What is Scoliosis.
This is a curvature of the spine but can be different from person to person.
In this blog I will be telling my journey from diagnoses to treatment and how i coped.
It was from around the age of one that my parents started to notice that i wasn't sitting properly in my baby carrier. Every time I was at hospital my parents would mention it them that i seemed to be stooping forward in my carrier and that i looked extremely uncomfortable. The doctors would look at me and say, oh the reason he stooping forward is because he is protecting his stoma.
How could a one year old baby know they have a stoma and need to protect it. Now back in those days in the early 70s there were no stoma bags for babies. All I had was bandages wrapped around me many many times, so at that stage my parents just thought the doctors know best they must be right.
Over the next couple of years as I started to develop and grow i was shown signs that all was not good with the shape of my spine. When i was walking i seemed to be looking down and not straight forward and there was like a large lump starting to develop on the top right hand side of my spine.
At the age of 6 i had many X-rays and it was then i was diagnosed with a serious form of scoliosis. Kyphosis Scoliosis. This means that my was twisted more than 50 degrees and bending forward.
Over the following 2 years from the age of 6 to 8 i was monitored very closely because i was too young to have any type of treatment or surgery. My walking started to suffer and the back pain would get worse.
So one day i remember well when at the hospital my consultant was examining my spine and he said i think it's time that i had to have some sort of brace to wear to slow down the scoliosis. As a child i was told i would be getting a special jacket to wear but it would have to be specially made. All that went through my mind at the time was,, i going to be the coolest kid in school wearing a specially made jacket. How very wrong i was. This was the beginning of my worst nightmare.
For this brace to be made i had to have a fully body cast made, like a plaster cast on a broken bone. But once the cast had dried it was then gentle removed. But then had a problem...they had to cut a hole in the cast in the exact place where my stoma was. This was something new to the technicians as they had never encountered this before. So after nearly 2 hours of distress and getting upset the cast was finished and sent off to be made into a brace.
The exact name was a Milwaukee Brace. The name comes from America where the brace was invented.
2 weeks later my parents had a call from the hospital to take me up to clinic for my first fitting. I was excited and nervous at the same time, but thought, hey i getting a new jacket it can't be that bad.
When i walked into the consultants office and saw this strange looking metal and leather brace i could feel my eyes filling up and i started to cry... i just knew that was for me.
The following photo is what was similar to what i had to wear.....
Mine had to be modified with a large hole for access for my stoma bag to be changed. This brace had to be warn 24 hours a day. Only to be removed for baths.
Soon as it was fitted to me i hated it. I couldn't move my head or bend down to pick anything up.
And as i was so skinny the hard leather rubbed against both hips causing friction and skin issues.
I had to wear this brace for at least 2 years, and the aim was to stop my spine from bending forward and crushing my lungs until i was old enough to have surgery. My consultant kept saying the ideal age for surgery would be around 16 as i would of done most of my growing by then. Because any surgery before that age would result in me stunting my growth.
My day to day living over the following couple of years was painful and trying to sleep in that was nearly impossible. I had to be surrounded by 4-5 pillows to try and get any comfort.
Regular X-rays showed my scoliosis had slowed down but the pain was getting worse. There were times when my parents took the brace off for 24 hours just to give me a break and get a descent nights sleep.
The brace also made my stoma care more difficult. The side of the bags would catch the edge of the hole in the brace and would come off many times. This was a nightmare for me especially at school.
However as a family we managed the best we could and tried to have a normal life as possible trying not to make a big deal over it.
After 2 and a half years of struggling with sore hips and lots of stoma issues with the brace my consultant and parents decided maybe it would be in my best interests that I have surgery sooner rather than later. My parents were told it that surgery at aged 11 the chances of growing much taller were slim. They decided they would rather have a short me than keep suffering for the next 5 years with the brace, so surgery was agreed.
At the beginning of January 1983 I went into hospital for the surgery,,but what i hadn't been told the surgery had to be done in 2 parts.
Because my spine was bent forward and twisted it needed it to be straightened out flat so i could have metal rods implanted down each side of the spine.
Part 1 of the surgery i had to be in what was called a halo traction. This is where they fixed a halo to my skull with 8 screws and 2 thick pins into the side of my knees then having weights on each end.
Each day they would increase the weights on my head and legs until it reached nearly 60lb.
The only movement I had was my arms. I was placed on a special bed called a striker bed and i had to be turned over every 3 hours to prevent getting bed sores.
This lasted for 2 weeks, but the only pain i had was from the neck. The only relief i had from that pain was using hot packs.
