In medical books and on Internet websites in the UK , USA , Australia and all over the world, the leading spina bifida associations will advise you that spina bifida occulta is of no consequence and that it requires no treatment. On the website for the UK spina bifida association [ASBAH] they write that spina bifida occulta is of no consequence whatsoever. In all countries, the complications associated with spina bifida occulta are thought to be caused by tethering of spinal cord. If spina bifida occulta is of no consequence whatsoever, why are there complications? The pain and suffering caused by spina bifida occulta is so much for so many, that in desperation spina bifida occulta sufferers will allow spinal specialists to perform on them de-tethering operations or spinal fusion. A de-tethering operation consists of the surgeon cutting the end of the spinal cord. I'm not surprised that the symptoms of many patients worsen after surgery. If complications caused by spina bifida are thought to be caused by tethering of the spinal cord, why do many surgeons perform spinal fusion for spina bifida occulta sufferers ? I suffered from this crippling and debilitating sickness and was cured by dramatic circumstances. I was cured by the late Dr F Wulffaert at the time of my operation, he was suffering from cancer. Two weeks after the operation Dr Wulffaert passed away. Before my operation, the leading spinal specialists from the University of Brussels and the University of Leiden [ Holland ] did not have a clue about Dr Wulffaert's operation. Their advice was against having the operation, because I could finish in the wheelchair. Thank God I did not listen their advice. My life before Dr Wulffaert's operation was a nightmare without end. During my life prior the operation I was suffering from the following symptoms: chronic lower back pain, chronic headache, chronic fatigue, chronic bladder, chronic bowel, pain in the buttock, diffilculties standing, sitting, cramps, contactions, loosing balance, weakness in the legs, deadness, stiffness of the body. After Dr Wulffaert's operation all these symptoms disappeared and without his help, I would be dead a long time ago. I was very well advised before operation by Dr Wulffaert about spina bifida occulta and about the operation, which he described to me as being one the simplest on the spine. He performed such operation for over thirty years. Even Dr. Wulffaert's son suffered from spina bida occulta and was operated by him. Dr Wulffaert told me exactly what will happen after operation, when damaged nerves will start to regenerate. Dr Wulffaert advised me about the eminent French Professor Jacques Leveuf book “ Etudes sur le spina bifida “ published in Paris 1937 and this book is unknown to the medical profession of today. On the page 213 Professor Leveuf stated “ Spina bifida with tumour make up a large cases of spina bifida occulta “ I can tell you also from my personal experience the pain and suffering cause by spina bifida occulta. Can you find one doctor in the UK , USA , Australia and all over the world with the courage to challenge publicly these claims ? There is no coincidence that my brother is suffering from this horrible sickness. Spina bifida occulta is a hereditary spinal malformation which 5-10% of the world population suffers from. Even before Australian doctors diagnosed spina bifida occulta and Myelograms had shown Nerves root swelling, disc protrusion and the blockage of the spinal cord fluid, I knew my brother is suffering from spina bifida occulta. It was enough for me to observe him, in the way that he sits down, as Spina bifida occulta sufferers have great diffilculty in sitting down properly. From 1967 I have tried to find a doctor in the UK , USA , Australia and all over the world with the knowledge to cure this sickness. I have cried desperately for help and was ignored by the Ministers for Health, the media and all those who should look after public health. From 1967 the only help my brother is receiving are expensive medical tests, pain killers and anti-inflamatories. I'm not surprised that he's fighting for his life now. My brother from 1966 was admitted more time in the Royal North Shore Hospital in Sydney then any other man in Australia . Again and again anti-inflamatories medication doctors have priscribed or painkillers. Despite the fact that the Royal North Shore Hospital doctors had the copy of the myelogram report from 1969 and diagnosed was spina bifida occulta and Nerves root swelling. The same informations had the Minister for Health in NSW. I can't believe that The Minister for Health was advised by doctors from the Royal North Shore that my brother has either spina bifida occulta or Nerves root swelling in the letter dated 9 th May 1994. This must be a cruel joke. I challenge the Director of Medical Services the Royal North Shore Hospital to release publicly all medical tests and treatments my brother has receieved from 1966. Can he tell me why the Health Care Compleints Commission was advised by the Royal North Shore doctors that my brother has either spina bifida occulta or Nerves root swelling? The facts are that the Ministers for Health, Australian doctors and newsmedia knew that my brother suffers from spina bifida occulta and Nerves root swelling [tumour], they did not show any concerns that tumour on the spinal cord Australian doctors are treating with painkillers, anti-inflamatories or physiotherapy. Unfortunately 5-10% of Australian population who suffer from spina bifida occulta are receiving these treatments. Who cares? From 1967 I have brought this crippling sickness to the attention of the leading spinal specialists in the UK , USA , Australia and all over the world. Everybody was passing the buck. These are contradictory and absurd medical opinions from the