Posted on 09/19/2022 3:57:18 PM PDT by nickcarraway
Ben Jones, 37, said that doctors at Prince Charles Hospital in Merthyr Tydfil failed to spot his tumour on multiple brain scans as far back as 2010
A dad-of-three has been diagnosed with a brain tumour that he says was missed by doctors for 12 years. Ben Jones, 37, from Merthyr Tydfil said doctors at Prince Charles Hospital failed to spot his tumour on multiple brain scans, first in 2010 and then 2014.
After years of being in pain and feeling like something was wrong, Ben decided to seek medical help this year after he started having up to 30 seizures a day. The growth was finally identified on a further scan at the hospital in July.
But, after Ben was referred to another hospital for specialist care, dumbfounded doctors told him the tumour had in fact been visible on his first scan 12 years ago and those thereafter. The mass, which began on one part of the brain, has since spread to three parts of his brain and he will undergo major surgery in October to remove as much of it as possible.
Read more:'One of a kind' teenager killed in bike crash
However, doctors said it is highly likely the cancer will regrow and will have to be managed for the rest of his life. In the meantime, Ben has been forced to give up his driver's licence and stop working as a railway site manager due to the tumour, seizures and the medication he is taking to reduce their frequency.
His best friend, Luke Davies, 37, has started a GoFundMe campaign to raise £6,000 for Ben and his family, so they can survive the next few months without his income. Luke and a dozen other friends will be completing the Three Peaks Challenge in 24 hours to help raise the money.
Ben told WalesOnline he first had CT scans over two to three weeks at Prince Charles Hospital in 2010 after contracting bacterial meningitis. In 2014 he had another CT scan after he was involved in a car accident.
Suffering with headaches for years, he took so many painkillers that Luke, who has been friends with him since their early teens, wondered if he was addicted to them. The seizures that started more recently felt like "mini heart attacks" and left Ben unable to speak or use his left arm.
Galaxy For Business Pro tips for the mobile multitasker Lower A1c | Search Ads How to Lower Your A1c Level Fast by TaboolaSponsored Links An MRI scan in Prince Charles Hospital on July 18 this year finally revealed the cause - news which Ben recalled was "devastating". He said: "I've known for a while that there has been something wrong, but I was not expecting it to be that."
The tumour has caused Ben to have seizures and he's had to stop driving and working The tumour has caused Ben to have seizures and he's had to stop driving and working (Image: John Myers) Two weeks later, he was referred to Llandough Hospital, where doctors revisited the earlier scans and made the shocking revelation. "It was only then they were showing me the scans that dated back to 2010 that I realised Prince Charles [Hospital] had missed it for all this time. It is visible. I could see it, my partner could see it as well," he said.
The doctors at Llandough told Ben that doctors in Prince Charles might have interpreted the mass on the scan in 2014 as a "mini stroke", but Ben said there was no mention of this at the time either. They also noted that that year doctors at Prince Charles Hospital left a referral note for Ben to have an MRI scan following the CF scan - but Ben says this was never mentioned to him and no appointment was ever made.
The cancer, which is stage 2, has grown considerably since 2014. During the surgery in October, Ben will be awake and guiding the surgeons. He will undergo radiotherapy after the surgery to further reduce the tumour's size.
"It's going to come back, they said, 100% it's going to come back. It's just going to be a case now of managing it going forward," said Ben, adding that he will have to have an MRI scan every six months for the next ten years and will undergo more radiochemotherapy if the tumour grows.
Explaining how he might have to give up driving - and therefore his job - again in the future, he continued: "I'm going to have to be assessed a year now from the operation, if everything is removed, in order to get my driver's license back. If I have to have chemo or radiotherapy then, it's going to be another year from that date. So every time I have a treatment or something like that, it will keep setting me back a year. If I have a seizure, it'll go back a year."