Finally after 2 long weeks i was back down in theatre for the main surgery. I was in surgery for over 12 hours having harrington rods inserted. I had lost a lot of blood and needed a blood transfusion. This must of been so scary for my parents, i can't even imagine what they went through on that day.
It wasn't until the following day i woke up and the first thing i asked was, had they removed the halo. What a relief when i was told yes.
I was still on the striker and had to remain fully flat for a further 4 weeks. But at least i could move my head and legs.
It was a long 4 weeks not been able to move and i would get frustrated and angry. There is not much you can do looking at the ceiling or the floor.
Finally the 4 was over and it was into the next part of my recovery, I had to go back in that brace again for 3 - 6 months then it would be removed for good.
After 4 months i went to see my consultant, had the usual x-rays done and waited nervously for the results. My parents got called in to see him first without me. I started to panic that someone wasn't quite right...after about 20 mins the nurse took me into the room and i was asked how i was. My exacts words....i hate this blooming brace. My consultant laughed and said,,how would you like that blooming brace off of a night time for the next 2 months., then after that we can throw it away. I looked at my parents and they give me a little nod, so i turned back to my consultant and give him the thumbs up. What was 2 months after what i had been through over the past couple of years.
2 months later i was excited to go back to clinic because i knew what was going to happen. I couldn't get into the consultation room quick enough. This was the day that i could get rid of the brace for good.
My consultant joked that i could keep it on long if i wanted too,,,my reply..no blooming chance.
Finally he removed the brace for good. I was reminded that because i had metal rods and my spine fused from top to bottom my movements would be restricted for the rest of my life and the chances of growing any more was highly unlikely. Off i left his office in a very happy mood.
However.......
Just 2 years later my parents started to notice i wasn't walking properly and looked like i was in pain, in truth i was but never said anything. They decided to make an appointment at the hospital to see my consultant again. I thought nothing of it,, i can't grow the spine is fused there is nothing more can be done. I was sent for more x-rays. Whilst in the x-ray room waiting to see if they had all the images they wanted i could see the radiologist looking at my X-rays on the wall in full view of me.
Straight away i could see a curve in the spine...my heart sank. I could feel my eyes filling up, but kept telling myself, you can't cry here and now.
When i went back to outpatients my parents got called in first...i just knew something wasn't right. It was about 30 minutes later when i got called into the room with the nurse,,, i looked across to my parents and i had noticed my mum had been crying at some point.
Once again my consultant asked how i was... i looked at him and started to cry,,, i said,,, i know,,i know..i might be child but i seen the x-rays and there is a curve.
I had outgrown the rods by 3.6 inches. Then the crushing news, I had to go through all that surgery and having a brace all over again. The only difference this time was that i wouldn't have to wear the brace before surgery, he would operate within 6 weeks. I cried all the way home, i knew what to expect. The halo traction for 2 weeks then the main surgery.
3 weeks later i was back in hospital to go through it again. Finally 8 months later i had made a full recovery and the brace came off for good.
In 2003 i started to get a lot of lower back pain when walking,, which gradually got worse, and after complaining about it to my GP she referred me to be reviewed by a specialist spine surgeon.
This was the first time in over 15 years i had seen anyone about my scoliosis. Had the usual x-rays which showed no change from when i had surgery as a child which was reassuring. However to get a better idea of what might be happening the surgeon wanted to do and MRI scan. Now the only way that would be possible would be to have more surgery and remove the metal rods. Having thought about it at that time i refused, so it was suggested that i have injections in the nerves of the spine to try and block the nerve causing the pain when i walk.
I tried this option twice in 2 years without success and the only other chance of getting to the problem was having the MRI scan. As my walking was getting worse and i was now using a walking stick I asked if having the rods out would help my pain. The answer i got was it might, however it also might make the pain worse. I thought long and hard on this one, so i decided if there was a way forward it would be best to have the rods removed and have the MRI and hopefully they will find what is wrong and fix it.
This surgery was straight forward, opened up the top of the spine and the bottom of the spine unscrewed everything and pulled them out. My worry was that the spine would break after having all that support from the rods but i was reassured many times that could not happen.
It took about 4 months to fully recover and have the MRI.
A few weeks later i returned to clinic for the results. I was gutted there was nothing abnormal that could be causing this pain i was in. The spine is still twisted and he believes the pain was because of the major surgery i had been through as a child.
Basically he was telling me there was nothing more that could be done, and since having the rods removed the pain had become worse.
The only option he had was, he could do surgery to break my spine then rebuild it, but that came with to many risks and would let me go through such surgery.
So to this present day... my pain is still as bad as ever, I am on various pain medication via the pain management team, I can't walk without using my walking stick for short distances,, and for long distances I have to use my wheelchair.
Thankfully this hasn't stopped me from driving so i still have some independence.
