Post by abprops on Sept 23, 2009 15:54:19 GMT -6
Hi All
I was diagnosed as having sciatica in July 2008. I did not agree as I became aware of the problem when on a week long hill walking and climbing holiday. During the day I was doing strenuous walking and climbing. As the week progressed I had more and more discomfort in bed but was OK when I got up. But when I returned home on the Saturday the pain did not go away night or day. The first signs were instantaneous pains in my lower body when in a sitting position or a crouching position. On the first occasion Easter 2008, I was sitting holding a heavy book in both hands when I turned my shoulders to the right. On the second I crouched down with a heavy digital camera in both hands and turned my shoulders to the left to show a seated person an image on the screen. These two occasions were three months apart. The second occasion being in the evening at the start of the weeks hill walking. See www.mountainhiking.org.uk/scotland-mountains/glendoll/index.shtml
I drove home on the Saturday morning and waited until the Monday to see my Doctor or General Practitioner. (GP) But our GP medical practice was closed as it was a Monday holiday. So we went to the the Accident & Emergency unit at our local hospital. I was referred to the night GP who deals with all patients in and around Perth City in the evening, weekends and holidays, as our GPs do not work out with 08.30 to 17.00. The night GP did not do any form of physical examination but told me that I had Sciatica and nothing could be done. I said but I am in constant pain 24 hours a day. Nothing can be done about sciatica you will just have to get on with it as thousands of others have to, just keep taking Ibuprofen at maximum dose every three hours. He also informed me that there is no point going to my GP as there is nothing he can do, unless you need a sick line and as you are self-employed you don't. His other suggestion was to see an Osteopath but after 5 appointments it was obvious that the Osteopath was not helping so I went to my GP. He said but you have already been told nothing can be done for sciatica keep taking the ibuprofen. I informed him that the ibuprofen took an hour to merely take the very edge of the pain for 1 hour at most and then I had another hour until time for the next dose, I could only lie on my back for at most 1 hour at a time with little sleep and the only way I could obtain relief was extremely hot baths.
After two appointments my GP informed me that the NHS would not authorise X-Rays for sciatica and referred me for assessment by physiotherapy of up to 24 weeks warning that not many complete the course. The physiotherapist diagnosed a stiff lower back caused by lack of exercise. I felt nauseous when asked to bend my back repeatedly backwards and asked what position she would be in if there was something wrong inside my body she asked was I threatening her. The Physiotherapist confirmed that X-rays were not cost effective for sciatica. So I went to my doctor and demanded blood samples, a prostate check and an X-Ray. He refused but gave in when I refused to leave his office for over an hour despite being threatened with police action.
The note attached to the x-ray said I had severe deterioration of my lower spine. Hence the sciatica said my doctor and the stiff lower back.
The blood samples indicated strange chemicals in my blood and a highly inflamed liver. My doctor complained that I had not informed him that I was a heavy drinker. When I said I was not a heavy drinker he replied, with a liver in that condition you must be an alcoholic. Luckily for me a Consultant Gastroenterologist (CG) took an interest, when my doctor asked him about the blood test results and a strange patient, who was claiming to have no problems with his skeletal structure and asking for a referral to a psychiatrist. I had pleaded to be referred to a specialist and when my doctor said it was all in my head, I said well refer me to a psychiatrist but do something.
The CG looked at the x-ray and could find nothing wrong with the skeletal structure I had lived with for 64 years. It turns out that the Institute of Radiologists in the UK insist that this reference to severe damage is placed on all x-rays of men in my age group. The consultant NS who operated on the Tumour in the Thoracic area of my spine confirmed this. After the CG authorised and directed CT Scans and the Consultant Nuerosurgeon (CNS) authorised an MRI scan.
So the tumour was removed on 3 Feb 2008. At the first NS outpatients clinic the NS registrar who had been present during my time in hospital explained more about the tumour and a second extremely small tumour which became evident when an 'enhanced' scan was obtained from the original pre operation MRI scan. He assured me that progress of that second tumour would be monitored by the 6 monthly MRI scans for the foreseeable future..
After the second MRI scan, 6 months after the first, I received a letter informing me that there was no 'evidence' of any remains of the first tumour, at the site of the operation but no mention of the second tumour. The mention of 'evidence' was confusing as both the CNS and his Registrar had very carefully informed me that the 'seeds' of the tumour or tumours could not be seen with the naked eye or the equipment used during the operation. During the first outpatients clinic, when I was informed of the second tumour, the NS registrar gave me additional information. The 'seeds' he informed were abnormal cells within the nerve sleeve, hence they could not bee seen by the naked eye or the headset used during the operation, or even an MRI scan.
