Post by abprops on May 13, 2010 6:35:13 GMT -6
Hi Todd
Beta-blockers were suggested and when my GP refused to do anything about my high BP. By do anything I mean meaningful tests and perhaps a referral to a heart specialist we as usual fell out and I contacted the British Heart Foundation and used them to apply pressure. My GP changed his mind and offered medication, which was not my objective. I did not want medication for the sake of medication I wanted to know what was the source of my problems. Just as when GPs insisted I had sciatica which I knew could not be as I had climbed 3,000 ft mountains by day as it became more difficult to be comfortable in bed then impossible to sleep and pain 24 hours a day when I got home. I reasoned it would be impossible to climb one 3,000 ft mountain with sciatica not one every day. But the GPs would simply not believe me and it took some time for me to find out about spinal cord engorgement at night when in bed hence the increased pressure caused by the tumour at night which eventually became 24 hours of pain.
I also argued unsuccessfully for protection for my digestive system when on max does of Ibuprofen in Aug 2008 and when in hospital to have the tumour removed the morning rounds doctors diagnosed ulcers due to the extended period on painkillers, prescribed and gave be 28 days supply of omeprazole. The hospital discharge documentation advised my GP to add omeprasole to my repeat prescriptions but he refused. When I became ill again in June 2009 and my symptoms returned it was the same all over again doctors would not and still do not believe me. I became more and more concerned and was told it was anxiety depression etc but I knew it was my digestive system. The neurosurgeon said he agreed and he would write to my GP advising that he the neurosurgeon agreed with his colleague who had prescribed omeprasole for ulcers 6 months before. My GP was furious and threatened to sue me fro criticising his clinical judgement but he referred me to a Gastroenterologist. The Gastroenterologist was obviously not concerned as his appointment was for 6 months time in March 2010. I wrote to the gastroenterologist saying I was seriously concerned that there would be a crisis if nothing was done soon. He offered an endoscopy emphasising how uncomfortable that would be. But as you will know very little can be as uncomfortable as the pain caused by a tumour compressing the spinal cord. I found out that the endoscopy would not be done for 5 months to give results just prior to the appointment in March so I wrote again pointing out that in my opinion a crisis was imminent. The gastroenterologist referred me back to my GP if I was so unwell. A trainee GP gave me 28 days supply of omeprazole and my GP called me in to tell me I had conned his trainee but there would be no more omeprazole. After four days on omeprazole I was offered the extremely uncomfortable endoscopy and advised that it would now be pointless as having taken omeprazole for 4 days the ulcers would be cured. I decided to go ahead as I was still suffering the omeprazole had helped but not cured my problem. Again before the endoscopy a nurse and then the doctor in charge tried to persuade me it was not worth the discomfort and the horrible bad banana flavoured local anaesthetic but I said I wished to go ahead. Despite all the suggestions that nothing would be found I now have a nice set of photographs showing the damage to my stomach lining and was informed I now had Gastritis. Biopsies were taken as it was probably due to Helibactor but this turned out not to be true. The Gastritis was due to prolonged periods on painkillers which the manufacturers clearly state can attack the digestive system.
But the crisis came a few weeks latter in the form of a suspect heart attack and many specialists were called in to investigate and were confused by my symptoms. In the morning the consultant in charge of the ward woke me from my drugged sleep, introduced the hospital pharmacist and asked what I was doing with the excess Tramodol I was not taking. I had reduced the does to less than half the prescription and they obviously thought I was selling the balance on the black market. The she asked when I has started taking omeprazole and I informed her 13 Nov 2009 it now being 26 Nov. To my surprise she ranted and raved about the thousands of pounds my actions had caused the NHS and all the inconvenience to all the specialist doctors called in at night to investigate. I tried to explain but it was pointless, so I ask the pharmacist if she had access to the computer system my chemist had shown me and she replied yes. So I asked please humour me and check that computer system so they left looking puzzled. They returned to apologise as the computer system showed that I had extended the time between prescriptions for Tramodol and had only had one prescription for omeprasole on 13 Nov 2009 the previous 28 days supply in Feb having been passed directly to me by the hospital. They of course had looked at my hospital; medical; records which do not relate to my GP medical records found that I had been prescribed omeprazole in Feb 2009 and assumed I had stopped taking that drug. So the hospital discharge documentation again prescribed omeprazole. My GP still procrastinated for a week before prescribing the omeprazole. But I was again admitted to hospital on 25 and 26 Dec and following that the omeprazole was increased to two per day.
