MRI results

[Tigerlily15]

I had my annual watch & wait MRI October 13th 2023 and after leaving messages for consultant's secretary and emailing the skull based unit at the QE Birmingham, they have finally responded with an appointment for March 14th for a 'phone consultation with someone from the team.

I think I only have this date by contacting them, has anyone else been kept waiting this long for results or is this the new normal? Whilst I should be reassured that all must be ok, otherwise I'd know already, I can't help worrying.

[JDN57]

I had my MRI October 2022 and got the results mid July 2023!!! I chased by telephone and email after 6 months and had quite an abrupt reply from a co-ordinator telling me to be patient as they were busy. I thought no news is good news but when I did receive a reply by post it was to inform me my AN had grown 2mm. I had another MRI on 12th October 2023 and as yet have not heard. I emailed the secretary last week and just waiting for a response.

Sorry you have had the same delays as me. I know we shouldn't worry but that's hard when you know there is a squatter in your brain. Hope you get good new with your results.

[Tigerlily15 in reply to JDN57]

Thank you JDN57 for your kind response, that is a terrible length of time you've had to wait, you were almost having the next scan without the results of the previous! I do hope you have your results soon.

The systems in place seem baffling & the unnecessary anxiety could be easily prevented with effective communication, hopefully one day things will improve.

[whitefishbay]

They (every NHS Dept) are all overloaded but I think if the results were alarming they would contact you promptly. Fingers crossed.

[flappers]

It’s must be hard, all the waiting. I’ve had a different experience. When I’m due a scan and have the date for it, I email the consultant’s secretary and ask for an appointment ( usually to happen a few weeks after the scan date) and when I have my scan advise the radiographer dept that the result is needed by the date of the apt. So far it’s worked! However from diagnosis, I have had faster growth than usual for these slow growers and needed treatment fairly early on, so it maybe they are more responsive because of that. I am absolutely certain that they prioritise those who may be on the cusp of needing treatment, so although the waiting is utterly pants, I hope in some way you can practise the mantra that no news is good news and find ways to soothe yourself. Distract with doing lots of lovelythings! X

[Tigerlily15 in reply to flappers]

Thank you flappers for your kind message, I will follow the no news is good news mantra, sounds like a good plan x

[Avarose2010]

Hi , I had my scan 1 July 2023 .After not hearing anything by November I rang the secretary and she actually laughed when I told her that I had been told that I would get my results back after two weeks.

The same day she rang me back and said that the consultant had asked her to phone me to put my mind at rest , it was still growing but slowly and I would receive a letter to confirm this in the post , l am still waiting.

[Tigerlily15 in reply to Avarose2010]

Thank you Avarose2010 for your reply, I really hope you hear back soon, it's the waiting length that's difficult when you're expecting some form of communication back and knowing when to check if you've been overlooked, which in turn must create more work for the staff, best wishes in your wait x

[SRK57]

I think it must be dependant on where you are and how good the NHS trust is there. I am under the Skull Base team at Salford Royal and have received exemplary service from them since I was initially diagnosed with an AN last year. I had an initial MRI in June, was put on watch and wait with a follow up MRI on 27th December 2003. I have just been sent a letter confirming a telephone appointment on 12th February to discuss the team's findings after consideration of the results. I have the utmost regard for the team at Salford and just wish everywhere had the same level of service. Good luck with your March appointment - hope all goes well!

[00001111 in reply to SRK57]

Im with salford.cant thank them enough.if i have a problem i can phone andrea skull base nurse.had radio april next scan oct

[Debra1963]

Hi That does seem a long time for the results. I generally get my telephone appointment for the results first - this year its 10 May and a couple of weeks ago I got the date for my scan which is 4 March so I usually have a 6 wk wait. I can cope with that but 5 months would drive me nuts!

[JDN57]

I finally got my results from last October's MRI today the AN has grown again and will now see a consultant but to be patient as the appointment will not be for another 6 months!!! At last though I might be able to speak to someone in person. Over last few months my balance has got worse and the feeling of motion sickness is with me every day so am counting down the days until I have my appointment. I have tried every hack imaginable - keeping fit by swimming and walking with poles but nothing seems to help. Everyone told me the balance would return when my brain realised the hearing wouldn't be coming back but after 2 1/2 years no better and slightly worse. The tinnitus is also a lot louder but am trying to get round that with constant noise.

[flappers in reply to JDN57]

ask your team for a referral to a vestibular physiotherapist… and I know this might seem daft but do you wear a hearing aid? Both those can help….

[Soosal]

I had my scan on 31st December and received the results within about two and a half weeks.I have been told in tbe past that it would take three to six weeks as there is no brain surgery unit in Cornwall and the results have to go to Plymouth in Devon.

I also have a leephone number and email for one of tbe nurses on the team so that if I have any worries or queries. I can get in touch with them. After hearing about other hospitals I consider myself very lucky.

[904newton]

the NHS are so overwhelmed I had to chase up my scan results after months it is very anxiety provoking x

[Ukulele21]

Good morning Tigerlilt15, I have received a letter this morning with the result of an MRI scan I had October 23.

They have asked me to make an appointment for October this year for another scan. It does seem to be they are working a year behind with results. So look forward to receiving the results next year sometime.

Take care and no news is good news. 💕