I had been making steady progress until July and had returned to work in April. Sensations in my left leg had reduced to only slight sensation above my knee but there were many other symptoms. Then I started to have more problems, the uncomfortable sensations were returning so I decided to have a 6 week holiday in New Zealand knowing that when I returned I would have a second out patients clinic on 20 August.
During the holiday I continued to improve gradually increasing distance walked each day, with good times with my daughter and new grandchild. I still had problems however and when I returned home early August I was not feeling too good.
At first I put it down to post holiday blues but it was obvious to me that I had a problem if not problems. At the second outpatients clinic I met a new registrar, he simply asked for my symptoms whilst flicking through my medical file, he the announced that all was satisfactory, none of my symptoms were related to the tumour or the operation and I should ask my Doctor to start a new series of investigations as the NS and clinics were over. I asked about the second tumour, he replied I have no knowledge of a second tumour. I said but the other registrar was so definite and pointed it out on an 'enhanced' scan' saying it would be monitored by the 6 monthly MRI scans mentioned by the CNS. To my horror this second registrar laughed and said 6 monthly MRI scans you will be lucky if an MRI scan is 'authorised' for one year from now.
So back to the the doctor on 4 Sept, but he could not understand why I had returned to him or what I expected him to do. This was a new to me doctor or General Practitioner (GP) at the same medical centre as the last GP had left. There are other details I have missed out as there is too much detail. In fact my latest GP has informed me that he is concerned about my mental health as I go into too much detail. Something similar to the previous GP's “its all in your head”, prior to the tumour being found within the Dura, pressing on, pushing my spinal cord across and twisting it around its longitudinal axis. Not quite in my head but barely 10 inches from it.
I e-mailed the CNS with my problems admitting that the second registrars opinions were sending my concerns spinning out of control. I met the CNS on Thursday 17 September, he showed me more detailed MRI scans, taken immediately prior to the operation. The second tumour in the Lumbar area of my spinal cord is very small and only visible in one 'cut' or view of that MRI scan. Other views or 'cuts' of the same MRI scan show nothing in that area, one view does show something but it is hard to interpret. Hence there was no reference to the second tumour in my medical file, hence the second registrar and my GP were unaware of this possible second tumour.
The CNS has confirmed that the balance of expert opinion is that there is a second very small tumour though they have no explanation of why it only shows up in one view or 'cut' on the MRI scan. I had an appointment with my doctor on Monday 21 Sept and he now informs me that the second smaller tumour has no effect on my supposed symptoms.
At my first appointment 04 Sept, with the then new to me GP, I provided a typed list of my many and varied symptoms and a typed list of my concerns, to let him understand what all this was doing to me and my state of mind. He said he had no time to read all that now or in the future, he refused my request for further blood tests and blood pressure checks, heart rate etc. At the next appointment with the GP on 14 Sept he decided to take blood samples, to my surprise, not because I had asked him to on the first appointment but because he did so himself, normally that requires an appointment with a nurse phlebotomist. He also checked my blood pressure, but too much detail so I stop.
I had a third appointment with my now GP on 21 Sept. The blood tests indicated high sugar levels but he said, I was not to go off believing I had diabetes as the explanation was simple. He had forgotten that such blood samples required fasting and I must have had breakfast as the last appointment had been at 11.20. So my next set of blood samples are with the nurse phlebotomist on 01/10/09 and a set of blood pressure tests at six weekly intervals start on 30/10/09. So no great hurry or concern it seems.
I had asked Linda Stophel for some information on MRI scans etc as |I seem to remember seeing something about the possibility of Schwanomas ocurring on any part of the human body as they are related to the nerves or the cells which make up the sheath surrounding each individual nerve.
Linda replied yesterday and informed me that MRI scans in some occasions do not find tumours, and in some circumstances tumours which seem to be small on the MRI scans, turn out to be far larger when operated on. I wonder could these facts perhaps explain why my second tumour is only visible in one view or 'cut' but not visible from other views? Could this also explain why some tumours turn out to be larger than the MRI scan indicated? Could it possibly be that the contrast medium only shows indications of a scan where the die penetrates into the part with a blood supply? Could it be that some tumours only have a blood supply to a part of the tumour and the contrast die will only highlight the part with a viable blood supply? Hence the lack of views of my second tumour and the possibility that that small tumours turn out to be larger than suggested by MRI scans?