The omeprazole helps but my gastritis is not by any means cured and problems continue, However my high BP and high Heart rate have to a great extent settled down, Three specialist doctors who were involved in the first hospitalisation investigations advised that though my heart was very strong a series of heart tests should be done as an out patient to trace the worrying underlying threat to my strong heart. They told me nothing would be done unless I pressed for tests. They also prescribed Angina medication, warned that I must carry it at all times and use it at the slightest indication. They also said even more worryingly they said you must call emergency services at the slightest doubt and DO NOT let A&E put you off by saying you have overreacted as that is the cause of many deaths.
The consultant to the elderly informed the gastroenterologist that there was nothing wrong with my heart and he told me. So I wrote asking her to explain, why did she sign the prescription for angina medication and what had happened to the series of tests advised as necessary by the specialist doctors she had been so concerned about being inconvenienced. Her written reply was that having spoken to her colleagues the admitted they were only being thorough. As if being thorough with an elderly man with a suspect heart problem and spinal cord tumours was unusual. But she arranged an exercise stress test to cover my questions. The EST confirmed what we already knew my heart was strong but it is beyond me how doing so helped test for the underlying threat to my strong heart. The doctor in charge of the EST asked what is so important about you we have been overwhelmed with telephone calls demanding an EST for you yet compared with the normal patients we test you are in wonderful condition. Apparently the norm is an outcome of less than 75% but mine was 101%. Hardly surprising when my heart had been said to be strong. But what has been done to check on an underlying threat NOTHING.
In June 2009 I was doing very well and all discomfort and sensations had stopped unless I was very tired at the end of a working day and even then only just above my knee. I was still on painkillers but well below 50 % of the original does and I was looking forward to reducing further and even sk-ing in the winter. My first post op MRI after surgery was said to be OK but within two weeks I started to feel unwell and my symptoms returned. By August/Sept the previous symptoms that had extended to just below my knee went down into my lower leg and then into my foot but I could not convince the doctors or neurosurgeon. Despite my previousl having been proven not to be agerating with the sciatica/tumopur then the digestive system problems they still would not listen to me. I was back to being anxious and depressed as there was nothing wrong. I had been fighting to obtain copies of MRI scans to send to Dr Jallo and when they arrived in Nov 2009 I was shocked to find the block of fluid they now tell me is a psedogeminlocele and is only filling the space left by removal of bone from my spine. When the fluid was still there in the next 6 monthly MRI scan in Dec I was told they were so unconcerned that there would now be no more MRI scans or clinics for 12 months. But at a clinic in Feb 2010 the neurosurgeon said he will think about another in July or August.
They tell me that PT and exercise are the answer for back pain but I have always kept myself fit and exercised. Hence my exercise heart rate monitor, so I exercise as much as I can to maintain muscle condition in my legs, but I cannot walk for more than a mile without feeling the consequences. The same with exercise it is a balance between keeping mobile and muscle condition and doing harm which makes me suffer. So I cannot improve my level of fitness. Yet there are statements in letters saying he complains but when checked the muscle condition in his legs is good. They say exercise but are surprised when I do and my muscle condition is good! I did overdo it and that resulted in severe pain and several weeks on crutches in the morning. There were several episodes of blood in my urine or just blood. The Urologist who re monitoring my prostate did bladder internal by cystoscopy and a CT Urogram. The Urogram proved that my urinary system kidneys etc are ok. But the urologiast noted that the report mentioned that one of the discs in my lumbar spine had disappeared.
This mention made me ask again about the radiologists reports I had been told do not exist when I got the MRI scan but it was obvious as I had been sure it would be that radiologists produced advisory reports. The excuse was that the department who can authorise MRI scan copies have no need to know about radiology reports. So after another question and answer series I recently obtained the radiological reports to go with the MRI scans CT scans etc.
