I have just been to my GP following up from the letter from my Lymph clinic. They had prepared a prescription from the letter but the dosage of antibiotics was half of what is recommended as they did not have the notes that were sent with my copy of the letter.
I have given them a copy of the care notes which they have scanned and are holding on file. The GP was understanding and very helpful but admitted to not knowing much about the condition or the care guidelines etc.
Hi Gavin,
Welcome to the club . . . NOT!
Yup, it is shameful that the average Medico knows next to nothing about Lymphodema. I was mis diagnosed for 5 years before getting the correct treatment. Even now, if you read these forums ( and others on FB), you will see what a potluck system is in operation here in the UK. depends really where you live if there are any services available.
Hope your treatments go well and that things get sorted out. As all fellow Lymphos will tell you, you need to keep ontop of it and keep updated with the latest info on the networks. You can't rely on the average GP to know what is best for you.
Cheers
Christo
Thanks Christo.
I am still learning but i think you have to sometimes be pushy to get what you need and not so British!
Yup Gavin...it took 10 years for me to be diagnosed...it took a District Nurse to refer me to a Lymphoedema Clinic cos she recognised the symptoms... My GP had no clue at all...even after having biopsies done ..yup2 of them and a bazillion lotsa blook work...
From the 1st biopsy back in March 2003 to the time Lymphoedema was diagnosed in October 2012 I struggled to cope with swollen legs not knowing what the problem was.. and my GP had no clue at all...But now I am doing just great with the guidance from the Lymphoedema Clinic...the therapists are wonderful and so helpful and very understanding...I am so fortunate in that I only live about 3 miles from the clinic!!!
Glad the GP was sympathetic. I suppose so many conditions/diseases and combinations means that they are unable to keep on top of all of them. This is where LSN and its website and info leaflets is so helpful. Consider it another hurdle cleared!
hi gavin
if your gp actually admitted to not knowing very much, then you've got a good 'un! it's the ones who think they know everything, but don't actually realise they know nothing about lymph, that are really dangerous (who was it who posed a question, not that long ago, who was told 'mastectomy or nothing' by their gp? i'd rather have yours)
make another appt & take the link to the bmj learning module that was designed for gp's in conjunction with the lsn: lymphoedema.org/Menu4/7BMJ%...
if i were you i'd be tempted to ask if there's anyone else in the practice who does know about ld, & give them a go, but it might be worth sticking with the one you've got - a bit of willingness is a v useful thing when it comes to gp's - & as you get more idea yourself of what works for you, you can get better at managing it together
I spent 6 or 7 years going back and forth to the doctors to try and find out why my foot and ankle was swelling and towards the end, the swelling went up my leg too. I have many times been told they had no idea what was going on, I've been told to lose weight, given water tablets (which shot my blood pressure up so high it made me really ill), told I was a hypocondriac (sorry if it's not spelt right!). The final straw came when my foot was so swollen, I couldn't get any footwear on so I booked an appointment with a new doctor at the practise, went in, sat down and insisted my foot be cut off!! He looked at my notes, prodded and poked my foot and leg and then declared he thought I may have Lymphoedema but he couldn't advise me much about it apart from it's a life-long thing, not curable but is treatable and I needed compresion stockings. He then spent 30 minutes looking on the computer for somewhere to refer me and had to admit he was stumped. It was nice to finally be given a possible diagnosis even if the GP didn't know much about the condition. I ended up going home and looked on the internet and printed a load of information from the LSN site and found some clinics he could refer me to in my county. I went back to see him the next week armed with the information and he sent off a referral. I also gave him the information regarding antibiotics incase I got cellulitis which is now stored on my notes too. The rest as they say is history! But I can't believe it took so long to get a diagnosis and for me to go in with all guns blazing just for someone to take me seriously. It is wrong and needs changing. How many more people are suffering with lymphoedema and not getting the care they need because their GPs aren't aware of the condition?
The problem with GPs and indeed hospital specialists seems to be across the UK.
Since 2007, I have experienced problems with having skin cancer diagnosed and treated. Then a spinal cord tumour within my dura crushing my spinal cord was repeatedly diagnosed as sciatica and I was told PCT and NHS policy does not allow any form of imaging.
