Jennifer Bell: Collapsed at home

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These stories are so sad I feel for all of you and your families, ive been having severe headaches when I stand up I get shooting pains in my head what take my breath away and sometimes make me loose my balance, also my heart pounds like it's beating out of my chest. I'm slightly worried but my doctor will just put it down to stress. My friend was 18 when she died of very large brain tumor, her doctor passed her headaches off as stress it wasn't until she deteriated and went hospital till she was diagnosed after that her head collapsed down one side she was given months to live and died within a few days. I don't blame the doc but I do think he behaved in a very ignorant and uninterested way.

- Michelle, Coventry, England, 10/05/2011 07:00
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My 32-year-old daughter's chronic headaches were diagnosed as viral for three months. Finally, when she began projectile vomiting we stepped in and took her to Emergency. They told us her standard neurological signs were fine, despite our insistence that we had seen significant cognitive changes, and they just treated her vomiting. We were dismissed as over-anxious parents. Finally I pushed her GP to refer her to a neurologist. Despite giving the specialist a written list of cognitive changes, she also said there was no problem. I begged her to send us over to the hospital for a CT scan, even if it was just to get rid of me. Obviously skeptical, she made the call and as soon my daughter had the scan, all hell broke loose. She had a golf ball-size growth in the center of her brain which had bled, which caused the severe pain. It was pushing on a ventricle, hence the vomiting every time she sat up. My daughter was in ICU for four-weeks before the surgeons decided to operate: they removed a large AVM (arteriovenous malformation.) We were lucky, she pulled through. In the end, everyone from the neurologist to the Emergency staff apologized for their negligence. My message to anyone suffering from chronic headaches accompanied by noticeable changes in cognition or memory is insist on seeing specialists and getting a CT scan or MRI. Parents must advocate for their children: we know them best. Doctors are not gods and all brain tumours/growths are not alike.

- Vcki O'Brien, Vancouver Canada, 30/04/2011 21:41
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My 32-year-old daughter's chronic headaches were diagnosed as viral for three months. Finally, when she began projectile vomiting we stepped in and took her to Emergency. They told us her standard neurological signs were fine, despite our insistence that we had seen significant cognitive changes, and they just treated her vomiting. We were dismissed as over-anxious parents. Finally I pushed her GP to refer her to a neurologist. Despite giving the specialist a written list of cognitive changes, she also said there was no problem. I begged her to send us over to the hospital for a CT scan, even if it was just to get rid of me. Obviously skeptical, she made the call and as soon my daughter had the scan, all hell broke loose. She had a golf ball-size growth in the center of her brain which had bled, which caused the severe pain. It was pushing on a ventricle, hence the vomiting every time she sat up. My daughter was in ICU for four-weeks before the surgeons decided to operate: they removed a large AVM (arteriovenous malformation.) We were lucky, she pulled through. In the end, everyone from the neurologist to the Emergency staff apologized for their negligence. My message to anyone suffering from chronic headaches accompanied by noticeable changes in cognition or memory is insist on seeing specialists and getting a CT scan or MRI. Parents must advocate for their children: we know them best. Doctors are not gods and all brain tumours/growths are not alike.

- Vcki O'Brien, Vancouver Canada, 30/04/2011 21:40
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My 32-year-old daughter's chronic headaches were diagnosed as viral for three months. Finally, when she began projectile vomiting we stepped in and took her to Emergency. They told us her standard neurological signs were fine, despite our insistence that we had seen significant cognitive changes, and they just treated her vomiting. We were dismissed as over-anxious parents. Finally I pushed her GP to refer her to a neurologist. Despite giving the specialist a written list of cognitive changes, she also said there was no problem. I begged her to send us over to the hospital for a CT scan, even if it was just to get rid of me. Obviously skeptical, she made the call and as soon my daughter had the scan, all hell broke loose. She had a golf ball-size growth in the center of her brain which had bled, which caused the severe pain. It was pushing on a ventricle, hence the vomiting every time she sat up. My daughter was in ICU for four-weeks before the surgeons decided to operate: they removed a large AVM (arteriovenous malformation.) We were lucky, she pulled through. In the end, everyone from the neurologist to the Emergency staff apologized for their negligence. My message to anyone suffering from chronic headaches accompanied by noticeable changes in cognition or memory is insist on seeing specialists and getting a CT scan or MRI. Parents must advocate for their children: we know them best. Doctors are not gods and all brain tumours/growths are not alike.