The Urologist said there was no indication of problems with my urinary system including my Kidneys from a CT Urogram looking particularly for such problems. The relevant report by the radiologist confirmed this and drew attention to problems with my lumbar spine. But when I looked at the CT scan from 2008 the radiologist mentioned CYSTS in my KIDNEYs. These are not uncommon it seems though they can lead to serious problems. So how were the same CYSTS not reported in the recent CT Scan looking specifically at my Kidney? I have looked for answers and find that in some situations kidney Cysts can and do burst, such as trauma and this is indicated by blood in the urine. Seems easy to my simple mind Cysts in my Kidneys - Blood in my urine on several occasions amounting to four over a week - then no Cysts in my Kidneys at the next CT scan. Makes me think the Cysts burst and it was caused by me overdoing it when exercising. Not that I was doing so much but just in relative terms. Makes sense to me!!!!!
But then when I look at the other radiological reports I find in 2008 the radiologist referred to a possible need for radionuclide scans. But when in 2009/2010 I asked was the single view of another small tumour with views of black squiggles against whit bone indicating a tumour within the bone the neurosurgeon does not want to discuss any further. RADIONUCLOID SCAN of the bone!!!
The neurosurgeon tells me the block of fluid is no indication of problems and is not compressing my spinal cord. My thoughts are but it clearly shows both sides of my dura compressed against my spinal cord when I am lying still and have been instructed not to breath. In my layman’s opinion I would think my spinal cord would at least be irritated by friction when I sat up, stood, walked bent over, reach out, or simply turned my upper body. And what does the radiologist say - he says there is no "apparent" compression of the spinal cord. But what else can he say but to me "no apparent" is a fair description when I am on my back not moving or even breathing.
Then on the radiologist report on the comparison between the June 2009 and Dec 2009 MRI scans he says there is a POSSIBILITY OF TUMOUR REGROWTH indicated by the 5mm thickening of the block of fluid. That hardly suggests to me that the radiologist agrees with the neurosurgeons there is no change. But the radiologist also indicates that swelling in the area subject to surgery has decreased. I wonder what will be the consequences of another 5mm thickening of the block of fluid over 6 months if there is not a compensating decrease in the pressure exerted by the tissues recovering from surgery now some 18 months ago!
I have even more recently received copies of letters between doctors I had not seen previously and these confirm to me my previous thought that they were playing GOOD COP BAD COP to confuse me. Then there are the references to good muscle condition which seem to lead to conclusions that I am not telling the truth when I say my symptoms have returned. But that suggestion is by the same neurosurgeon who tells me wearing a back brace is not advisable and I would be better doing some exercise. I explain that I do exercises and use equipment to help me maintain muscle condition. It was only a few minutes later he did minimal checks like prick my skin with sharp objects and confirm that what I said about exercising to maintain not improve muscle condition was all I could do.
There are other worrying comments, in 2008 following one blood test I was accused of not telling my GP I was an alcoholic, and despite the fact I never drunk a lot of alcohol and have not done drunk any since early 2009 they still have that thought. The possibility of multiple organ failure was discussed as a possibility but why?? Then I was said to have suspect genes from both my mother and father which is very rare. The scientific type who tested said so saying such a condition is extremely rare and the tests proved him to be correct. The doctors seem to be happy to consider any sort of unlikely cause but still cannot believe me when I say I am having problems, just as they fought against change of diagnosis from sciatica for 4 months in 2008, just as they fought against my claim to have digestive problems caused by the painkillers in 2008 and 2009. Just as they tried to persuade me not to have the endoscopy. Why why why I keep asking. The only conclusion I can see is that NHS policy is to do nothing for back pain and that surgical intervention for back pain is not helpful, costly and hot advisable until there is no choice when it otherwise becomes life threatening. No doubt they reckon that with such rare conditions the 1 in 2.5 million people who suffer is negligible and hardly worthy of consideration. Hence the 13 spinal cord tumour sufferers who have posted their stories on www.spinalcordtumour.org.uk. Those 13 have mostly spent up to 12 years suffering until they were in wheel chairs and decided to seek private consultations and private MRI scans. By the time I attempted to obtain a private MRI scan in the UK the NHS had made it impossible. A private MRI facility with one of the new supper MRI scanners quoted £1975 and I had help with finances lined up but then the managing director said his all singing and dancing supper scanner was not suitable for my condition. I asked him how he had reached that conclusion and he said his scanner could not deal with OCCULT tumours. I understand the term OCCULT when applied to tumours applies to tumours within the bone and MRI scanners even supper scanners of the most recent type cannot see into bone. I asked where he had obtained information about my tumour being OCCULT but all he would say was the only suitable scanners are operated by the NHS. Now I have seen the radiologists report for the first MRI scan in Dec 2008 the recommendation was for a RADIONUCLOID scan, But now 17 months latter there has been no such scan done or even mentioned to me. Of course I accept that the radiologist who made the suggestion may be wrong. But who told the managing director of the company who operate the new supper MRI scanner in London and why did they do so???
