Hi
My pseudomeningocel covered the combined length of the T9 & T10 vertebrae. It was deep within my back and filing the cavity or space the neurosurgeon had created by removal off the rear section of the two vertebrae to access my spinal canal during the laminectomy. The pseudomeningocel was compressing both sides of my dura against the damaged nerves in and attached to my spinal cord. The radiologists report on the first and then every 6 months monitoring MRI scans from 4 June 2009 to May 2011 recorded the presence of a pseudomeningocele in the Epidural space but no EVIDENCE of compression of the spinal cord by the pseudomeningocele.
Following removal of the intradural schwannoma tumour on 3 February 2009, after a problematic struggle to convince GPs and hospital doctors it was NOT Sciatica my recover was excellent and I returned to work full time in April 2009.
The first monitoring MRI scan was done on 4 June 2009 and on 12 June the neurosurgeon wrote informing me the MRI scan showed no problems. We were delighted and decided to arrange a ski-ing holiday over the christmas holiday period to celebrate. But by the end of June 2009 additional CNS symptoms started to appear. So as I had been instructed I immediately contacted the neurosurgeon via his secretary but there was NO response. However my additional symptoms spread down below my left knee for the FIRST time and then on into my foot and toes. But there was still no response. The secretary advised that the neurosurgeon was too busy but was obviously not concerned and neither should I. And as the he would see me at the next clinic in August I should relax.
However I did not see the neurosurgeon in August. I saw his 'new' registrar who informed me I was being discharged there would be no more MRI scans or clinics. But that changed when I refused to go and a few days latter the letter of appointment for the next clinic arrived. And the next MRI scan was done on 8 December.
When I had problems convincing GPs and hospital doctors that my problem could not be sciatica or lower back pain for which the PCT and NHS did not allow any form of imaging. I contacted the American Spinal Cord Tumor Association who passed me to their advisor Prof. Jallo MD, Clinical Director of Neurosurgery for John Hopkins Hospital Baltimore who advised a full body MRI scan should be done to check for intradural schwannoma tumours and schwannoma tumours in other parts of my body. So in September 2009, I again asked Prof. Jallo MD for advice. He advised I should obtain copies of the 4 June monitoring MRI scan as without any doubt those images would show why my additional symptoms had occurred.
It took until November 2009 to persuade NHS Tayside to release those images to me and when I opened them I found what I later learned was the pseudomeingocel. I sent an e-mail asking why the neurosurgeon had not mentioned that very large cyst clearly compressing both sides of my dura against the permanently damaged nerves in my spinal cord. But I was not provided with copies of the associated radiologists reports and was informed they did not exist.
This time the neurosurgeon responded. He informed me the 'fluid' was normal clinical finding following a laminectomy and opening of the dura for further surgery. As such there was no need for him to mention that cyst to me as it would cause NO symptoms. And similar MRI appearances had occurred on MRI images for all previous patients for whom he had removed spinal schwannomas over the years.
When I sent copies of the MRI imaging Prof. Jallo MD confirmed the images showed a pseudomeningolcele that had formed due to a leakage of cerebrospinal fluid from my dura, most definitely not a normal clinical finding.
I contacted my MSP for help. The MSP sent me a copy of the response form the CEO of NHS Tayside who repeated the statements made by the neurosurgeon in his e-mail in November and informed the MSP the neurosurgeon had 'investigated' my complaint and two Monitoring MRI scans had been done on 4 June and 8 December 2009. But there was no mention of the radiologists reports on those MRI scans! In 2012 I obtained a copy of the neurosurgeons 'investigation' with help form the Data Commissioner. The report was a letter from the neurosurgeon to NHS Tayside Complaints informing then, just as he had in his e-mail in November 2009. The neurosurgeons 'investigations' were dated 10 February 2010 and the CEO's letter to the MSP, 23 February 2010.
I had two emergency admissions a s suspect heart attack in November and December 2009. Caused by chemical damage to my digestive system by prolonged periods on Diclofenac and Tramodol. The Diclofenac was replaced by Paracetamol maximum dose.
In 2010 a GP had me admitted as an emergency suspect stroke and a month later an out of hours GP also had me admitted as a suspect stroke. But despite CT and MRI scans of my head and brain no explanation was found for the suspect strokes. I asked could it be due to the pseudomeningocele and the continuing leakage of cerebra spinal fluid. But the neurosurgeon denied that possibility and yet again nothing was done.
