How do you make specialists sit up and listen
Posted by: kfactor
18th Sep 2012 06:18pm
I have recently been to see yet another neurologist for help with chronic migraines and unexplained seizures, black-outs. I was confronted by an egotistical, very opinionated young woman who tried to explain my problems away by the fact that I wasn't a very happy child, and that I was making up stories to get attention! You would think that was pretty insulting, but then I had to pay this person $320.00 for the privelege of her time.
I have suffered with chronic migraines my whole life, I have never had a day in 50 years without pain. I have sought out medical advice from some of the leading neurologists and neurosurgeons in Brisbane and have undergone 2 extensive and very disappointing brain surgeries. Unfortunately the outcome is worse than before. During this time I have been on numerous medications to help me function and cope with the pain - with little or no relief. I also entered the multidisciplainary pain clinic 12 years ago to come off all the addictive and harmful medications ie morphine, methadone, antidepressants, anti-inflammatories.
What upsets me most is the arrogance that I have had to endure at the hands of these specialists who cannot or will not think outside the text book. I have found that if you approach someone with some knowledge that you have looked up on the internet, they label you as someone who is too well versed and therefore must be seeking drugs. I like to be listened to and treated lilke a human being who is in pain. One neurologist was discussing my latest MRI and announced that I don't suffer with epilepsy (textbook type), but there was a problem but it wasn't her field. REALLY!!! NOT YOUR FIELD!! Yet another shining example of the quality of medical professionals.
Can someone please tell me how to make these people listen! If they don't know the answer then own up to it, and hopefully suggest another option. Just don't say that the pain doesn't exist. How about actually learning to listen, to try and understand the debilitating effect that has now left me housebound, unable to drive, or work, or socialise or just plain live. Pain I have to live with but please give back some dignity to everyone who has pain.
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Comments 16
Possum
Hi I don't suffer from your illness, but a friend of mine eats milky way bars when she feels a headache coming on and says it helps a lot, worth a try, tell the doctors that they don't what they are talking about, that makes them listen or just get up and walk out and refuse to pay as they didn't do what they are suppose to do. That really gets up their noses.
Moi
I am so glad that I was able to be of some assistance to you!
I also actually have falls and often feel dizzy, HOWECER it is definitely, due to what my Physician has told me, due to my Lupus!!
Remember if you decide to be tested for it, the results may come back negative, when in fact they are positive!! It is a very hard condition to diagnose!
You should have more than one test and over a period of time as it took 23 years to get my diagnosis!! Unfortunately Dr.'s do not seem to know much about it!
I have been unwell all my life, so I know what you mean!!
I have been bed-bound - so tired that I feel as though I have been given a shot of morphine! I have a list of allergies which I carry around in my bag in case of an emergency as most of them are medications!! I even took an allergy tablet once to combat an allergic reaction - guess what - I WENT INTO SHOCK AND PASSED OUT!! ( caused by an allergy to the anti-allergy tablet!! How good is that!!!
I also have paralysis in both shoulders. The condition is really just a description of the symptoms as it is so rare that there have only been three noted cases in Auatralia!! To get it a second time 15 years later is deemed impossible! I did it though and when I went to my Neurologist (he had a student sitting in ) he turned to the student after I explained my symptoms ans said' Nanette has just given the most accurate and perfect text book description of - NEURALGIC AMEATROPHY!!
I BELEIVE this also comes under my 'LUPUS UMBRELLA!' as the first time I had it in my right arm, I was told, when it was finally diagnosed after approx. five years, that it was thought to be an allergic reaction to the 21st century!! Now, the second time, in my left arm, I was told that it is thought to MAYBE A VIRUS!!! - I THINK NOT!! What happens with this condition, which is excruciatingly painful 24/7 , is that the nerve which feeds the muscle at the back of the shoulder is deemed by ?? (I think my immune system!!) to be 'the enemy', so is destroyed thus leaving the muscle to waste away, leaving permanent paralysis in the shoulder!!