The latest radiological report on the Dec 2009 MRI scan recommends that the thickening of the block of fluid and the possibility of regrowth of the Schwannoma/tumour should be monitored by appropriate repeat MRI scans. But the neurosurgeon seemingly rather than interpreting that to mean 3 monthly or even 6 monthly MRI scans as he had up till then would be a factor of my life indefinitely then said there would be no more such MRI scans for at least 12 months. It does not make any sense to me other than to comply with NHS policy of doing nothing unless there is an emergency.
I do not welcome the thought of slowly deteriorating until I am in a wheel chair and only operated on when the tumour or tumours become life threatening. So I have no choice but to seek help and pay for private treatment. I can at least look at the possibility of paying for as much as I can afford. But my fear is just how powerful is the NHS and will anyone be willing to help in such circumstances. I have asked and am awaiting the reply with interest.
So after all that Todd my answer is yes I have considered Beta Blockers but I believe my problems are other than such can resolve and my BP and Heart Rate have to some extent stabilised since I finally managed to persuade the doctors there was indeed a problem due to ulcers or damage to my stomach by prolonged periods on pain killers known to do such damage.
Beta-blockers were suggested and when my GP refused to do anything about my high BP. By do anything I mean meaningful tests and perhaps a referral to a heart specialist we as usual fell out and I contacted the British Heart Foundation and used them to apply pressure. My GP changed his mind and offered medication, which was not my objective. I did not want medication for the sake of medication I wanted to know what was the source of my problems. Just as when GPs insisted I had sciatica which I knew could not be as I had climbed 3,000 ft mountains by day as it became more difficult to be comfortable in bed then impossible to sleep and pain 24 hours a day when I got home. I reasoned it would be impossible to climb one 3,000 ft mountain with sciatica not one every day. But the GPs would simply not believe me and it took some time for me to find out about spinal cord engorgement at night when in bed hence the increased pressure caused by the tumour at night which eventually became 24 hours of pain.
I also argued unsuccessfully for protection for my digestive system when on max does of Ibuprofen in Aug 2008 and when in hospital to have the tumour removed the morning rounds doctors diagnosed ulcers due to the extended period on painkillers, prescribed and gave be 28 days supply of omeprazole. The hospital discharge documentation advised my GP to add omeprasole to my repeat prescriptions but he refused. When I became ill again in June 2009 and my symptoms returned it was the same all over again doctors would not and still do not believe me. I became more and more concerned and was told it was anxiety depression etc but I knew it was my digestive system. The neurosurgeon said he agreed and he would write to my GP advising that he the neurosurgeon agreed with his colleague who had prescribed omeprasole for ulcers 6 months before. My GP was furious and threatened to sue me fro criticising his clinical judgement but he referred me to a Gastroenterologist. The Gastroenterologist was obviously not concerned as his appointment was for 6 months time in March 2010. I wrote to the gastroenterologist saying I was seriously concerned that there would be a crisis if nothing was done soon. He offered an endoscopy emphasising how uncomfortable that would be. But as you will know very little can be as uncomfortable as the pain caused by a tumour compressing the spinal cord. I found out that the endoscopy would not be done for 5 months to give results just prior to the appointment in March so I wrote again pointing out that in my opinion a crisis was imminent. The gastroenterologist referred me back to my GP if I was so unwell. A trainee GP gave me 28 days supply of omeprazole and my GP called me in to tell me I had conned his trainee but there would be no more omeprazole. After four days on omeprazole I was offered the extremely uncomfortable endoscopy and advised that it would now be pointless as having taken omeprazole for 4 days the ulcers would be cured. I decided to go ahead as I was still suffering the omeprazole had helped but not cured my problem. Again before the endoscopy a nurse and then the doctor in charge tried to persuade me it was not worth the discomfort and the horrible bad banana flavoured local anaesthetic but I said I wished to go ahead. Despite all the suggestions that nothing would be found I now have a nice set of photographs showing the damage to my stomach lining and was informed I now had Gastritis. Biopsies were taken as it was probably due to Helibactor but this turned out not to be true. The Gastritis was due to prolonged periods on painkillers which the manufacturers clearly state can attack the digestive system.
