Post by abprops on Dec 27, 2010 14:29:55 GMT -6
Hi All
I decided to have a break from the forum as I think I was annoying people. Just thought I would give an update.
My problems continue with a recommendation by the Royal Institute for the Deaf that I have a private Audiologist check my hearing in case problems were developing and the NHS would not allow an MRI of my head. The advise was see your GP immediately and have the NHS investigate serious problems within your inner left ear. That was in July. Since then I have had two emergency admissions to hospital due to facial droops (left side as all my other neurological problems) giving concern that I had had cerebral events (strokes).
During the first admission a CT scan found no problem with my brain. But at long last the NHS agreed to MRI my Brain and my Spine. The neurosurgeon wrote confirming that there was no 'evidence' of schwannomas' on nerves to ears, eyes or facial muscles but signs of fluid within my left Mastoid bone. An ENT specialist looked into my ears said the left eardrum had collapsed but be did not recommend surgery though some of his peers might. Another audiology test had conformed that a hearing aid was advisable and I will be fitted with one on 25 January 2011. There is no doubt that my hearing is becoming a problem. The doctors who dealt with the two emergency admissions admitted they were confused by my symptoms and could only wait and see.
The neurosurgeon also advised that the pseudogemingocele which replaced the schwannoma he removed form my thoracic spine was not doing any harm. He said that all other patient he had removed schwannomas from had had pseudogemingocles which had not given any problems. But when I first met him following the MRI scan which found the schwannma he admitted to being excited by the opportunity to remove a schwannoma in such an early stage of it's development as the two he had previously removed had been for patients who had been in wheelchairs for some time and remained so following the emergency removal of their schwannomas. He agrees that the pseudogemingolcele is crushing both sides of my Dura against my already damaged spinal cord but does not accept that their is any compression of my spinal card. Specialist radiologist report that there is on 'evidence' of compression of my spinal cord but that is of course with me on my back completely still and barely breathing. The other patients in wheelchairs are not as mobile as I am nor will they be as active. It seems obvious to me that when I stand erect, walk about, bend, twist, turn, lift and reach that my spinal cord will at least be irritated if not indeed compressed by the pseudogemingocele.
Some months ago following severe pains I found it necessary to wear a back brace or use crutches but when I met with the neurosurgeon he said rather than a back brace I needed physiotherapy. So I took that advice and employed the services of a chartered phisio who devised a series of exercises to develop my muscles. Those exercises undoubtedly helped and as the muscles in my back surrounding the site of the operation healed I became fitter and stronger. But then the two cerebral events occurred and the sports physiotherapist advised I should discontinue the exercise regime until given the all clear. He had recommended massage treatment and I had one a few weeks before the first cerebral event and the second was due a few days after but was canceled. He was concerned that massage would perhaps encourage the spinal cord leakage that formed the pseudogemingocle. Any information I have found indicates that pseudogemingoceles are formed by spinal cord leakage but the neurosurgeon will not agree. But I do feel fluid in the muscles in my back buttocks thigh and calf muscles at regular intervals particularly when problems occur. We are having problems with snow and ice and in keeping my balance I am convinced that the pseudogemingocele was affected and the most recent passing of blood in my urine occurred that night. I had a similar experience back in March 2010 following exercise.
My body continues to recover particularly the muscles in mu upper body and upper chest and back. The additional strength has improved my shooting skills and treatment for my high BP and Heart rate following the two suspect cerebral events has also helped. But in my opinion as I get fitter and improve the muscles in my upper body the pseudogemingocele is put under increasng pressure as my back muscles become more powerful putting my spinal cord under increasing compressive forces.
I have never seen a neurologist and mentioned this to the consultant who dealt with the two cerebral events. That consultant instructed one of the senior doctors in his entourage to carry out neurological tests. He did the standard reflex tests and push pull tests on all of my limbs. He then pricked the skin on my legs, feet and toes with sharp objects. The consultant said I should be comforted as the tests were all successful. These are the only neurological tests I had before or since the original MRI scan. However the planned area of my body to be covered in the original MRI scan in late 2008 was from mid abdomen to mid thigh only as my symptoms had indicated a possible problem in my Lumbar spine. The Schwannoma in my Thoracic spine was only found as I persuaded the nurse n charge to start the MRI scan some 6" higher up my spine than planned and the image shows that schwannoma at the extreme top f the image. Had the MRI scan been limited to my lumbar spine as planned the neurosurgeon admitted he would not have bothered to see me as though those neurological tests were said to point to my lumbar spine nothing was at that time found.
