, I urge anyone who is in distress over their scoliosis to share their feelings with others who have been through similar experiences. Please don’t suffer in silence.

Next week, Gill Goodrich talks about body image and self esteem.

Shiva talks about growing up with scoliosis in Sri Lanka

Shivashankari Sivananth, aged 19, was diagnosed with scoliosis when she was one year old. She lives with her parents in Colombo, Sri Lanka, where she works as a Customer Service Executive. She enjoys reading fantasies and science fiction, watching fantasy and horror movies and doing 1000-piece jigsaw puzzles.

Shiva took some time out to talk about growing up in Sri Lanka with scoliosis.

What treatments are available for scoliosis in Sri Lanka?

None as far as I know. I had my surgery done as a research operation in 1992 in the U.S. Some of the bones in my spine were not filled causing a high risk of paralysis.

What is it like to grow up with scoliosis in Sri Lanka?

It's hell. Most people think that you are just some short shapeless person. I have come across several children and even adults who laugh at me behind my back or giggle in my face as if I am some big joke.

When I was ten I started schooling in Colombo. Despite my school being one of the leading schools of Colombo, I had a problem due to the lack of manners of students. They would stare and giggle at me whenever I entered a room. The smaller kids would point and laugh much to my embarrassment and discomfort.In addition, I was also badly bullied verbally and psychologically by my classmates.

The worst part was that the teachers took me as an easy prey and would attempt to scold me at every instance. They would also not let me do anything like Welcome Speeches, leading parts in dramas, Prizegiving speeches etc despite the fact that I was talented at acting, English & public speaking, mainly because they thought that I wasn't beautiful or shapely enough.

Since leaving school, I still have the problem of bullying in the office though. I find trustworthiness and true friendship hard to find. The way that the world looks at scoliosis has also made me a bitter and angry person.

How have you overcome these challenges?

I managed to overcome the social embarrassments by mostly ignoring them or giving them a cold stare. I also often put up good fights with the bullies so that they usually hated me and didn't wish to speak much to me.

I learned to sweet talk the teachers and look so innocent that they didn't have the heart to scold me without reason. I couldn't make them give me parts in leading roles in items, but I more than made up by being one of the top students in class.

What advice would you give to a young person who has just been diagnosed with scoliosis?

Never give up! If you think you can do something then you can!

I’m sure many of us experience times of anger at our situations, which is a natural part of being human. I would like to echo Shiva’s ending comments about the importance of not giving up when things feel difficult and ultimately in believing in yourself. Please see the links list on this blog for sources of support.

Next week, Mark Wilkinson talks openly about the psychological pain of living with Schueremann’s Kyphosis.

Simon Wainwright talks about kyphosis

Simon Wainwright, pictured (on the left) as best man at his brother's wedding, was diagnosed with kyphosis at the age of 14. Kyphosis is a curvature of the upper spine which causes a bowing of the back (as opposed to scoliosis which is a lateral curve which may also include rotated ribs.)

Here, Simon talks about what having kyphosis has meant for him and why he is looking forward. You can make contact with Simon and others via the forum at http://www.scoliosis-support.org/.

What was it like to grow up with kyphosis?

I got bullied at school so it was tough to get called names like hunchback. I got bullied very much. Never ever did anyone relate to my condition.

How have your experiences with kyphosis influenced your life and outlook?

It has influenced my life a lot. I am part of a forum at http://www.scoliosis-support.org/ that gives support to people with scoliosis/kyphosis. My life has been a very big rollarcoster of ups and downs - more downs then ups - but hopefully my outcome will good as I have just had major spinal surgery.

As I got older my hump went from 40 degrees to just under 98 degrees. Following an operation to insert two titiuun rods and 26 screws, my spine has gone down to under 40 degrees and I am so much more confident about the way I look now. I don't have to arch my spine back now walking down the street. I can walk down the road with a lot more confidence ....

What advice would you give to a young person who has just been diagnosed with scoliosis or kyphosis?

Try not to worry but please make sure you get yourself checked by a surgeon who specialises in scoliosis/kyphosis and join a good forum like SSO as we can all help everybody.