But the crisis came a few weeks latter in the form of a suspect heart attack and many specialists were called in to investigate and were confused by my symptoms. In the morning the consultant in charge of the ward woke me from my drugged sleep, introduced the hospital pharmacist and asked what I was doing with the excess Tramodol I was not taking. I had reduced the does to less than half the prescription and they obviously thought I was selling the balance on the black market. The she asked when I has started taking omeprazole and I informed her 13 Nov 2009 it now being 26 Nov. To my surprise she ranted and raved about the thousands of pounds my actions had caused the NHS and all the inconvenience to all the specialist doctors called in at night to investigate. I tried to explain but it was pointless, so I ask the pharmacist if she had access to the computer system my chemist had shown me and she replied yes. So I asked please humour me and check that computer system so they left looking puzzled. They returned to apologise as the computer system showed that I had extended the time between prescriptions for Tramodol and had only had one prescription for omeprasole on 13 Nov 2009 the previous 28 days supply in Feb having been passed directly to me by the hospital. They of course had looked at my hospital; medical; records which do not relate to my GP medical records found that I had been prescribed omeprazole in Feb 2009 and assumed I had stopped taking that drug. So the hospital discharge documentation again prescribed omeprazole. My GP still procrastinated for a week before prescribing the omeprazole. But I was again admitted to hospital on 25 and 26 Dec and following that the omeprazole was increased to two per day.
The omeprazole helps but my gastritis is not by any means cured and problems continue, However my high BP and high Heart rate have to a great extent settled down, Three specialist doctors who were involved in the first hospitalisation investigations advised that though my heart was very strong a series of heart tests should be done as an out patient to trace the worrying underlying threat to my strong heart. They told me nothing would be done unless I pressed for tests. They also prescribed Angina medication, warned that I must carry it at all times and use it at the slightest indication. They also said even more worryingly they said you must call emergency services at the slightest doubt and DO NOT let A&E put you off by saying you have overreacted as that is the cause of many deaths.
The consultant to the elderly informed the gastroenterologist that there was nothing wrong with my heart and he told me. So I wrote asking her to explain, why did she sign the prescription for angina medication and what had happened to the series of tests advised as necessary by the specialist doctors she had been so concerned about being inconvenienced. Her written reply was that having spoken to her colleagues the admitted they were only being thorough. As if being thorough with an elderly man with a suspect heart problem and spinal cord tumours was unusual. But she arranged an exercise stress test to cover my questions. The EST confirmed what we already knew my heart was strong but it is beyond me how doing so helped test for the underlying threat to my strong heart. The doctor in charge of the EST asked what is so important about you we have been overwhelmed with telephone calls demanding an EST for you yet compared with the normal patients we test you are in wonderful condition. Apparently the norm is an outcome of less than 75% but mine was 101%. Hardly surprising when my heart had been said to be strong. But what has been done to check on an underlying threat NOTHING.
In June 2009 I was doing very well and all discomfort and sensations had stopped unless I was very tired at the end of a working day and even then only just above my knee. I was still on painkillers but well below 50 % of the original does and I was looking forward to reducing further and even sk-ing in the winter. My first post op MRI after surgery was said to be OK but within two weeks I started to feel unwell and my symptoms returned. By August/Sept the previous symptoms that had extended to just below my knee went down into my lower leg and then into my foot but I could not convince the doctors or neurosurgeon. Despite my previousl having been proven not to be agerating with the sciatica/tumopur then the digestive system problems they still would not listen to me. I was back to being anxious and depressed as there was nothing wrong. I had been fighting to obtain copies of MRI scans to send to Dr Jallo and when they arrived in Nov 2009 I was shocked to find the block of fluid they now tell me is a psedogeminlocele and is only filling the space left by removal of bone from my spine. When the fluid was still there in the next 6 monthly MRI scan in Dec I was told they were so unconcerned that there would now be no more MRI scans or clinics for 12 months. But at a clinic in Feb 2010 the neurosurgeon said he will think about another in July or August.