I had by then been put in contact with a specialist spinal neurosurgeon in Lucern and Prof. Dr. Westphal, Clinical Director of Neurosurgery for the University Hospital Epiddorf Hamburg Germany. The advice from out with the UK was that international medical literature concluded that the definitive treatment for the even rarer pseudomeningoceles and still rarer symptomatic pseudomeningocels was Investigative and corrective surgery. Otherwise the patient would suffer further neurological damage over the long term. SUCH as my two suspect strokes or possible tethering of the spinal cord to the pseudomeningocele etc.
I was advised to obtain a referral to an NHS Tayside Neurologist and the a referral to the Walton Centre Specialist Neurological NHS Trust in Liverpool but just as with every other request that was simply ignored by GPs and the Neurosurgeon who suggested I ask the other. I was also advised to IF POSSIBLE obtain written confirmation that the UK NHS would not allow investigative surgery to prove that the defect in my dura had remained open and then close that defect. The advice being if I accepted offers of investigative and corrective surgery without obtaining the second opinion and written confirmation, the UK NHS would cal aim they had not been given the opportunity to investigate my symptoms.
I was also advised to ask the cancer registry how many primary schwannoma tumours had been operated on in Scotland. The answer was 48 between 2000 and 2010 one of which was my tumour. The point being made with such rare tumours NO neurosurgeon in Scotland could possibly spend 50% of his time on such rare operations as NICE suggested was necessary. That being the reason countries such as New Zealand, Australia and Canada for example sent patients to one of four specialist centres such as John Hopkins in Baltimore. As with a population of some 700 million and patients fro other countries specialist neurosurgeons in the USA had the necessary experience and expertise. And Europe also had four such specialist spinal Centres to cater for the 700 million or so in Europe and surrounding countries. But the UK NHS allowed any neurosurgeon to operate on such rare tumours. Scotland for example having four neurological surgical units.
In 2010, I resorted to putting my request for a referral to a neurologist and the Walton Centre in writing to the GP who was dealing with my case. What I did not know until 2012 was that GP had sent a copy of my request to the neurosurgeon informing him he did not know what to do about me. The GP also sent a copy of my letter to a consultant psychiatrist asking if he wished to assess my mental health based on the content of my letter. The psychiatrist refused and advised the GP that my request for a referral to the Walton Centre should land on the desk of the highest authority in the organisation to protect the organisation from the legal and medical consequences of not doing so.
So the neurosurgeon at last made the two referrals in 2010. However in 2012, I found that he had made the referral not to the Walton Centre but to the Consultant Neurosurgeon he had informed me earlier was a friend. There was no mention of the pseudomeningocel in his letter of referal just a request to comment his management of my case. The neurosurgeon also said I viewed the Walton Centre as the best unit to deal with spinal tumours.
In report on the first consultation with the NHS Tayside Consultant Neurosurgeon he noted his 50 minute consultation had consisted of 40 minute in which I covered my medical problems since July 2008 when the diagnosis had been sciatica. But then as seemed common all doctors asked me to describe my medical problems. I now believe it is just to much bother to read through the medical files which are spread across four hospitals and the GP practice. So 10 minutes had remained of that consultation. And the neurologist note in his second consolation after my first consultation in the Walton Centre that during his first consolation he had asked me to put in writing 3 or 4 things I thought he could do for me!
The first consolation at the Walton Centre was with a Registrar Neurosurgeon who said he had discussed my case with his consultant and they felt that my symptoms were dyasthesia as a result of the damage inflicted on my spinal cord by the schwannoma tumour and he advised I should take gabapentine. I explained that I had no need for pain killers and was almost weaned of Tramodol and had also reduced my use of paracetamol. When I referred to the pseudomeningocele the registrar seemed surprised and informed me he COULD not disagree with a consultant neurosurgeon in Dundee. The consolation lasted 30 minutes and the basic neurological test push pull on all four limbs, reflex and skin pricking tests were exactly as GPs and hospital doctors had claimed in 2008 proved their diagnosis of sciatica. I asked would I see anyone else and would there be any tests done. The answer was No. But he could arrange a referral to a Nerve Specialist but that would require a second visit. A 250 mille round trip two nights accommodation in Liverpool with associated expenses all for 30 minutes with a register neurosurgeon who could not disagree with a consultant neurosurgeon in Dundee. In his report the registrar said he had strongly advised against the further surgery I was requesting on my thoracic spine. And in 2012 his consultant advised the complaints manager in the Walton Centre that further surgery to my spinal cord would not help. But there had never been any suggestion of surgery to my spinal cord. The consultant neurologist in NHS Tayside had referred to OPERATIVE PROCEDURES ON THE PSEUDOMENINGOCELE, see below no doubts there then and that was in March 2011. What I had requested was surgery to deal with the pseudomeningocele. Even stranger the Walton Centre consultant neurosurgeon suggested that surgery to my spinal cord would not help in an e-mail dated 30 July 2012, six months after Prof. Dr. Westophal's investigative and corrective surgery on 9 January 2012 had completed the operative procedures on the pseudomeningocele.
