Anyone who is young and has had an avm? doctors/paramedics cast you off because your young

I'm 21 and when I had a stroke... I had the thunderclap headache, vomiting.. balance went and my right arm went weird. but I didn't have the speech or face.. and when the paramedic came she was awful. She judged me based on the fact i'm young... I said I have this massive head pain and she patronisingly said it's because you haven't taken your paracetamol,

Oh yes because taking paracetomol is so effective when your having a stroke. What a revelation. then the last thing I remember is her saying were not going to take her in to hospital because she is throwiing up. Then I don't remember anything until waking up in hospital ,I lost my memory completely but I don't think I lost consciousness. An ambulance was called again but it wasn't the woman who came back.The scary thing is I have no memory of anything after the paramedics left and had to rely on an another person to tell me this information. That I ended up in hospital at midnight apparently.

When I was in hospital I couldn't walk properly nor move my head. They didn't do any observation of my walking, I wasn't even in my right frame of mind almost zombie like. I don't have much memory of my short stay but what I do have is me feeling like a zombie. They discharged me next day..with gastronentis. where they heck did they formulate that diagnosis.. yes I was vomiting but they didn't even check me properly at all. I left unable to walk properly and think properly. Because I am young they assume that I must have had food poisoning/ young person bad diet.

I returned.. obviously because I couldn't move properly/ being in a wheelchair! ... then they scanned me.Luckily I was refereed to southampton for surgery- where they were amazing,Actually treated me like a person and felt like I properly trusted them.

I have complained on the phone to hospital/ paramedic team . I feel that because I am young they judged me.
I am upset because they didn't even check me properly.. I have not much memory upon waking in hospital.I wasn't in my right mind to even say anything.I whish id said please scan me but I was so drained and not with it. They didn't take me seriously.. and it was fatal.

They said about some sort of compensation on the phone but no amount is going to erase the horror of being left when you are having a stroke.. and then tossed aside the next day like old bread.

I am worried that the manager of the hospital is going to be like.. well sorry.. blah blah making exuses to try and cover themselves, same with the paramedic team. I literally don't even care about the money because what they did was absolutely disgusting. Its my life and I have to live with this everyday.

You rely on paramedics to help you and they just left me a pool of my own vomit with the worst headache of my life.

I just don't know what option to take. I don't want it to be taken as a light complaint. I am not going to let this one get pushed under the carpet, I just don't know how they will respond?? should I go to a law firm?

Hi Jessica, while I have had 2 AVm's, I am not young but I commend you for posting your stressful experience here. I remember cutting my head open after viewing a movie at the theater and I was taken by ambulance to the emergency room. I commented to the paramedics that at least this time, I remembered the ambulance ride as fortunately, I had no memory of it after my brain injury which occurred over 2 years prior to the theater injury. I wish you well and hope you receive some helpful responses here.

Hi Jessica, I was 28 when I had my hemorrhage. I was riding my bike, on my way to work when I had the worst headache ever. There was a pop and then I felt the left side of my body not cooperating. I was able to get myself off my bike and then laid down on someone's front yard. The brightness of the sunny day and the nausea were unbearable. I was near a school, called for help and, luckily, someone heard. An ambulance arrived and I was conscious long enough to answer their questions. On the ride to the hospital I remember hearing an attendant ask if there were any more towels because I was vomiting so much they were running out. I don't remember this well, but apparently an attendant asked if I wanted to sit in a chair(so they could have their stretcher); I said no because all that nausea and vomiting tired me out(apparently it was a good thing I said no because I could have made my bleed worse). I was moved to another hospital and do not remember the second ambulance ride at all. I feel for the bad experience you endured. Whichever option you choose I wish courage and diligence Take care.

