Well, I found out I had Scoliosis from my class mates because they were calling me hunch back and other names, my Mum checked me over, took me to the Dr and they confirmed I had Idiopathic Adolescent Scoliosis (I was 11, this was in 1988).
We were living in Jersey at the time so we had to fly to Southampton General Hospital where I met Dr Jackson, he confirmed my curve around 60 degree and wanted me to come back and have the operation within 3 months. We saw him again beginning of 1989 and my curve was at 76 degrees. My operation was almost post poned because at 8am on the day of surgery I had a heart tremor, I was checked over and then the doctor gave the OK; I was tranquilised for my pre med instead of a needle.
I don’t remember much except being wheeled down to the operating theatre and being handed a teddy bear wearing sterlising clothing and then a gas mask to put me out for some time, I was brought out of surgery at 19.00, my Mum then decided to faint because she didn’t realise I was having a blood transfusion and was concerned about AIDS, but of course I was fine. I had 4 tubes and one of them was so they could avoid needles and my pain meds were fed through the tubes as to not stress me out even more, so because of this I stayed in post op for 4 days,
I had my surgery at the Lord Mayor Treloar Hospital in Alton Hampshire on March 1st 1989 and spent 4 weeks in hospital. I was fused from T5 to L1 (Harrington Rod) and T6 to T10 (compression rod), I don't remember much about this time I was now 12, I spent 2 weeks on the stryker frame that I hated! Being turned every 2 hours and squashed inside that awful bed, but the nurses were understanding, very gentle and caring. They also allowed pets in the ward, because there were patients in the same ward as me that had been there for 12 months due to a bone disease and had to have their bones replaced with animal bone, the pets made life in the ward more bearable!
After coming out of Hospital I was fitted with a plaster cast which I wore for 7 months (only because the surgeon had a holiday, should have been 6 months!), I went back to school wearing this damn thing and I do remember it was Summer, very hot, all my friends on the beach, me stuck at home wearing a cast, I couldn't even have a bath or shower. I used a shopping trolley with wheels to carry my books to school as I was told not to carry anything or exercise at all during this time. My Mum used to get me on the floor with the hair dryer on cool air up there and cold flannels, no knitting needles but I did have a scratch from time to time with one.
After the cast came off I lead a normal life, except PE and contact sports of any kind, life just went along with no pain and not really any thought to the instruments inside me, I went traveling round Europe and other places and I was fine. At the age of 19 I started getting awful lower back pain around the donor site, which rendered me unable to walk for long periods of time, my GP just gave me pills and told me to rest, telling me I was pulling a muscle just like any normal person does except mine will take longer to heal, YEAH RIGHT, what do GPs know anyway, he told me all my pain was in my mind because I have Harrington rods and just carry on life as normal, as he cannot see anything wrong!!!!!!!
Anyway, after my Father intercepted and said some rather rude words to my GP, he finally agreed to refer me to a specialist as my surgeon had retired. I got in contact with a Dr Harrison who agreed something was clearly not right, he said it was my sacro illiac joint that was causing the pain and I quote "Hyperaesthesia around region of left posterior iliac bone donor site, most certainly due to division or damage to the posterior branches of the L1, 2, 3 nerves that cross the pelvis at this point. Treatment plan: Injection of painful scare with anti inflammatory medication as a first line treatment, consideration of permanent numbing of the posterior nerve roots using radio-frequency coagulation.
I had an MRI scan which found nothing around the Sacro joint, I declined the numbing of the area, as I was not convinced that my Sacro joint had a problem, I found out a few years later I was to be right. I did however, have the injection, hated every minute of it and will never have that again, it gave me pain relief for a few months but when the pain came back it was fast and furious.
Well that was a quick over haul of the past few years so we now zoom to present day..................................
Since that small operation in 1998 I decided to spend some time in the sun and went to Costa del Sol Spain to stay with a friend for a week so I could evaluate where my life was going to take me, what I was going to do with my pain issues and what did I need from life to keep me happy?
I made the move to Spain in October of 1998 and have been here ever since, I to and fro between the UK and Spain so I can keep in touch with my Drs there and have my yearly check ups to make sure I am not falling apart altogether!
