Friday, 22 May 2015
Once again, no real changes, but life goes on. After several sessions of laser hair removal therapy over the last year, on Wednesday 20th May, Steven finally had his “plastic surgery” on his tracheotomy scar. The operation took just over two hours. The following day, the surgeon told us that the surgery was complex. Basically, he had to remove the scar skin from the trachea to which it had attached itself, then he had to make three separate folds of the skin to create strong skin, and then seal it with fine stitches, making a scar about two inches long which should join in naturally with the folds of Steven’s neck. No skin graft was required. The surgeon explained this as he removed the dressings, and the result is indeed remarkable. Steven looked in the mirror and was immediately overwhelmed. He had a totally flat throat for the first time since the accident over 4 years ago. The scar is being protected by a smaller version of the special dressings designed for breast implant surgery, to minimise permanent scarring. After two days in hospital he returned home, and immediately went to see friends, who all noticed the improvement in his manner, and his stance. He was no longer embarrassed for people to see him talking. Steven can talk normally and without interruption with swallowing. He can drink a full drink instead of sipping, and he can eat normally. The tracheotomy scar really did cause him some problems without us realising it. Steven has many issues remaining particularly with his general attitude and lack of body co-ordination, inability to feel the need to eat, body temperature control, and the continuing pain down his left side, but he continues to be positive, and is content with his injuries and the future.
Thursday, 8 January 2015
Not many changes over the last two months. We have all been on a cruise around the Mediterranean and to the Canary Islands, allowing Steven to “disappear” in an effort to cope by himself on the ship. He did this very well. Continuing the theme of giving him more independence, Steven has bought a motorised quad. With a disability label issued by the local Police, he is now able to get about locally and use disabled parking bays in town. This has boosted his confidence and well-being enormously. He can visit friends, and he can do minor shopping. He can make his own way to his gym and his massage therapy. The difference to his general demeanour has been amazing, and this can only go on to make him act and feel better. Steven has had a third session of laser treatment to remove hairs around his throat. He still hasn’t had any notification for his tracheotomy scar removal. Recently whilst walking, he tripped on a step, badly spraining his left ankle, had to be the left, that’s just what he needed to add to the pain!! But, as normal he repaired very quickly. Although initially angry, blaming his walking abilities, he has accepted that everyone has the occasional mishap, along with dropping things, or forgetting what he went into a room for!! There has been no change to his walking abilities, or the general lack of feeling on the left side of his body. Unable to fully control his body temperature, he is feeling the cold this winter. But he takes all this in his stride rather than sit about doing nothing. He even tried to live with growing a beard, but that faded after two weeks. He does everything he can to lead as normal life as possible, and we’re so pleased with his continued progress.
Friday, 31 October 2014
The results from the blood samples were all negative for toxins and infections. We await further instructions regarding further treatment. Steven has continued his exercise regime at the gym, reaping benefits that are obvious to his friends and family. He has had a second application of laser therapy around his tracheotomy scar to remove hairs, and he has to have a third very soon before the operation to disguise it. He is still in pain down his left side, but keeping himself occupied goes some way to alleviate this. He has visited a “foot doctor” who cleared up a few “ulcers” caused by his inability to move his toes in his shoes, and has had moulds made to wear to separate his left toes. (His toes have a habit of curling under each other making walking very difficult). He has been considering having the smallest toes removed due to pain and discomfort, but has been advised against this. Steven will try anything to return to as normal state as possible. To that end, he tried riding a friend’s pedal cycle. He found the experience refreshing, but difficult. Going downhill wasn’t a problem, but pedalling back up a hill created a problem of co-ordination between his right and left leg, basically, his left leg pushed out at an angle creating more pain, especially to his hip. But overall he enjoyed it. So, we purchased a dual pedal/electric cycle. Immediately he could see the benefits of fresh air, independence, and exercise. This gave him a boost of confidence and well being. For three days he did what he wanted, and went where he wanted, not without it’s difficulties, but he coped admirably. Remember this was a worrying time for us, because it was as though he was growing up again, and being sent out into the big wide world on his own. Then one day whilst stationary at a junction, he just lost balance, and fell to his left, his foot trapped in the special shoe on the left pedal. According to Steven it was a slow-motion movement, where he just fell to the