The Tragedy
Introduction
I saw an article in The Bangladesh Times titled "The Secret Behind Cure of Spine Defects". In this article I found that an English doctor named Mr Gardner had developed a new technique to correct spinal defects. I got much interested after reading the article and at once decided to write him a detailed letter. I never expected a reply from him because in that article there was not enough information about the hospital i.e. Basildon Hospital, where Mr. Gardner used to work.
On 9 of June 1979, I received a beautiful response from Mr. Gardner. I got very excited as well as surprised after reading the letter especially after seeing the full address of Basildon Hospital. In it, he mentioned his new method of correcting the curvature of the spine and the operation involved. I read the letter several times and passed it to my parents to read also. After reading the letter my father decided at once to send me to England for my medical treatment. I came to England on 7 July 1979.
After a few days my brother rang Mr Gardner to let him know that I had arrived in the UK. On 21 of July I received a letter of appointment from Mr Gardner to see him in his private clinic on 6 September 1979. In the mean time I enrolled myself in Fielden Park College to do a Business Studies Course. I started eagerly counting for the BIG DAY - 6 September, to meet "My Dream Doctor!", whom I believed would one day cure my spinal defects. The picture above was taken at Fielden Park College in Manchester.
The First Appointment
It was a fine sunny morning on 6 September 1979, my brother and I left our uncle’s place in London. We had to travel by underground, train and taxi to reach at Essex Nuffield Hospital. We went to the reception desk and reported our arrival. We were told to take a seat in the waiting room.
At 12.15 p.m., my brother and I went into Mr Gardner’s room. He examined me thoroughly and from head to toe and took about 7 x-rays of my back from different angles. We were shown the x-ray reports, explained the cause of why I was getting back pain and the risks involved if I didn’t do the operations. Mr Gardner then told me that to correct these problems I would have to undergo a three stage spinal operation and that I would have to stay in the hospital for three months. The benefits of these operations were as follows:
a) The curvature would be straightened up to 75%
b) There would be no pain or problems in the future
c) I would gain about 4-5 inches in height
d) The success rate for this type of operation was 95%
e) Finally, there was only a 5% risk of me getting paralysed if something
went wrong
Mr Gardner asked me whether I would like to do the operation or not. I asked him what would be his suggestion or advise? He replied "If you were my relative I would definitely advise you for this operation". Mr Gardner than told me that I would have to do this operation privately which will incur a huge sum of about £6,000 including hospital stay. Since I was not a resident of this country at that time, I would not be eligible to get NHS facilities, but he advised me that if I could register myself as an NHS patient, I should get free NHS treatment. He assured me that if he got any funding or grant from sources he would treat me as a research patient. Ironically, he asked me if I belonged to an Aga Khani sect to identify if I was a rich person. I told him that we were just Muslims and that we didn’t come from a rich family. Finally, he reminded me that I have to do these operations within two years, otherwise suddenly I might get paralysed. He prescribed some painkillers to take if I suffer from terrible backache. I was very happy and pleased because there were several benefits from these operations and in particular gaining a 4-5 inch in height was the best among all.
The Second Appointment
On 8 December 1980 I received the 2nd letter of appointment to see Mr Gardner at Basildon Hospital on 12 February as an NHS patient. So on 12 February, my brother and I started our journey from Manchester. We arrived at Basildon at 1.00 p.m. We went straight and reported to the reception desk. We were told to go to straight to the x-ray department and photography department. Here they took a further 5 x-rays and 4 photos of my back. They also measured my height. Seeing all these activities I thought to myself for a minute, are they are going to admit me into hospital?
At 2.30 p.m. we met Mr. Gardner in his clinic. He examined me once again and explained about the operation procedure. This time he asked me about neorofrybroma and I told him all about it. He reminded me once again of the urgency for these operations before it got worse. Mr Gardner than gave me the bad news which was that since I was not a UK resident, I would not be eligible for such a major surgery even though I had NHS registration. I felt really upset at this but he gave us some slim hope. We returned to Manchester with mixed feelings.
The Waiting Game
I have enrolled in Fielden Park College of Further Education doing a full-time course in Business Studies. In Manchester my brother and I discussed my case with some of the Bangladeshi doctors working in Manchester. My mother was very anxious after hearing the outcome of my second appointment and she wrote a letter to Mr Gardner without my knowledge, requesting him to take my case seriously and making the point to him of whether he would or could could remain silent if I was his relative. My brother also felt that somehow, he could arrange up to £1,000 taking loans from various sources for my medical treatment. So on 8 Apri1 1980, my brother called Mr Gardner regarding my operation and explained our financial situation and that we could only arrange up to £1,000. Mr Gardner told him that he was going to have a board meeting with the Hospital Administrator regarding my urgent operation and would come back to us soon.
On 10 April 1980, Mr Gardner telephoned us and incidentally, it was me who answered the phone. He then gave me the great news about the agreement by the board of the Hospital Administrators regarding my back operation. He also informed me that I would have to come to Basildon Hospital on 21 July 1980 and my 1st operation would be carried out on 28 July 1980. I was so happy that at once I booked a telephone call in Chittagong to inform my parents in Bangladesh.
