Jump to content

Long wait for 2 year MRI results


Recommended Posts

Hello all!

I had my 2 year MRI on June 2nd and am still waiting for the results! Neither myself or my Drs have received them yet... Phoned a few times leaving messages & eventually decided to e-mail the secretary only to find out she had retired the previous day! Anyway, phoned again leaving another message and someone finally returned the call - unfortunately I was out of signal (typical!!) & the message didn't arrive until after office hours!! :roll:

Anyway, the message said I've found your results and have attached them to your notes. My consultant is on annual leave and should be back by middle of next week when he will contact me or write to me (her words). Am wondering why she didn't say everything looks fine at least to ease my mind. Now I will be worrying until I get the results!! Expecting that everything is fine - no news is good news right?

Just wondered if this has happened to anyone else - the super long wait that is. And what the outcome was.

Happy weekend all

Juliette x

Link to post
Share on other sites

Hi Juliette, this sounds very familiar to me, albeit it was a while ago now. I had to go for annual MRI's following my bleed in 2008 and I remember at the first one, I was told I would get the results in 10 days - well I actually got them in 46 days (etched on my memory). I had another MRI on 17th July 2012 and like you had to chase the results again and again. I didn't get 'the secretary has just retired', but I did get 'the secretary has just gone on maternity leave'! In addition I also got 'your consultant is now on annual leave' plus I even got on one occasion 'I'm glad you've rung because your results had got lost in the system'!!

As you will appreciate, none of this delayed waiting helps us when all we want to know if our brains are ok. Following my July scan last year I finally had a meeting with the results in October! Despite the very long and anxious wait, I was basically told I didn't need another MRI until August 2015.

So try not to worry too much, because that's what I did and in my case at least, it proved a little unneccessary.

I hope you're not waiting too much longer and that your results are reassuring when you do get them.

Take care,

Sarah

Link to post
Share on other sites
  • 1 month later...

After chasing & chasing my results, I finally got phone call this am from someone I though was just phoning to say all was ok. Unfortunately not, It was a lady who was booking me in for an angio to check something they'd found on the MRI. Luckily my husband was here at the time, as I broke down in shock.

2 years, no major problems - all previous scans have been fine. A shocking lack of communication by the departments, the poor lady who phoned up felt awful as she thought I knew what was going on. As it goes, I still don't and the Neuro nurse isn't in until Monday when hopefully she'll call and let me know whats occurring.

I'm hanging on to the belief that they're just being super cautious and if it was serious, they would have contacted me sooner... I hope. Just a bit of a kick in the teeth really. Thought everything was fine....Feeling very emotional :sad1:, but trying to get on a positive.

What a way to start a weekend!!! Off to celebrate a friends 40th tomorrow, so need to get focused.

Juliette xx

Edited by penny
Paragraphs/line spacing inserted for easier reading
Link to post
Share on other sites

Juliette,

Do you feel okay? Apart from scared as Hospitals can be tactless.

Stress is not good for you, does your surgeon have a nurse who you can ring, as my Hubby had a male nurse he

kept in contact with, for any worries about me.

Now chin up (easier said than done) xx

Perhaps they are being overcautious.

Good Luck

Love

WinB143 xx xx

Link to post
Share on other sites

Juliette,

I am so sorry you are going through the torment of not knowing. My friend had an issue similar to this and she went physically to the doctors office and then to the hospital and refused to leave until she had answers. They had been giving her the run around for three weeks and it was a cancer issue! They actually misplaced her biopsy information and never sent it for testing. Of course, no one took responsibility.

We must be our own advocates. Are you near the place/s you can visit? It is ridiculous not to give you the information you need, if for nothing else then to help you sleep at night.

I do hope all goes well. Keep us posted.

iola

Link to post
Share on other sites

Thanks for the reply. I don't think I feel any different to "normal" - just the odd stabbing pains, foggy head sometimes (especially with weather changes!) and bit of pressure now & then. But from what I remember its always been like that.... Although of course I am starting to doubt myself now, and every little thing today I'm panicking about. I had no indicators before my SAH that anything was wrong....