This is a curvature of the spine but can be different from person to person.
In this blog I will be telling my journey from diagnoses to treatment and how i coped.
It was from around the age of one that my parents started to notice that i wasn't sitting properly in my baby carrier. Every time I was at hospital my parents would mention it them that i seemed to be stooping forward in my carrier and that i looked extremely uncomfortable. The doctors would look at me and say, oh the reason he stooping forward is because he is protecting his stoma.
How could a one year old baby know they have a stoma and need to protect it. Now back in those days in the early 70s there were no stoma bags for babies. All I had was bandages wrapped around me many many times, so at that stage my parents just thought the doctors know best they must be right.
Over the next couple of years as I started to develop and grow i was shown signs that all was not good with the shape of my spine. When i was walking i seemed to be looking down and not straight forward and there was like a large lump starting to develop on the top right hand side of my spine.
At the age of 6 i had many X-rays and it was then i was diagnosed with a serious form of scoliosis. Kyphosis Scoliosis. This means that my was twisted more than 50 degrees and bending forward.
Over the following 2 years from the age of 6 to 8 i was monitored very closely because i was too young to have any type of treatment or surgery. My walking started to suffer and the back pain would get worse.
So one day i remember well when at the hospital my consultant was examining my spine and he said i think it's time that i had to have some sort of brace to wear to slow down the scoliosis. As a child i was told i would be getting a special jacket to wear but it would have to be specially made. All that went through my mind at the time was,, i going to be the coolest kid in school wearing a specially made jacket. How very wrong i was. This was the beginning of my worst nightmare.
For this brace to be made i had to have a fully body cast made, like a plaster cast on a broken bone. But once the cast had dried it was then gentle removed. But then had a problem...they had to cut a hole in the cast in the exact place where my stoma was. This was something new to the technicians as they had never encountered this before. So after nearly 2 hours of distress and getting upset the cast was finished and sent off to be made into a brace.
The exact name was a Milwaukee Brace. The name comes from America where the brace was invented.
2 weeks later my parents had a call from the hospital to take me up to clinic for my first fitting. I was excited and nervous at the same time, but thought, hey i getting a new jacket it can't be that bad.
When i walked into the consultants office and saw this strange looking metal and leather brace i could feel my eyes filling up and i started to cry... i just knew that was for me.
The following photo is what was similar to what i had to wear.....
Mine had to be modified with a large hole for access for my stoma bag to be changed. This brace had to be warn 24 hours a day. Only to be removed for baths.
Soon as it was fitted to me i hated it. I couldn't move my head or bend down to pick anything up.
And as i was so skinny the hard leather rubbed against both hips causing friction and skin issues.
I had to wear this brace for at least 2 years, and the aim was to stop my spine from bending forward and crushing my lungs until i was old enough to have surgery. My consultant kept saying the ideal age for surgery would be around 16 as i would of done most of my growing by then. Because any surgery before that age would result in me stunting my growth.
My day to day living over the following couple of years was painful and trying to sleep in that was nearly impossible. I had to be surrounded by 4-5 pillows to try and get any comfort.
Regular X-rays showed my scoliosis had slowed down but the pain was getting worse. There were times when my parents took the brace off for 24 hours just to give me a break and get a descent nights sleep.
The brace also made my stoma care more difficult. The side of the bags would catch the edge of the hole in the brace and would come off many times. This was a nightmare for me especially at school.
However as a family we managed the best we could and tried to have a normal life as possible trying not to make a big deal over it.
After 2 and a half years of struggling with sore hips and lots of stoma issues with the brace my consultant and parents decided maybe it would be in my best interests that I have surgery sooner rather than later. My parents were told it that surgery at aged 11 the chances of growing much taller were slim. They decided they would rather have a short me than keep suffering for the next 5 years with the brace, so surgery was agreed.
At the beginning of January 1983 I went into hospital for the surgery,,but what i hadn't been told the surgery had to be done in 2 parts.
Because my spine was bent forward and twisted it needed it to be straightened out flat so i could have metal rods implanted down each side of the spine.
Part 1 of the surgery i had to be in what was called a halo traction. This is where they fixed a halo to my skull with 8 screws and 2 thick pins into the side of my knees then having weights on each end.
Each day they would increase the weights on my head and legs until it reached nearly 60lb.
The only movement I had was my arms. I was placed on a special bed called a striker bed and i had to be turned over every 3 hours to prevent getting bed sores.
This lasted for 2 weeks, but the only pain i had was from the neck. The only relief i had from that pain was using hot packs.