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The picture on the right was taken at Fielden Park College in Manchester
The picture on the right was taken at Trafalgar Square in
London just 2 days before I went to Basildon Hospital.
The Admission
Finally the BIG day had arrived - 21 July 1980. My brother and I left by train for Basildon Hospital from our Uncle's place in London. After arriving in Basildon Hospital we reported at reception desk. I was told to go to the Pathology Department at first and here they took some blood from my right arm. Then we went to the Admission Office and completed the registration and other formalities. After finishing all the paperwork in the Admission Office we headed to ward 6. It was 1.00 p.m. and the ward sister showed me my bed. She asked me if I had eaten any lunch and I said no and she ordered luncheon for me - toast and egg. My brother left at 3.00 p.m. and I was feeling very lonely. I spend the day roaming here and there.
Investigation & Ward No 6
I was admitted at Ward No. 6 in Basildon Hospital. After coming here in Basildon Hospital they started carrying out further investigation upon me. In the evening Dr Scarof, a registrar, of Mr Gardner came and checked me thoroughly, asking several questions and enquiries. He informed me that Mr Gardner would come and see me tomorrow. Next morning, Tuesday 22 July, Mr Gardner and five other specialists came and re-examined my back thoroughly. They checked and discussed several issues amongst themselves.
He once again explained to me the benefits and the little risks attached to this operation. At 12.30 p.m. a lady came to measure my breathing strength, etc. using the vitolograph. At 3 p.m. they took 9 different x-rays. They also took blood for further examinations. The next two days I walked here and there. Ali, the physiotherapist came and showed me various exercises to do, because after my operation my muscles would weaken everyday from bed rest, and to avoid chest infection I would have to do these exercises regularly. The exercises I used to do were breathing, coughing, cycling, bird, etc.
On 25 July Mr Gardner came to see me and advised his juniors to perform mylogramme x-rays on that day. Accordingly, I was taken to the treatment room for injecting mylogramme where they were going to inject dye in my spine that would allow them to investigate my spinal cord further. Dr Hassan came inside with the mylogramme injection. He injected 5-6 times inside my spine cord but he couldn't perform the mylogramme injection properly. I cried and shouted a lot because of the terrible pain. When they failed the process they took me to the theatre and performed the mylogramme.
On 27 July my brother came from Manchester and the ward sister explained to us both about my operation. She showed us a couple of slides regarding hay-lo traction which was the first stage of the operation. Seeing this I felt scared at first, but I left everything upon Almighty Allah. In the evening a staff nurse came and shaved and washed my back.
The Operations
On Monday 28 July 1980 they performed my first stage operation. In the morning I took a shower and put on the theatre robe. Two staff nurses came and gave a pre medication injection to make me sleepy. At 9 a.m. I was wheeled down to the operation theatre. I was scared all the time and was reciting the Surahs from the Holy Qur’an. In the theatre they washed my back and gave another injection in my wrist and gradually I lost my consciousness and knew nothing afterwards. It was 3 or 4 in the afternoon when I regained consciousness. In this operation they fixed a halo, a steel ring around my head with screws and nuts. They tied about 20 lbs of weight as a traction to pull and stretch my head, neck, spine upwards. At first I used to get pain but later the pain eased. I used to have this traction for nearly 23 hours a day. They used to take off 10 lbs at night so that I could sleep properly. When I wanted to go to the toilet the nurses would take off the weight and I myself walked down to the toilet.
After two weeks, on 11 August 1980, I went to the operation theatre for my second stage operation. It was Eid-ul-Fitr day. I went to the operation theatre at 9 a.m. Earlier in the morning I took a nice shower. It was 6 or 7 in the evening when I regained slight sense. I was in real pain and was feeling drowsy and sleepy. Both my arms were bandaged because of morphine and saline dip. Suddenly in the evening I realised that my legs were not moving and felt very heavy. I felt very scared but I didn’t realise at the time that there was something wrong. I asked one of the nurses who was sitting next to me constantly, "why can’t I move my legs?" I still remember her reply, "There are lot of pillows to support your leg and back", and I believed her.
At night, Dr Karl came and asked me to wiggle my toes which I couldn’t. I asked him "Why can’t I wiggle my toes" and I asked him if there was any risk or danger if I could not move my legs. His replied "Yes". Realising what had happened to me I lost control of my emotions and started screaming loudly, reciting the Holy Qur’an and praying to The Almighty. I was screaming so loudly that the nurses thought I was in pain and I was not answering any of their questions. I had a feeling that the worst thing had happened to me. There were several nurses and ward sisters around my bed and they all failed to get any response. The ward sister was petting my forehead and said "sweet heart are you in pain" and I couldn’t talk and I was crying and crying and moving my head to indicate "no". The ward sister got worried seeing my emotions and called my brother in Manchester and told him about my crying. She came to me and said "your brother from Manchester is on the telephone". I took the receiver and started screaming and told my brother everything "Oh Bhaia, I can’t move my legs, etc. etc. etc.". My brother reminded me about Allah, to recite Surahs and to keep faith in Allah.