It may be obvious to anyone reading the above that we in the UK do not have ready access to medical information as you in the US apparently do. Nor do we receive written information other than appointment dates and rarely information such as the letter advising that there was no evidence of regrowth at the site of the operation. Yet though I have that piece of information I have no written information on the second tumour, yet I was given verbal information and shown scans with that second tumour clearly shown before the MRI scan that the letter referring to the no evidence of regrowth. I have asked for copies of my MRI scans but have not had a reply. I have looked into the possibility of purchasing MRI scans from 'Private' hospitals. It appears that I can obtain some form of MRI scan but of doubtful quality. The 'Private' hospital group inform me that I will have to pay my GP to refer me to a specialist prior to any MRI scan, who may be the same specialist CNS who operated, If the private MRI scan is 'authorised' I will have to pay for another specialist to analyse any MRI scan produced. When I point out that I can obtain a specialist to analyse the MRI scan or scans, the 'Private' hospital group say that's impossible. The reason for this being impossible is that all doctors and specialists employed must also be NHS employees or contractors. They say this is because the so called 'Private' hospital group, shares all doctors, specialists and facilities with the NHS. It seems that the 'Private' hospital group is simply a billing facility who at best also run some high class medical hotels or bedrooms for those willing to pay more. So much for a medical service free at the point of use. It would seem that the NHS also run or share a second system for those who wish to or are able to pay for the same doctors, specialists and facilities unless those patients would prefer if a higher standard of accommodation.
Sorry about the detail, as my doctor says it reflects my state of mind. If anyone can advise or correct my thoughts I would be grateful. Just in case there is any confusion I have no problems with the Consultant Neurosurgeon or the Consultant Gastroenterologist or the Consultant Urologist or indeed with any of the medical staff or support staff in the two local hospitals who have all looked after me with care and attention. I am and will always be grateful to all of them as even if they may have made mistakes, those mistakes are understandable or at least I hope they are. I do however have reservations about both GPs, the administrative personnel at my local medical centre and the Physiotherapy Department of my local hospital, the night GPs, The Primary Care Trust and the NHS. Perhaps that is unfair but then I object to being told that an X-ray is not cost effective for sciatica, when it had not been proven that I had sciatica; nor was there any justification for assuming that I had a stiff lower back due to slouching in front of the television; or that I was threatening staff when I ask the simple question, what position would you be in if it turns out that I have something seriously wrong within my body; or that it is all in my mind, when I cannot accept that I have sciatica based on my knowledge of my body; or that the amount of detail in my questions and written information show my state of mind. Particularly as one of my main purposes in giving such detail, was exactly that, to indicate what was going on in my head and the devastating effects that this was having on me and my family. Hence my statement my concerns are spinning out of control, and I was asking, please help me, do something. If you as a doctor believe that it is all in my mind, refer me to a psychiatrist but do something.
One other thing, for months I was told by various doctors or General Practitioners, that nothing could be done. They would not even touch me far less examine me physicality, I was repeatedly told to keep taking ibuprofen, maximum dose 24 hours a day, nothing could be done. At the third visit to the emergency, out of hours doctor or night GP service, when NHS 24 had referred me as a possible heart attack patient, I finally broke down in tears. When the GP asked what is wrong, I could not reply and when my wife said, it's the constant pain 24 hours a day and not being able to sleep. The reply from the night GP was, I did not know you were in constant pain, but I can prescribe 'the drug of choice' for sciatica Diclofenac. He then said, see your doctor GP in the morning, he will have to sort this out. So my GP said, I can better that and prescribed Tramodol. All this was before the tumour was found. That GP's only explanation was a shrug of his shoulders. Even when my wife asked him to explain. Does anyone believe that I am the sort of person who would not attempt to explain that I was in pain 24 hours of the day? Or had my state of mind not got to the point where I thought such detail was necessary and what about the keep taking the ibuprofen, maximum dose 24 hours a day. My wife was with me on at least 3 occasions when I visited the night doctor or GP, yet it was only when the night doctor asked what is wrong, that she thought to say its pain 24 hours a day.
