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AVM Survivors Network

Inadequate diagnosis for young women / Gender issues

#1

Dear all,

I have recently stumbled upon the following article, and I think this is a really important and serious issue in Medicine in general, so I would like to raise awareness to the topic:

“When a young woman has a stroke : Hemorrhagic stroke in young women often inadequately diagnosed and under-treated”, Sharon Dale Stone, 2007.

I’ve reached it while pondering about my partner and wife. She is fighting and recovering from a cerebellar AVM bleed and craniotomy on October 2018. Looking back now to her history, I’ve pinpointed moments in which I think that the problematic discussed in the article have raised.

Two years ago, when she woke up in the morning with a huge headache and not being able to see anything at all for 30 minutes. We rushed to the nearest hospital, and by the time we got there, her vision was back and the headache was gone. The consulting doctor gave her an aspirin (!!!), and said that was only probably because she raised too fast from the bed. She has argued - and me as well with the doctor - but he did not want to do any further exams and sent her home.

Not convinced, she went on to schedule appointments with 2 different neurologists (which here in Germany, is a quite difficult task). After weeks of waiting, she has described what happened and both basically just said “that’s probably just a bad migraine, it’s common for woman in your age, and you’ve had it before”. Despite of she asking for them to at least do a CT scan or an MRI, they did not want to order the exam. By that time we were both students, with very little money, and we needed the doctors to order the exam to be able to have it covered by our health insurance - so if they didn’t, we had no way of ordering it. So for the lack of a better option, she decided to trust their opinion for the moment.

Let’s jump to last year, on the week of her bleeding. She has again woken up by a big headache, though this time with no vision problems. She did not, this time, want to go to a hospital, neither to talk again to a neurologist; being that the last time was absolutely disappointing, and they’ve said it was just migraines. It could be though too, a form of internalization of the “I’m making too much fuzz for nothing” discourse, which is unfortunately too often put on women since childhood…Though I might be utterly wrong here.

Two days later… she had the headache again, and this time, I was with her and we called an ambulance. Even in the ambulance, the paramedics were saying (while her eyes were each moving to a different direction) “that’s just probably labyrinthitis or a bad migraine” (!!!). Luckily, then, finally, she was correctly diagnosed when reaching the hospital. Turns out she was having a big bleeding in an AVM deep within her Cerebellum, which we have never known nor heard about before!!

It pains me to look back and wonder how our story could have been so much different, if only those 3 different doctors two years ago had ordered a simple CT exam.

Yes, misdiagnosis happens all the time. And yes, diagnosis and prognosis are all based on previous studies and standards. But it so does happens that misdiagnosis might be happening more to young woman for the worst reasons possible; as well as, doctors should be a little more aware that there will always be that 1 case in the year, when a huge headache in someone young is not a simple migraine, but something far more problematic - even if the standards say the chance is 1 in 10000. This not to even begin talking about the gender discrepancy that sometimes occur within the studies that compose the standards themselves…

Anyway, I know I am a man but I wanted to raise this issue for discussion. Maybe you are a woman, or know of a woman, who has has had similar unfortunate experiences…

#2

I agree with you in that sometimes a diagnosis is not properly treated ,a year before my AVM I experienced a severe headache so I went to the ER all that was done was they gave me some pain meds with a muscle relaxer and sent me on my way, no CT scan or anything a year later my AVM burst I believe if they had looked further into why I had the headache it might have prevented the bleed ,of course that was 20+ yes ago and there was not the knowledge that they do have nowadays I hope the very best for you and your wife

#3

Hey lgz,
I understand where you are coming from with all of this and I know the reports you have provided the links for pertain specifically to females, but I can assure you the misdiagnosis and minimisation of symptoms also occurs with the male population too. Some male dr’s maybe all too quick to label it all as hormonal for female patients, where for some males they label symptoms as hypochondria or idiopathic in nature.

I have had many years of symptoms all of which were written off and labelled as hypochondria. I was told “Ohh it can’t be that bad, we can’t find anything”. Once that label of hypochondria is made, it sticks and it follows you EVERYWHERE. The medicos often refer back to medical history and if a psychological diagnosis has ever been made for any medical situation previously then every future medical examination can also be tainted with “Ohh, but you have a history of ….”

I learnt never to mention my psychological history to anyone. I believe that for many females an obvious pseudo diagnosis is hormonal. As I’ve often said to others, we often expect dr’s to have ALL of the answers, but when they don’t know or aren’t sure, rather than admit their shortcomings a hormonal or psych diagnosis becomes the ‘fall back’ position. The problem with this as it seems we have both found is that by the time the true diagnosis has been made it can be a life threatening situation, but I can assure you, no responsibility will ever be taken by the medicos.

When I queried a medico regarding his misdiagnosis I was questioned on whether I intended to sue. Suing was the very last thing on my mind, I was looking for answers, but he was all very concerned about his professional reputation rather than the predicament he had assigned me too.

Even today, some 25+ years after the psych diagnosis, it still follows me. Even after a confirmed neurological condition, for which I have required numerous neurosurgical procedures to treat, I still get “Ohh, but you have a history of ….” and that’s infuriating.

Merl from the Moderator Support Team

#4

Hi lgz. I am so sorry to hear what you and your partner have been through. It really struck a chord with me as the first sign I had of something wrong was a succession of really nasty headaches that got worse and eventually had vomiting with them and pain that lasted for days at a time. My doctor at the time also told me and my mum (I was only 12) this was migraine. Fortunately she wouldn’t let it drop and two years later I was sent for a CT scan which showed up the real problem. Unfortunately for us AVM is really rare and many doctors seem entirely unaware of the condition.