When the consultant said I should be comforted as the neurological tests his colleague had completed were OK I asked him what the pricking of my skin with sharp objects achieved. He replied with confidence that those tests proved that my spinal cord was intact and signals were fro example traveling successfully between my big toe and my brain. I asked politely was I not correct in understanding that my spinal cord was made up of thousands of pairs of nerves which connected my brain to every muscle and organ in my body and as the skin on my big toe was only one of those organs. Hence checking the skin on my toes, feet and legs with sharp objects did nothing to confirm or check that the pairs of nerves against which the pseudogemingocle was pressing were OK or damaged and continuing to be damaged. Just as in 2008 before the schwannoma in my thoracic spine was found such tests proved nothing other than the obvious and certainly did not prove that my spinal cord was not being damaged. The entourage of doctors who had made noises of agreement when the consultant informed me that all was well with my spinal cord as proven by pricking my spin were very quiet and embarrassed and the consultant blushed before saying yes I will make a referral to a neurologist. He added a reference to the need for neurological tests to the discharge document. But even though the consultant neurosurgeon also reluctantly agreed to such a referral nothing has yet happened.
I have been pointed to fairly recent research which has proven that the assumption that pseudogemingoceles in the thoracic spine are not so problematic as those in the lumbar and cerebral spine and can and do result in compression of the spinal cord even years after surgery. But I cannot convince the neurosurgeon who is as always in complete denial. Even though between Feb 2009 and late June 2009 my recovery following removal of the schwannoma was excellent. He has however agreed to recommend a referral to a neurologist and to the UK International Centre of Excellence for Brain and Spinal Cord CNS problems in Liverpool England. However as I live in Scotland that means a referral from our local health authority to the Scottish health authority and then to England etc and means transfer of funds between authorities.
I did hope the Professor Jallo could help but he advised that I should seek a second opinion within the NHS. I asked a neurosurgeon ho trained with Professor Jallo and is now working in Switzerland but he would not provide any indication of cot nor did he encourage me to do other than seek a second opinion within the UK NHS. I have been advised that the potential for problems would lead to legal problems unless any surgery was done by surgeons employed by the NHS. Catch 22 if I cannot move the NHS I am unlikely to be able to convince any none NHS surgeon to undertake exploratory operations.
Even with the evidence of fluid on my mastoid bone there were delays in a referral to a hearing specialist. Only when two courses of anti biotics to deal with infection in my sinuses, head and chest was the hearing test brought forward. But apart from looking inside my ears and up my nose there were no form of tests done. But a few days latter I again passed quantities of blood with my urine and though an out of hours GP said there was no likelihood of infection a test proved otherwise and she gave me a fourth course of anti biotics. That course finished yesterday but I still have a cough so it will be interesting to see what happens now! As the out of hours GP advised that I should see a GP in the medical centre following the weekend I did and was again was informed that as I had taken to days of the anti biotics a urine test should be clear. However the urine test again proved positive for infection and a sample was sent to the lab for analysis and the results will be available following the holidays.
So I am some 30 months older since the problem first became apparent and continue to deteriorate despite my effort with Physiotherapy etc. A small schwannoma was found in my lumbar spine in March 2009 due to my constantly asking why was the original MRI scan limited to my lumbar spine. That tumour was confirmed in Sept 2009 but said not to be capable of producing any symptoms for some 5 years. The neurosurgeon informed me that there was no point in doing more frequent or full body MRI scans as my symptoms did not justify a full body MRI scan as to progress from suspect schwann cells to a visible schwannoma even smaller than the one in my lumbar spine would take at least 12 months. So it would seem that I will have to wait and see if the left side of my face droops any further and then what, if a schwannoma or schwannomas are found on the nerves to ears, eyes and facial bones.
Not just complaining, as there is no point but it would be OK if I could just get on with my life and forget about the tumours but as I rarely feel well to say the least that is simply impossible. But I keep trying and am convinced that doing something to end the spinal cord fluid leakage and deal with the pseudogemingocle is the answer. Following the operation to remove the schwannoma my recovery was excellent and continued for some 5 months before my pre operation symptoms returned slowly. Perhaps I need a do it myself kit.
I have found a Pysio who specialises in massage and manipulation. She agreed that my body and muscles are very tense and misaligned. I had the first session last week and she manipulated trigger points with extremely violent results the worst she has seen. The effects were very beneficial though extremely tiring. So I am looking forward to the second session on 04 Jan 2010 as there have been some definite improvements.
Yet another of my long chapters to my continuing story or should that be decline. Any advice would be appreciated.