floor, landing on his hip and elbow both locations of operations. Fortunately he was only grazed and bruised. People nearby who knew of him, ran to help him, for which he is grateful. Within minutes, a local ‘bus visited that location, the implications of that are obvious. Steven’s confidence was shattered, and he has given up the idea of riding a bicycle. But at least he tried. We look back now to 4 years ago today when we were told his recovery was bleak. Steven and his family and friends have worked incredibly hard to get to where he is today. Those who have followed this journey will understand that. People who saw him in those dark days will understand how proud we are of Steven. He has never once given up without a fight, and I suspect he’ll continue. The biggest problem we have as a family is that sometimes we seem to forget about other people. We don’t do this on purpose, we have so much to think about. Now and again it’s good to be reminded that there are many people far worse off than Steven. There are many families out there who have to cope with similar situations to ours. Those families have their own stories to tell. I just hope that people newly affected will see that there is light at the end of the tunnel in many cases. It takes a lot of dedication and perseverance, and we have been privileged and grateful to come this far.
Thursday, 11 September 2014
Steven continues his long journey to recovery. He knows he will never be the same as before the accident, but that doesn't stop him or us from doing the best we can to get him close to his previous life. To that end, Steven has started and continued a fitness regime at a local gym which specializes in the treatment of similarly handicapped people. This has resulted in him developing his muscles, and he does eat more. He is beginning to "bulk up" and looks well. A recent visit to the UK for his cousin's wedding resulted in many people commenting on his overall improvement. On a separate visit to UK, we attended the Queen's Medical Centre at Nottingham University Hospital, for an evaluation by pelvis and hip experts. We went expecting them to say that Steven needed another operation to correct his walking action, and help remove the intense pain he suffers at all times. Having looked at Steven's scans and x-rays, the Doctors stated that the hip replacement operation, in their opinion, was first class, and should not be causing the problems that Steven is experiencing, so a new operation was unnecessary. Due to Steven's ungainly gait, and the poor control over his left leg and left foot, they likened it to a baby learning to walk. They firmly believe that Steven's problems including the pain, are caused by severe damage to the sciatic nerve, and that this may take a long time to repair itself. They came to this conclusion because Steven does actually have some control over his leg and foot, if he had no control at all, the nerve would probably be irrepairable. They are confident that, in time, he will regain more and better use of his leg and foot. We left the meeting in a good frame of mind, and were grateful for the input and advice. In the meantime blood samples have been taken to discount any infection or any absorbed metal from the new joint. We will know the result in a few days. The Doctors may recommend pain management, but we have gone down this route before without success, unless there are new ways of pain management other than acupuncture, hypnosis, and botox. Steven will continue with his gym work and exercises at home, encouraging muscle growth, strength, and fitness.
Sunday, 6 July 2014
Another small update in Steven’s recovery. After yet another visit to hospital to see another doctor regarding the recurring pain in his left elbow, he and we received yet another opinion about the reason for the problem, and for once, this opinion seems to be correct. He was advised that, after seeing scans, there were small pieces of calicification “floating” around the elbow. The recommendation was no an operation, but was to work the elbow through the pain, to remove the calcification. Steven informed his trainer at his gym, and they came up with an exercise programme. As a result of this, and despite initial intense pain, Steven is beginning to straighten his elbow, the feeling in his fingers is returning, and the pain is subsiding. The result of this is that with one less pain to worry about, his general health is improving, to the point that he is actually putting on a small amount of weight, and there is a definite improvement in muscle definition. Whilst at the hospital, Steven also saw a “plastic surgeon” with a view to repairing or improving the look of his tracheotomy scar. From there we visited another surgeon who gave him two options for the repair. One was to remove muscle from his chest and place this into his throat, the other was to extract fat from his body to put into the area of the scar, and then hide it with a skin graft. Steven decided on the second option since he didn’t want any more scars. However, he was told, that during the operation, if that didn’t work, they would have to go for the first option whilst on the operating table. In the meantime Steven has made another visit to the hospital for a session of laser hair removal around the throat area, which was far more painful than he expected. He has to go for another session of hair removal in about 3 weeks, and then a decision will be made about the date of his throat surgery.