When I persuaded a GP referred me to a neurosurgeon urgently, the neurosurgeon refused to see me, downgraded the urgent to routine, and advised the GP to prescribe Neurontine. The neurosurgeon did not see me until an MRI scan found the tumour, within my dura crushing my spinal cord and pushing it and the nerve roots accros to the rear of my spinal canal.
I explained my initial symptoms to the the American Spinal Cord Tumor Association who immediately advised I required an MRI scan. The SCTA passed me to one of their panel of advisors a specialist spinal neurosurgeon Prof. Jallo MD based in John Hopkins hospital Baltimore who confirmed that diagnosis and asked me to send copies of all imaging. None had been allowed.
When the neurosurgeon refused to see me I was sent for a 28 week session of PT. If the PTs agreed I would be allowed and X-Ray. The GP said few if any completed the course and I lasted four sessions. The PT diagnosed a stiff lower back and asked me to bend over backwards repeatedly. The result was various muscle groups twitching out of control and I felt nauseous. When I pointed this out to the PT she replied, I was just about to ask why you are doing that. I asked what her position would be if I continued to bend over backwards and the serious problem I believed was found to be the case was proven to be correct. The PT pointed to the warnings posted throughout the hospital saying verbal threats would result in police action. So I returned to the GP and refused to leave his office for 1.5 hours under repeated threats of police action until he did something constructive.
The GP gave in and asked what I expected him to do. My reply was a Prostate examination, blood and urine tests and a slip for the Walk-in X-ray unit. All of which he refused. When when I informed the GP the Scottish Office had advised at my age 65, I was entitled to a prostate examination did he give in.
The blood tests showed strange chemicals in my blood and a highly inflamed live (the tumour perhaps?). The GP said if I had told him I was a heavy user of alcohol - I was not and the Gastroenterologist he referred me to eventually confirmed he did not know what had caused the liver problems other than a possible transient virus, but that was after the gastroenterologist had various tests to look for genetic deficiencies discounted.
An X-ray was followed by a CT scan then the MRI scan. Though I was invited to attend for the Full Body MRI scan recommended by the SCTA and Prof. Jallo MD, when I attended following the phone call I was informed the authorisation by the neurosurgeon who I had not met was to scan my Lumbar and Sacral Spine only. When I objected the technician said he could use the full capacity of one travel of the MRI scanner and include either my sore knee or my liver but not both. Fortunately I choose to have the MRI scan started at my breast bone and the tumour in my Thoracic spine appeared in the top 1/2 inch on the images.
The GP was advised by the neurosurgeon that it had been LUCKY to discover this tumour so early as most people are far more disabled when their tumours are confirmed. It had taken four months to obtain the MRI scan recommended four months before by the SCTA.
The tumour was removed two months latter. The neurosurgeon wrote informing the GP, the tumour would have been removed earlier but I wanted to have a holiday. The neurosurgeon had said February 2009 was the earliest date as he had to reschedule his operations to fit me in and even then it would depend upon bed availability. But he informed the GP, I wanted to travel to New Zealand for a six week holiday, I had asked would it be ok to go to New Zealand or should I cancel the trip and reclaim the money on my insurance. I now know the neurosurgeon wrote advising the GP, if necessary he could operate earlier if I had problems. How he thought that would be possible when I was 11,000 miles and 24 hours flying time away beats me.
My recovery following the operation was excellent. I returned to working full time in April. The first clinic was in March and the first monitoring MRI in June 2009. The neurosurgeon wrote informing me all was fine there was no tumour regrowth. But within two weeks my pre operation symptoms returned. I informed the neurosurgeon repeatedly via his secretary by telephone and e-mail but there was no response. Prof Jallo again advised send copies of your MRI imaging, radiologists reports etc. I had asked but could not obtain copies of the MRI imaging from the NHS until November 2009 but not the Radiologists reports.