- Vcki O'Brien, Vancouver Canada, 30/04/2011 21:39
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Dreadfully negligent!

Brain tumors can exist without any symptoms at all. I was diagnosed suddenly with a "grapefruit" sized brain tumor and had no previous symptoms.

- Kristi Bengtson, Atlanta, GA USA, 11/10/2010 17:40
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The brain tumor symptoms and stress are quite similar, so it can happen that, the doctor could not make out the exact cause of headache. If she had some severe reactions like vomiting, nausea, weakness or loss of feeling in the arms or legs, Stumbling or lack of coordination in walking, Abnormal eye movements or changes in vision, Drowsiness,Changes in personality or memory, Changes in speech then the doctor could have taken more firm steps. Its not always that doctors are wrong.

- brain tumor symptoms, FL USA, 09/09/2010 07:21
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i went to a and e with breathing problems and had x ray to my chest and loads of blood tests then i was given some amoxlcilln and sent home with no clue what it was then just over a month later i went to my gp who then done some blood tests and told me i have cancer, i then went to the hospital for another chest x ray that showed somthing up then i was admitted for 4 days and was told that i have cancer of the kidneys / lungs / bones and brain then i was told i only have around 6 month to live , so i keep asking myself why this was not picked up in a and e

- matt, sussex,uk, 15/07/2010 04:00
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i have beeen having headaches for almost 6 months now have had ct scans ...eeg ... and yesterday had MRI /MRA and dont know the results yet but a little worriede cause this isnt normal . My husband thinks it is stress related but i feell it is not . It goes on from moring till night but really worst in the night . Does anybody have the same symtoms ... very worried ... let me know...

- Lisa, Port Huron MI, 17/06/2010 03:48
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god, this article makes me feel sick. Jennifer told a doctor about her symptoms and they didnt even do anything soon enough. Doctors can never be 100% right. My nan has a brain tumor and i certainly wouldnt be happy if the same happened to her. Its ridiculus.

- Kara Mitchell, england, 22/03/2010 13:06
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I had severe headaches for 14-15 years and felt generally very unwell all I kept being told was I was depressed and the strange feelings I was getting were "in my mind & not real". In 2002 I became so unwell I could not longer work. I have seen so many doctors who have just dismissed me as an inadequate who was suffering from mental health issues. I felt like I was shouting in the wilderness because nobody would listen. It caused me relationship issues as I was insisting something was very wrong and even my family were saying to me you have seen so many doctors and they all say there is nothing wrong. Finally in 2005 something changed and in spite of all the doctors opinions I knew there was something seriously wrong with me as I was loosing my peripheral sight on my left It took another 1.5 years to get someone listen. It turned out that I had a massive slow growing tumour in my brain called a meningioma and it had grown so large that it had completely blocked a major artery in the left hand side of my brain. Blood was trying to get through by using smaller veins and overloading them causing bleeds into my brain.My Advice to anybody is if you have continuously have headaches and other strange symptoms insist on having an MRI or at least a CT scan.If I had stuck to my belief from the beginning I would have saved myself 16 years of ill health 2 operations(one of 11.5hrs + one of 5hrs )and 3.5hrs of radiotherapy.
DOCTORS ARE NOT ALWAYS RIGHT !!!!!!

- Ian Scott, Dartford, 25/02/2010 14:13
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so sorry to the family. i have been suffering from horrible headaches for 2 years now. my gp told me i was taking to many painkillers! i stopped but symptons got worse. i now have a stiff neck like my head is too heavy to be supported and numb left arm. i went to see a different gp who has referred me for test at the hospital. this whole thing took 2 years and i still havent had any tests yet as my appointment isnt untill the end of july. i just hope gps get there acts together so other people dont have to worry!