Next day on 12 August, Mr Gardner and his team came and saw me. He got reports from the ward sister about my screaming. He told me this was a major operation and told me all about my operation, 40% corrected. I asked about the movement and his reply was that the movement would come back but it would take some time. He said, "The operation was a major one and the nerves were disturbed, The leg movement will come back". I couldn't pass water so they would have to fix catheters, which I had for three weeks.
On 1 September after three weeks, the last and the 3rd operation was completed. In the morning the nurses gave a bed bath and cleaned and sponged my back. I was wheeled down to the operation theatre at 9 in the morning. In the theatre some doctors were doing their routine check-up upon me. After sometimes Mr Gardner wearing his beautiful green operational robe came in and asked how I was. In fact, this was the first time I saw him with the green operational gown on. They injected in my wrist and later I knew nothing.
In the evening, I regained my sense with much pain. I asked a nurse to give a glass of water but she declined to give one because that would make me sick. My brother came from Manchester and showed my B.E.C result. I was feeling very sleepy with morphine and saline on both arms. Next day, Mr Gardner came and told me all about the third operation. This time they fixed two rods called ‘Harrington Rods’ inside to stable my spine. I was getting terrible pains in every breathing and I still remember those pains especially when the nurses used to lift me up to transfer me from one side to other.
On 9 September Mr Gardner told me about the plaster jacket so that I could sit. After two days they took the stitches off. On 12 September they plastered my body like a waist coat. It was the first day I was sitting on a chair after my operation. I was brought to the general ward and was feeling much better. The movement of my legs and toes started returning but very slowly. They also measured my height and found that I gained four inches in height.
Feelings and Events
When I came to Basildon Hospital at first I felt very lonely. But after a few days I made lots of friends. Before my operation I used to play cards, chess etc. I used to do lots of exercises which Ali showed me to do. On 27 July the ward sister brought pillows in my side room. I asked the sister why I had got so many pillows and she told me they would use those pillows after my operation. I was really surprised at this. After my operation I used to lie on top of those pillows as 2-3-3-3 and 1 in between my legs. As I had a traction on my head I used to get headaches. 4 to 5 nurses used to lift me up to turn me from one side to another. I used to get an incredible pain when the nurses lifted me up. I used to do bird exercises to avoid any kind of chest infections. I had a very nice time after my first operation, but sorrow and sadness came upon me after the 2nd and 3rd operations. Because after these operations my legs and bottom part became very funny and abnormal.
Everyday the nurses used to ask me question about my legs and arms. Ali, the physiotherapist used to come everyday to do passive movement for my weak legs. During the exercises I used to get a lot of pain but Ali used to say "Look Tarek, I know you are getting pain but if I stop, you will not be able to walk again". So I had to tolerate this pain. Mr Gardner and his team used to come every Tuesday and Friday. After my 2nd operation my bowel movement was affected. I couldn't open my bowels by normal means. So they had to insert enema from time to time. At first this enema failed to open my bowel so they had to do it manually. I still remember when one day I couldn't go to toilet for more than 12 days and was terribly uncomfortable. They took me to the treatment room to open my bowels manually. One of the nurses joked and asked me, "Do you want a boy or girl ?" and I answered I want both so that everything comes out. I felt much relieved after the manual treatment.
Sometimes I used to cry if the nurses didn't listen to my plea. For example if I sat for too long I used to get pain and when I asked the nurses to put me to bed, they used to say hang on, in a minute, not now, later etc. Ali used to help me walking me down everyday with the support of a pulpit frame. A pulpit frame has four legs with wheels on the front two. At first I could manage only a few steps, but it was improving gradually but very slowly. I met several patients with back problems. Among them were Steven, Berry , Simon, Graham, Kelvin, Tony, Peter, John and many female patients as well.
I used to go to occupational therapy every Monday, Wednesday, and Friday. There I used to do lots of handwork, like making macrame, lampshades, printing, woodwork and bike exercises which was the most important among all. On 21 November I first started doing bike exercises. At first I could only manage 30-40 rotations but gradually I was doing more, well over 600 rotations at a time. The OT ladies were very nice to me. Rex, the porter, used to wheel me down to the OT department every other day.
Making macrame pot holder which the OT used to sale for £5 each
During the Christmas time we had much fun and enjoyment in the ward. I received several gifts from the nurses. Most of the nurses were very nice and very loving, caring and affectionate. They decorated my haylo with silver and golden strings during the Christmas. Everyday I used to walk to the day room for meals. On 12 January 1981, they decided to take off the haylo. On that day Mr Gardner himself just unscrewed it with a normal screw driver. I was really scared at first because of the pain that I might get, but I didn't get any of the pain I had anticipated. From the first week of February I started walking with a zimba frame. I was much scared at first with the zimba frame but later I got quite confident. I also used to do spring exercises for my arms. On 27 February Mr Gardner and his team came and checked me.