When I managed to open the MRI software I was horrified to find what appeared to be a large block of fluid crushing both sides of my dura against the permanently damaged nerves in and attached to my spinal cord. When I asked why the neurosurgeon had not mentioned the fluid his reply was we do not confuse patients with jargon, the fluid is a perfectly normal appearance following surgery and has been so for all the other patients I have operated on over the years. But Prof. Jallo MD informed me the fluid was not a normal appearance following surgery but a cyst or pseudomeningocele filled with cerebral spinal fluid which had leaked from my dura due to a defect in my dura at the site of surgery to remove the tumour.
The CEO of NHS Tayside answer questions from my MSP informing her the fluid was a perfectly normal appearance following surgery and was present because of the lack of bone and muscle as this was the site of the surgery to remove the tumour. The CEO also informed the MSP, that two monitoring MRI scans had been done on 4 June and 8 December 2009. What neither the neurosurgeon or the CEO of NHS Tayside mentioned was the Radiologists reports on those two monitoring MRI scans, both reports by different Radiologists and all other following monitoring MRI scans referred to the Pseudomeningocel mentioned by Prof Jallo, not the perfectly normal build up of fluid referred to by the neurosurgeon and the CEO.
By 2011, I had obtained a referral and second opinion from the Walton Centre Liverpool who advised "strongly against" the further surgery I was considering. But neither they or the neurosurgeon in Dundee would explain why. I had obtained a referral to a Neurologist, who said he would write to the neurosurgeon to obtain details of the risks involved in further surgery. I have copies of that letter and the neurosurgeons reply. The neurologist explained he had promised to pass the neurosurgeons explanation to me. The neurosurgeon reply did not evaluate any risk, but instead explained that the Meningocele was filling the cavity he had created by removing muscle to access my spine, remove bone to access my spinal canal and remove the tumour from within my dura. The neurosurgeon continued, explaining that replacing the muscle removed and fill the cavity would require extensive plastic mobilisation and transportation of muscle to fill the cavity. For Rather obvious reasons the neurologist did not fulfil his promise to me.
I had attempted to seek help from the UK private medical sector but it soon became obvious that was not possible. They would not provide details of the specialists or their experience and qualifications other than they would all be NHS registered and NHS facilities would be used.
Specialist spinal neurosurgeons in the USA, Switzerland and Germany had offered advise free of charge. Obtain a second opinion from the Walton Centre, a referral to a Neurologist and written confirmation that the NHS will not perform investigative and corrective surgery. Having done so I received a detailed explanation of what the surgery proposed and a quotation from the Clinical Director of Neurosurgery for the University Hospital, Eppindorf, Hamburg Germany, Prof. Dr Westphal an international specialist spinal neurosurgeon.
Before I took the final decision I asked the Scottish Patients Association for advice. I met their Chair and their CEO in Glasgow. Their advice was to employ the services of a specialist solicitor. They introduced me to a solicitor and he obtained copies of all my medical files form the four NHS hospitals and the GP practice. But then he informed me he could not find a Neurosurgeon in the UK willing to act as an expert witness so he could not proceed to court.
I was left with no option and as time was running out and my condition was deteriorating I accepted the offer from Prof. Dr. Werstphal. Before doing so I obtained a copy of the letter from the neurosurgeon to the neurologist, referring to the cavity in my back and the need for plastic surgery to fill that cavity. Prof. Dr. Westphal advised the risks associated with investigative surgery were no greater than any other form of invasive surgery. He also advised that filling the cavity and replacing the muscle removed in February 2009 would not require any form of plastic surgery as all such spinal operations required routine methods developed and very necessary to replace any muscle removed.
The investigative and corrective surgery was done on 9 January 2012, I was confined to bed for several days with a lumbar drain to maintain the cerebral spinal fluid at a safe low pressure while the comp[lex wound healed, was discharged on 18 January and travelled home. The operation was very successful and the investigations revealed a larger than expected defect in my dura at the site of surgery in 2009. That defect having steadily increased in size between 2009 and 2012 due to the flow of cerebral spinal fluid. Perhaps explaining the two suspect strokes for which I was admitted to hospital for which no explanation could be given as CT Scans and MRI scans of my brain showed no problems.