The second consolation with the NHS Tayside Neurologist followed, my first visit to the Walton Centre. Again the only tests were the basic neurological but with the addition of a tuning fork. When I asked if any other tests would be done such as to check for CSF stasis, as the pseudomeningocel was obviously restricting the flow of CSF, his response was that fancy tests such as the MRI scans were lazy doctoring. When I pressed about the pseudomeningocele and referred to the advice from Prof. Jallo MD and Prof Dr. Westphal he advised that I should consider that my recovery had been very good and any further OPERATIONAL PROCEDURES ON THE PSEUDOMENINGOCEL could pose serious consequences and I could end up in a wheel chair. I informed him that the specialists out with the UK had advised there was no more risk involved in investigative and corrective surgery on the pseudomeningocel and the defect in my dura, than for any other form of routine invasive surgery. So he advised I should ask the neurosurgeon. I informed him I had asked his colleague the consultant neurosurgeon as indeed I had asked the registrar neurosurgeon in the Walton Centre, but they had both refused to expand upon their strong advice against any further surgery.
I demonstrated just how little problems I had while in an office environment or doing difficult Yoga exercises. As the neurologist recorded in his report, I demonstrated my ability to stand on either leg with the other tucked up into my perineum and other Yoga poses. He therefor concluded my neurological problems were difficult to detect and I had problems explaining what they were. I had explained that my problems followed walking anymore than the minimum for daily life. And that walking no more than 1/2 mile made me feel nauseous and forced me to lie down flat on my back as when in the MRI scanner until I recovered. So the neurologist prommissed to write to the consultant neurosurgeon asking him to define the risk posed by OPERATIVE PROCEDURES ON THE PSEUDOMENINGOCELE which he would in turn pass to me so I could assess the risks involved. Those promises were included in his report but the promise to forward the neurosurgeons response to me was not fulfilled. I believe as he could not support the consultant neurosurgeons response.
I his response the consultant neurosurgeon advised that the meningocele was filling the space over the back of my spinal canal. The space or cavity he had formed by removal of bone and muscle during the laminectomy. And as there was no tissue nearby to fill that space, doing so would require an extensive plastic mobilisation of muscle with transportation into the space. And the surgical risk to me would not in his view be worth the risk. NOTE muscle harvested from other parts of my body. Serious surgery indeed!
However I had obtained the referrals as recommended and the best possible confirmation that the UK NHS would not allow investigative and corrective surgery. So Prof. Dr. Westphal provided his detailed formal proposal for the Investigative and Corrective Surgery to locate and repair the defect in my dura which was making the pseudomeningocel symptomatic. He also confirmed that the surgery he proposed was NOT DANGEROUS would be time consuming but had a good prospect.
I then traveled again to the Walton Centre for a one hour consultation with the Pain Management Consultant. When we first met I asked did he not agree that a large pseudomeningocele compressing both sides of my dura against the permanently damaged nerves in and attached to my spinal cord would at the very least irritate those nerves hence my NAUSEA and need to lie down to recover following walking distances of no more than 1/2 mile. My nausea being due to CSF being forced from within my dura by the pumping action of my walking gait. The Pain Management Consultant informed me he had no knowledge of a pseudomeningocel and did not have access to my MRI imaging. As he confirmed in his report on the consultation. He noted that obviously the neurosurgeons saw no relevance to that pseudomeningocel and my symptoms. He also referred to the advice I had referred to from specialist neurosurgeons in Baltimore Lucern and Hamburg. Saying the conflict between neurosurgeons in the Uk vs Neurosurgeons in the rest of the world, put him at a disadvantage. But he also noted that the registrar neurosurgeon appreciated that I had interpreted that international neurosurgeons were supportive of my request for surgery on the pseudomeningocel. I found that rather strange as Prof. Dr. Westphal's formal offer was dated 27 June 2009, one month before that consultation with the Pain Management Consultant and I had a copy of that formal offer and discussed it during the consultation. Strange indeed, hardly just my impression!