I wish you well, you sound as though you have at least kept your spirits up and are a very determined lady !! So, from one who really understands!!, I HOPE ALL YOUR DREAMS COME TRUE AND YOUR LIFE TURNS INTO SOMETHING CLOSE TO PERFECT!
BEST WISHES TO YOU- - NANETTE ������������
Moi
It sounds to me as though you (as I also do!!) , suffer from CHRONIC HEREDITARY MIGRAINE!!!
I have also suffered SEVERELY for most of my life!! Did you know that you can also have a migraine with all the symptoms, EXCEPT THE HEAD BANGING, BRAIN RIPPING PAIN!!
I recently had a 'Migraine', which went on for just over FIVE MONTHS!! My specialist told me it is what is known as 'AN EVERY DAY MIGRAINE !!'.
I was mortified and asked him - ' do you mean every day for the rest of the week?? Or every day FOR THE REST OF MY LIFE!!'. He explained that these 'Migraines' can last EIGHT MONTHS OR MORE!!, waxing and waning as they co-exist with you!
I have found over the years, the most useful 'tool' which you can possess, when going for an appt. is 'KNOWLEDGE!' - IT LITERALLY GIVES ONE POWER!!!
I have had Specialists asking if I am a Dr.! When I say NO!, they are still convinced that i must work in a very high position within the Health Profession!. ������������
Their attitude then changes as I do not treat them as 'God', just a person, the same as me! I have found that this puts them off balance, so to speak!
I hate to think that you have had an operation as I can't imagine what that would do to help!! Maybe you should seek the help of another Dr.!!! Not a Neurologist, however a Physician!!
I also suffer from Lupus, which is almost impossible to diagnose as the tests will, for some reason come back - NEGATIVE, when they should be POSITIVE!! Basically one needs to keep on having the tests over time to find out!
I mentioning this as being an auto-immune disease, it can attack any organ in your own body (your own immune system, that is!) at any given time! E.g. I have had Hepatitis several times and very SEVERE attacks!! People then ask me - was it B or A etc!! They simply do not understand that it was none of them and that in fact, 'Hepatitis', is in fact a 'loose term', used for any disease of the Liver!!
Why am I mentioning Lupus, when you are asking about Migraine!! I personally feel that in some cases when (I think I have a Migraine), it is in fact my lupus!!
I only recently found out that it can inflame the blood vessels in the Brain, causing excruciating headaches!! I think, in fact, that was really the cause of my 'every day Migraine'.
My last question to you is- do you ever have a lot of allergies, suffer from hives which appear very suddenly, any other skin rashes or conditions??, as this is to me, a complete Giverway that it is VERY POSSIBLE THAT YOU ALSO MAY BE SUFFERING FROM LUPUS AS WELL AS CHRONIC, HEREDITARY MIGRAINE!!
For me, it has Been a very long road, basically working through it myself!!
I find that the only medication which works if I take it with a VERY STRONG CUP OF COFFEE!! Is IMIGRAN!! Interestingly, it did not work when I decided that 'my Migraine' was an attack of LUPUS INSTEAD!!
May I suggest that you get 'on the web again, don't look for Migraine, instead look for Lupus and also (what I have-which is a very rare form of Lupus (lupus is like 'the umbrella), URTICARIA VASCULITIS!!! - you will find it branching off, under Lupus!!
Good luck darling, my thoughts (as a fellow sufferer) are with you! I wish you success in your venture for an answer! As I mentioned before - go and see a physician and do not tell him a thing!! Let him work out from back at the beginning!! (obviously, you need to tell him you have RAMPANT HEADACHES!!!
I hope this has been helpful and I wish you all the best! - NANETTE ������������
kfactor
Hello Nanette, thank you so much for your detailed answer. I do have allergies - penicillin, pethidine, norspan transdermal pain patches, bactrum and several food allergies - red meat, sea food, avacado, egg plant.