Ben (left) and his best friend Luke Davies, who has set up a fundraiser to help Ben and his family survive the next few months while he is not working Ben (left) and his best friend Luke Davies, who has set up a fundraiser to help Ben and his family survive the next few months while he is not working (Image: John Myers) Speaking of the effect his diagnosis had had on his family, Ben, who has three daughters aged 3, 11 and 15, said: "My family has been affected [more than me]. My parents are in bits. My partner is in bits." He is in the process of getting financial help, but as this can take months Luke has set up the fundraiser to help in the meantime.
Luke said: "He hasn't long bought the house, there are a lot of bills to pay, and obviously the mortgage doesn't stop. Before the operation, I just want to try and get him some money so he can pay some bills and relax a little bit - so he goes into the operation with a clear mind and not having to worry about where the next bill payment is coming from."
On Friday, September 23, Luke and his friends will set off to begin the challenge. Ben will also attempt to take part, and said it could be "the last physical thing I do for a while." Speaking about his reaction to Ben's diagnosis, Luke said he thinks the fact the tumour was missed was "negligence and incompetence" rather than "human error".
He continued: "It's just a nightmare, but we finally know that there is something wrong. I'm still trying to process it all. I'm just focussing on this challenge as a way of trying to deal with this." You can donate to the fundraiser for Ben and his family here.
Prince Charles Hospital has been approached for comment. Llandough Hospital said it was unable to comment on individual patient cases.
I learned a very hard lesson about 2nd opinions.
One of the errors is relying too much on a surgeon’s reputation. I inherited one said to be one of the best in the city after my original one died unexpectedly.
The past three visits to get a repair procedure set up that no one else in medical land has any objections in all these months, I got another round of kick the can looking back.
I’d go in and he might talk to me for 5 or 10 minutes and say come back in a month after doing X study or something. I passed the ones I was supposed to.
The last time all of a sudden BMI is a major factor. He didn’t care before. I am a known quantity, I’ve only gotten stronger and improved.
On that visit, his sage wisdom consisted of just drop 40 pounds somehow and see you in November.
That visit ended like all the others feeling sandbagged and sucker punched then depressed for a couple of days.
I got a 2nd opinion from a top surgeon in a sort of unusual manner that I sort of met once. That was as much as I dared dream after all the setbacks. I was prepared for him to say the same thing.
He allowed my wife to come back into examination. The other guy was really good about rushing me out before I could get together mentally enough to even mention a conference call.
45 minutes later there was a surgical plan, recommended paleo diet which is yielding some results, a fair anatomy lesson, and a go for repairs.
We both could have cried in happiness leaving his office. All of that was just an unreal blessing.
Early October is for all the marbles.
The new guy has done about 100 of what I am slated for.
The sad thing is that surgery could have been done months ago. I didn’t get recommended to another one if it was a logistics problem or really not his area. Those would have worked well.
“Incompetent radiologists and doctors, EVERY TIME FOR YEARS!”
He didn’t seek help for the seizures till THIS year AND they found the tumor.
“There is no excuse for this!”
What is your excuse?
I was in a profession analogous to a radiologist. The difference in how a scan is read depends on the quality of the radiologist.
Seeking second and third opinions should not be dismissed.
“Let me think. Was there something that happened just before 2010 that suddenly made the medical profession a slave to the “coding” while ignoring the symptoms of the patient they were supposed to be examining, and whose test results they were supposed to be diagnosing?”
Do you always post fake info?
Something similar happened to me in 2001 I had an aggressive AN (Acoustic Neuroma) removed after 16 hrs of surgery that destroyed Left hearing, I was released from follow up MRI’s after 5 years, around 2007. Around 2010 I had Bone Conduction Implant installed and as part of that was a routine MRI. The MRI showed lots of scar tissue and so the Radiologists misread or couldn’t see the new tumor forming. In late 2020 started having very extreme pain in my lower jaw so the Dental Surgeon did an x-ray and saw the new tumor, big as before, little bigger than a golf ball but this one had wrapped around many facial nerves, so it was inoperable so only choice was Gamma Knife radiation which I had 5 treatments from Dec 2021 to Jan 2022. Luckily it is now dissolving slowly and doing ok for the most part. Acoustic Neuroma’s are noncancerous as they kill with pressure.