He also told me that I could go home but I would have to come back after six weeks to have a plastic jacket. Mr Gardner left for Malaysia and Singapore and he shook my hand. The ward sister felt otherwise because she felt it would be too early for me and that I might not be able to manage on my own. On 17 March 1981, two more x-rays were taken which showed my spine was strong enough so they decided that I could have the plastic jacket. On that day I had my first bath after well over 200 days. The whole bath was full of dead skin and darts. Next day, 18 March, they took me to the workshop to make the plastic jacket which took over four hours to make.
On that same day Ali took me to the swimming pool to do hydratherapy. I was very shocked and upset when I noticed that had I lost some of the height that I had gained initially. I was getting severe pain since I had plastic jacket on. On 24 March two more x-rays were taken which showed everything was all right. I was discharged on 26 March 1981. In the morning the ward sister brought some luncheon packets for me. At 9.30 a.m. the ambulance came to take me to Euston station. I was escorted by a hospital friend from Euston. The train left Euston at 11.55 a.m. and arrived at Manchester Piccadilly at 2.30 p.m. My brother was at the station and from there I came home by another ambulance which was waiting for me. In this way I spent exactly 248 days in Basildon Hospital.
Manchester 16 March - 6 July
On 26 March 1981 I was discharged from Basildon Hospital. After coming here in Manchester I felt much better and homely. I used to walk all around with the help of the zimba frame. I was about 85% self independent in washing, cleaning, manoeuvring, etc. I was much happier because of the family environment and eating curries after a long period. On the 27 March a Social Worker from Manchester came to assess what sort of aids I required. I gave her a list of items, which they provided me gradually. All my relatives and friends started visiting me and we had a couple of nice parties at home.
I used to do the same exercises which Ali showed me earlier when I was in Basildon Hospital. I was told from Basildon before my discharge, that I would get an intensive physiotherapy in Manchester within 3-4 weeks of my arrival in Manchester. I waited and waited but still didn't hear any news from Manchester. I observed that my legs were getting weaker and weaker everyday. Due to lack of proper physiotherapy, for example bike exercises, my legs started getting weaker and weaker and I used to get tired after only a few steps. I still remember that I used to do even stairs at first by holding the rails on both sides and later on this too became impossible for me. I became really surprised at this sudden deterioration which was obviously due to not getting prompt physiotherapy. Sometimes my knees just gave up while walking and in fact, I fell down on the floor on 3 occasions. My brother or my sister-in-law helped me to stand up when these occured.
My brother rang Manchester Health Authority where he was told that they didn't hear any thing from Basildon Hospital whilst Basildon said they had written 2-3 letters to Manchester regarding my intensive physiotherapy. On 28 May, 8 weeks after my discharge from Basildon, I went there for my routine check up. I mentioned Mr Gardner about not getting any physiotherapy since my return to Manchester and the weakness I felt whilst walking. He then told me that he is going to call Manchester again to expedite the process and if nothing happened in the next two weeks I should contact them in Basildon. But after 2 weeks, I still didn't hear any new development. I really got mad and started ringing both in Manchester and Basildon. The weakness also resulted me losing control of my bladder and sometimes I used to wet myself.
This picture was taken when I could walk using this zimma frame
After waiting for well over 12 weeks, I finally received an appointment letter from Salford Hope Hospital to meet Professor Galasco in June as an out patient. But instead of him one of his registrars saw me and couldn't say anything about why I was having these problems. Anyway, I was admitted to Salford Hope Hospital a few days later. Here they took several x-rays and carried a bone scan.
I was very unhappy here because I was not getting proper physiotherapy. Every day the physio lady used to come and did exercises with my arms and not legs. I told her, the type of exercises I did at Basildon i.e. pool and bike etc. She informed me that they did not have a pool or bike here in Manchester. I was really annoyed and unhappy with the physio treatment. After 3 weeks, Professor Galasco came to see me and I told him all my problems. According to their x-ray and bone scan reports they found that my bone grafting was not strong enough and was getting weaker and this was the reason why I was getting weakness in my legs. Professor Galasco decided to send me back to Basildon, since Basildon knew my ins and outs. So on the 6 July 1981, I returned to Basildon Hospital by ambulance. I stayed at Salford Hope Hospital for nearly 5 weeks.
The Second Stage at Basildon Hospital
I arrived at Basildon Hospital after a long 6 hours journey by an ambulance from Manchester on 6 July 1981. Next day, Mr Gardner and his team came and saw me and examined all my medical reports sent from Salford. He then told me that I need another operation including haylo traction. He also told me that there was some risk involved but it was more worth doing than not. So I decided to go for the operation expecting that it would make my weak legs better. They also decided to perform the haylo operation on the very same day. So in the afternoon Mr Gardner himself fixed the haylo ring under local anaesthetic.
As this operation was performed under local anaesthetic I had the opportunity to see the whole process. At first he injected on four sides of my head to make the area numb and then fixed the haylo with screws and nuts. It was a painful experience because I was awake the whole time whilst he was fixing the haylo ring. This time they used to have 12 lbs of weight as a traction which they used to increase to 22 lbs whilst in sitting positions. I had haylo traction for 5 weeks.
During this time they took lots of x-rays and mylogramme and tynogrammme which they did in the operation theatre. After examining this report they found that some of my nerves got twisted but the bone grafting was strong enough. Mr Gardner decided to correct the twisted nerves and also to take off the rod that they inserted during my operation a year ago.