I'm so sorry to hear that you are a fellow sufferer, there are more of us than the medical world knows. You mentioned the inflammation of the blood vessels in the brain, I experience terrible dizziness and nausea when I have a shower, and more times than not, I have to lie down straight away or risk falling down. Recently after seeing my gp, he mentioned that he feels that the fluid in the brain isn't flowing correctly which is why I get these symptoms. He likened it to pushing water through a straw which has a bend in it, and the bend gets blocked back. His comment was correct. Luckily he is one of the first doctors not to treat me like an idiot. He keeps a constant vigil on my blood tests - liver damage from years on medication.
Thank you for your suggestions too, they are very helpful, and be assured that I will follow them through. Hopefully we can work something out, my life has been so affected by all this, and I just want to be better. Here's hoping!!
I hope you feel better soon too. Let me know how you get on.
Cheers
briar
First always take some one with you, write down all the things YOU want to discuss with this person.before they start right after you have said hello, say you would like to discuss some things you have written down and put your sideof things and how they are affecting you. dont let them bully you letters after their name is no excuss to talk over you and your concerns. find some one who will listen to you. good luck
kfactor
Hi Briar - Thank you for responding to my problem. The one thing I have always done is to make notes before I go to an appointment, because there are issues that I need to address. Sometimes it is really difficult to have my husband with me, but he attends as many as he can to give his account of what he witnesses. He is as frustrated as I get. I have found the more letters some doctors have, the least common sense they possess!! Here's hoping I can find the right person soon.
Bart
My doctor kept having me get blood tests and glucose tests for diabetes. I may be overweight and 60 years of age, b ut why do we all have to "Fit the Mould".
My mind set is that I REFUSE TO GET DIABETES!
There is just no way that these medicos can think that each of us is an individual!
Who do you take with you when you see these idiots?
Ca your husband, boyfriend or just a friend accompany you and have your permission to speak on your behalf? For, male docs just treat a woman as an inferior. To get heard, you really need to have someone big and brash to be with you ... someone who just will not take their crap!
Not her field? Then how can she say you have another problem if she knows nothing about it?
I am afraid to say that I was one of those idiots who got drunk and drove - 15/3/1975 - I am still paying for it!
The result, I have lived with pain every day of my life, since! I know well what you are going through.
I agree with the term "arrogance" as most doctors have it, no matter what field they are in.
I don't know if they allow this - but - if you need someone to discuss all this with then ... indigart@gmail.com is my email address.
Bart Harrison Murray Bridge SA
Bart
March 1975 I got drunk ... I drove, and still paying for it 37 years on ...
Neurology at Royal Adelaide Hospital in 2003, while I was living in Port Augusta, 300klm away, kept sending me appointments for the Tuesday 2 days before pension day. I would usually receive it on the Friday before! No matter how many times I rang and told them ... letter would arrive on the Friday with 4 days notice to be there! So, here I was getting agro with them. A friend was driving to Adelaide on one of those days, so, finally, I got there! I managed to make 3 appointments in a row as my friend was then regularly attending a clinic on Tuesdays. What did I get? Each time I saw a NEW registrar, or, trainee doctor who put me through the same series of questions each time I was there.
Third time, I blew up! demanded to see the bloke I was supposed to see and got fobbed off! That was when the agro turned to cold calculation ... I went down to A&E & asked where the Medical Super's office was. Walked in, told the receptionist who I was, what I had to complain about and further that I was considering going to the AMA (Australian Medical Association) and possibly the media.
That is also your right! Approaching the media, if you feel that this is the only way to get justification, is through either, A Current Affair, or, Today Tonight.
It does not surprise me that there would be many more that follow your example ... those sick of the idiot hospital system will also jump on the band wagon!
The other thing is to see your local Member for Parliament, also with the suggestion that you are thinking of going to the media ... there may be a panic on that as they do not want there name associated with anything if they refuse to help you.