Saturday, 7 June 2014
It’s been quite a while since my last update of Steven’s progress. The reasons for this are many, concerning us, his family, as well as Steven. Steven has made a remarkable recovery over the 3½ years, but he has reached a “plateau”. We and he still haven’t stopped fighting for his recovery and justice, but at the moment there has been very little change in the last few months. He continues to be mobile, he continues his treatments of massage and exercise, but he still suffers from all manner of pains to his left side, particularly his elbow, hip and pelvis. His stress or patience levels are improving, his emotional outbursts are diminishing. Steven has stopped going to Elche hospital for physiotherapy because the regime was becoming repetitive, and having learnt so much there, he can do the same exercises at home. He has continued his massage, heat therapy, and acupuncture. He has recently started at a local gym specialising in recuperative therapy following accident or illness. This is already showing slight improvement in muscle tone and general fitness. After a long delay in getting appointments, he again saw a Doctor about his elbow. After x-rays and consultation, it was decided that an operation was not necessary. According to the Doctor, Steven has to endure more pain by vigorously exercising the elbow to remove “floating” calcification. In time this should relieve his elbow pain, and restore feeling to the fingers of his left hand. Regarding his hip and pelvis, we have decided to obtain advice and help from England. We were able to send excellent scans of his pelvis and hip to an English hospital, where experts agree that the pelvis is now fully healed, but in the wrong manner. These Doctors are also loathe to re-break the pelvis to restore it to its original state. The Doctors believe that Steven is not getting pain from the actual pelvis, but from the muscles surrounding the hip and pelvis. But these Doctors also discovered that when Steven had a hip replacement, it seems that the hip joint was replaced without taking into consideration the displaced pelvis. Their opinion is to re-do the hip replacement, and twist his leg into the correct position with the damaged pelvis. This will then hopefully put all the bones and muscles into alignment. We visit England in September for personal consultation rather than the up to now informative e-mail exchanges. As well as Steven’s health and his constant visits for treatments, we have had a large number of other problems, none of which help our own stress levels. After much deliberation between our solicitor and the taxi insurance, we have reluctantly accepted an offer of compensation. However this compensation falls short of what we feel is fair. The compensation was ordered by the local Court according to Spanish Law. The alternative would have meant paying a solicitor about €15,000 up front, and a potential delay of up to 15years to get any further compensation, and even then, there was the possibility of still receiving the Court’s amount, from which we would then have to pay the insurance companies costs. This is David versus Goliath, and was an incredibly difficult decision to make, and one we didn’t reach lightly. Then there was a battle with the Spanish Social Security. After a vast number of Medical examinations, and reports from all sorts of Doctors, Steven was awarded a Spanish disability pension. Despite all the Doctors stating that Steven would never have the capacity to learn, and would never work again, the Social Security gave Steven a disability rating of 52% Total and Permanent Disability. Ten months before Steven’s accident, he was in full time contracted work, which meant he was able to legally obtain a Social Security pension. He bought his own house with our help. As normal when buying a house with a mortgage, he and we took out the usual mortgage protection insurance. So, armed with the Social Security report, we approached the Bank’s insurance company, with a view to claiming on the insurance for the mortgage to be paid. After several weeks the decision was given that Steven did not qualify for this payment, because it was only payable on Absolute and Permanent Disability. We returned to the Social Security to appeal their rating, and after yet more examinations they increased Steven’s rating to 55% Total and Permanent Disability, but would not give Absolute and Permanent Disability. We appealed to the mortgage insurance, but they were adamant that the rules said Absolute and Permanent Disability. This basically means that Steven would have to be virtually fully paralysed and totally helpless before any payment was made. To us, the insurance was worthless. Steven cannot work, that’s agreed by everyone, but he still has to pay his mortgage. Further, the insurance papers actually give the insurance company the right to