They tell me that PT and exercise are the answer for back pain but I have always kept myself fit and exercised. Hence my exercise heart rate monitor, so I exercise as much as I can to maintain muscle condition in my legs, but I cannot walk for more than a mile without feeling the consequences. The same with exercise it is a balance between keeping mobile and muscle condition and doing harm which makes me suffer. So I cannot improve my level of fitness. Yet there are statements in letters saying he complains but when checked the muscle condition in his legs is good. They say exercise but are surprised when I do and my muscle condition is good! I did overdo it and that resulted in severe pain and several weeks on crutches in the morning. There were several episodes of blood in my urine or just blood. The Urologist who re monitoring my prostate did bladder internal by cystoscopy and a CT Urogram. The Urogram proved that my urinary system kidneys etc are ok. But the urologiast noted that the report mentioned that one of the discs in my lumbar spine had disappeared.
This mention made me ask again about the radiologists reports I had been told do not exist when I got the MRI scan but it was obvious as I had been sure it would be that radiologists produced advisory reports. The excuse was that the department who can authorise MRI scan copies have no need to know about radiology reports. So after another question and answer series I recently obtained the radiological reports to go with the MRI scans CT scans etc.
The Urologist said there was no indication of problems with my urinary system including my Kidneys from a CT Urogram looking particularly for such problems. The relevant report by the radiologist confirmed this and drew attention to problems with my lumbar spine. But when I looked at the CT scan from 2008 the radiologist mentioned CYSTS in my KIDNEYs. These are not uncommon it seems though they can lead to serious problems. So how were the same CYSTS not reported in the recent CT Scan looking specifically at my Kidney? I have looked for answers and find that in some situations kidney Cysts can and do burst, such as trauma and this is indicated by blood in the urine. Seems easy to my simple mind Cysts in my Kidneys - Blood in my urine on several occasions amounting to four over a week - then no Cysts in my Kidneys at the next CT scan. Makes me think the Cysts burst and it was caused by me overdoing it when exercising. Not that I was doing so much but just in relative terms. Makes sense to me!!!!!
But then when I look at the other radiological reports I find in 2008 the radiologist referred to a possible need for radionuclide scans. But when in 2009/2010 I asked was the single view of another small tumour with views of black squiggles against whit bone indicating a tumour within the bone the neurosurgeon does not want to discuss any further. RADIONUCLOID SCAN of the bone!!!
The neurosurgeon tells me the block of fluid is no indication of problems and is not compressing my spinal cord. My thoughts are but it clearly shows both sides of my dura compressed against my spinal cord when I am lying still and have been instructed not to breath. In my layman’s opinion I would think my spinal cord would at least be irritated by friction when I sat up, stood, walked bent over, reach out, or simply turned my upper body. And what does the radiologist say - he says there is no "apparent" compression of the spinal cord. But what else can he say but to me "no apparent" is a fair description when I am on my back not moving or even breathing.
Then on the radiologist report on the comparison between the June 2009 and Dec 2009 MRI scans he says there is a POSSIBILITY OF TUMOUR REGROWTH indicated by the 5mm thickening of the block of fluid. That hardly suggests to me that the radiologist agrees with the neurosurgeons there is no change. But the radiologist also indicates that swelling in the area subject to surgery has decreased. I wonder what will be the consequences of another 5mm thickening of the block of fluid over 6 months if there is not a compensating decrease in the pressure exerted by the tissues recovering from surgery now some 18 months ago!