On Monday, 17 August 1981, once again I went to the theatre for a major operation. The operation was completed accordingly. In the evening I regained my sense. I had morphine and saline on both arms. My mother who came earlier from Bangladesh was by my bed. I made an arrangement for my mother to stay in the nursing home. After this operation my leg movement totally stopped, worse than before. I was much shocked at the outcome. Mr Gardner told me not to worry and that the feelings would come back gradually, have patience etc. I also couldn't control my bladder and so they had to fix a catheter which I had for 3 weeks. After two days they took off the haylo traction.
Mr Gardner went on holiday and after his return he examined my back and legs. He was very worried after seeing the slow progress and told me "If you can walk you will be very lucky, if you can't I won't be surprised". I felt very sad at first but I thought to myself, everything depends on the Will of Allah. He also told me that my blood circulation was very poor. After a few weeks my toes were moving a little bit. Seeing this progress Mr Gardner gave some hope. I started doing plenty of exercises for both my arms and legs. Because of my muscle spasm they changed my tablet from Baclofen to Dantrium and also increased the dosage.
24 September was my birthday. On that day the nurses ordered a nice cake for me and we had a nice party in the ward. I started sitting on a wheelchair for the first time from that day and they ordered a new wheelchair for me. Sarah and Colin, the two physiotherapists used to come every morning and did passive exercise on my legs. Sometimes my mother used to do the passive movement. Mr Gardner advised to make splints for my legs so that I could do some standing exercises. By the first week of October the splints were ready and I started doing standing exercises with the help of a parallel bar. It was a really painful job and I had to struggle against my tummy spasms.
Mr Gardner saw my slow progress on the 13 October and was happy. He said to me "Keep on fighting, it's a slow and hard job". I used to do standing exercises almost every day. Mr Gardner saw my standing and was much impressed. He then told me that they will arrange to transfer me to a rehabilitation centre where I should get intensive physiotherapy.
I used to go to the occupational therapy department every day to do handwork. Sometimes I felt depressed and fed up there because I used to think why are they making my arms work and why not my legs. On 5 December I was told by a nurse that I would be transferred to Guston Manor, a rehabilitation centre, on 4 January. I was quite happy but also felt worried because of the bowel problems which still existed since the operations i.e. I could not open in a normal way and needed manual treatment from time to time.
One day I noticed a soreness in the side of my ankle which happened from the splint that was digging my ankle but I couldn't feel at all. This soreness stopped me doing standing exercise for the next few days. One night on the 11 December, while the nurses were changing my bed they noticed a big sore developed on the right side of my buttock. Since I had no sensation I could not feel the soreness. They felt this pressure sore may have occur from sitting too long in the wheelchair. They started putting dressing and Ops side but it was not doing any good. Mr Gardner advised for a complete bed rest and I had several types of dressing treatment.
On 22 December Mr Gardner saw my soreness that became very murky. He decided to clean this murkiness in the theatre. So once again on the 23 December I went to the operation theatre for a minor surgery. I had 8 stitches and they cleaned all the murky area. But now as I had to lie on the other side all the time and a new sore was sighted. It wasn't as serious as the first one. They had to postpone my transferring to Guston Manor.
On Christmas day we had a nice party in our ward and the Santa Claus came and gave me an after-shave and a pair of socks. I also received plenty of cards from the nurses and other patients. They were serving drinks from time to time and since as a Muslim I don't drink alcohol they had to bring soft drinks. They also decorated my wheel chair and bed.
On 1 January 1982, I had a big accident - all my stitches burst and opened. On that day whilst sitting on a commode chair I had the nuisance spasms which opened up my stitches and started bleeding. In the afternoon Dr Lenahan came and saw my condition and said it was not very serious and they continued dressing in a normal way. They were using Feradize packing and later on changed to Silosticfoam. I was transferred to an Electric Standing bed to allow me to do standing exercises. I used to do this exercise using a getta frame. It found that the soreness sometimes got better and sometimes got worse. They tried different types of dressing including Feradize, Ops side, Debrasine, Silosticfoam and finally U sel etc. They also tried salt bath treatment.
On 26 January 1982, Mr Gardner saw my walking with getta frame and observed the difficulty I had whilst stepping i.e. my legs got crossed when I tried to step forward. They decided to do an another operation to stop the scissoring spasms. He told me that the operation would help me a great deal in walking. They also decided to send me to Stock Mandeville Hospital after my full recovery. On 8 February, I once again went to the theatre for the ninth time. In this operation they cut a small nerve on both legs near the thigh to release the muscle tension. On 11 February I started walking for the first time after this operation. I myself noticed my walking became significantly better and the legs didn't get crossed. On 23rd of February Mr Gardner saw me walking with splints on and he was very impressed. He ordered metallic callipers for my legs. Mr Gardner told me that in Stoke Mandeville hospital they would train me so that I would be able to cope with various problems such as bladder, bowel etc. Mr Gardener asked me about my further education and told me they would help me to continue my studies.