Am trying very hard to convince myself that they are just being over cautious. Will speak with the nurse Monday (not in on a Friday) to hopefully find what they're checking. Have Angio booked for Oct 7th so hopefully they'll be able to tell me the results quickly - off to Disney Florida on the 17th and will not let anything spoil it!!! Turn 40 on the 15th so a birthday treat with my family :-)

Strictly tonight to take my mind off my mini drama

Take care Win

Juliette xx

Link to post
Share on other sites

Thanks Iola, I don't live far, but not sure I'd be able to get any information before Monday morning anyway...

Penny, thanks for the advice - we already asked about flying and thats fine as soon as the angio site is healed. I won't worry the insurance until I know whats gong on. They already know my medical history, and as long as its over 2 years since the "incident" and have no other probe, I now don't need the extra cover I used to get. Although that may change with these results.

Thanks all,

will keep you posted - positive thoughts my way please :-)

Juliette xx

Link to post
Share on other sites

Juliette , i Hope that they start communicating more with you from Monday. Insist on it.

Please Try and enjoy your weekend as much as you can and I hope the party was fun. The waiting and worrying can take its toll can't it? So relax when you can and then Monday can bring what it brings , hopefully knowledge of whats next, and you will move forward again. That's all we can do eh? Sending you my very best.

Link to post
Share on other sites

Thanks Daffodil,

Had a great weekend. Read something while I was away that said if you;re stressed, just thinking about it can make you more stressed and effect your health - which of course in my case is obviously not good!! Solution was to think of something else (lists of things to do; order of shopping aisles in your local shop...) Sounds weird, but actually worked!

Angio booked for the 7th, but going to try and get it booked in for this Thursday. Will be getting answers tomorrow, even if I have to drive over to the hospital and seek the people out!!!

It is very stressful not knowing what they find - and if its life threatening or not. Tomorrow WILL bring the answers I need :-D

Take care all

Juliette x

Link to post
Share on other sites

Hi all,

Spoke with the neuro nurse today - she & the lady booking the angio in have been really helpful. Having Angio Thursday now so thankfully less time to wait and get nervous... The MRI results showed slight compression of the coiling from what I can gather, so want to see how much its compressed by Angio. Also showed another small aneurysm which was not there before which they want to look into..

Has anyone else had this happen to them?? And, with an untreated annie, have the DVLA allowed you to drive??

Hoping (maybe stupidly!) that I need no further treatment and the small annie seen was just an anomaly on the day and sorted itself out :crazy:

Take care all

Juliette x

Link to post
Share on other sites

Hi Juliette, well done you for waiting until today and glad that they have been helpful and a bit more forthcoming.

I'm hoping the angio will go well for you and that it will bring some more answers.

I have another small aneurism in addition to the one that broke which I have monitored regularly. I am fine to drive with this , I think It is only invasive surgery or a stated medical opinion that you are unsafe to drive that could mean you have to declare it. My team seem unconcerned by this small one as they call it, so I'm trying to follow their lead. I'm sure you will get good advice once they have had a closer look so to speak. The angio is the best and most accurate way to be sure what our anatomy is up to.

Fingers crossed its all ticketyboo.

Link to post
Share on other sites

Hi Juliette,

Sorry you are going through all this uncertainty at the moment. A good move in getting your angio this Thursday to avoid having to ponder over things any longer than needs be.

My coils had compacted too, unfortunately it happens in a few cases. I also have an untreated small aneurysm - mine was discovered after the initial bleed and has been monitored since then, but nothing has been done with it as yet. That was nearly 5 years ago and I have been driving all this time.

I remember well all the stress etc that was involved at the time so I can empathise with you.

Best wishes,

Sarah

Link to post
Share on other sites

Posted on behalf of Jillbb - sent via email to the site.