As I had informed the neurosurgeon in Dundee, the Neurologist and the Registrar Neurosurgeon I informed the Pain Management Consultant that though I couldn't walk more than the minimum distance required for daily life without suffering nausea and needing to lie down to recover, flat on my back as when in the MRI scanner. I had by then improved my level of fitness to allow me to cycle round trips in excess of 36 miles without problems the difference being cycling did not involve the pumping action of my walking gait, but they did no want to know, nor were they willing to check. Nor would they walk with me or arrange an exercise stress test to observe what happened. As always it seemed what I said did not matter and advice from neurosurgeons out side the UK was ignored.
The Pain Management Consultant advised me that Gabapentine would help and despite my informing him that I would not take gabapentine he provided a prescription. However in his report he recommended that my GP consider a tertiary referral to a neurosurgeon for another opinion. And though he also recommended the GP trial prescriptions for gabapentine and or strong opioids (tramodol) alone or in combination, he also said he though those drugs WERE UNLIKLEY TO HELP though I might just tolerate them well. My understanding is that Pizfer were fined multiple millions for encouraging doctors to prescribe gabapentine for neuropathic pain though Pitzfer were aware that during trails gabapentine was found to have no more of a beneficial effect that a placebo but the side effects were problematic. The Pain Management consultant also said in his report that he had checked the medical literature but could only find one dubious report on a symptomatic psedomeningocel. Strange given his title of Professor and Director of a research Institute Associated with Liverpool University.
There are a large number of international medical publications on pseudomeningoceles. One example being published by the prestigious American Association off Neurological Surgeons the AANS. Review of spinal pseudomeningoceles and cerebrospinal fluid fistulas, Hawk MD and Kim MD, Neurosurg. Focus Volume 9, July 2000, Article 5. In that review the authors draw upon 102 independent publications all relating to pseudomeningoceles. ONLY ONE?
I was left with a decision to make should I allow my health to continue to deteriorate or should I take the risk spend my savings and hope to resolve my debilitating symptoms. I was at a loss to know what to do. So I contacted the Scottish Patients Association and asked for advice. I had tried seeking help from the private medical procedure but that had proven difficult as all their doctors were NHS registered and it seemed that most used and relied upon NHS doctors and facilities and required a referral form a GP.
The SPA met me in Glasgow advised the only way to cope with the NHS and their refusal to provide information was to employ the services of a specialist solicitor to whom the introduced me. Expensive but he could obtain all my medical files and at least give me some form of closure and I would then have done all I could. The solicitor obtained copies of my medical files and prepared what he called a time line which cross referred all files where possible between the four hospitals and the GP medical files. The intention being to present the result to a neurosurgeon who would act as an expert witness IF we proceeded to court. I was provided with the time line or series of abstracts or summaries of the medical files. But the problem was that the solicitor could not find a UK neurosurgeon willing to act as an expert witness so we could not go to court. So I asked for copies of all my medical files and the solicitor informed me that was the purpose of the time line abstracts. He could not release copies of my medical files to me due to agreements he had with the NHS. But I had paid all the NHS charges and the solicitors fees. I asked the SPA who confirmed that specialist solicitors did not release copies of NHS medical files to the patient as otherwise the NHS would not release copies of those medical files to the solicitors.
I had studied the Data Protection Legislation as a business management student. I had been registered to keep data on customers, clients and suppliers for 15 years so I thought I had a good grasp of the legislation. When I contacted the DATA COMMISSIONER their first question was had any doctor ever made a suggestion that my problems were psychological. And when I answered yes they explained there were special provision under the legislation which allowed the NHS to withhold information from any patient who any doctor had decided could be psychologically harmed by access to his or her medical files. There was nothing they could do and the solicitor and the SPA had advised correctly.
However in 2008 when GPs had claimed my thoughts on Spinal Tumours and Prostate Gland problems were all in my head. I had demanded a referral to a specialist even if that was a psychiatrist.