- Kaz, gloucestershire UK, 14/07/2009 15:24
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this story is really sad my mum had headaches for years but luckily only were migraines and were aided with medication should i be scared for my mum

- Mariah, australia, 18/04/2009 07:04
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My headaches were put down to hormonal changes in my body and just growing up.
It wasn't until I had a seizure that they sent me for a CT then a follow up M RI scan that they found my tumour, luckly I was only young and it was classed as a Pilocytic Astrocytoma!

- Sharna, Australia, 17/10/2008 13:01
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I've been having headaches for nearly a year now and was also told that its stress related. I was put on a preventative medicine which was very strong and did help with the pain, but taking the dose down a bit now the headaches are still very much there. I also feel some problems with sight and dizzy. I'm now contacting my neurologist to insist on getting a scan that they told me they were sure I didnt need. I feel really scared too... I wish you all the luck in the world Kelsey. It could be heaps of things so dont worry yourself too much - it will make you feel worse. Let us know what happens.

- Cheryl, UK, 11/09/2008 21:09
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Six years ago, when my husband was 51, he went to the doctor's with severe headaches. The first doctor diagnosed stress, a stock answer it seems. Fortunately a week later he saw another doctor in the practice, who had all the relevant tests carried out, finding out that there was some swelling somewhere in his body [from the blood plasma testing]. Sinclair had his tumour removed, but it was a grade four glioblastoma multiforme, the very worst kind. It was removed quickly and radio-therapy followed six weeks later, but he only survived for four months, after the operation. We had a lot of wonderful years together, but it's never enough, is it? My heart goes out to Jennifer's family. I feel that the doctor in question was extremely negligent and then tried to justify her mistake. It really does beggar belief.

- Cheryl Wilkes, West Yorkshire England, 03/08/2008 21:42
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haron, Diss, Norfolk:

Get a different doctor. I hope, for your sake, you have already done so.

- Matt, USA, 19/07/2008 02:24
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I just went to the doctors cause I am getting headaches everyday all the time and they put me into bed. At first we thought it was just my eyes but then we had gotten contacts that didn't help and I have 4 different medicines that don't help and I eat healthy and the headaches seem to not go away . We had went to the doctors and she said it is stress related and I am going to go get a CAT scan this week and I am wondering if I should be worried about it being a tumour or not?

- Kelsey Simon, Pittsburgh, Pa, 15/07/2008 05:54
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Hi. I have recently been diagnosed with a brain tumour after having two seizures over the Christmas holidays. Ten years ago, I went to my OB/GYN, and to a neurologist, and to an endocrinologist because I had numbing hands and feet on my left side and my periods stopped suddenly. I was put on birth control pills and told I had carpol-tunnel syndrome and told to wear and wrist support on my left hand. The wrist support did nothing to change the situation. I have a tumour in my right temporal lobe, which is now rather big and intertwined throughout my brain tissue. It would have been nice to know about it earlier than now. I have three school age children who need a healthy mother. I live in the USA where the doctors are happy for you to pay for a battery of tests but no one suggested an MRI. When I lived in the UK for 3 years, the local doctor said my numbing and stiffness and heart was due to stress. I think doctors on both sides of the Atlantic are hesitant to authorize an MRI which is such a simple test.

- Sarah Laird, California, USA, 31/03/2008 21:36
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I went to my doctors complaining of headaches for over two years he also told me it was stress related and told me to take paracetamol which didn't touch the pain. I kept going back only to be told the same thing. I had a seizure in May 2006 it was only then that another doctor took my headaches seriously he refered me to the Norwich and Norfolk hospital for scans they eventually found a tumour. In August I was put on a waiting list at Addenbrookes hospital where on November 3rd 2006 it was removed. I was off the road for 18 months, I am now back driving and suffering headaches again. I have been to my doctors they are not taking me seriously. What has a person to do before they do?

- Sharon, Diss Norfolk, 25/11/2007 18:38
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This story is heartbreaking, but all too familiar to many of us. Bless Jennifer, and the many other people like her who die needlessly.

- Bebe Bahnsen, Columbus, Georgia, USA, 23/11/2007 14:51
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I can relate to this. It took over 3 years to diagnose my tumour. It was discovered after my GP "gave up" and referred me to a pain clinic. It still took over 12 months to see a consultant and get a scan. If I hadn't persevered the outcome could have been worse.