Seasons greetings
Morris
I decided to have a break from the forum as I think I was annoying people. Just thought I would give an update.
My problems continue with a recommendation by the Royal Institute for the Deaf that I have a private Audiologist check my hearing in case problems were developing and the NHS would not allow an MRI of my head. The advise was see your GP immediately and have the NHS investigate serious problems within your inner left ear. That was in July. Since then I have had two emergency admissions to hospital due to facial droops (left side as all my other neurological problems) giving concern that I had had cerebral events (strokes).
During the first admission a CT scan found no problem with my brain. But at long last the NHS agreed to MRI my Brain and my Spine. The neurosurgeon wrote confirming that there was no 'evidence' of schwannomas' on nerves to ears, eyes or facial muscles but signs of fluid within my left Mastoid bone. An ENT specialist looked into my ears said the left eardrum had collapsed but be did not recommend surgery though some of his peers might. Another audiology test had conformed that a hearing aid was advisable and I will be fitted with one on 25 January 2011. There is no doubt that my hearing is becoming a problem. The doctors who dealt with the two emergency admissions admitted they were confused by my symptoms and could only wait and see.
The neurosurgeon also advised that the pseudogemingocele which replaced the schwannoma he removed form my thoracic spine was not doing any harm. He said that all other patient he had removed schwannomas from had had pseudogemingocles which had not given any problems. But when I first met him following the MRI scan which found the schwannma he admitted to being excited by the opportunity to remove a schwannoma in such an early stage of it's development as the two he had previously removed had been for patients who had been in wheelchairs for some time and remained so following the emergency removal of their schwannomas. He agrees that the pseudogemingolcele is crushing both sides of my Dura against my already damaged spinal cord but does not accept that their is any compression of my spinal card. Specialist radiologist report that there is on 'evidence' of compression of my spinal cord but that is of course with me on my back completely still and barely breathing. The other patients in wheelchairs are not as mobile as I am nor will they be as active. It seems obvious to me that when I stand erect, walk about, bend, twist, turn, lift and reach that my spinal cord will at least be irritated if not indeed compressed by the pseudogemingocele.
Some months ago following severe pains I found it necessary to wear a back brace or use crutches but when I met with the neurosurgeon he said rather than a back brace I needed physiotherapy. So I took that advice and employed the services of a chartered phisio who devised a series of exercises to develop my muscles. Those exercises undoubtedly helped and as the muscles in my back surrounding the site of the operation healed I became fitter and stronger. But then the two cerebral events occurred and the sports physiotherapist advised I should discontinue the exercise regime until given the all clear. He had recommended massage treatment and I had one a few weeks before the first cerebral event and the second was due a few days after but was canceled. He was concerned that massage would perhaps encourage the spinal cord leakage that formed the pseudogemingocle. Any information I have found indicates that pseudogemingoceles are formed by spinal cord leakage but the neurosurgeon will not agree. But I do feel fluid in the muscles in my back buttocks thigh and calf muscles at regular intervals particularly when problems occur. We are having problems with snow and ice and in keeping my balance I am convinced that the pseudogemingocele was affected and the most recent passing of blood in my urine occurred that night. I had a similar experience back in March 2010 following exercise.
My body continues to recover particularly the muscles in mu upper body and upper chest and back. The additional strength has improved my shooting skills and treatment for my high BP and Heart rate following the two suspect cerebral events has also helped. But in my opinion as I get fitter and improve the muscles in my upper body the pseudogemingocele is put under increasng pressure as my back muscles become more powerful putting my spinal cord under increasing compressive forces.
I have never seen a neurologist and mentioned this to the consultant who dealt with the two cerebral events. That consultant instructed one of the senior doctors in his entourage to carry out neurological tests. He did the standard reflex tests and push pull tests on all of my limbs. He then pricked the skin on my legs, feet and toes with sharp objects. The consultant said I should be comforted as the tests were all successful. These are the only neurological tests I had before or since the original MRI scan. However the planned area of my body to be covered in the original MRI scan in late 2008 was from mid abdomen to mid thigh only as my symptoms had indicated a possible problem in my Lumbar spine. The Schwannoma in my Thoracic spine was only found as I persuaded the nurse n charge to start the MRI scan some 6" higher up my spine than planned and the image shows that schwannoma at the extreme top f the image. Had the MRI scan been limited to my lumbar spine as planned the neurosurgeon admitted he would not have bothered to see me as though those neurological tests were said to point to my lumbar spine nothing was at that time found.