From 1 March, they made a routine programme for my physiotherapy and other treatment. They transferred me to a normal bed so that I could do the routine programme. Sometimes I used to get pain on the right side of my ribs whilst walking with the getta frame. On l0 March they brought a special kind of seat for my wheelchair which worked with a battery . It was called "Ripple cushion" and the purpose of this seat was to keep a continuous air circulation to avoid pressure soreness.
Walking exercises using calliper and getta frame
On Tuesday 23 March, Mr Gardner saw my soreness which suddenly deteriorated and got much bigger. He then advised the ward sister to show my soreness to a plastic surgeon. After two weeks, a plastic surgeon came to see me from Saint Andrews Hospital. He investigated my wounds. I got my new pair of callipers and I started walking exercises with those new callipers on. The callipers were much more comfortable than the splints because I could bend my knees with the callipers on. I was transferred to Saint Andrews Hospital on 24th of April for my skin grafting.
Saint Andrews Hospital
I went to Saint Andrews Hospital by an ambulance on Saturday 24 April 1982. This hospital was smaller and every patient had a separate room. I was in room no 4 of Vallirica ward. I was given a T.V set so that I wouldn’t get bored. In the afternoon Dr Norris examined my soreness and told me about the skin grafting. The nursing staff of this hospital were excellent because they used take much more care than Basildon Hospital. On Monday 26 April I was having my breakfast when the plastic surgeon Mr. Berry, came to see my wound. He decided to do the operation in the afternoon and said they would take one step at a time. I stopped eating and was put under nil by mouth. They took blood samples, photographs and x-rays. At 2 p.m. I went to the theatre and came back to the ward at 3.30 p.m. They took skin from my left thigh. At night I was feeling restless with pain and plenty of spasms. So they gave me an injection and I had a nice sound sleep.
Next morning the nurse gave me a nice wash and I was feeling much better. In the afternoon they brought my skin and cut it into shape and grafted on my right side. They advised me to lie on my left side and back only to keep the right side out of pressure totally. On 6 May, after 11 days they put me into a hot special bath-tub and took the thick bandage from my left thigh - the places were they peeled the skin. On Friday 14th of May, Mr Berry saw my skin grafting which healed up properly. He decided to do the other hip on Tuesday. They transferred me to a special air bed with continuous air circulation underneath.
On Tuesday 18 May once again for the eleventh time I went to the operation theatre for an operation. In the morning the nurses gave a bed bath and I went to the theatre around 9 a.m. The operation went on successfully. The only painful part of that day was the doctor having to inject me 5 times to give an anaesthetic injection. Previously when I went to the theatre they managed to inject in the first go. On 21 May, Mr Berry saw the grafting and advised me to lie on either sides. I was told that they would send me back to Basildon after two weeks. Here the nurses were really good and used take much care. On 24 May 1981 the nurses took me out in the garden for the first time in 18 months viewing the open sky and fresh air.
On 1 June, after two weeks of my operation they took the stitches off which healed up nicely. Mr Berry rang Mr Gardner and explained my conditions. Mr Gardner gave him permission to seat me in a wheelchair. They also decided to discharge me the next day. I came back to Basildon Hospital on 5 June 1982, after staying 6 weeks in Saint Andrews Hospital. I left the hospital at 12 noon leaving behind all my favourite nurses who cared a lot and never disheartened me.
The Final Stage at Basildon Hospital
I came back to Basildon Hospital on 5 June after 6 week's treatment at Saint Andrews Hospital. Soon I met my old nurses who started joking at me, "Here comes the trouble". Next day, my friend John brought his television set because I didn't have one from the hospital. On Tuesday 8 June, Mr Gardner came and was pleased to see my skin grafting. He told me that he would ring Stoke Mandeville so that I could get my admission as early as possible. He advised me to stick with my old regime i.e. doing various exercises. I could also put the callipers on by myself and straighten and stand up on the frame with little assistance.
On 30 June I was sent to Manchester for a week. It was a mini break for me after staying over a year in hospitals. I went by ambulance and came back on 5 July. Next day Mr Gardner saw me and told me that he was still trying to transfer me to Stoke Mandeville as early as possible. I was getting fed up and depressed because of the different problems which I was still suffering from since my operation done two years ago.
On 13 August 1982, I was very upset with the physiotherapist of our ward. Earlier I noticed that my spasms were getting worst, causing lots of problems like wearing callipers, transferring etc. I told Mr Gardner about my spasms and he advised the physiotherapist to give passive movement regularly to break my spasms. They also changed my spasms drugs from Dantrium to Baclofen and increased the dosage, but this made no improvement. I was not getting proper physiotherapy treatment as well.
One day I asked Sarah the physiotherapist to give me some passive movement. At first she replied "No"- and then she said to me, "I haven't got time to give you exercise, we have got more important things to do". This made me really annoyed and upset. I didn't say anything to her. I realised that if I remained quiet, like I did before all the time, I would be the sufferer. I decided to take the matter to Mr Gardner himself. On Tuesday 17 August, when Mr Gardner came to see me as usual, I at first told him about my spasms and then I mentioned about the negligence by the physiotherapist. While I was complaining to him, I had tears in my eyes. I asked why I was neglected in Manchester at first place. Because of their negligence, today I have lost my legs. I also asked Mr Gardner why I am not an important patient? Mr Gardner didn't say anything to me but said that he would come back to me on Friday and then he would make a decision.