I have been bending forward and it takes a few seconds to straighten when I stand up from sitting on the floor, chair, sofa except laying in bed (I get up and stand straight). Pains in the lumbar region have got stronger, still having periods where I lay in bed for 6-8 weeks and was even in a wheelchair for 3 weeks in 2000. I did some research and found that I have flat back due to the Harrington rod, as this operation apparently causes flat back, have been for more x-rays and another MRI this week (2004), the x-ray shows that L4 has a part missing, but we do not think this is causing the pain, the MRI will show more detail. I think that my lumbar back pain is because I have 4 vertebrae that take all my shocks and jolts, where the average person has around 17 vertebrae and shock absorbers to help with daily jolts, mine are fused together with rods and bone that has grown around it over the last 15 yrs.
So, I believe that the problem now is due to the shocks these vertebrae and discs have been taking over the years, my Dr also thinks that I have exploded a disc, but again wait for the MRI. So possibility is surgery for L4 and L5 to the Sacrum, but I feel new problems may come with this, like bending forwards, hip and knee problems, however, I do not wish to take pills for the rest of my life as I don't like that either, because I feel for my Kidneys, I am currently wearing a brace and it helps, I cannot explain the pain as I find that difficult, pain must be one of the worst symptoms to explain to someone else, but I suppose I can try............................. Loss of lumbar lordosis and kyphosis, more comfortable in strange positions, like legs in the air bending forwards almost double, pain in lower back is there all day, sometimes it gets worse and can cause tears, lots of cracking noises, and feels like someone is stabbing me with a knife, gosh this is harder than I thought.
I find standing, sitting, walking painful when doing for too long, swimming is very good as I am weightless in the water and I don't have any pain, I use a stationery bike for exercise in the home and this helps, also take Voltarol twice daily and paracetamol. Lots to think about for pain relief really, as I am worried that a fusion in the lower back could bring more problems and I am used to the lowed back pain now (even thought I would prefer not to have it), so maybe it is better to leave this as it is, I will know more of where I stand in September when I go back to see Dr Andreen in Torremolinos (Spain).
At the moment I have reflexology every 2 weeks as I find that this does help with pain relief, I have my shoulders massaged also as I have lots of stress in that area and crunching sounds, I am sure this is because as I move daily my back cannot cope with it due to fusion so my shoulders and lumbar spine take the brunt of it, Reflexology was something I had post op for a year with a Dr in the Lord Mayor Treloar Hospital so I decided to carry this on.
I started seeing my surgeon in Torremolinos in August and he had a hunch that it was Facet Joints, well it turned out he was right, I had my latest MRI in August 2004, my Lumbar L4 and L5 are fine and the discs are still spongy, however he has noticed Degenerative Disc Disease in L2 and L3 and wants to do Facet Joint Denervation and Injections, I have yet to make a decision on injection therapy.
Dr Andreen and I have discussed replacement discs with Titanium but they have yet to be approved by the FDA and are currently under going clinical trials, there is one patient in Europe that has had these discs and has been sporting them for 14 years so far, but it is not known if she had a spinal surgery previously, the wait could be 2 years and hoping that Facet Joints will be available in Titanium as well.
I went to see another surgeon in the UK, Dr Andreen seems to have disappeared off the face of the planet and is not answering my emails or phone calls, this went on for far too long before I decided to not bother with him and move on! I was introduced to Dr Quaile in Hampshire and I made an appointment to go and see him, which I did. I had X-Rays (not sure why! as I have my own anyway) there and I also took the MRI scans I have at home and my medical history, he said my rods are very well fixed (already knew) and did not want to risk removing them (guess we are stuck for life), he also confirmed that my Facet Joints are the issue and injections could be a course of action. I have yet to go for these as I am scared shitless and the people I have spoken to confirmed it is not a nice experience to go through - I have decided to stick with the pain - yeah I know I am crazy!
In the meantime I run a Scoliosis support group for people all over the world so please do join us and have a chat - I look forward to hearing from Harrington rod patients and if they have similar problems.
Happy Days everyone, take care