When I returned from Germany I again asked for copies of all the medical files released to the solicitor by the NHS and the GP practice. The solicitor again said he could not do so and all I was entitled to were the brief abstracts he and provided as he had agreements with the NHS that he would not release the files. The Scottish Patients Association confirmed that this was so and other patients had found the same problems. But as I had run my own business for 15 years and been registered with the Data Commissioner to hold information on clients, customers and suppliers and was familiar with the legislation I contacted the Data Commissioners Office and the solicitor released copies of all the document with no further charge.
My interest was in the Neurological medical files not the Urological medical files. But as they were in date order I noted the various urological files associated with my concern about prostate cancer in 2008 as another possibility for my symptoms. Mainly the serious instantaneous pains that brought attention to my spinal problems. The pain GPs and specialists said indicated sciatica or lower back pain. Then I found a strange letter from the very helpful Urologist in 2010. At that time I had requested copies of my medical files, filled in the appropriate forms and discussed my request with the hospital information manager. That had produced very little information and nothing useful. I had been happy with the Urologists who had seemed to do everything to check my urinary and prostate gland problems and in 2010 a consultant urologist had informed me my prostate was relatively small smooth and benign and as he and his colleagues had no concerns there would be no further clinics.
The letter I found informed the hospital information manager that releasing urological files to me should not be done without referring to a psychiatrist, as doing so could affect my mental heath. A psychiatrist was included in the address list. So I checked all the urological files released to the solicitor and found nothing disturbing or alarming as all the information was exactly as I had been told verbally. My prostate gland was relatively small and benign and the urologists had no concerns.
Then I realised there was no medical file in the hospital records relating to the last clinic in 2010, when the consultant neurologist advised no further clinics would be necessary. So I checked the GP practice medical files and found the missing letter from the consultant urologist to the GP. I found a reference to testicular problems I had difficulty haven GPs take any interest in. When a GP had had me admitted for an emergency suspect stroke I had requested an emergency appointment due to testicular pains and scrotal swelling. The GP was not interested in those problems and I found the same when in hospital, the hospital doctors informed me my GP was not interested in my scrotum and testicles they were dealing with the suspect stroke. When I was discharged I refused to leave until my testicles had been examined and I was given something in writing by hospital doctors. I was examined advised to see my GP as there were signs of problems. Eventually the hospital doctors gave me a note for my GP and a prescription for half the dose of antibiotics so my GP could if he considered necessary provide the remainder. That not was released to the solicitor. The first thing I noted in the letter from the consultant urologist was a reference to atrophy and hardening of my testical. The letter as typed advised the GP that another PSA test should be done in April 2011 and a clinic would be arranged. A hand written 'NOT' had been added between the 'be' and 'arranged'. I was not concerned about the correction as that was my recollection of what had been said, there would be no more clinics. But I was slightly concerned about the missed PSA test which should have been done 12 months before. Particularly as my PSA levels had always been high, the explanation being they were affected by my neurological operation.
I telephoned the GP practice and after the usual, you cannot demand a PSA test, its too late that was 12 months ago, a PSA blood test was arranged. The result was a clinic with the ever helpful urologist who again examined my prostate announced it was small, smooth and benign and as before he and his consultant had said before he had absolutely no concerns. But I was not satisfied, I produced a copy of his letter to the hospital information manager and requested an explanation. The urologist was obviously embarrassed agreed there was nothing in my urological files that could cause me any concern or mental health problems. His explanation was he had been instructed to write that letter. The Data Commissioners Office advise that they have long suspected that the NHS, claim mental health problems as an excuse for not releasing medical files, which they cannot challenge.
I produced the copy of the letter from the consultant urologist to the GP and asked about the testicular atrophy and hardening. The urologist confirmed he was aware that I had been made aware of that letter, hence the latest PSA test and clinic. The urologist said to avoid missing any other PSA tests he would arrange a letter of appointment for the next clinic in 2013, to be sent out in a few days. I again asked about my testicular problems, episodes of passing blood and my concerns over possible repeated urinary infections. See later the advice from a Consultant Oncologist. The urologist said he would arrange a testicular ultrasound and have another blood test taken immediately to check for infection or inflammation. As I said above the urologists always seemed to do whatever they could and were always helpful.