On Friday 20th of August, I had a discussion with Mr Gardner along with the ward sister, Sarah and Ali. Mr Gardner told me that I was still in long waiting list for Stoke Mandeville Hospital and would have to wait several months. He told me that he found a place at Wrightington Hospital which was near Manchester, where they also treat paraplegic patient. He also promised me that they would send me to Stoke Mandeville as soon as a place was ready. On 26 August 1982, I was transfer to Wrightington Hospital. I was driven by a hospital car. It took about 5 hours to cover the 300 miles journey. I arrived at Wrightington Hospital and was admitted in ward no 3. Thus a new era began in a new hospital - The Wrightington Hospital.
The Wrightington Hospital
On 26 August 1982, I was transfer to Wrightington Hospital which was 30 miles off Manchester. I was in ward 3 and it was a general ward. In the afternoon Dr Singh an Indian registrar of Mr Wood, the new consultant, examined me. At first I was feeling very lonely because all the patients and nurses were new to me. The first 2-3 days I spend my time watching cricket between Pakistan and England in television.
Mr Wood, the consultant came and examined me on 2 September. He also saw my walking and the problems with my spasms. The physiotherapists of this hospital was very good and sincere. They used to walk me everyday. I also used to do exercise in the swimming pool and used to feel much better and relaxed. My walking had improved but the spasms were still there. Due to spasms I had difficulties transferring from bed to chair. Every time I attempted walking my legs got stiffed and crossed. Mr Wood told me that he wants to discuss with Mr Krishnan a spinal consultant at Southport.
The nurses of this hospital were nice to me. Whenever I asked for something they used to listen at once. Especially when I asked for suppositories to empty my bowels, they used to give me them every 2-3 days. The nurses at Basildon used to neglect on this matter and used to leave it for 8-10 days. The ward sister was nice and told me to remind her after every 2 days. I used to feel much better because of a nice system and routine.
On the 17 October, Mr Wood came and saw problems with spasms and transferring to and from bed. He told me that he wanted to discuss with Mr Watson of Sheffield since Mr Krishnan was delaying to come and see me. On 19 October, Mr Watson came from Sheffield and together with Mr Wood they examined and discussed my spasms and other problems. Mr. Watson suggested for an operation to stopped my legs getting crossed.
On 27 October once again for the 12th time I went to the theatre for an operation - "Obtruator Newectomy and Tenotomy". For the first 2-3 days I was in pain. I felt much better after this operation because I could keep my legs apart and straight. On 1st of November I had my first walk. I had some difficulties for the first few days. I felt much better and comfortable whilst sitting in a wheelchair because the knees remained apart. Before when I used to seat the knees used to stick together like glue. Next day Mr wood told me to practice dressing on my own and to wheel outside. They also taught me how to insert suppositories on my own. I learned how to transfer from chair to bed and vice versa. I found my transferring was getting much better and began feeling more confident. On the l0 November Mr Wood decided to send me for a home visit to assist my needs and my capability at home on my own. He told me that I would have to accept the wheelchair for the rest of my life and my limited walking capabilities with the help of callipers was not sufficient for outdoor activities. At first I was upset but after seeing George who became paralysed after a fall and had limited movement in arms, I thought to myself that at least I was much better than him and must give thanks to Almighty Allah, as my condition could have been worse.
On 17 November I went to Manchester for a home visit accompanied by our social worker and Carole the physiotherapist. At home my movement and transferring were not too bad provided the heights were right. The only problem was stairs which could only be solved if a lift was installed. The manoeuvre inside was not too bad. Next day Mr Wood came and asked me about my home visit. I told him all about what I could do and what I could not. He told me that they would provide all the aids that I needed through social service. He decided to discharge me next week. He advised me to do standing exercises for better circulation and functions of bowels and kidney as well as making bones stronger. He also told me that he would see me in two months time.
On the 25 November 1982, I was discharged from Wrightington hospital after staying exactly 90 days. My brother came at 2.00 p.m. to pick me up. He met Mr Wood as well. Earlier in the morning I packed up all my clothes and goodies. I came to our sweet home at 3.30 p.m. in the afternoon. I had a mixture of feelings - happiness, loneliness, and nervousness etc.
Southport Promenade Hospital
After coming home, in the beginning I had tough time because I had to do all the things on my own. As time passed things were getting easier daily for me. The social worker came and started to providing the things that I needed most. One of my difficulties was taking a bath. Initially the district nurses used to come every other day to give me a bath. Later on I had a bath lift fixed to enable me to take bath on my own.
After my discharge from Wrightington hospital I still had a belief that I would walk one day provided I had the right treatment. I was unhappy because I didn't get my treatment at Stoke Mandeville - an internationally renown spinal unit. I was very eager to go to Stoke Mandeville. I requested Mr Gardner to arrange sending me to Stoke Mandeville. After a few months I received a letter from Mr Gardner regarding Stoke Mandeville and the difficulties and admission delay. I also took my own initiative. I knew about Mr. Jimmy Saville who holds a strong position at Stoke Mandeville. I wrote to him but sadly I had a negative response from him.