- Maureen Humphrey, Preston, England, 15/11/2007 19:23
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Unfortunately this is very common. I feel horrible that things like this happen, but unfortunately I'm not the least surprised. Someone I knew died of ovarian cancer because doctors wouldn't take her symptoms seriously. Several others I know have been diagnosed with eg. depression, panic disorder, psychosis or eating disorder and their symptoms have turned out to have had an organic cause, a serious (though in all cases non-malignant) illness. Some of these conditions could have been diagnosed with a basic blood test! One of these people had her epileptic seizures diagnosed as "panic attacks" and another was told her back pains were caused by the relationship she had with her parents (she had a hereditary musculoskeletal disorder).

What's in common in all of these cases? They are all women. I'm not saying this can't happen to men, but sadly doctors seem to think women can't have somatic illnesses, only psychiatric and hormonal problems, and stress, of course. If you feel like there is something physically wrong with you, fight for your right to get diagnosed!

- Maija Haavisto, Helsinki, Finland, 30/10/2007 15:51
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After having years of headaches treated as "stress related" I was found to have Arnold Chiari malformation. A defect where the brain drops down into the spinal column, pressing against the spinal cord and brain stem.
You bet there was stress, for the many years my doctors felt my headaches were "all in my head"!

- Mamie, California, 18/09/2007 20:15
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My father died of a brain tumor 5 years ago. We had taken him to the doctors on several occasions. The doctor diagnosed him as having depression, due to the fact that my mother was leaving him. A week later he collapsed, he was taken to the hospital for tests, he was booked in for a CAT scan but the machine was not working so he waited 3 days before this was carried out. It was there that they saw the large growth and he was transferred to Kings College Hospital. Before surgery we were told the pluses and minuses of the surgery. After the surgery the surgeon told us that it was worse than they had initally thought and gave him 2-9 months, he died 1 week later. They told us that the tumour had been there for a long time. It seemed to me however that once he was diagnosed he seemed to deteriorate rapidly. I went back to see the surgeon some weeks after my dad's death. He told me that cancer research is not further now then it was 20 years ago and that brain tumours were the most baffling. It makes you wonder, why there are no reeal answers/treatment. If brain tumours are the most baffling, then why not put more into it? My dad was only 58, he had 5 grandchildren and one one the way, he had so much life in him and he enjoyed everyday of it. The surgeon also told me that GPs follow a check list, so when the GP said my dad had depression, this was just one of his 'ticks in the box', how many boxes are to be ticked before this is taken seriously?

- Lynne, Mottingham, England, 21/08/2007 08:55
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How unfortunate. It's really sad to see things like this happen. If someone can have a tumor and not know about it, it means this can happen to anyone.

I've had a lot of headaches in the past two years but have always passed them off as stress related. Scary, really scary.

- Mike, San Antonio, United States, 21/08/2007 07:55
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I have a brain tumor that was recently diagnosed from the same symptoms and I feel very sorry for this girl and her family.

- Jichi, Los Angeles, CA, 21/08/2007 07:55
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This is terribly sad. I hope the doctors and neurologists who took part in mis-diagnosing her own up to their mistakes and don't try to point blame on others.

- Kristen, Seattle, USA, 21/08/2007 07:55
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Very sad. I only hope the medical world learn from this. GPs in my opinion are given too much respect; in that they believe they can diagnose any problem that comes their way. The phrase ‘Jack of all trades, master of none’ comes to mind. In my experience GPs can be very arrogant in the way they treat their patients. If they are not sure they should always refer a patient to an expert in that field, only problem is they don't because they know best. But as in this case that's not always true.

- Paul Byrne, London, 21/08/2007 07:55
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Exactly the same thing happened to a friend of mine 10 years ago, and the GP's incompetence cost him his life too. Why are our GPs still failing patients in such a monumental way? I had another friend die because her GP failed to spot she had toxic shock syndrome - indeed he hadn't even heard of it. Perhaps if GPs were held more accountable for their actions they may take a little more care. I understand they are only human and will inevitably make mistakes but it seems they make more than they should.

- Anon, London, UK, 21/08/2007 07:55
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