The letter of appointment for the next clinic in 2013 arrived as promised but a few days later another letter arrived. The urologist advised that though he had found nothing suspicious when he examined a few days ago, the latest Blood test had shown yet another rise in my PSA level. So a leaflet and prescription were enclosed and a biopsy would be done to ensure there was no problem with my prostate gland.
The consultant urologist advised the 18 needle biopsies would prove there was no problem with my benign prostate gland and a nurse would provide the results in two weeks. That nurse introduced herself as a McMillan nurse and advised a very small number of early stage malignant cells had been found in the right side of my prostate gland. As the cancer was locked within my prostate gland NHS policy was 'watch full waiting' as I would probably die form other causes long before the cancer would be a problem.
But I had had enough and informed the McMillan Nurse, I wanted my prostate gland and the cancer locked within removed within the cancer waiting time limits. I had had nearly five years of what to me seemed to be watch full waiting and had considered my options over that time. The McMillan nurse then informed me, I would have to be assessed as having another 10 years of life, then a Full Body MRI scan and a Nuclear Bone scan to prove the cancer that up until then had been confirmed as being locked within my prostate gland had not spread to other tissues or my skeletal structure!
I met the consultant urological surgeon, who advised he would have no problems removing my relatively small prostate gland by laproscopic surgery, with full nerve sparing and my recovery should be very good. However he recommended that I should see the consultant oncologist, even though I was not considering radiotherapy .
The consultant oncologist apologised and informed me that my discomfort, pain and passing blood since 2008 had been due to undiagnosed Prostatitis. This she had discovered from my medical files and the MRI scan results. The explanation being that prostatitis is difficult to diagnose and can be either due to infection or inflammation. Then the oncologist explained that needle biopsies are like looking for a needle in a haystack and the very fine needles can easily miss very small malignant cells. The MRI scan however had shown the malignant cells were spread throughout my prostate gland and not restricted to a small area on the right side! Perhaps just as well I had not taken the advice and continued with 'watch full waiting'! But see the following!
My prostate gland was removed on 11 December and the next day the surgeon advised he had been surprised to find the left side of my prostate gland was in poor mushy condition. This he said would explain why the needle biopsies had missed the malignant cells. The poor condition of the left side of my prostate had required him to remove the left side nerve bundle the lymph node and some surrounding tissue to ensure the cancer had not spread further! The tests on my prostate gland and the lymph node and nerve bundle had not found any malignant cells in the margin of tissue surrounding those organs. The first PSA test indicated the minimum recordable level but though I have asked I have not yet been informed of the results of the blood test on 3 May 2013!
Almost 6 months have passed and my recovery has been very slow, I have been readmitted to hospital three times the first two for a couple of days and the third for a week. I now have swelling in my left foot and lower leg and will see a Lymphodema PT next week.
The swelling started in January and I had problems persuading a GP there was a problem. A GP reluctantly referred to a DVT day clinic, the ultrasound found no blood clot but the blood test indicated a high risk of DVT. The next week nothing was said but I was told to come back for a third time the following week. When I did a staff nurse advised I would have to see my GP for another referral. I refused to accept that as I had a copy of the discharge document from the previous week instructing me to return. But the staff nurse still refused until the staff nurse who had been on duty the previous week arrived and confirmed I had been told to return for another clinic. The hospital porter wheeled me into the day room saying this is becoming more and more of a problem. He then said the ward said not to collect you when reception called but my boss said take him to the ward and let the nurses deal with the problem.
The previous evening I had noted increased swelling additional to the post surgical swelling and advised the nurse and junior doctor. To my surprise they both said my abdomen was that of a typical male and they could see no swelling. So after another long day in the uncomfortable day room a consultant arrived to again inform me the ultrasound scan had shown no blood clot but the blood test had indicated an even higher risk of DVT than on the first week. I was then informed the blood test on the second clinic had not shown any risk hence the problem when I arrived in the morning. As for my abdomen it was up to me but if I was happy to spend another uncomfortable day I could return in the morning and have my abdomen remeasured to see if there was any swelling. Perhaps thats why the day room is so uncomfortable, to put patients off!