To explain our local doctors or General Practitioners are self employed contractors to the NHS and do not now work at night, weekends or holidays. Other General Practitioners work part time at special clinics in the hospitals, they also are contractors. All our GPs are gatekeepers and are encouraged to treat patients themselves rather than refer those patients to hospital specialists. Indeed those same GPs were awarded a massive pay rise and reduced hours in return for doing more to treat patients themselves during their reduced working day. It seems to me that they are reacting to government policy in order to make more money.
When I returned for a second course of physiotherapy after the operation, the second young girl was much easier to get along with. She was to some extent more sympathetic but I formed the opinion that she did not understand my limitations, following some 8 months of deterioration of my muscles and nerves or the effects of the operation on my body and yes my mind. Half way through that short course a notice appeared in the waiting room. A cutting from an unreferenced source advised patients that x-rays and MRI scans were of no benefit to people with back pain. It went on to say that MRI scans often highlighted abnormalities and medics were persauded to operate to no good effect. The conclusion being that phyisiotherapy was the best and proven treatment for all forms of back pain. I mentioned this the the physiotherapist and she replied but it is a proven fact that Physiotherapy is the best treatment. Operations are costly and often leave the patient worse off. When I asked what about my case your colleague would not listen and was determined that I should continue with the physiotherapy for 24 weeks before any possibility of an X-Ray. Even though she and my GP informed me that few people could stay the course. She replied but how do you know that my colleague was not right and if you had continued for the 24 weeks you would not have recovered without surgery. The tumour I replied, it was crushing my spinal cord ,hence my nausea and if it had been left to grow I would have been unable to walk or worse. Her final reply, you are the only person who ever mentioned a tumour. I was discharged from Physiotherapy after a few more sessions, even though it must have been I obvious that I had no where nearly recovered. There was obviously no thoughts of a recovery period of 24 weeks physiotherapy.
If anyone cares to provide information help or simply comments they would be appreciated. If anyone from the UK can help with obtaining copies of X-Rays, CT Scans and MRI scans or the recording of the operation via the CNS headset I would be obliged. Equally if I can be of help to anyone Please let me know and I will do my best.
The Spinal Cord Tumour Association website, the forum content and Linda Stophel's support and help have been excellent and helped me enormously much more than I can ever say. Thank you all.
Morris (65 ½ years of being wrong but still hanging in there to learn by experience)
I was diagnosed as having sciatica in July 2008. I did not agree as I became aware of the problem when on a week long hill walking and climbing holiday. During the day I was doing strenuous walking and climbing. As the week progressed I had more and more discomfort in bed but was OK when I got up. But when I returned home on the Saturday the pain did not go away night or day. The first signs were instantaneous pains in my lower body when in a sitting position or a crouching position. On the first occasion Easter 2008, I was sitting holding a heavy book in both hands when I turned my shoulders to the right. On the second I crouched down with a heavy digital camera in both hands and turned my shoulders to the left to show a seated person an image on the screen. These two occasions were three months apart. The second occasion being in the evening at the start of the weeks hill walking. See www.mountainhiking.org.uk/scotland-mountains/glendoll/index.shtml
I drove home on the Saturday morning and waited until the Monday to see my Doctor or General Practitioner. (GP) But our GP medical practice was closed as it was a Monday holiday. So we went to the the Accident & Emergency unit at our local hospital. I was referred to the night GP who deals with all patients in and around Perth City in the evening, weekends and holidays, as our GPs do not work out with 08.30 to 17.00. The night GP did not do any form of physical examination but told me that I had Sciatica and nothing could be done. I said but I am in constant pain 24 hours a day. Nothing can be done about sciatica you will just have to get on with it as thousands of others have to, just keep taking Ibuprofen at maximum dose every three hours. He also informed me that there is no point going to my GP as there is nothing he can do, unless you need a sick line and as you are self-employed you don't. His other suggestion was to see an Osteopath but after 5 appointments it was obvious that the Osteopath was not helping so I went to my GP. He said but you have already been told nothing can be done for sciatica keep taking the ibuprofen. I informed him that the ibuprofen took an hour to merely take the very edge of the pain for 1 hour at most and then I had another hour until time for the next dose, I could only lie on my back for at most 1 hour at a time with little sleep and the only way I could obtain relief was extremely hot baths.
