Distressing brain MRI

[urbangirl]

Last week I had a brain MRI and a CT scan to assess the effect of Tagrisso on my Stage 4 NSCLC. I have a 4.8cm tumour in the left upper lobe and also a smaller un-biopsied tumour. There is a 9mm ground glass opacity in the upper left lobe and I have a confirmed pleural effusion. The PET scan did not identify any other mets, but the oncologist wants the brain MRI to ensure that this is clear. Possible lymph node involvement by the bronchus but not confirmed. I have been on Tagrisso for just 6 1/2 weeks and because I have a rare EGFR mutation which has no viable study on the outcomes, the oncologists wants to assess the efficacy of the treatment asap in case I have to change treatment. So these scans were scary as they are going to determine the rest of my life.

I have a hearing disability and wear hearing aids some of the time. The CT scan was perfect - I was able to wear the hearing aids and it was a very quick contrast scan. The I had to wait for nearly an hour for the MRI. I didn't mind the waiting too much as I had a good book to distract me. However, as you all probably know I had to remove the hearing aids. This meant I could not hear; but the radiographer promised to speak up and clearly. As I had not had a brain MRI before I asked why I had something over my face, to which the masked radiologist replied something I could not hear. So I asked again and she was exasperated.

During the MRI I could not hear any of the instructions whatsoever. Besides it is noisy. I was terrified; I didn't know of how long the particular images were going to take; and I was scared because of the reason for the MRI and became very lonely and tearful. When the radiographer stopped the scan to give me the injection for the next stage of the MRI I told her I was unable to hear her. She advised she spoke as loud as she could and couldn't do anything else and asked if I wanted her to continue giving me instructions to which I replied yes. Of course I didn't hear anything else.

I thought this member of staff treated me with disrespect and disregarded my disability. She made me feel another number in the usual day's clinic, whereas other members of staff at this hospital have never made me feel so insignificant; and have gone out of their way to make sure I understand for example during the lung biopsy and the insertion of a chest drain under the scanner. Does anyone else have hearing disabilities that affect their hearing during procedures?

[urbangirl]

Sorry made a mistake. For clarification the 2 tumours are in the upper right lobe and ground class opacity in left upper lobe

[Lyubov]

Yes, I have similar problem. Always tell them; most of them speak more loudly. Maybe there's a technical solution that would help. Good luck. It's frustrating, I know.

[Cockailschemocancer]

Sorry to hear this of your experience. Maybe next time as to keep the hearing aids out until the last minute so that all the information has been told to you whilst you can hear. Ask for the earplugs and headphones to help drown the noise and I find a face mask also helps. They do have them sometimes but if you can bring your own. They last about 30 mins which in my mind is a very long time. You also should have the buzzer to stop at any time your anxious. I also take diazepam before I have mine to help with the nerves. Hope this all helps should you need one again xx

[urbangirl in reply to Cockailschemocancer]

Thank you for this advice. We have to leave hearing aids along with our belongings in a locker outside the scanner room. We are given earplugs, have to keep masks on and we have a buzzer; and a visor type face covering with a camera. One of the instructions given is how a warning for long the image taking lasts for eg 2 minutes etc. I think that it would be a good idea if we could bring the hearing aids in to the scanning room and be advised of the time sequence for the images. Then the patient would have a rough idea of the timescale for the procedure. However, it might be difficult to absorb that information if you are anxious of course.

[Cockailschemocancer]

at mine, you bring a key with you, so there is metal in the room, therefore when you lie on the table, I don't see why you can't take the hearing aids out at that time. Not all MRI scanners have the 'the next scan is 2 mins' etc, (they are my favourite though) but most of the time I am clueless. So if there are other things that can help for the anxiety, I would say do them all! Best wishes to you. Kerrie

[urbangirl in reply to Cockailschemocancer]

You are right about metal in the room as I had to bring the key in with me too. As well as these practical issues I thought the radiographer treated me as a nuisance. She clearly needed to keep up with the appointments but seemed to ignore disability and anxiety in the process.

[Cockailschemocancer in reply to urbangirl]

There is no excuse for that, but I imagine they are on a super tight timescale, if you ever need one again, maybe call that department and ask them to add to your notes, you are anxious and need to keep your hearing aids with you until the last moment. Hope you don't need one though again!

[urbangirl in reply to Cockailschemocancer]

Good idea - hope I don't need another brain MRI too but suspect I will at some stage. Have thought about contacting PALS too. I think the radiologist thought I was nuts! I do become a different person when I am anxious and scared though.

[Cockailschemocancer in reply to urbangirl]

Of course you do, I have one every 3 months and have done for 2.5 years, I still hate them, but find taking a diazepam helps me and the eye mask and trying to think of nice sounds like the sea ... whatever works! Maybe you got him/her on an off day, they are usually really nice. x

[urbangirl in reply to Cockailschemocancer]

I know they are usually so nice and reassuring to me - all the staff have been and some exemplary. Do you have brain MRIs every 3 months? Regardless of what you have that is a lot and I think the eye mask is a good idea. Distraction therapy is good. I do get bored really quickly so this is another challenge for me!

[Cockailschemocancer]

Yes I haver them every 3 months as I had some mets to the brain, so have to check that nothing floats there again, I won't lie, it doesn't get easier, but you do learn better coping mechanisms ... !

[urbangirl in reply to Cockailschemocancer]

I think I will have some sort of regular scan too as the clinicians need to monitor the treatment. So I will have to put up with this and get in training!

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello urbangirl,

I am very sorry to hear that you have had such a bad experience during your MRI scan and that a member of the radiology team disregarded your disability. These scans can be very noisy and even at the best of times it can be difficult to hear instructions.

The NHS encourage feedback about our experiences during treatment and investigations, so that in the future services can be improved. Many departments have a “How did we do” form, which us a way of giving anonymous feedback, this will make them aware how going forward in the future their attitude to people with hearing difficulties can be improved.

If you feel that you need to make a complaint most NHS hospitals have a Patient Advice and Liaison Service (PALS). You can speak with a PALS member, who'll try to help you resolve issues informally with the hospital before you need to make a complaint.

Kind regards

Roy Castle Support Team

[urbangirl in reply to RoyCastleHelpline]

Thank you. I am considering a complaint to PALS but it is time consuming and emotionally draining on top of everything else. Besides, radiologist should be aware of the anxiety patients have pre and during scans; and also of problems for hearing impaired patients; as I'm sure they have been advised of this. Maybe they just need to be gently reminded every so often.