Hi Jessica and great discussion to post here. Often times the young and woman are "cast aside" and everything must be wrong due to stress, worry, etc. We need to make sure we are our own best advocate and keep pushing until the hospitals/doctors say yes. IF you want to pursue anything with the hospital, put something in writing to them and perhaps have your parents help you out in deciding, what if anything you would like to do. Btw, we have a group on here for people in their early 20's, which would be a fantastic group for you to join. Below is the link for you and thanks again for bringing this topic up, as it effect many of us or our loved ones.

http://www.avmsurvivors.org/group/people-in-their-early-20-s

Jessica,

So sorry to hear that you had such a traumatic experience! As if going through a tough medical situation isn't bad enough, to feel abandoned by the people who are supposed to help you must have been truly terrifying. I'm so glad that you finally got the treatment you needed and a proper diagnosis from a different place!

It sounds as if you feel you should have asked for specific scans or treatment, but please understand that it's really not the patients responsibility to figure out what kind of tests they need - that should be something the doctors take care of, after all, that's why they're there.

I would encourage you to write down exactly what you do remember happening so that you have a record of it. (You would be surprised how fuzzy things can get even if it feels like you won't ever forget them because it was so traumatic.) Consider contacting the hospital and asking to speak to a patient advocate about what happened. From your post, it sounds as if you spoke with someone on the phone and weren't satisfied with the conversation. See if you can get to a patient advocate to let them know what happened and go from there.

Best of luck!

I was 24 when mine ruptured and the first hospital I went to first thought I was just drunk (and I felt pretty drunk and was confused because I know I hadn't been drinking), then they just diagnosed me as being dehydrated and sent me on my way.

The second hospital I went to a whole 26 hours later figured it out AFTER most of my symptoms had disappeared. In fact, my ER doctor said that he wouldn't normally had run the tests on me but he had a gut feeling something else was wrong. Yes, being young I think affects this. Stroke is not common in our age group, so they try to look for other causes of the symptoms first. Heck, I was even in denial that my symptoms could be a stroke because I was a healthy 24 year old. This is why I now am a huge advocate for educating my friends my age that you can have a stroke at ANY age and to recognize the symptoms and act fast even if you have doubts.

As far as litigation, I'm not pursuing a malpractice lawsuit from the first hospital. I was working as a nurse at that hospital at the time. And as a healthcare worker, I just get why they made those decisions. I progressively started feeling better in the ER so I didn't push for them to take more tests. Medicine isn't a perfect science and diagnosing relies on clinical judgement. I honestly would have thought I was drunk too if I was the doctor. And I'm fine, I didn't suffer any long term damage from them missing that I had a stroke. So I just figure forgive and forget.

You weren't treated right though and you should be able to voice your opinion. Maybe before going to a lawyer, try contacting their patient advocacy line. Make sure you write down your concerns and ask about how you can file a formal complaint. If they don't give you the answer you want, as to speak to a supervisor. Also, most hospitals have an anonymous compliance hotline you can contact with complaints and give the details of your experiences (including complaints about the people you talked to on the phone before who didn't seem to listen to you). Hospitals are driven by quality and patient satisfaction- they should honestly listen to you.

Good luck!

Thankyou for all the kind replys. Brain surgery is nothing compared to how I felt physically tortured by the hospital and the paramedics. I have spoken to the hospital on the phone and I am not going to wait for a measly letter from a manager. I don't want oh sorry thats not good enough. So I have arranged an apointment with a lawyer. They can give me all the compensation in the world but I have to live with this. Here is what I am telling the lawyer.. it was hard for me to write its absolutely shocking . http://www.avmsurvivors.org/group/people-in-their-early-20-s/forum/topics/here-is-the-story-i-am-telling-the-lawyer-shocking-treatment-from

thanks I have joined this group. I thought I was the only one in the world ;(

Hi Jessica, I wish you well and luck on your lawyer appointment, Just because its a public health service doesn't mean that they can mistreat anyone, No matter what your age you should have been treated for your symptoms which were "stoke" like so they should have been very fast with there response and diagnostic. Hope it goes well and let us know :) .

P.S. well done for posting your brave story here also.

Martin.