After two appointments my GP informed me that the NHS would not authorise X-Rays for sciatica and referred me for assessment by physiotherapy of up to 24 weeks warning that not many complete the course. The physiotherapist diagnosed a stiff lower back caused by lack of exercise. I felt nauseous when asked to bend my back repeatedly backwards and asked what position she would be in if there was something wrong inside my body she asked was I threatening her. The Physiotherapist confirmed that X-rays were not cost effective for sciatica. So I went to my doctor and demanded blood samples, a prostate check and an X-Ray. He refused but gave in when I refused to leave his office for over an hour despite being threatened with police action.
The note attached to the x-ray said I had severe deterioration of my lower spine. Hence the sciatica said my doctor and the stiff lower back.
The blood samples indicated strange chemicals in my blood and a highly inflamed liver. My doctor complained that I had not informed him that I was a heavy drinker. When I said I was not a heavy drinker he replied, with a liver in that condition you must be an alcoholic. Luckily for me a Consultant Gastroenterologist (CG) took an interest, when my doctor asked him about the blood test results and a strange patient, who was claiming to have no problems with his skeletal structure and asking for a referral to a psychiatrist. I had pleaded to be referred to a specialist and when my doctor said it was all in my head, I said well refer me to a psychiatrist but do something.
The CG looked at the x-ray and could find nothing wrong with the skeletal structure I had lived with for 64 years. It turns out that the Institute of Radiologists in the UK insist that this reference to severe damage is placed on all x-rays of men in my age group. The consultant NS who operated on the Tumour in the Thoracic area of my spine confirmed this. After the CG authorised and directed CT Scans and the Consultant Nuerosurgeon (CNS) authorised an MRI scan.
So the tumour was removed on 3 Feb 2008. At the first NS outpatients clinic the NS registrar who had been present during my time in hospital explained more about the tumour and a second extremely small tumour which became evident when an 'enhanced' scan was obtained from the original pre operation MRI scan. He assured me that progress of that second tumour would be monitored by the 6 monthly MRI scans for the foreseeable future..
After the second MRI scan, 6 months after the first, I received a letter informing me that there was no 'evidence' of any remains of the first tumour, at the site of the operation but no mention of the second tumour. The mention of 'evidence' was confusing as both the CNS and his Registrar had very carefully informed me that the 'seeds' of the tumour or tumours could not be seen with the naked eye or the equipment used during the operation. During the first outpatients clinic, when I was informed of the second tumour, the NS registrar gave me additional information. The 'seeds' he informed were abnormal cells within the nerve sleeve, hence they could not bee seen by the naked eye or the headset used during the operation, or even an MRI scan.
I had been making steady progress until July and had returned to work in April. Sensations in my left leg had reduced to only slight sensation above my knee but there were many other symptoms. Then I started to have more problems, the uncomfortable sensations were returning so I decided to have a 6 week holiday in New Zealand knowing that when I returned I would have a second out patients clinic on 20 August.
During the holiday I continued to improve gradually increasing distance walked each day, with good times with my daughter and new grandchild. I still had problems however and when I returned home early August I was not feeling too good.
At first I put it down to post holiday blues but it was obvious to me that I had a problem if not problems. At the second outpatients clinic I met a new registrar, he simply asked for my symptoms whilst flicking through my medical file, he the announced that all was satisfactory, none of my symptoms were related to the tumour or the operation and I should ask my Doctor to start a new series of investigations as the NS and clinics were over. I asked about the second tumour, he replied I have no knowledge of a second tumour. I said but the other registrar was so definite and pointed it out on an 'enhanced' scan' saying it would be monitored by the 6 monthly MRI scans mentioned by the CNS. To my horror this second registrar laughed and said 6 monthly MRI scans you will be lucky if an MRI scan is 'authorised' for one year from now.
So back to the the doctor on 4 Sept, but he could not understand why I had returned to him or what I expected him to do. This was a new to me doctor or General Practitioner (GP) at the same medical centre as the last GP had left. There are other details I have missed out as there is too much detail. In fact my latest GP has informed me that he is concerned about my mental health as I go into too much detail. Something similar to the previous GP's “its all in your head”, prior to the tumour being found within the Dura, pressing on, pushing my spinal cord across and twisting it around its longitudinal axis. Not quite in my head but barely 10 inches from it.
I e-mailed the CNS with my problems admitting that the second registrars opinions were sending my concerns spinning out of control. I met the CNS on Thursday 17 September, he showed me more detailed MRI scans, taken immediately prior to the operation. The second tumour in the Lumbar area of my spinal cord is very small and only visible in one 'cut' or view of that MRI scan. Other views or 'cuts' of the same MRI scan show nothing in that area, one view does show something but it is hard to interpret. Hence there was no reference to the second tumour in my medical file, hence the second registrar and my GP were unaware of this possible second tumour.