The next day the swelling could no linger be denied and all water jugs were removed. When I asked for water I was informed I would probably have no more to drink or eat until the decision about what to do was made. Late in the day I was informed I had two choices, if I was happy to be immediately admitted a CT scan of my abdomen would be done, but if I wanted to go home and return, the CT scan would be in two or three weeks time. I choose to be admitted immediately. The explanation being the contrast medium used for the CT scan would have to be flushed out overnight to protect my kidneys. I had and several CT scans and MRI scans without flushing but there was no further explanation. I remained in hospital for almost a week, the only thing done was a nightly DVT injection and blood tests. Though I asked repeatedly there was no explanation. The CT scan was said to have found fluid under my bladder where the prostate gland had been removed and no other problems. My abdomen and leg remained swollen but the surgeon and hospital doctors denied any possibility of lymphoma even though the lymph gland had been removed. I asked if another CT scan would be done and after several attempts a letter of appointment was received. I than asked if the contrast medium would be flushed out to protect my kidneys. The answer was no. When I questioned that answer a blood test was taken and I was told no flushing would be required. Again why it is such a problem when a patient asks why is beyond me.
Since then the swelling in my foot and leg have continued, GPs have said they though it was over developed muscles or could not see any problem. An orthotics specialist advised the red tinge on my toes, foot, ankle and lower leg suggested inflammation due to tendonitis and my GP should prescribe an anti inflammatory creme. The swelling continued mainly in my foot ankle and lower leg so a GP reluctantly prescribed support hose. The chemist asked me to measure four points on my foot and lower leg first thing bin the morning and I was given standard support hose which seem to have helped. The last clinic with the surgeon was on 3 May and he insists removing the lymph gland has not and cannot produced any swelling. I hope that is the case and the swelling will be resolved over the next 6 months or so. He did however recommend I join the McMillan support community.
The swelling has continued, its not constant but is becoming more of a problem so I have looked for answers. With the help of this forum the McMillan Help Line and the McMillan Day Care Centre, Lymphodema Nurse in Dundee, by telephione, I have discovered there is a McMillan Day Care Centre in the grounds of the Hospital I was in for that week due to the DVT problem and abdominal swelling. So a specialist Lymphodema PT, will see me next Wednesday and has liaised with the GP practice.
Why it is all so difficult and why patients are not informed of the facilities in their area is simply beyond my understanding. The McMillan Day Care Facility is less than a mile form my home and in the grounds of the hospital I attended for the DVT clinics and the abdominal swelling.
I can understand one misdiagnosis but as you can see from the above it has occurred repeatedly. The GP practice we had been registered with for 32 years put me and my wife off their list just after I requested the missing PSA test and just before the resultant clinic.
Since July 2008, I have found more help and support from out with the UK than within. the American Spinal Cord Tumor Association and their panel of specialist advisors in the USA and Europe have been excellent. The medical facilities in Eppindorf Hamburg are mind boggling in comparison with anything in the UK. The hospital deals with people from a wide number of countries from within Europe. Many of the patients and doctors I met sympathised with the problems with our UK NHS. Quite a difference from the stories we hear about europeans arriving in the UK for free medical care. But then I suppose it depends upon where in Europe those people come from.
The German doctors also said all grades of doctors in Germany and France are paid some 50% of the equivalent in the UK, which allows Germany and France to employ twice as many doctors per 1000 population. But they all said they would not work for the UK NHS, many of them having spent part of their training in the UK NHS. I followed my son-in-law's career from his first days in Edinburgh until he qualified as a Consultant with the NHS and emigrated to Australia. Most of his peers have also emigrated to Canada, Australia, New Zealand. As the German doctors pointed out the German hospitals have no problems retaining the doctors they train and do not have to rely on doctors from other countries. Perhaps all the none UK doctors in the UK NHS are just hear for training and not the money. But I wonder.
abprops
Blimey, abprops!!!!
You have been through the mill and back. I hope everything is progressing well now.
I have found that sometimes you have to push and sometimes you have to push harder but i have been fortunate from the sounds of it. I have found that sometimes the higher up the ladder the more dismissive the doctor can sometimes be.
Good luck.
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