My name is Deirdre McDonnell. I was born with Kyphoscoliosis. Kyphosis is a forward bend and Scoliosis is a side to side curve. I work with Straight Ahead Ireland.
Deirdre's story:
I had double pneumonia when I was born and my parents were told I wouldn’t live very long. I had my first spinal surgery at aged six weeks. My parents were told I would never walk if I did survive. One day when I was just over one year old my parents brought me home from hospital after a check up & I was showing no signs of wanting to walk. I was sitting on the couch & they said I just got down, walked over to the corner to get my teddy bear! They were thrilled!!
Growing up I never really knew I was any different until I was about 8 years old. I was in a swimming pool and a child a bit older than myself commented very loudly on my back. It really hurt me, I guess I never really knew what was wrong with my back as I couldn’t see it every day as it was my back! I never learned to swim after that. My confidence was never great, I wore hoodies a lot & carried myself a certain way. I would rather be in pain trying to stand up “straight” than to stand out.
I missed a lot of school because I was always sick. I had lots of surgeries over the years and my last one was in Crumlin Hospital at the age of 21. I suffered so much from chest infections, in any given year from September to maybe April I could be on 30 antibiotics. No one ever really investigated this. I never had rods put in as a teenager as I was extremely high risk of being left in a wheelchair as I have Diastematomyelia (split spinal cord) and Syringomyelia (cyst on the cord) from my scoliosis so surgery to suddenly straighten my back was extremely high risk. These two neurological issues are monitored yearly.
My heart and lungs were being crushed and I didn’t know it. I plodded along with life until the chest infections were getting so bad. A new surgeon had taken over my case. His name was Pat Kiely. I immediately knew there was something different about him. He sent me off to Peamount hospital, this is a respiratory hospital and on the first day the Physio had me do a two minute walking test. This is a standard fitness test. He stopped it after two minutes! He told me my heart rate was 196 bpm, he then told me he jogs and his heart rate wouldn’t go that high & I was only walking slowly!! The next day I got all the PFT’s (pulmonary function tests) to see the extent of my lungs.
I came back two weeks later for the results. I was told I had stage one respiratory failure, my heart was starting to be affected and I had ten years left to live if I didn’t get the pressure off of my internaI organs. I was totally in shock. He told me I needed spinal surgery within 6 months, if I didn’t he would make sure no Anesthetist took me on as I would die on the table from respiratory arrest if I waited longer. I couldn't my believe it all but it was like everything clicked. This is why I didn’t feel great at all for years.
Pat said there was a new technology in the states called MAGEC rod. It wasn’t out long and this was my only hope. It was a much slower approach at straightening spines as opposed to maybe 12 hour surgery that would be a massive risk to me. This surgery was never done on an adult but I had to trust him. I guess you really don’t know how strong you are until you have no choice but to be strong. If I didn’t get the op I would die at some stage from respiratory failure and if I got into difficulty on the table I could die trying to live! The surgery also might not work as I was older, my spine was partly fused, ridged and as it was for children the odds were stacking up against me.
I went down to the theatre so so scared I cried for an hour leading up to it on my own in the shower. When I got to theatre I saw Pat in his scrubs for the first time and I knew this was it. We were both learning this together I guess. He was probably more scared than me!!
I woke up, I could feel my legs and I was alive! My spine moved a good bit & I left that theatre straighter and there was a chance I could get it straightened even more.
When MAGEC rod is placed in, you then go back as an outpatient and the rod is lengthened by magnets. In turn your spine gets slowly straighter. This cuts out the need for the numerous surgery’s kids can face while they are growing. MAGEC rod saved me. I went back to my respiratory doctor a few times after and my op & my lung function hadn’t gone up much but it wasn’t going down which was the main thing.