I have even more recently received copies of letters between doctors I had not seen previously and these confirm to me my previous thought that they were playing GOOD COP BAD COP to confuse me. Then there are the references to good muscle condition which seem to lead to conclusions that I am not telling the truth when I say my symptoms have returned. But that suggestion is by the same neurosurgeon who tells me wearing a back brace is not advisable and I would be better doing some exercise. I explain that I do exercises and use equipment to help me maintain muscle condition. It was only a few minutes later he did minimal checks like prick my skin with sharp objects and confirm that what I said about exercising to maintain not improve muscle condition was all I could do.
There are other worrying comments, in 2008 following one blood test I was accused of not telling my GP I was an alcoholic, and despite the fact I never drunk a lot of alcohol and have not done drunk any since early 2009 they still have that thought. The possibility of multiple organ failure was discussed as a possibility but why?? Then I was said to have suspect genes from both my mother and father which is very rare. The scientific type who tested said so saying such a condition is extremely rare and the tests proved him to be correct. The doctors seem to be happy to consider any sort of unlikely cause but still cannot believe me when I say I am having problems, just as they fought against change of diagnosis from sciatica for 4 months in 2008, just as they fought against my claim to have digestive problems caused by the painkillers in 2008 and 2009. Just as they tried to persuade me not to have the endoscopy. Why why why I keep asking. The only conclusion I can see is that NHS policy is to do nothing for back pain and that surgical intervention for back pain is not helpful, costly and hot advisable until there is no choice when it otherwise becomes life threatening. No doubt they reckon that with such rare conditions the 1 in 2.5 million people who suffer is negligible and hardly worthy of consideration. Hence the 13 spinal cord tumour sufferers who have posted their stories on www.spinalcordtumour.org.uk. Those 13 have mostly spent up to 12 years suffering until they were in wheel chairs and decided to seek private consultations and private MRI scans. By the time I attempted to obtain a private MRI scan in the UK the NHS had made it impossible. A private MRI facility with one of the new supper MRI scanners quoted £1975 and I had help with finances lined up but then the managing director said his all singing and dancing supper scanner was not suitable for my condition. I asked him how he had reached that conclusion and he said his scanner could not deal with OCCULT tumours. I understand the term OCCULT when applied to tumours applies to tumours within the bone and MRI scanners even supper scanners of the most recent type cannot see into bone. I asked where he had obtained information about my tumour being OCCULT but all he would say was the only suitable scanners are operated by the NHS. Now I have seen the radiologists report for the first MRI scan in Dec 2008 the recommendation was for a RADIONUCLOID scan, But now 17 months latter there has been no such scan done or even mentioned to me. Of course I accept that the radiologist who made the suggestion may be wrong. But who told the managing director of the company who operate the new supper MRI scanner in London and why did they do so???
The latest radiological report on the Dec 2009 MRI scan recommends that the thickening of the block of fluid and the possibility of regrowth of the Schwannoma/tumour should be monitored by appropriate repeat MRI scans. But the neurosurgeon seemingly rather than interpreting that to mean 3 monthly or even 6 monthly MRI scans as he had up till then would be a factor of my life indefinitely then said there would be no more such MRI scans for at least 12 months. It does not make any sense to me other than to comply with NHS policy of doing nothing unless there is an emergency.
I do not welcome the thought of slowly deteriorating until I am in a wheel chair and only operated on when the tumour or tumours become life threatening. So I have no choice but to seek help and pay for private treatment. I can at least look at the possibility of paying for as much as I can afford. But my fear is just how powerful is the NHS and will anyone be willing to help in such circumstances. I have asked and am awaiting the reply with interest.
So after all that Todd my answer is yes I have considered Beta Blockers but I believe my problems are other than such can resolve and my BP and Heart Rate have to some extent stabilised since I finally managed to persuade the doctors there was indeed a problem due to ulcers or damage to my stomach by prolonged periods on pain killers known to do such damage.
I had major migraine headaches after surgery for about a month - we thought it was due to getting off my steroids and a lot of stress and anxiety due to poor sleep. 4 months post surgery i have no more headaches and still have more than i should if coffee (i make it strong too). I have not tried to give it up but if i would get back some balance/equilibrium i may just try it. (But then withdrawl headaches could come) Which is worse?
Bottom line - I have heard nothing from Dr's to get off caffeine. Just from nutritionist outside of SCT all together.
Never saw any connection between pain and coffee, but talking about natural pain killers I know nothing better than cannabidiol.