They wanted to send me to the pain clinic in Adelaide ... the list is 7 to 8 years long !!!!!!!!!!!! What a Joke!
There we have the same bulldust going on ... after 37 years of living with pain, I know just what my body is doing and how much it can take ... pain clinic????
What can they teach you about handling your pain?
Fact! only 5% of the pain one feels is real .. the 95% is the mind taking over.
If someone experiences chronic pain, then there is something going on that the specialists should study properly, NOT just make an assumption, or, like they did with my Mum - treated her as "Houswives Syndrome" meaning - its all in her mind. She passed away in 1976 after having cancer in the upper intestine and liver, GP's assessment - Chronic indigestion! Mum was 56 !
Regards, Bart
kfactor
Hello again Bart, your reply was fantastic! I know the value of a good temper tantrum! After being in the pain clinic at the Royal Brisbane, I was then treated as an out-patient for a couple of years. The woman that I would always see, always started every conversation with "Well at least it is not a tumour!" Every single time she would say that to me, I wondered what she would finally say if there was one. She was so condescending, irregardless of my husband or my daughter being there with me. One particular appointment I was handed over to a registrar who was so arrogant, impolite, and downright rude to me. I wasn't in the best frame of mind anyway with the migraine and I don't normally cry in public, but she had me so flustered and so frustrated that I burst into tears and really cracked up. She also didn't realise that I could read upside down, and in my chart she noted that I was borderline personality disorder!!! I yelled at her to get out of my sight, I wanted to see the one in charge and I'm not leaving till I do! I stormed out of the room and sat in the very crowded waiting area condemning them for their lack of compassion and sensitivity. After an hour, I saw the one in charge, explained why I was so upset and demanded to be treated like a human being and not just another statistic. I also ordered copies of my medical file and took action to the disciplinary board of the hospital. They couldn't do enough for me after that - but why did it have to get there? If you're in the medical profession you have to understand that the people you see are not in total control of their reactions because of stress of the unknown, the surroundings are uncomfortable, worried about outcomes. If you can't show compassion or empathy then maybe the medical world is not for you. Maybe they should experience what their patients experience and then see how they feel!!
I really hope there is assistance out there, not just for me and my problems, but for all of us. Don't we all deserve that? And here's hoping that we may all find and benefit from it.
Cheers
Bart
If you are attending Royal Brisbane or Mater then the way to go is to the top .. The Medical Superintendent! I had to use this recourse in 1977 when the current registrar for Sir Adrian Von der Borch (my surgeon) had my leg out of plaster and it was still broken! I walked into the Med Super's office and demanded to see the man in charge. 1 hour later I was out to it and having the 7th op done on my leg. You husband needs to do a "jump up and down" act to get these people to take more notice. Then apologise to the staff for doing it. Then most of them will be more sympathetic and not just fob you off to sit and wait. IT WORKS! I had an older chap in Centerlink showed me how he gets there attention by cracking up, then, apologising profusely to the counter staff saying "its not your fault, its those clowns out back". A wise man once stated ... The world is but a stage and we are merely actors playing our part! SO .. play these clowns instead of them playing you!
Bart Harrison.
kfactor
Hello Bart, thank you so much for your reply. When I can, I normally take my husband with me to appointments so he can say what he notices. Especially about the seizures - he has on many occasions had to explain what happens as I don't have much of a memory of the episode. He has been so frustrated with some of the opinions, and easily understands why I get so upset. He accompanied me to my gp recently and said straight out that I needed help urgently, explaining that I can no longer walk around a shopping centre on my own, driving is totally out of the question, he has found me on the floor more times than he cares to count.