The CNS has confirmed that the balance of expert opinion is that there is a second very small tumour though they have no explanation of why it only shows up in one view or 'cut' on the MRI scan. I had an appointment with my doctor on Monday 21 Sept and he now informs me that the second smaller tumour has no effect on my supposed symptoms.
At my first appointment 04 Sept, with the then new to me GP, I provided a typed list of my many and varied symptoms and a typed list of my concerns, to let him understand what all this was doing to me and my state of mind. He said he had no time to read all that now or in the future, he refused my request for further blood tests and blood pressure checks, heart rate etc. At the next appointment with the GP on 14 Sept he decided to take blood samples, to my surprise, not because I had asked him to on the first appointment but because he did so himself, normally that requires an appointment with a nurse phlebotomist. He also checked my blood pressure, but too much detail so I stop.
I had a third appointment with my now GP on 21 Sept. The blood tests indicated high sugar levels but he said, I was not to go off believing I had diabetes as the explanation was simple. He had forgotten that such blood samples required fasting and I must have had breakfast as the last appointment had been at 11.20. So my next set of blood samples are with the nurse phlebotomist on 01/10/09 and a set of blood pressure tests at six weekly intervals start on 30/10/09. So no great hurry or concern it seems.
I had asked Linda Stophel for some information on MRI scans etc as |I seem to remember seeing something about the possibility of Schwanomas ocurring on any part of the human body as they are related to the nerves or the cells which make up the sheath surrounding each individual nerve.
Linda replied yesterday and informed me that MRI scans in some occasions do not find tumours, and in some circumstances tumours which seem to be small on the MRI scans, turn out to be far larger when operated on. I wonder could these facts perhaps explain why my second tumour is only visible in one view or 'cut' but not visible from other views? Could this also explain why some tumours turn out to be larger than the MRI scan indicated? Could it possibly be that the contrast medium only shows indications of a scan where the die penetrates into the part with a blood supply? Could it be that some tumours only have a blood supply to a part of the tumour and the contrast die will only highlight the part with a viable blood supply? Hence the lack of views of my second tumour and the possibility that that small tumours turn out to be larger than suggested by MRI scans?
It may be obvious to anyone reading the above that we in the UK do not have ready access to medical information as you in the US apparently do. Nor do we receive written information other than appointment dates and rarely information such as the letter advising that there was no evidence of regrowth at the site of the operation. Yet though I have that piece of information I have no written information on the second tumour, yet I was given verbal information and shown scans with that second tumour clearly shown before the MRI scan that the letter referring to the no evidence of regrowth. I have asked for copies of my MRI scans but have not had a reply. I have looked into the possibility of purchasing MRI scans from 'Private' hospitals. It appears that I can obtain some form of MRI scan but of doubtful quality. The 'Private' hospital group inform me that I will have to pay my GP to refer me to a specialist prior to any MRI scan, who may be the same specialist CNS who operated, If the private MRI scan is 'authorised' I will have to pay for another specialist to analyse any MRI scan produced. When I point out that I can obtain a specialist to analyse the MRI scan or scans, the 'Private' hospital group say that's impossible. The reason for this being impossible is that all doctors and specialists employed must also be NHS employees or contractors. They say this is because the so called 'Private' hospital group, shares all doctors, specialists and facilities with the NHS. It seems that the 'Private' hospital group is simply a billing facility who at best also run some high class medical hotels or bedrooms for those willing to pay more. So much for a medical service free at the point of use. It would seem that the NHS also run or share a second system for those who wish to or are able to pay for the same doctors, specialists and facilities unless those patients would prefer if a higher standard of accommodation.