Simon's full story will be appearing in CHAT weekly magazine on the 18th September so look out for it in your local newsagent!

Next week, Shankari Sivanth, talks about life with scoliosis in Sri Lanka.

Jack Norman on striving to be 'normal'

Jack Norman, 63, retired from a long career in television promotion and marketing in 2006. He lives with his wife and son in North Georgia, USA and has two other adult children and three grandchildren. Here, he shares his powerful, moving and ultimately uplifting story of his struggle to live a normal life with a curved spine. Jack welcomes your contact via e-mail at jn2tv4@aol.com.

Can you tell me about when were you first diagnosed with scoliosis?

I was two years old when my mother took me to our family doctor and it was discovered that I had been born with scoliosis. The kyphosis was only slightly discernible at that time, but it was clear that my spine was curved.

My scoliosis did not interfere with my early childhood. I attended my first day at school holding a new school bag with a brand new ruler, eraser, un-sharpened pencil and wearing an "I Like Ike" campaign button.

The year was 1952. School was enjoyable for me then, because the curvature was not pronounced enough to be noticed by other kids. Interestingly, my family didn’t talk to me about my condition; so it wasn’t until I was in the first grade that I discovered it.

Curiously, when I would reach around to my back with my left hand, it was fine. But when I circled my right arm around to my back just below the shoulder blade, there was an obstruction. That was my first awareness that something was wrong with me, that I was different.

How was your scoliosis treated and how successful was this?

In 1963, when I was a sophomore in high school, my next-door neighbor told us about a doctor in New York City who was doing breakthrough back surgery and, in some cases, actually straightening curved spines.With that hope in mind, my family put me on a plane to New York City and made arrangements for my first surgery, a spinal fusion.

Even though Dr. Von Lackum was a pioneer and innovator in open-spine surgery, this was a radical and dangerous procedure for the times. However, he told my family that if I did not have the surgery to stop the progression of the curvature, I would be paralyzed or dead by age 35.

As a teenager, I was young enough that I trusted doctors and the medical system completely. I flew to New York City alone, caught a cab to the hospital and signed in for what was, at that point, an exciting adventure.

By the time I awakened in the recovery room, however, the excitement was gone. In its place was an agony that I never expected and will never be able to forget. I was told later that the surgery had been “difficult” and that I had spent many hours under the knife. It was, however, considered a success, and my scoliosis was thought to stabilized.

I flew home to Norfolk in a full-torso body cast. My mother and sister met me at the terminal and took me home for a four to six month recovery. Given the severity of my scoliosis, I am very thankful for my mother’s sacrifice in paying for my treatment. That spinal fusion enabled me to live the most normal life possible.

I ended up having a total of four surgical procedures, the last in 2002. I had thought all along that I had stabilized at 53 degrees and that it wasn't going to progress any further. Apparently, sometime between 1995 and 2000 the destabilization took place.

Change in pain levels over the years correlate directly with the sequence of surgeries. My overall pain level increased noticeably after each surgery, along with decreased flexibility and rotation of the spine, especially the cervical area.

How have your experiences with scoliosis influenced your life and outlook?

It is difficult to know exactly how scoliosis has affected my outlook on life. I cannot imagine life without it. It has been with me wherever I've gone, like a friend you don't want but in time learn to tolerate. I believe that looking back one day I will see that my disability has been directly responsible for my search within to rise above it.

For me, that search has led to a strong professional drive as well as to a deeper spiritual development that I may not have experienced otherwise.From my deep feelings of shame over scoliosis came an aggressive compulsion to succeed and to show the world that I was just as normal as anyone else.

This played out in the form of extremely long hours at work that I would dedicate to any assignment, along with a pattern of heroic endeavors to do whatever it took to fulfill any request made of me by my managers, regardless of how unreasonable.

I did my best to make myself indispensable and valued by my companies. I thought at the time that surely my 12-15 hour days and heroic all-night work sessions would cause me to be looked upon as “normal.” It didn't work! Even though I won numerous industry awards, substantial cash prizes and bonuses from my company and the praise of my peers and leadership, I could never silence that cry in me that said I was different, unequal to, and less than others.