When the consultant said I should be comforted as the neurological tests his colleague had completed were OK I asked him what the pricking of my skin with sharp objects achieved. He replied with confidence that those tests proved that my spinal cord was intact and signals were fro example traveling successfully between my big toe and my brain. I asked politely was I not correct in understanding that my spinal cord was made up of thousands of pairs of nerves which connected my brain to every muscle and organ in my body and as the skin on my big toe was only one of those organs. Hence checking the skin on my toes, feet and legs with sharp objects did nothing to confirm or check that the pairs of nerves against which the pseudogemingocle was pressing were OK or damaged and continuing to be damaged. Just as in 2008 before the schwannoma in my thoracic spine was found such tests proved nothing other than the obvious and certainly did not prove that my spinal cord was not being damaged. The entourage of doctors who had made noises of agreement when the consultant informed me that all was well with my spinal cord as proven by pricking my spin were very quiet and embarrassed and the consultant blushed before saying yes I will make a referral to a neurologist. He added a reference to the need for neurological tests to the discharge document. But even though the consultant neurosurgeon also reluctantly agreed to such a referral nothing has yet happened.
I have been pointed to fairly recent research which has proven that the assumption that pseudogemingoceles in the thoracic spine are not so problematic as those in the lumbar and cerebral spine and can and do result in compression of the spinal cord even years after surgery. But I cannot convince the neurosurgeon who is as always in complete denial. Even though between Feb 2009 and late June 2009 my recovery following removal of the schwannoma was excellent. He has however agreed to recommend a referral to a neurologist and to the UK International Centre of Excellence for Brain and Spinal Cord CNS problems in Liverpool England. However as I live in Scotland that means a referral from our local health authority to the Scottish health authority and then to England etc and means transfer of funds between authorities.
I did hope the Professor Jallo could help but he advised that I should seek a second opinion within the NHS. I asked a neurosurgeon ho trained with Professor Jallo and is now working in Switzerland but he would not provide any indication of cot nor did he encourage me to do other than seek a second opinion within the UK NHS. I have been advised that the potential for problems would lead to legal problems unless any surgery was done by surgeons employed by the NHS. Catch 22 if I cannot move the NHS I am unlikely to be able to convince any none NHS surgeon to undertake exploratory operations.
Even with the evidence of fluid on my mastoid bone there were delays in a referral to a hearing specialist. Only when two courses of anti biotics to deal with infection in my sinuses, head and chest was the hearing test brought forward. But apart from looking inside my ears and up my nose there were no form of tests done. But a few days latter I again passed quantities of blood with my urine and though an out of hours GP said there was no likelihood of infection a test proved otherwise and she gave me a fourth course of anti biotics. That course finished yesterday but I still have a cough so it will be interesting to see what happens now! As the out of hours GP advised that I should see a GP in the medical centre following the weekend I did and was again was informed that as I had taken to days of the anti biotics a urine test should be clear. However the urine test again proved positive for infection and a sample was sent to the lab for analysis and the results will be available following the holidays.
So I am some 30 months older since the problem first became apparent and continue to deteriorate despite my effort with Physiotherapy etc. A small schwannoma was found in my lumbar spine in March 2009 due to my constantly asking why was the original MRI scan limited to my lumbar spine. That tumour was confirmed in Sept 2009 but said not to be capable of producing any symptoms for some 5 years. The neurosurgeon informed me that there was no point in doing more frequent or full body MRI scans as my symptoms did not justify a full body MRI scan as to progress from suspect schwann cells to a visible schwannoma even smaller than the one in my lumbar spine would take at least 12 months. So it would seem that I will have to wait and see if the left side of my face droops any further and then what, if a schwannoma or schwannomas are found on the nerves to ears, eyes and facial bones.
Not just complaining, as there is no point but it would be OK if I could just get on with my life and forget about the tumours but as I rarely feel well to say the least that is simply impossible. But I keep trying and am convinced that doing something to end the spinal cord fluid leakage and deal with the pseudogemingocle is the answer. Following the operation to remove the schwannoma my recovery was excellent and continued for some 5 months before my pre operation symptoms returned slowly. Perhaps I need a do it myself kit.
I have found a Pysio who specialises in massage and manipulation. She agreed that my body and muscles are very tense and misaligned. I had the first session last week and she manipulated trigger points with extremely violent results the worst she has seen. The effects were very beneficial though extremely tiring. So I am looking forward to the second session on 04 Jan 2010 as there have been some definite improvements.
Yet another of my long chapters to my continuing story or should that be decline. Any advice would be appreciated.
Seasons greetings
Morris