Sorry about the detail, as my doctor says it reflects my state of mind. If anyone can advise or correct my thoughts I would be grateful. Just in case there is any confusion I have no problems with the Consultant Neurosurgeon or the Consultant Gastroenterologist or the Consultant Urologist or indeed with any of the medical staff or support staff in the two local hospitals who have all looked after me with care and attention. I am and will always be grateful to all of them as even if they may have made mistakes, those mistakes are understandable or at least I hope they are. I do however have reservations about both GPs, the administrative personnel at my local medical centre and the Physiotherapy Department of my local hospital, the night GPs, The Primary Care Trust and the NHS. Perhaps that is unfair but then I object to being told that an X-ray is not cost effective for sciatica, when it had not been proven that I had sciatica; nor was there any justification for assuming that I had a stiff lower back due to slouching in front of the television; or that I was threatening staff when I ask the simple question, what position would you be in if it turns out that I have something seriously wrong within my body; or that it is all in my mind, when I cannot accept that I have sciatica based on my knowledge of my body; or that the amount of detail in my questions and written information show my state of mind. Particularly as one of my main purposes in giving such detail, was exactly that, to indicate what was going on in my head and the devastating effects that this was having on me and my family. Hence my statement my concerns are spinning out of control, and I was asking, please help me, do something. If you as a doctor believe that it is all in my mind, refer me to a psychiatrist but do something.
One other thing, for months I was told by various doctors or General Practitioners, that nothing could be done. They would not even touch me far less examine me physicality, I was repeatedly told to keep taking ibuprofen, maximum dose 24 hours a day, nothing could be done. At the third visit to the emergency, out of hours doctor or night GP service, when NHS 24 had referred me as a possible heart attack patient, I finally broke down in tears. When the GP asked what is wrong, I could not reply and when my wife said, it's the constant pain 24 hours a day and not being able to sleep. The reply from the night GP was, I did not know you were in constant pain, but I can prescribe 'the drug of choice' for sciatica Diclofenac. He then said, see your doctor GP in the morning, he will have to sort this out. So my GP said, I can better that and prescribed Tramodol. All this was before the tumour was found. That GP's only explanation was a shrug of his shoulders. Even when my wife asked him to explain. Does anyone believe that I am the sort of person who would not attempt to explain that I was in pain 24 hours of the day? Or had my state of mind not got to the point where I thought such detail was necessary and what about the keep taking the ibuprofen, maximum dose 24 hours a day. My wife was with me on at least 3 occasions when I visited the night doctor or GP, yet it was only when the night doctor asked what is wrong, that she thought to say its pain 24 hours a day.
To explain our local doctors or General Practitioners are self employed contractors to the NHS and do not now work at night, weekends or holidays. Other General Practitioners work part time at special clinics in the hospitals, they also are contractors. All our GPs are gatekeepers and are encouraged to treat patients themselves rather than refer those patients to hospital specialists. Indeed those same GPs were awarded a massive pay rise and reduced hours in return for doing more to treat patients themselves during their reduced working day. It seems to me that they are reacting to government policy in order to make more money.
When I returned for a second course of physiotherapy after the operation, the second young girl was much easier to get along with. She was to some extent more sympathetic but I formed the opinion that she did not understand my limitations, following some 8 months of deterioration of my muscles and nerves or the effects of the operation on my body and yes my mind. Half way through that short course a notice appeared in the waiting room. A cutting from an unreferenced source advised patients that x-rays and MRI scans were of no benefit to people with back pain. It went on to say that MRI scans often highlighted abnormalities and medics were persauded to operate to no good effect. The conclusion being that phyisiotherapy was the best and proven treatment for all forms of back pain. I mentioned this the the physiotherapist and she replied but it is a proven fact that Physiotherapy is the best treatment. Operations are costly and often leave the patient worse off. When I asked what about my case your colleague would not listen and was determined that I should continue with the physiotherapy for 24 weeks before any possibility of an X-Ray. Even though she and my GP informed me that few people could stay the course. She replied but how do you know that my colleague was not right and if you had continued for the 24 weeks you would not have recovered without surgery. The tumour I replied, it was crushing my spinal cord ,hence my nausea and if it had been left to grow I would have been unable to walk or worse. Her final reply, you are the only person who ever mentioned a tumour. I was discharged from Physiotherapy after a few more sessions, even though it must have been I obvious that I had no where nearly recovered. There was obviously no thoughts of a recovery period of 24 weeks physiotherapy.
If anyone cares to provide information help or simply comments they would be appreciated. If anyone from the UK can help with obtaining copies of X-Rays, CT Scans and MRI scans or the recording of the operation via the CNS headset I would be obliged. Equally if I can be of help to anyone Please let me know and I will do my best.
The Spinal Cord Tumour Association website, the forum content and Linda Stophel's support and help have been excellent and helped me enormously much more than I can ever say. Thank you all.
Morris (65 ½ years of being wrong but still hanging in there to learn by experience)