Did ACA change that?
CFW may be referring to what we in the states call ObamaCare.
Government run, centralized healthcare.
I believe the British version is called NHS for National Health Service.
Those are fast growing very aggressive cancers
I had something key missed on a CT scan. Thankfully, the missed masses didn’t turn out to be cancer.
I strongly suggest second opinions on imaging in certain circumstances.
here is my public service announcement..if you have joint pain for known or unknown reasons.....go on the whole30 elimination diet to see what is triggering you...or at least get rid of sugar for 30 days.
I am shocked at what sugar did to my joint pain when I added it back into my diet for a day
Horrible situation. Prayers up for this poor man and for his family.
St. Perregrine, pray for him.
Peregrine
Now you have got me interested. What forms of sugar did you consume so that it effected your joint pain, making it worse?
Powdered sugar (real or fake)? I eat a lot of fresh fruits, but I don’t think enough to increase my arthritis joint pain.
On the whole30 diet you are allowed natural fruits which can be high in sugar. You can’t have any other kind of sugar that is added in..not even monk fruit used as sweetener. I drank Almond Breeze banana milk...so my body did have some sugar during this diet. I also ate a lot of fruit...40 blueberries a day.
After the 30 days I binged on some coconut rolls from Costco that have coconut sugar. maybe if I hadn’t eaten 20 of them I wouldnt have had a problem but 10 only have about 4 grams of sugar. I went off sugar for a few days. Ate something else with sugar and it flared up again.
When you go off the diet you are suppose to add one type of ingredient at a time to see what it does to you
the other thing that can cause joint pain is histamine.
https://med.stanford.edu/news/all-news/2019/05/mast-cells-crucial-to-causing-osteoarthritis.html
Yeah, this is how this occurs. An initial scan or two can either miss a small finding or misinterpret it as incidental. Then on a later scan when the new diagnosis is obvious, the previous findings in retrospect are traced to the current finding.
There are only three ways to act on an abnormal imagine study.
1. Ignore it ( bad option).
2. Biopsy it ( which would injure a lot of healthy people if every spot was biopsied, especially in an organ like the brain)
3. Repeat the study at a future interval to see if it changes. If so, this adds more credence to #2.
In this case, it looks like the image was asked to be repeated and it was not. This can happen if the first MRI was done at say an ER, and then the patient goes back to the primary doc and communication about the recommendation to repeat the study was not made.
Thank you for the info.
He had been complaining to them, for years, about the headaches and pain, and they let it ride on complications of meningitis or a car accident. They had the MRIs and they didn’t note the obvious tumor(s).
A good radiologist covers all of the image properly. I went in for a preventative full body MRI and the areas included and reviewed are noted and thoroughly evaluated. I didn’t even have any major issues, yet, a couple things of note were found and now I have a baseline going forward. I have a copy of that whole MRI for other doctors, or myself, to review.
If something is there on an MRI, and someone is already complaining they have strong headaches, you evaluate that MRI properly.
You can defend bad, incompetent doctors, but I sure won’t.
What’s your excuse?
i would say investigate what histamines are doing to you. it might be a source of flare up for you and you had no idea.
if you ever get your DNA done at 23andme you can look for alterations in the MTHFR, AO1C and HNMT genes that affect how you process histamine.
My wife was diagnosed with massive glioblastoma tumor last June. She was similar. Forget some passwords, within a week pretty much lost the ability to speak amd huge memory loss. She was in the last stages. Surgery, 30 doses of radiation, 72 doses of Temodar, and taking fenbendazole, she will be cancer free for 1 year in October.
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