Just at my last appointment four months ago I was back in Peamount for the results of my breathing tests (these have been done once a year since my op in June 2014) this time my results were great. I am totally out of respiratory failure. They couldn’t believe it and everyone just hugged and kissed me as they had gotten to know me from going there so much. While I will never have the lung function of someone that doesn’t have scoliosis I am doing fantastically well. From January 2017 to January 2018 I had two antibiotics and one was for a throat infection!! This alone is life changing to me.
Embracing life and accepting that I can’t change certain things has made me a happier person. I have helped junior doctors understand Scoliosis since I was a teenager. I guess I have always been a conundrum to the medical profession in a way & now I use that as a strength to help them understand more. We learn from each other and I enjoy that. I guess I have a story many can learn from.
Two years ago I went public with my pioneering surgery. I was on the front cover of every paper in Ireland & some in the UK & America. I have spoken at medical conferences many times & to ministers for health. I am on a board with the hospital group to bring change to Scoliosis services. I co founded "Scoliosis and Awareness Support Ireland" & I set up a MAGEC rod support group. I work with Ireland’s only orthopaedic charity called Straight Ahead that was set up by my surgeon Pat Kiely and Shane Holland.
Straight ahead take time critical children off the HSE waiting lists, it is an amazing charity. The surgeons work Pro bono. It was set up in the recession in 2011 by Pat and Shane who are childhood friends from Cork. They had an idea after a young lad called Jason Slevin needed vital surgery but the money wasn’t there to do it. An anonymous donor came forward with the money for the op. This led the guys on to think this could work if people donated and maybe they could take a few more children off the waiting lists in extra time. Straight Ahead was born and to date we now are at 125 children who had their surgery done in extra time. Those ops included knees, hips, spines, feet, shoulders, anything bone related!!!
I am more or less with Straight Ahead since it’s foundation & I couldn’t be prouder. This charity is my life it is just so close to my heart. I am honoured to be part of it and this is what I want to do forever. I used to try hide the fact that I have scoliosis but now I shout it from the rooftops! I am proud of myself and all that I am doing to raise awareness. Scoliosis is not just a spinal condition, it affects your confidence, your schooling, your social life, it can affect your internal organs. My spine is straighter & my health is better & I will continue to fight for others like me until my last breath.
Deirdre
Deirdre's story:
I had double pneumonia when I was born and my parents were told I wouldn’t live very long. I had my first spinal surgery at aged six weeks. My parents were told I would never walk if I did survive. One day when I was just over one year old my parents brought me home from hospital after a check up & I was showing no signs of wanting to walk. I was sitting on the couch & they said I just got down, walked over to the corner to get my teddy bear! They were thrilled!!
Growing up I never really knew I was any different until I was about 8 years old. I was in a swimming pool and a child a bit older than myself commented very loudly on my back. It really hurt me, I guess I never really knew what was wrong with my back as I couldn’t see it every day as it was my back! I never learned to swim after that. My confidence was never great, I wore hoodies a lot & carried myself a certain way. I would rather be in pain trying to stand up “straight” than to stand out.
I missed a lot of school because I was always sick. I had lots of surgeries over the years and my last one was in Crumlin Hospital at the age of 21. I suffered so much from chest infections, in any given year from September to maybe April I could be on 30 antibiotics. No one ever really investigated this. I never had rods put in as a teenager as I was extremely high risk of being left in a wheelchair as I have Diastematomyelia (split spinal cord) and Syringomyelia (cyst on the cord) from my scoliosis so surgery to suddenly straighten my back was extremely high risk. These two neurological issues are monitored yearly.
My heart and lungs were being crushed and I didn’t know it. I plodded along with life until the chest infections were getting so bad. A new surgeon had taken over my case. His name was Pat Kiely. I immediately knew there was something different about him. He sent me off to Peamount hospital, this is a respiratory hospital and on the first day the Physio had me do a two minute walking test. This is a standard fitness test. He stopped it after two minutes! He told me my heart rate was 196 bpm, he then told me he jogs and his heart rate wouldn’t go that high & I was only walking slowly!! The next day I got all the PFT’s (pulmonary function tests) to see the extent of my lungs.