Again in August and September 2009 when the 'new' registrar neurosurgeon and the my GP informed me my strange ideas suggested I was mentally ill, I demanded a referral to a psychiatrist for assessment and treatment. I was under no doubt that I simply could not accept such statements from specialist doctors or GPs and not insist on assessment and if necessary treatment. The GP had informed me that most people in Perth would not want the stigma of a referral to the local mental hospital. I reminded the GP that I was not most people in Perth and if there was any suggestion that I was mentally or as he had amended bios statement psychologically ill I expected to be referred and if necessary treated for my mental health problems. I had no fear of such assessments as since I started working at 16 in 1960, I had regular psychological assessments as part of my training and progression. Those psychological assessments continued when I became a Civil Servant as parti of my career progression and due to security requirements. They also continued when I stated my MBA studies and as part of my training and qualification in business management. And when the GP lost control and again suggested my refusal to accept nothing would or could be done about the pseudomeningocele in late 2009, this time I pointed out thatch had made the suggestion with my wife as a witness. If for no other reason that in their 2006 report NICE had warned that primary care professionals such as GPs nurses and even hospital doctors had no training in the complications patines with the rarer CNS tumours that could cause psychological damage to patients and or their relatives and family. NICE pointed out that a GP would see at most one patient with a new spinal CNS tumour in 12 years of practice and would be very unlikely to make a correct diagnosis.
The result was a telephone call from the consultant psychiatrists secretary she pointed out that there was no obligation for me to see a psychiatrist and if I did so it would be my choice as no one was forcing me to visit the mental hospital or see a psychiatrist. My response was yes please and as soon as possible. The two assessment consultations with the consultant psychiatrist were in between emergency admissions as a suspect heart attack. In December 2009 and I obtained copies of the MRI images in November 2009. November and December were very busy months.
The discussions with the psychiatrist was very interesting and at the end of the second assessment confirmed that I had no psychiatric problems. But he was not happy when I asked for copies of his report on the first assessment and the second assessment. He hesitated explained copies of psychiatric reports were not normally released to patients. The result was I was given copies of both reports and as the psychiatrist admitted in 2012, he and made some very harsh statements about my personality based on comments by the other doctors. But having said I had no psychiatric problems the psychiatrist reminded me that I had written to my MSP quoting from the NICE report so I was aware that psychological problems were a possibility due to the way my case had been handled since 2008. Perhaps he was looking for a way to suggest a psychological assessment and he agreed to do so when I asked what he proposed to do about any possible psychological problems. The result was two assessment meeting s with a clinical psychologist and again I was provided with a copy of the report. The claims that I was an overanxious patient were covered by the statement determining what level of anxiety is reasonable when such serious medical problems are involved are very difficult but I had no psychological problems and was therefor being discharge with no requirement for any treatment.
So with the evidence of three assessment reports by both a consultant psychiatrist and a clinical psychologist the specialist solicitor had no choice but to release copies of my medical files to me. Just as well I had refused to accept the GP and Neurosurgeon's suggestions in 2009.
In December 2011, I accepted Prof. Dr. Wesphal's formal offer and flew to Hamburg on the 26 December. Fiollowing meetings and transfer of funds I was admitted to the magnificent Eppindorf Hospital on 5 January 2012, the operation was successfully completed on 9 January, when Prof. Dr. Westphal located and repaired the larger than expected defect in my dura which had obviously expanded over three years. The space or cavity over the back of my spinal canal described by the NHS neurosurgeon, was obliterated using what were described as very routine but very necessary methods following a laminectomy and a lumbar drain with a pump was left in place for several days to maintain the pressure of CSF at a lower than normal pressure to allow the complex would to heal. I was discharged and flew home on 18 January 2012. Specialist Neuro-PTs were with me as soon as I came round and had me exercising immediately, moving my toes and feet then my legs to ensure all was ok and there were no blood related problems. They checked every day and ensured I continued to exercise. When the drain was removed the PTS ensured I was up and slowly increasing exercise. Both the PTs and doctors including Prof. Dr.Westphal repeatedly emphasised the need to do the stretching exercises they demonstrated. Not just while I was in hospital but for the rest of my life. Otherwise they warned muscle spasticity would result in severe damage to my skeletal structure and make the UK NHS doctors suggestion about spinal degeneration and sciatica a self fulfilling prophecy.