come to their own decision despite any Doctors or Social Security reports. When the house was purchased, as is normal in Spain we paid all relevant taxes. However, whilst Steven was in hospital we received notification that we had underpaid €6000 in taxes, and they wanted their money, as if we hadn’t got enough problems. We went to our solicitor as soon as we were able, and appealed the alleged unpaid tax. In the meantime the tax authorities fined us €400 for not paying the disputed amount on time, something they shouldn’t have done whilst an appeal was in process. Unbelievably they then embargoed our bank accounts and removed the €6000, again in contravention of the appeal papers produced at Court. After another year, we won our appeal, successfully proving all taxes had been paid, and that the embargoed monies to be returned. Despite numerous letters and telephone calls this took a further 18months before our monies were finally returned. All the above battles with officialdom required many travels to offices, telephone calls, e-mails, letters, and all were and still are very debilitating. All these problems had to be dealt with at the same time as maintaining 2 houses, including normal life’s duties from shopping to cleaning. Steven is spending more time in his own house, but still needs help around his house from cleaning to making his bed. So, as you can see, we have been extremely busy in all manner of things, causing a lot of depression and anger, at a time when all we wanted was for Steven to get fitter and better.
Wednesday, 5 February 2014
It’s been a while since an update, but the changes have been minimal. Over the last few months Steven has gained a little more stability in his walking. This was achieved by staff at his clinic making him walk, blindfolded, and carrying his walking stick in both hands out in front of him. The staff would then “knock” the walking stick, similar to being nudged in a crowded street. Steven has then had to regain his balance, not knowing where or when the next “knock” would come. This was frightening to begin with, but helpful. Steven has also been made to hold onto a bar with both hands and then jump with both feet. This was extremely difficult due to co-ordination of both legs, lack of control over his left foot on landing, and the pain, but he did jump about two inches. Though small, this is regarded as a small victory. This and other exercises learned at the physiotherapy clinic are replicated regularly at home. He has had another medicine change in the hope that it will minimise the pain, and he also has pain patches on his left leg and left foot, for about 12hrs overnight. This is helping, but the pain returns gradually over the next 12hrs. Steven’s general attitude is changing in that he now knows when he is stressed and angry, and takes steps to minimise this, or at least immediately apologize when he does/says things wrong. He is beginning to accept that anyone can make mistakes, and it’s not always caused by his brain damage. He does feel that he is returning slowly but surely to “normal”. He has continued with regular massage in the hope of returning muscle fibre to where it should be, and to compensate for the lack of general exercise. On the bureaucratic front, after many examinations by several doctors, including re-examinations by the same doctors, Steven has been given disability status by the Spanish Social Security, and is now in receipt of a small pension. We started this process in January 2011 at the suggestion of Social Security representative at Steven’s hospital, due to Steven’s poor prognosis. We are grateful for this, but cannot understand how and why this has taken so long to achieve, and cannot understand why the claim hasn’t been back-dated up to 3yrs. Every doctor’s report, and there have been many by different experts, shows that Steven will never be able to learn any trade due to the brain damage, and will never be able to work again due to mobility and pain issues. We understand the need for validation, but when it’s done by the same doctors checking their own findings, we find this most strange. Steven has had another brain scan which confirmed that the damage was still there. He has had one of his scan pictures printed and is now on display at home in a frame!! There have been many visits to the local Court in an attempt to gain compensation for his life change, and there will no doubt be many more. The scans, the x-rays, the doctor’s reports are all there to be seen by the taxi insurance company, it is now up to them to make an offer to Steven, although no amount will be sufficient, but we understand the realities of the financial world. As we have proved by badgering the Social Security, we will continue to fight for what we believe is right for Steven. We will not be brow-beaten, we have to ensure Steven’s future. Best regards Terry