To date I have fractured my left wrist 3 times and my right wrist once in the past 5 years as a result of seizures. Something really needs to be done, it's just the matter of finding the right person who has the intelligence and the brain to think out of the box. As you said, we don't all fit the mould - then reshape it!! Learn from us that there are people who are living with horrendous pain, not just me, but many of us who just need the help we deserve.
simla
Hi Kfactor, I also had migraines headaches for years. I finally found a GP with a special interest in womens'. medicine who was the perfect "listener.mine must have been caused by an underactive thyroid(one that didn't show up in the normal blood test)and also type 2 diabetes. once these two factors were addressed, the migraines disappeared. Do you have any of these I wonder? there is a type of diabetes that causes a blood condition called "porphyrin uria" which is easily detected, the urine changes colour if exposed to air and light. in this, there are often allergies associated with seizures.Another breakthrough made lately in Australia, links the over-use of paracetamol to migraines. Seems if used constantly. as most of us with headaches do, it can actually change the pain threshold in a negative manner. I'd also get an Xray of your neck to see if all vertebrae are in alignment, often a cause of headaches. A chiropractor who uses the reflex/trigger method can be of help. Good luck in finding the cause of yours,don't give up, there is help out there...if you come to Tasmania you'll find the Rheumatologists will listen, and track down the cause. Their speciality is not just arthritis (rheumatism) as is sometimes assumed, they investigate the causes of illnesses( epistemology).Good luck-Simla
simla
Hello again kfactor, thanks for your reply. I just read the other replies, they all have good advice I think the physician would be an excellent option, as they look at the way the body functions. The other thing mentioned, about not saying anything AT ALL in the beginning is a good method. This is what I did with the Rheumatologist. He said it gave his intuition a chance to work without other preconceived ideas(belonging to others,and probably wrong, getting in the way)He asked a lot of questions for over an hour. he said mine could have been Lupus too, in the early stages. Stresses would increase chances of it developing.So important not to be under stress. Meditation , relaxing tapes of music, sea, birds, each helped me. What you said about your bone degeneration is also a problem I also have. the enzymes in pineapple (bromelain), and pawpaw(papain) have helped remove the excess protrusions which stick into the spinal canal, pushing onto the spinal cord. That info came from an eminent vet who cured dogs with spinal injuries. (I was a vet nurse and saw some miraculous treatments) took 6 months of daily treatments for the dogs. Vegemite was necessary too for the vit B and yeast enzymes He advised vegemite on toast every morning,on toast for dogs, cats and people!(not if you are allergic to yeast) hope that helps, its something simple you can do yourself. Cheers Simla
kfactor
Hello Simla - thank you for your very useful reply. The gp I'm under at the moment is a wonderful man (indian) and he keeps a constant review of blood tests. Mainly the liver function test as prolonged use of panadol is detremental to the liver. Actually it was thanks to a routine blood test that I found out I have bad liver damage and was told not to drink anymore..I don't drink, so that was the catalyst that took me to the pain clinic. All those years on the medication have really played such havoc but no one took responsibility for it. I have found the nurofen gives me a fuzzy headache so I avoid that. I did manage to have my neck xrayed and there is degenerative damage near where they operated the first time. And I had a bone scan recently which showed the extent of arthritis and degenerative changes in so many places. All this has been very hard on my family as well, but I'm lucky that they are here for me. Thank you again
mike
i have been going to the pain clinic for 3years i have tryed to tell him about my pain so this time i tryed to tell him but he went on about what to put me on next as i have had it all from the patch to tablets I told him to lissen to me and what i have to say he look at me and said ok tell me so i did and this time he lissend and got it right now i dont have pane in my legs at night the only way i could stop the pain was to stand up pain wood stop so wat i am saying to you is to stand up to him and make him lissan to you after all you are paying him to lissan sorry about my spelling hope this workes for you
kfactor
Hi Mike, thank you for your reply. I'm so pleased that someone finally listened to you. You mentioned the patches - do you mean the transdermal pain patches that last 5 days? How did you find they helped? I'm asking because I used them for probably 5 months before giving them away - I developed second degree burns from them. Everyone is different though, but I'm glad your legs are getting better. Pain is not pleasant to live with is it! Hope you continue to heal.