When I obtained copies of my medical files from the solicitor in February 2012, I found repeated suggestions by hospital consultants to psychological problems rather than neurological, gastroenterological or even urological!!!! I also found references to muscle spasticity, spastic catches, muscle tone, deep tendon reflex problems in medical files by the consultant neurosurgeon, the consultant neurologist. Spasticity problems that had not been mentioned to me and for which no suggestions were made as to how I should cope. I had however had problems in 2009 and 2010 as I regained fitness and joined the CTC on longer and longer cycle trips even though I had to restrict all walking to the minimum possible for daily life. A GP referred me to the hospital Othotics department when the toes on my left foot began to 'claw' and turn upwards. The orthotics specialist provided shoe inserts and to my surprise a large velcroe boot to put on my left foot when in bed. The explanation being the boot would prevent plantar facilitis problems. I did not take that boot to Germany and the german doctors said they would not use such a device as in their opinion it would not solve the problem. In 2013 the orthotics department provided a more 'aggressive' boot or night splinit made of hard plastic as the spasticity was tearing the velcro boot apart. As I had been unable to stretch due to having had my PROSTATE gland surgically removed on 11 December 2012.
I used the medical files to make my second formal complaint to NHS Tayside in May 2012. My complaint was about my neurological problems as the urologists had seemed always to do whatever tests were necessary. I was therefore interested in my neurological medical files but as they were filed in four volumes under each hospital plus a fifth with the GP practice medical files I LUKILY noted a surprising letter from a Urologist in 2010. In 2010, had asked for copies of my medical files and completed the necessary NHS forms. But the medical files released were of little interest and provided no real information, I now know why. The urologists letter was not referred to in the solicitors abstracts and surprisingly the urologist thanked the hospital Information Manager for the copies of all the note from the other consultants involved with my case. However neither the Information managers request to the urologist or any of the other notes the urologist referred to were released to my solicitor in 2011. Was that a mistake? Had the urologists letter been released in error? Had the solicitor missed that letter? Or was there some other explanation? All filers were marked in numerical order so apparently none were missing. Or none of those in numerical and date order
I checked all the other urological files but could find nothing in the urological files that would cause me any concern. My prostate gland was small smooth felling and benign and the urologists had no concerns. It made no sense why had the urologist written that letter? BUT FORTUNATELY FOR ME he had as it turned out. As but for that letter the cancer in my prostate gland would have continued to spread outwit the gland to surrounding tissue and bone.
I did notice that there was no letter or report following the last clinic when a consultant Urologist had informed me in December 2010 that as all tests had proved negative, my prostate gland was small, smooth feelings and benign neither he or any of his colleagues was concerned and therefor there would be no further clinics. In 2010, I was relieved to have one more medical problem resolved and since I had stopped walking other than the minimum possible no more serious instantaneous pains had occurred. Or not until December and January 2011, when I made my last visit to an OOHrs GP at midnight. The urologists arranged an internal bladder examination and a consultant PG wrote informing my GP that the bleeding had been found to be due to fragile looking veins within my prosthetic urethra and no further follow-up had been arranged.
But when I checked the GP files in 2012, I found the letter the consultant urologist had written to my GP in 2010 following the last clinic. As had been explained there would be no more clinics but the urologist had also advised the GP to arrange another PSA test for April 2011. It was now May 2012 and no PSA test had been arranged. So I immediately telephoned requesting a PSA test. That was refused and when I referred to the letter I was informed it was too late as 13 months had passed. But when I insisted the Blood sample was taken. The result was another clinic as the PSA level had risen significantly. But the urologist again advised that my prostate gland was small smooth feeling and benign. He had however apologised for the departments failure to notice that the GP had failed to arrange the PSA test and that would never happen again as in future I would receive the letter of appointment for the next clinic a few days after the last clinic.
But when I produced a copy of the letter he had written to the Information Manager in 2010 the urologist was obviously very embarrassed and blurted out I thought such letter were never released to patients. I said I could find nothing to cause me concern other than his letter and the missing PSA test. He assured me there was nothing to be concerned about hence when he had BEEN INSTRUCTED to write that letter had had no reason to refuse and all the other consultants in other specialities had written similar letter, he was just an employee and had no choice but to comply. That Urologist had always been very helpful and supportive and arrange all the necessary tests and I believe he had done everything he possibly could within the confines of NHS policy.
A few days later the appointment for the next clinic in February 2013 arrived. But a few days later another letter arrived. Though he had advised that my prostate gland was small smooth feeling and benign the PSA test done following the clinic proved the PSA level had yet again increased. So his consultant had decided a needle biopsy was required.