Finally after 2 long weeks i was back down in theatre for the main surgery. I was in surgery for over 12 hours having harrington rods inserted. I had lost a lot of blood and needed a blood transfusion. This must of been so scary for my parents, i can't even imagine what they went through on that day.It wasn't until the following day i woke up and the first thing i asked was, had they removed the halo. What a relief when i was told yes.
I was still on the striker and had to remain fully flat for a further 4 weeks. But at least i could move my head and legs.
It was a long 4 weeks not been able to move and i would get frustrated and angry. There is not much you can do looking at the ceiling or the floor.
Finally the 4 was over and it was into the next part of my recovery, I had to go back in that brace again for 3 - 6 months then it would be removed for good.
After 4 months i went to see my consultant, had the usual x-rays done and waited nervously for the results. My parents got called in to see him first without me. I started to panic that someone wasn't quite right...after about 20 mins the nurse took me into the room and i was asked how i was. My exacts words....i hate this blooming brace. My consultant laughed and said,,how would you like that blooming brace off of a night time for the next 2 months., then after that we can throw it away. I looked at my parents and they give me a little nod, so i turned back to my consultant and give him the thumbs up. What was 2 months after what i had been through over the past couple of years.
2 months later i was excited to go back to clinic because i knew what was going to happen. I couldn't get into the consultation room quick enough. This was the day that i could get rid of the brace for good.
My consultant joked that i could keep it on long if i wanted too,,,my reply..no blooming chance.
Finally he removed the brace for good. I was reminded that because i had metal rods and my spine fused from top to bottom my movements would be restricted for the rest of my life and the chances of growing any more was highly unlikely. Off i left his office in a very happy mood.
However.......
Just 2 years later my parents started to notice i wasn't walking properly and looked like i was in pain, in truth i was but never said anything. They decided to make an appointment at the hospital to see my consultant again. I thought nothing of it,, i can't grow the spine is fused there is nothing more can be done. I was sent for more x-rays. Whilst in the x-ray room waiting to see if they had all the images they wanted i could see the radiologist looking at my X-rays on the wall in full view of me.
Straight away i could see a curve in the spine...my heart sank. I could feel my eyes filling up, but kept telling myself, you can't cry here and now.
When i went back to outpatients my parents got called in first...i just knew something wasn't right. It was about 30 minutes later when i got called into the room with the nurse,,, i looked across to my parents and i had noticed my mum had been crying at some point.
Once again my consultant asked how i was... i looked at him and started to cry,,, i said,,, i know,,i know..i might be child but i seen the x-rays and there is a curve.
I had outgrown the rods by 3.6 inches. Then the crushing news, I had to go through all that surgery and having a brace all over again. The only difference this time was that i wouldn't have to wear the brace before surgery, he would operate within 6 weeks. I cried all the way home, i knew what to expect. The halo traction for 2 weeks then the main surgery.
3 weeks later i was back in hospital to go through it again. Finally 8 months later i had made a full recovery and the brace came off for good.
In 2003 i started to get a lot of lower back pain when walking,, which gradually got worse, and after complaining about it to my GP she referred me to be reviewed by a specialist spine surgeon.
This was the first time in over 15 years i had seen anyone about my scoliosis. Had the usual x-rays which showed no change from when i had surgery as a child which was reassuring. However to get a better idea of what might be happening the surgeon wanted to do and MRI scan. Now the only way that would be possible would be to have more surgery and remove the metal rods. Having thought about it at that time i refused, so it was suggested that i have injections in the nerves of the spine to try and block the nerve causing the pain when i walk.
I tried this option twice in 2 years without success and the only other chance of getting to the problem was having the MRI scan. As my walking was getting worse and i was now using a walking stick I asked if having the rods out would help my pain. The answer i got was it might, however it also might make the pain worse. I thought long and hard on this one, so i decided if there was a way forward it would be best to have the rods removed and have the MRI and hopefully they will find what is wrong and fix it.
This surgery was straight forward, opened up the top of the spine and the bottom of the spine unscrewed everything and pulled them out. My worry was that the spine would break after having all that support from the rods but i was reassured many times that could not happen.
It took about 4 months to fully recover and have the MRI.
A few weeks later i returned to clinic for the results. I was gutted there was nothing abnormal that could be causing this pain i was in. The spine is still twisted and he believes the pain was because of the major surgery i had been through as a child.
Basically he was telling me there was nothing more that could be done, and since having the rods removed the pain had become worse.
The only option he had was, he could do surgery to break my spine then rebuild it, but that came with to many risks and would let me go through such surgery.
So to this present day... my pain is still as bad as ever, I am on various pain medication via the pain management team, I can't walk without using my walking stick for short distances,, and for long distances I have to use my wheelchair.
Thankfully this hasn't stopped me from driving so i still have some independence.
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