My wife remembers a single day, perhaps the Red Letter Day of my professional life, when I was awarded a large cash bonus, was promoted to vice president, and received a standing ovation from my entire company. I missed the moment of glory, because I was at a hospital having x-rays made of my back. But later that night, after hearing about my promotion, I sat against the headboard of our bed and said to my wife, “I hate myself.”

Nothing could fill that empty hole in me. It was not until my spiritual search led me to a mature faith through Christ that I was able to accept myself and be at peace with who I am. Looking back on that frenzied life of trying to compensate for my scoliosis, I am very thankful for the place of peace I now enjoy. If my disability has contributed to bringing me to where I am now, then I see it as a blessing and not a curse.

Do you think the male experience of scoliosis differs to the female and if so, how?

The biggest setback for me as a male with scoliosis is its negative impact on my ability to participate in sports. I don't think I encountered many experiences more humiliating than having to explain to my high school gym coaches and peers in gym classes why I couldn't participate in the school athletics program.

Some coaches thought I was just shirking, others that I was weak, and of course in the showers peers ostracized me immediately for being different. The pain of this rejection was most acute at these times, especially for a young boy trying to form an image of himself and understand where he fit into his various social groups.

These events left deep emotional scars. As a 63 year-old adult, I have now made much progress in this area of self-esteem, but it is still painful to reflect on. Kids with disabilities suffer cruelly at the hands of so-called "normal" peers, especially males in the competitive field of athletics. For an adolescent boy or a teen, achievement in sports is where much of their positive self-esteem comes from.

When I wore what was known as a "Taylor brace," in elementary school through the 7th grade, I was a high-profile target for taunting. Perhaps you're familiar with this brace. At first glance it calls to mind images of the medieval "iron maiden," a device of torture that locked the victim into a hinged cage with protruding spikes.

My instrument of torture was made of a steel frame with holes for the arms and many leather straps that cinched the whole thing tightly onto the torso. Two steel rails in the form of a normal shaped spine pressed against my not-so-normal twisted spine and did its best to conform me to the shape of the steel one.

Growing up like this resulted in crippling self-consciousness that dogged me all the way through life. For someone who had spent most of his life trying to remain invisible from the eyes of others, the experience of speaking in front of a group was blatantly terrifying for me. I knew my fears were unreasonable but that didn't help.

Decades after I had put the physical brace aside, the debilitating impression it made on my mind and soul was still intact. I was terrified that anyone looking at me was going to know my dreaded secret that I had fought to keep to myself – that I was different, and worse, that I was deformed.

I had done my best to disguise the curve of my spine and hide my deformity, buying shirts an extra size larger to make them fit looser, standing as straight as I possibly could, and always either consciously or subconsciously, distracting anyone with me from seeing my back.

Really, it was not until I retired three years ago that I began to let go and to come to peace with myself. My entire career was spent in the emotional agony of feeling deformed and rejected and battling the chronic pain that drained me and gave me an appearance of being in nearly constant anguish. I thank God most of that is over now. It is bliss for me now to live daily with a family that loves and accepts me as I am.

What advice would you give to someone who has just been diagnosed with
scoliosis?

To be diagnosed with scoliosis today is much different that it was decades ago. With modern surgical techniques, there is little reason for anyone to suffer the pain and humiliation I experienced. Discovered early and with intervention, curved spines are routinely reconstructed and made normal.

The advice I would pass along for consideration for anyone with scoliosis is the same I would recommend to someone with any disability or serious illness: know who you are apart from your disability; don't let your disability define the person you are and are capable of becoming.

The greatest truth I have learned from my life experience so far is that we are more than our physical selves. To limit our self-view to what we can see in a mirror is to cheat ourselves of our best and most important part. For me the best part is my spirit and its perseverance beyond my physical body.

I’m sure Jack’s emotive story will touch many of us who have experienced similar feelings of shame about our scoliosis. Personally, I found it helps greatly to talk to others with similar experiences. Scoliosis Association UK have a peer network where they can put you in touch with others via http://www.sauk.org.uk/. Scoliosis Association US also have local support groups and hotlines - see http://www.scoliosis-assoc.org/

Next week, Simon Wainwright shares his experiences of kyphosis and why he is looking forward.