The consultant advised that he would puncture my prostate gland 18 times if I agreed. But he also advised that he was only doing so to appease me and remove any doubts that I had about my small, smooth feeling prostate gland. He explained the risks of infection despite the anti-biotics and that it was my choice. If I decided not to put with the discomfort and risk of having my prostate punctured 18 times that was my choice. But I had had enough and signed the consent form. Following the procedure I was informed a specialist nurse would provide the results in two weeks time and the results would be negative as no cancer was expected.
Two weeks later the nurse was wearing a large McMillan Nurse Badge and the results seemed obvious. But according to the nurse the news was excellent, there was as expected a very small number of low grade malignant cells locked within a small area on the right off my prostate gland. As I would die with that cancer rather than of that cancer in accordance with NHS policy the Multi Disciplinary team had decided that watchful waiting with PSA tests every 6 months would be done. With possible repeat biopsies in future if considered necessary. The nurse was surprised when I said I wanted my prostate gland surgically removed within the cancer waiting time limits. The nurse informed me my demand was not reasonable or sensible and was not possible.
So I took the card she offered with assurances I could telephone or e-mail her at any time. So I went home and sent her an e-mail confirming our conversation I wanted my prostate gland surgically removed as soon as possible and within the published cancer waiting time limits.
The nurse telephoned I would have to prove I had 10 years life remaining, then a full body MRI scan and nuclear bone scan to prove the cancer had not spread. The pre assessment confirmed I had ten years by taking my weight, hight and BP. I have little doubt that had the scans confirmed the needle biopsies results I would not have been allowed surgery.
However a Consultant Oncologist kept me waiting for two hours while a nurse constantly apologise for the delay as the oncologists obviously had problems to deal with. The oncologist apologised and informed me she had been ploughing her way through my extensive medical file. The information mainly my repeated visits to oohs GPs who had noted that I understood they could not do anything but just wanted the repeated episodes of passing blood recorded. The oncologist explained her apology was not for my 2 hour wait. Her apology was because the GPs had failed to react to my repeated questions regarding repeated urine infections and had yet again misdiagnosed. My symptoms had not been due to infection but due to inflammation. I had been suffering from undiagnosed prostatitis since 2008. As the GPs had been saving on laboratory tests by using plastic dip sticks. Another cost cutting measure by the NHS as what did risking loosing a few patients matter they had lots more to keep them busy procrastinating. So I was prescribed two courses of a specific ant-biotic to deal with the prostatitis prior to surgery.
But that was not all the Oncologist apologised for the ineffective needle biopsies which had only found a few malignant cells in a small area in the right side of my prostate as the more effective MRI scan had found that the cancer was spread throughout my prostate, though hopefully had been contained. JUST AS WELL I HAD INSISTED ON SURGERY! and LUCKILY THE UROLOGIST HAD WRITTEN THAT LETTER, the only one of apparently several which had been released. Wether by design or accident. Perhaps someone had slipped it in to warn the solicitor. Or could it have been another attempt by the NHS to overcome the psychiatric and psychological assessments in 2009. The urologists letter was dated March 2010, and my GP requested the psychiatrist consider reassessing my mental health based on my letter requesting a referral to the Walton Centre. The GPs covering letter being dated November 2010. But fortunately the psychiatrists letter refusing to make a reassessment as my letter did not indicate any such problems was dated December 2010. But I have no doubt that the NHS system tried to ensure the 2009 assessments were overturned. Though as in 2009 they were unsuccessful. Seems I am not the only one with an obsessive personality or drive to obtain the objectives thought necessary.
The consultant oncologist I met for the first time said he could remove my small prostate gland by laprascopic surgery with FULL NERVE SPARING and an excellent prognosis. But following that surgery came the BAD NEWS. The left side of my prostate gland was in very poor mushy condition the left nerve bundle had been compromised and had to be removed along with the gland, 12 lumph nodes and a margin of tissue. To allow the lab to HOPEFULY prove the cancer had not spread further as it can spread via the nerves, blood vessels or the lymphatic system. All PSA tests have been at the minimum recordable level at three monthly intervals. But Prostate Cancer Research advice that another 9 years of such levels will be required before a cure can be considered if indeed ever.
The poor mushy condition of the left side of my prostate indicating why the 18 needle biopsy had been so wrong. The mushy condition of my prostate due to the cancer had resulted in the needles pushing the tumours aside and collection samples of mush.
There was also an explanation for the urologists finger not noticing the poor mushy condition of my prostate, there fingers can only reach a limited area of the prostate, not the left, right to top. So much for the gold standard of NHS policy- PSA test unreliable and ignored-urologsist -finger does not reach far enough- the needle biopsies push the tumours to one side- MRI scans only done to prove the cancer has not spread or if it has spread that surgery cannot be done as its too late.