However, Mr Gardner promised me that he would try his best to send me to a spinal unit for a final rehabilitation. I started waiting eagerly for that day. Mr Gardner finally managed a place at Southport, another spinal unit. After waiting for nearly 1 year and a half I finally got a place at Southport Promenade Hospital. The consultant of this hospital was Mr. Krishnan, an Indian Spinal Consultant. I met him on 27 June 1984 as an out patient. I explained to Mr Krishnan about my operations and the after effects. Mr Krishnan told me that he wanted to see me as an in-patient to assess my conditions. On 6 August 1984 I was admitted at Southport Promenade Hospital. I was in ward G3.
In this hospital I found that all the patients were wheelchair bound. Some of them were even worst then me i.e. Quadriplegic and tetraplegic. I realised how lucky I was and better than some of the patients, praise be to the Almighty. In the afternoon Dr Thio, a lady doctor and registrar of Mr. Krishnan came and asked me different questions and problems. After examination she told me that the level of my injury was quite high.
In this hospital there were no restrictions for visiting hours except during two hours of physiotherapy from 10.45 to 11.45 and 3.45 to 4.45 and two hours O.T from 1.00 to 3.00 in the afternoon. Julie the O.T lady ordered a new wheelchair for me. One of the nurses showed me how to use the condom to solve my urine problems and to protect myself getting wet. I found that after using the condom I felt dry and comfortable and could go out freely wherever I liked with least anxiety. On 8 August they took several x-rays of my back and chest.
The first week I had done some weight lifting exercises in the gymnasium. The physiotherapist started teaching me back wheel balance so that I can do the kerb and footpath on my own. Here the physiotherapists John, Mike and Chris used to help us in doing those exercises in the gymnasium. On Monday 13 August Mr. Krishnan and his team came to see me. He explained to me about their programme. He wanted to see my IBP x-rays to make sure that my bladder was working properly. On 20 August Mr Krishnan came and told me that IBP reports showed everything was normal. He told me that he wanted to discuss my future with me and my brother in his office
On Wednesday 22 August my brother and I met Mr Krishnan in his office and discussed my problems for nearly two hours. Mr Krishnan told us there was little chance for me to walk again normally because the operation that I had done in Basildon damaged my spinal cord badly. Mr. Krishnan thought that Mr Gardner made a great mistake in doing the operations which shouldn't have taken place at the very beginning. Mr Krishnan told me he felt very sorry for what had happened to me and that I had to accept the wheelchair for the rest of my life. But he said that they were going to train me in such a way that I could lead my life with maximum freedom and independence.
In this hospital I met an Indian patient called Rony from Bombay who became paralysed after being hit by a five-tonne crane in Liverpool dock. Tony had been here for 27 years after a fall from a tree and Graham had had a car accident that also left him in a wheelchair. One thing I found similar to other patients were bowels and urine problems. Some of the patients were even worse than me because they couldn’t feel any sensations at all. I thanked almighty Allah that at least I was better than those patients.
There were many patients who couldn't use their arms. Sometimes I used to help them in dialling the telephone, turning newspapers or lighting cigarettes. My walking with the help of callipers had improved a lot and I had the stamina to walk down from gym to ward G-3 which was approximately 100 yards. The nursing staff showed me how to check whether my bowels were empty or not. I told Dr Thio about the funny feelings I usually had after being to the toilet. She examined but found nothing. She thought I was getting the wrong messages.
On 3 September Mr Krishnan came and asked me about my abilities and I told him. I gave him my diary to read and he made a nice comment. Next day they decided to discharge me by the end of the week. They also made some alternation to my callipers so that I could stand properly. On Friday 7 September 1984, I was discharged and came home by ambulance in the evening. I was in the Regional Spinal Injuries Centre of Southport Promenade Hospital for less than 5 weeks.
Conclusion and Comments
Every operation whether it is a minor or major one is a matter of luck and destiny. In my case things didn't turn out nicely. An operation which has a success rate of 100% may also turn sour if a minor mistake occurs.
In my case, things went wrong in the very second operation that affected my healthy legs. My doctor didn't give up. I believe that Mr Gardner tried his best but unfortunately it failed to work.
I became paralysed from waist down after this operation and was confined to a wheelchair. I was in 5 different hospitals for nearly 822 days. Many patient friends heard my tragic events. Some of them had asked me, why I didn’t sue the doctor. For me, money was nothing because I always believed "Health is Wealth". So I used to answer them what would I do with money? You can't enjoy when you are not fit. Sometimes I have a bad feeling about the whole operations and the outcome - The operations that completely ruined my life in every respect. The most painful one, is when I see all my surroundings and things I want to enjoy, but cannot for various reasons.
Only a miracle from Allah Almighty can turn up my sorrows and sadness. But for the moment I have to accept "A New Life" - which is indeed a painful one.
This picture was taken in front of Manchester Disability Information Service where I used to work as Project Officer