Oh Jessica you are spot on! Doctors need to think outside the box
I have countless stories about this from my experiences and my younger sister
I did not have my stroke until I was 43 and had been complaining of head pain for 3 months but was told my migraines were changing but it was 5 blood clots in my head
If I were you I would get an attorney to write a letter so at least they know you have an attorney and will send some money even though its not going to make you feel better but maybe those paramedics will be forced to think outside the box to help the next person
My sister says to me why does all this rare stuff keep happening to us and I said I think we are here to teach the doctors and she said she is tired of teaching them
I am now a force when I go to the doctors for myself or family and I dont leave until the tests are done
I am really so sorry this all happened to you and so glad you are alive
I would even call a news station to bring attn that people are often judged by their age when it comes to medical emergency

Angela

Yes they definitely do need to think outside the box - they look for typical general things. I think the fact that my stroke was from something as rare as an avm is beside the point. They didn't check me it could have been anything.. and it turned out to be something very rare. Yeah I am definitely getting a lawyer- the whole thing has made me paranoid because of what they did. It feels like they laughed at me for my age and tortuerd me ... I have written a long account of stuff here.. http://www.avmsurvivors.org/group/people-in-their-early-20-s/forum/topics/here-is-the-story-i-am-telling-the-lawyer-shocking-treatment-from

Yeah I am thinking about calling a news station... It is just awful.

it is really awful and I would also get your medical records its always interesting to read them when I do I find that they put in stuff that they said they discussed or did but infact did not and I too had to piece what happened to me via my husband but when I finally got the hospital I went into a coma so they did scan me but it is beyond what they did to you and those parametics should be fired
Thank you for sharing your story
you are right any age can have a stroke I met a family where they knew a young boy with an avm and he had a stroke at 6!
Angela

Hello Jessica. I am sorry to hear what u have been through and I definitely think there needs to be more awareness about other causes of a stroke and what stroke like symptoms mean in a younger person. I was a healthy 32 yr old when I awoke with the worst headache of my life, stiff neck, slurred speech, vomiting and i could not walk or control my arms. Even with these symptoms the paramedic advised me to take paracetomol and spent the next couple of hours deciding wether to take me to hospital or not and looking at me like he was weighing me up. Luckily he decided to drive me himself in the first responce car and once at a and e they were amazing and have been from then on. Time is of the essence when dealing with these things and I am lucky my bleed healed itself. Could have been a very different story for me and yourself.

As for the law firm have you tried getting in touch with PALS which is patients advice liason. In my area they are usually situated within hospitals and can give you advice about what to do next.

Its very unfortunate this happened to you and based on the information provided I would definately look at legal action against the hospital as it was negligence on their behalf...i would also threaten to go to the media as this is unacceptable...hope you feel better...God bless!

I was 15 when I when my AVM ruptured. I was taken to the ER and treated for an overdose. They sent me home hours later still in a semi-coma. The neurosurgeon said the injection I was given for an overdose should have killed me instantly. They assume things and we can't speak to tell them what's wrong. The best thing to do is complain to your local Health Department. Hope you are recovering well!

Paramedics think paracetamol is the answer which will solve everything! As if you suddenly take it your symptoms will magically go away.. It annoys when I see posters up around the doctors surgery with an elderly person and the stroke symptoms.Its programmed in to their minds.

Thats terrible that they gave you an injection without knowing what was really wrong. What are these people doing? They clearly have not learned from their mistakes !

Hi Caryn. Good for you in posting a supportive reply to Jessica. I am 57 now and I was 53 when my 1st AVM burst. I have no memory of this time but I was told that my 22 year old son became very upset when the ambulance transported me to a hospital thinking I had a drug overdose. My son told them (correctly) that I would never take drugs. Fortunately he was heard and I was taken to another hospital. I wish you well.

In 1975, (I was 19 and having a stroke) the first hospital shot me up with thorazine and sent me home with some sort of drug, the second hospital wouldn't listen and thought I had CLOGGED SINUSES and when someone finally listened I was misdiagnosed. Now that you know what you have, you have a voice.