Perhaps something or someone was looking after me but it was not NHS Policy. But I had thankfully became aware that I could not rely upon the NHS since 2008 or 2007.
I had repeatedly asked between 2008 and 2012, could part of my CNS symptoms be due to problems with my prostate gland but that was denied. However much of the so called dyasthesia due to damage to nerve in my spinal cord have and continue to resolve as the nerves in my PNS continue to recover from the prostate surgery which I am informed will take at least a total of two years. And I stopped taking Tramodol in August 2011 and have not used anything but paracetamol since except when in hospital and at a 1/4 of the maximum dose. In 2012 Prof. Dr. Westphal and his team advised as Prof. Jallo MD, had that drugs such as gabapentine and tramodol would nbot help with spinal cord dysfunction and could be harmful. They also suggested that if Paracetamol was the only painkiller the NHS could provide it should be in liquid form to prevent as far as possible damage to my digestive system.
In 2012 I took the opportunity offered by the Consultant psychiatrist in his response to my GP in 2010 offering a chat if I wanted. So I telephoned thanked him for his help obtaining the referral to the Walton Centre. I also explained what had happened since our last meeting. I noted his comments about my obsessive personality and widening my medical concerns into other areas such as digestive system problems. The psychiatrist confirmed he had been rather harsh but he had been influenced by the reports from other medical professionals and as he had said in 2009 he had had to some extent sit on the fence between them and me but he pointed out that he had never said I had any psychiatric problems and the clinical psychologist had removed any suggestion of psychological problems. I had not by then found the potential prostate problem!
I was surprised when the psychiatrist said he would now write another letter for my medical file updating the situation and ensure that any remaining suggestion of mental health or indeed personality problems were corrected and clarified. I have a copy of that letter dated 3 April 2012.
When I was discharged from Eppindorf. Prof. Dr. Westphal had expected that the next monitoring MRI scan would have been done in April. That he said would be OK to check for any possibility that following three years of my dura being forced against both sides of my spinal cord wether or not my dura had re-inflated to allow CSF to surround and protect my spinal cord. Or if the meninges/dura had remained tethered as that could require further surgery. But I had to request my new GP hasten the monitoring MRI scan
In December 2012, a monitoring MRI scan was done and the Consultant Neurosurgeon wrote informing me that the REPAIRS TO THE PSEUDOMENINGOCELE had been successful but there was still some fluid signal at the lowest point. He would not see me but would arrange another scan in 12 months time. There was no mention of tethering and successful repair would suggest there was none!
In December 2013, a monitoring MRI scan was done and the consultant neurosurgeon wrote informing me all was well at the site of surgery to remove the tumour in 2009. There was no reference to fluid signal. He would not see me unless he heard from me but would arrange another MRI scan in 12 months time.
I have continued to exercise and do the stretching exercises as otherwise the spasticity talked over. I had surgery to correct the hernia in my abdomen in October 2013. And it becomes more and more difficult to recover. But in June I climbed my first Munro a Scottish mountain with peak at over 3000 ft. The first since July 2008 a 1,500 ft vertical assent and 10 mile walk. In July I started jogging for the first time since the prostate surgery and in August I sat rated to run. I have since walked and jogged the 1/2 mile or so uphill to the football pitch to warm up. Then run three times round the pitch followed by running and jogging home to cool down. Thanks to Prof. Dr. Westphal and the Consultant Urologist who removed my Prostate Gland and the Surgeon who repaired the hernia I am now at 70 and 1/4 as fit as I was in July 2008. Though I still have spinal cord dysfunction and muscle spasticity. But as Prof. Jallo MD advised the best way to deal with spinal cord dysfunction is to force the spinal cord to pass the necessary messages by exercise. IF THAT IS POSSIBLE!
I intend to keep trying to maintain my health as best I can despite the NHS and hopefully achieve 100 plus. I will definitely try.
One last thing following the 2012 clinic the GP Practice with whom myself and my wife had been registered since 1982 when we moved to Perth at last carried out their threat to put me off their list. Before the prostate cancer was diagnosed.
Obviously I don't know your condition or what could be done to help. But if I were you I would be very concerned about the pseudomeningocel.
I hope all goes well for you but keep in touch and take care. If I can help in anyway let me know.