Brain Aneurysm Support Community

2mm PCOM Annie

My journey began at the start of the year when I knew something wasn;t right (headaches, numbness, neck pain, eye pain, dizziness, pulsatile tinnitus). I’ve a strong FH of brain haemorrhage. I had an MRI/MRA with contrast in March but they lost the results. It was done again in June and then had a CTA in July. Results show bilateral basal ganglia calicification, vascular loop - I got these results via letter…just got another letter last week saying CTA shows 2mm (wouldn’t put it past them to undersize it) PCOM aneurysm. How heartless. Tests were done via Aand e (general physician). So he’s told me this (letter) and said I’ll get an appoinyment with neurosurgery in 9 months. Complaints department (wrote to them about missing results) are blooming useless. Anyone else had to wait this long?

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I had quicker results from my MRI/MRAs and CTA, but I am waiting 6 months to see a neurosurgeon. Mine is suspected to be 2mm and is in the MCA, but seems to be “stable.” I have had headaches, dizziness and face numbness too.
I hope you get some result from lodging your complaint.
Cheers,
Bertie

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Hi Bertie, Hope you are keeping your chin up. It’s a worry but I try not to think about it. Then there are moments I remember finding my mum lying on the floor and think - hope my kids don’t find me like that. So I’m going to live like a miser and cut my work hours! Let me know how you get on with your neurosurgeon and hope all goes well. Best Regards, Feefo

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Hello Feefo,
I’m keeping busy with small projects… Those bad thoughts do creep in… I too have a family history of aneurysms. It can be scary to think of the worst and the reaction of loved ones. I’m sorry you had to find your Mum that way.
Keep your stress down, and as Churchill said, K.B.O!
I will let you know how my appointment goes and please let me know how yours goes too. This message board is a great resource and the members are very kind and knowledgeable.
Take care of yourself,
Bertie

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Write to the head of the hospital, if your scans were done at one. Bypass the complaints department. Or since your in the UK, you might want to write the Minister of Health and let them know what’s going on under their charge.

On the other side of the coin, people are human and make mistakes. It sucks being on the receiving end of a person’s error, but there it is.

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So sorry this has happened to you. It is stressful even when they do things right. But really glad your going to see Nuro-Doctor. Now you know to ask for a copy of report to pick up yourself. My only problems was took me some time to get my insurance to approve to have surgery done at bigger hospital (UCLA.) Thankfully they did. Hope it gets better sounds like your going right direction. Best wishes! If you can let us know how it turns out. :wink::heavy_heart_exclamation:

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Hi Bertie, Hope your appt goes well too. I’m so glad I found this website. Other people don’t know how I’m thinking - I’ve only told my daughter so far and that was when she caught me reading the letter (that’s how they told me I had one).Best Wishes FeeFo

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Hi teresaklingbiel, I’m still at the digesting phase but I’m fine most of the time. I hope your surgery goes well and that you keep well. I’ll keep an eye out on your posts xx

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Hi Moltroub, thanks for this advice. I knew something wasn’t right but the general physician (the emergency department guy who arranged for the scans over the weeks following my ‘big headache’) thought I was neurotic. He didn’t have the courtesy to say he was wrong but I won’t let that annoy me. It’s not been a week yet since being told I had one. I’m wondering if I should tell my son he’s 21 and can be a bit of a handfulI.
I think there’s another one on my right side that hasn’t shown up yet. I see my GP on Monday so at least I can sit down and ask questions. I’ve written to my MP in the past about other matters so will write to her also (as well as the head of the hospital). Thank you so much, FeeFo

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It is a rare doctor that would admit to being incorrect. I have learned mostly in the last ten years that most doctors need to take a class in honesty…luckily for me, mine are extremely honest.

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Maybe try PALS? Each hospital in the UK has a PALS I think, and I think they are for situations similar to this. - https://www.nhs.uk/common-health-questions/nhs-services-and-treatments/what-is-pals-patient-advice-and-liaison-service/

I’ve heard (not used them, but heard) that they are pretty effective at chasing things for patients. I mentioned them to someone else on a FB group (aneurysm group) and it sounds like they really helped a lady get her daughter seen by a neuro, when before she was struggling.

From what I hear they kinda take up your cause & chase the right people to get things done.