leading medical professions all over the world. In the desperation my brother was ready to go to Russia . The Russian medical profession in the letter dated 10 may 1988 advised me, do not come to Russia this operation can be peformed in every hospital in Australia . The Orthopaedic section university in Brussels advised me that nothing is mysterious about the operation, every doctor in the world knows about it. The leading spinal specialist Dr Ectors from the same university will certify that there is no such operation. Dr K Bleasel, a leading spinal specialist, studied my medical records before and after the operation in a letter dated 14 th December 1983 , wrote: Dear Mr Zanetic, I have written to the son of Dr Wulffaert in another attempt to find the answer to this puzzling problem. The son of Dr Wulffaert was suffering from SBO and was operated by his father. Dr J Yeo the leading Australian spinal specialist in the letter 22 nd May, 1987 The problem associated with spina bifida occulta in my experience are less sever. None the less, diffilculties can arise as you indicate in your brother's case where nerves can be irritated and this irritation results in swelling. How less severe is tumour on the spinal cord? It's tragedy that I have to indicate to the leading spinal specialist what causing Nerves root swelling. This swelling is caused by nerves root swelling, disc protrusion and the blockage of the spinal cord fluid[ tumour] Dr S Morson studied my medical records before and after operation. He described my operation as mysterious. In a letter dated 10 th May 1988 Dr Warwick Steel wrote “In the family history his brother had spina bifida occulta and had some sort of surgical procedure which brought about a miraculous cure. Dr M.J Ebersold, M.D. From Mayo Clinic USA spina bifida occulta, generally, such a condition does not produce the type of symptoms for which surgery would be recommended. What sort of treatment did Dr Ebersold priscribed for Nerves root swelling? Are Nerves root swelling without symptoms? Do not tell me, I was suffering from it. In the letter dated 8 th March 2000 the UK spina bifida association [ASBAH] had written to me “I have made enquiries about your surgery from surgeons and colleaques in the UK with no success”. I'm not surprised that the UK doctors have no a clue about this surgery. This letter I have received from the Medical Journal of Australia Many thanks for your letter of August 29, 1995 . Althought I am sympathetic with your plight, there is little that the Medical Journal of Australia can do to help you in this regard. Your primary source of health care should be the agency through which you should address the ongoing problems with your brother and potentialities for your children. The Medical Journal of Australia must know that Australian doctors have no knowledge of how to deal with this crippling sickness. This serious public health problem was debated in NSW Parliament on the 23 October 1996 and again on the 16 November, 1999 but never became a public issue, because the Australian Medical profession, to cover up for their medical incompetence about SBO, remained publicly silent and did not care about my brother's well being or for all Australians who suffer from this crippling sickness. The local newspaper Illawarra Mercury published a long story about my brother's struggle for life on the 26 March 1981 and again on the 9 April 1994 . The extract from Illawarra Mercury : But at his home yesterday, the same Tony Zanetic, now a deeply frustrated and bitter man, was still pleading as his brother Mark struggled with his crippling disease of spine. “Mark is finished now and the medical profession has blood on its hands,” said Tony Zanetic. I have seen plenty of people in my life take up arms against doctors to fight what they considered to be incompetence and neglect. Strange silence from the Australian medical profession as a whole. Not one doctor has the courage to publicly defend their medical reputation. This is the letter from the Minister for Health in NSW Dr Andrew Refshauge dated 21 March, 1996 . Thank you for writing to me on behalf of Mr Zanetic concerning spina bifida occulta sacrum. The matter is now being investigated, and the information obtained will be provided to you soon. This was an investigation, when you have no an inquiry. Can Dr Refshauge tell me what was the result of an investigation ? This is onother letter from Director General of NSW Health Department Mr Michael Reid: Mr Knowles the Minister for Health has asked me to advise you that the matters raised are being considered and a reply will be sent to you soon as possible. This leter was dated 16 December, 1999 . I'm still waiting for a reply. To show you why people who suffer from spina bifida occulta can't get proper medical help. I have received the letter dated 18 November, 1994 from Health Care Complaints Commission. In this letter their expensive medical consultant attached to the Commission advised them the usual form of treatment for spina bifida occulta or Nerves root swelling is conservative management (painkillers, anti-inflamatories or physiotherapy) and not surgery. How doctors can treat swelling on the spinal cord with these treatments in my brother case over 40 years? The world medical profession of today, in this day and age of rapid advances in medicine, do not know how to treat that doctors knew how to treat a long time ago. This medical story is the greatest embarrassment for the medical profession as a whole. Why my claims are not challenged publicly or in any public forum? In the UK , USA , Australia people will be horrified if they know the true story about this never ending medical saga. To share medical knowledge is the foundation of the medical profession as a whole, something went horrible wrong in this case. |