I came back two weeks later for the results. I was told I had stage one respiratory failure, my heart was starting to be affected and I had ten years left to live if I didn’t get the pressure off of my internaI organs. I was totally in shock. He told me I needed spinal surgery within 6 months, if I didn’t he would make sure no Anesthetist took me on as I would die on the table from respiratory arrest if I waited longer. I couldn't my believe it all but it was like everything clicked. This is why I didn’t feel great at all for years.
Pat said there was a new technology in the states called MAGEC rod. It wasn’t out long and this was my only hope. It was a much slower approach at straightening spines as opposed to maybe 12 hour surgery that would be a massive risk to me. This surgery was never done on an adult but I had to trust him. I guess you really don’t know how strong you are until you have no choice but to be strong. If I didn’t get the op I would die at some stage from respiratory failure and if I got into difficulty on the table I could die trying to live! The surgery also might not work as I was older, my spine was partly fused, ridged and as it was for children the odds were stacking up against me.
I went down to the theatre so so scared I cried for an hour leading up to it on my own in the shower. When I got to theatre I saw Pat in his scrubs for the first time and I knew this was it. We were both learning this together I guess. He was probably more scared than me!!
I woke up, I could feel my legs and I was alive! My spine moved a good bit & I left that theatre straighter and there was a chance I could get it straightened even more.
When MAGEC rod is placed in, you then go back as an outpatient and the rod is lengthened by magnets. In turn your spine gets slowly straighter. This cuts out the need for the numerous surgery’s kids can face while they are growing. MAGEC rod saved me. I went back to my respiratory doctor a few times after and my op & my lung function hadn’t gone up much but it wasn’t going down which was the main thing.
Just at my last appointment four months ago I was back in Peamount for the results of my breathing tests (these have been done once a year since my op in June 2014) this time my results were great. I am totally out of respiratory failure. They couldn’t believe it and everyone just hugged and kissed me as they had gotten to know me from going there so much. While I will never have the lung function of someone that doesn’t have scoliosis I am doing fantastically well. From January 2017 to January 2018 I had two antibiotics and one was for a throat infection!! This alone is life changing to me.
Embracing life and accepting that I can’t change certain things has made me a happier person. I have helped junior doctors understand Scoliosis since I was a teenager. I guess I have always been a conundrum to the medical profession in a way & now I use that as a strength to help them understand more. We learn from each other and I enjoy that. I guess I have a story many can learn from.
Two years ago I went public with my pioneering surgery. I was on the front cover of every paper in Ireland & some in the UK & America. I have spoken at medical conferences many times & to ministers for health. I am on a board with the hospital group to bring change to Scoliosis services. I co founded "Scoliosis and Awareness Support Ireland" & I set up a MAGEC rod support group. I work with Ireland’s only orthopaedic charity called Straight Ahead that was set up by my surgeon Pat Kiely and Shane Holland.
Straight ahead take time critical children off the HSE waiting lists, it is an amazing charity. The surgeons work Pro bono. It was set up in the recession in 2011 by Pat and Shane who are childhood friends from Cork. They had an idea after a young lad called Jason Slevin needed vital surgery but the money wasn’t there to do it. An anonymous donor came forward with the money for the op. This led the guys on to think this could work if people donated and maybe they could take a few more children off the waiting lists in extra time. Straight Ahead was born and to date we now are at 125 children who had their surgery done in extra time. Those ops included knees, hips, spines, feet, shoulders, anything bone related!!!
I am more or less with Straight Ahead since it’s foundation & I couldn’t be prouder. This charity is my life it is just so close to my heart. I am honoured to be part of it and this is what I want to do forever. I used to try hide the fact that I have scoliosis but now I shout it from the rooftops! I am proud of myself and all that I am doing to raise awareness. Scoliosis is not just a spinal condition, it affects your confidence, your schooling, your social life, it can affect your internal organs. My spine is straighter & my health is better & I will continue to fight for others like me until my last breath.
Deirdre