Maybe Google:

{Name of your hospital} PALS
or
{Name of your hospital} Patient Advice and Liaison Service

Not sure how useful this is, but hope this helps :slight_smile:

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Hi,
Neurosurgeon told me that they don’t do surgery until the aneurysm is 4mm, when I had my scan done they found 4 of them, one was 5mm, the other a bit smaller, the remaining 2 he said were smaller yet and he would watch those 2 and I had him do clippings on the other 2…I got my results in person, that’s lousy they sent that to you in the mail! My surgery was done 5 months from discovery as I was a caregiver for my husband and couldn’t go in sooner. Wishing you luck and peace, go after them for losing your results, that’s unaccceptable!

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I am so very sorry you have had such difficulties with medical facilities regarding something that we all know is very frightening. I discovered that I have a second aneurysm through overhearing casual conversation between my neurosurgeon and an OR tech while I was lying on a table having an angiogram. You have gotten some good advice from people who understand your medical system. I wish you all the best.

Did you say “Hello, I’m right here…how about talking to me?”

I am sorry, I am a bit confused. I did not post that.

It was in response to the conversation you overheard between the doctor and the tech.

I understand now that I have read my post again. Yes, in fact I spoke quite loudly and said ‘I have ANOTHER ONE?’ The surgeon then said ‘She didn’t know? She didn’t know she has two?’ One of the nurses spoke in what she intended to be a calming voice, and said ‘It is really small, you don’t need to worry…a few more statements of a similar nature.’ I was so freaked out I wanted to jump off the table and run away, but of course I could not. Once they were through (they went in through my wrist by the way, not my groin) I was taken back to s room where I had to stay for an hour or so to be sure there was no post-procedure bleeding. About 10 minutes after they took me there, one of the nurses who helped with the angiogram came in the room to tell me I was fine, but it was too late because I was already completely panicked. You and the others on this site will understand the visceral fear I was experiencing. I was scared, panicked, angry… she tried to explain but in fact there was no acceptable explanation. She said all looked well, the second aneurysm was quite small, they would take another look in 12 months. I insisted that they make an office appointment for me ASAP. I went home in that horrid state you all know…wanting to claw that thing, that betrayal out of my head. They made an appointment with the PA and I went to her office three days later. I had been unable to calm down, couldn’t sleep and I explained to her what I have just told you. I cried, I was angry…all of the reactions you all know. She said she had looked into what happened, the entire team had met and they had changed their procedures to assure that would never happen to any patient ever again. She apologized profusely, and acknowledged that although I helped other future patients, the changes came too late to help me. I am OK now, but just writing the story puts me on edge again. But in response to your question, yes I did say something. Thank goodness this group exists. No one else can understand.

You’re right, we all understand. Remember to breathe deeply and slowly. And when you think about it, tell yourself it was then not today. And dang Redhead your are extraordinary in that you have changed an entire hospital’s procedures. Pat yourself on the back! Sometimes, well for me, all the time, a glass half full is better than one half empty!

I had a go around with a doctor about HIPPA and ethics when I hear him say in the hallway that there was no such thing as Foreign Accent Syndrome and I was crazy and had made it up. When he got in the room I asked him if he had ever read HIPPA, if he was a specialist in speech or psychology and if he knew how to respect a patient. This was all before he even looked at my wounds. And I got to say my favorite come back to not nice people, I’m brain damaged, what’s your excuse? ROFLOL

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But sometimes only on angiogram they find another aneurysm , in the process , I am a little bit confused what doctors did wrong . May be I am misunderstanding the story . During the angiogram the doctors communicate between themselves . To the patient they give instructions only , or what to expect . After a procedure they discuss with patient what they found . Aren’t they?

gk79, Redhead overheard the Doctor and another discussing over what they found and Redhead was awake enough to hear it. So because of that fubar, her team doesn’t talk in front of the patient.

In my experience, and I’ve had many angiograms, my Doctor’s team discusses things pertinent to the angiogram, not to what she sees, ever. Once she starts, she doesn’t leave my side until I’m plugged. All of mine have been through the groin. They never discuss what she sees while I’m on the table. After I wake up, she comes in and tells us if I have to have another coiling (I’ve had 3 for 1 aneurysm) or if things look good. Again, there is no discussion of what she sees while she’s doing the angiogram.

So basically what Redhead’s doctor and the team member did was breach medical ethics by discussing what the doctor and team saw without discussing it with Redhead, but they did it with Redhead on the table. Because of Redhead’s tenacity, they have changed their ways.

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