[TABLE]

[TR=bgcolor: #E0E0E0]

[TD]Message:[/TD]

[TD]Hi Juliette and all hopeful drivers.

I had my driving license removed after my SAH in march 2012, I was not allowed to drive until I under took a number of quite hard tests involving written psychological tests ie picking out different words from a story while they played another story through head phones , I had to drive on a simulator, then having not driven for 9 months was presented with a bran new ford focus! And told we were going for a drive.

I had the examiner in front and another assessor behind plus a camera filming me. We drove round Cardiff for approx 3 quarters of an hour. I had to observe all the road signs on both sides of the road as I drove, the whole thing was very stressful although they did there best to put me at my ease! I had to then wait a few more weeks before they agreed last February to allow me to drive.

Now I am 70 the process starts again. I want to go on driving a trailor, the dvla have said I have to wait 3 months for decision although they have had all my medical reports and contacted my consultant only a few months ago! I do not hold out much hope. I find it hard to understand how the dvla works some people drive really quickly with no problems others like me have had terrible problems to get their license back, and now I am back to square one again! At least I hope I will be allowed to keep my drivers license.

Good luck Juliette with your MRI love Jill[/TD]

[/TR]

[/TABLE]

Link to post
Share on other sites

Thank you all for your words of encouragement - and Jill I really hope they don't take your license from you. Seems so silly to have to go through it all again so soon!!!

Had angio on Thursday, and very happy to say the news was good :-) The Dr doing the scan was actually the one who saved my life - for me a good omen. The angio showed slight swelling of the coiled area, which is what they saw as a 2nd annie forming. I found out the reason they checked it out was because my original anni was only 1.3mm, but still caused an incredible amount of blood. If my original annie had been bigger they wouldn't have been so worried about it. Anyway, Dr kept saying good news as she was doing the procedure - and not surprisingly took a while for it to sink in for me laid there trying not to panic or move!!!!

There is a weekly meeting each Monday, where they will discuss my case, but the plan at the moment is that I am now going to have yearly scans to check whats going on, but at the moment no more surgery. YAY!!!!!

And Breathe......

Am sooooo looking forward to my holiday in less than 2 weeks :-D

Take care all

Juliette xxxxx

Link to post
Share on other sites

Hi Juliette

I, am so glad that all went so well with your MRI, I presume you were in the Heath Hospital, the same as me. I have never met any one who has had an SAH, I am not sure how one gives information about telephone numbers etc, but I only live outside Abergavenny, and would love to meet up with you. I have not found any sort of actual group in our area, I only found this site as my step daughter is quite a wiz on a computer, and has at last persuaded and conjoled me into the 20th century.

I have been lucky at not having to have an operation, but as I improve ie less fatigue, I disappointingly seem to go backwards with my memory. Do we demand of ourselves too much? Are our expectations of returning to our normal selves prior SAH just unrealistic, I have passed the stage of being grateful to be alive, I just am striving to get back to as I was. Yesterday I went for an all day art course, with a visiting tutor, my confidence fell, as I looked at my blank piece of paper, her instructions were clear, and bless her she made no comment, when I said I could not remember a simple technique, this happens now all the time! Love Jill

Link to post
Share on other sites

Hi Jill - I will PM you my number. I haven't met anybody who's had a SAH either - would be great to meet up with someone who's been through the same thing & understands what we're going through.

I started at the Gwent, got transferred to the Heath, but they couldn't do the surgery there (neuro readiologist off or something!) so I was helicoptered over to Frenchay from treatment - roads too snowy/icy to drive safely. All my follow up is done there thankfully as much closer.

I also have problems with my memory - sometimes simple words elude me when talking. People now take that as a norm for me - always was a bit scatty!! I did for a while practise on one of those brain trainers, which helped a little. I'm almost 3 years post SAH, and I think I am still improving.....

I'll PM you

Juliette xxx

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...