Get a copy of your MRI scans

Tests and investigations
1

I am new to this site, only came across it 24 hours ago, so this may be common knowledge on this site. I was mainly in the migraine and fibro categories but when I saw this forum this morning I could only think about my recent experience and how I didn't want anyone else going through it.

Last December I began experiencing daily lightning flashes, dizzy spells even when driving, terribly debilitating migraines, etc. After 31.5 years of no migraine history, no one could tell me what was suddenly a daily problem. I considered it may be my fibro as I had developed new symptoms every now and then over the years.

Long story short is that I had a CT scan, an MRI, an ultrasound, an ENG, another MRI, an MRA, countless blood work and hearing tests and reflex tests, etc, etc. I was sent to a neurologist who sent me to an ENT who sent me to another neurologist who sent me to another ENT. I actually did get a copy of my first MRi but then they wanted another one anyway, eck!

Anyways, fast forward to September and an x ray showed that I had lost significant curvature in my neck, and also had minor arthiritis and an issue with the degrees to the left. I also had tight occipital lobes blocking flow to my brain in addition to my C1 putting pressure on my brain. I am in the early stages of treatment with both a chiropractor and medical massage clinic.

The upsetting part of this rambling rant is that these issues were present on the CT scan and MRi but different specialists look at different things! For example my first neurologist was specifically looking for a physical problem like a tumor and the second one that ordered the MRAs was looking for a migraine pattern. Neither one was looking at skeletal issues.

I am not placing the blame on what different specialists do. However, if I had started collectinig the copies of the actual images (not the reports) and bringing those CDs to every new person I saw 5 months earlier, this could have been resolved in a matter of weeks instead of close to a year.

Do not make my mistakes, always be armed with your testing results as you seek the right doctor to help you and maybe you will get help much faster- good luck!!!!!

2

hi manda.. wise words indeed! an american lass i replied to was hoping that a tmj scan might show up an aneurysm and something else tmj unrelated - i suggested that it would seem unlikelya maxillo-facial consultant looking for tmj issues would be the one to pick up other unrelated problems, if the tmj scan even covered the whole head.. passing them on to the appropriate consultant seemed the way to go with that one.

as for going 'armed' with scans ..what i found funny was after putting the scans in the hands of (in this case, my dentist) prior to heading off for a total tmj replacement, despite it simply being a courtesy for him to see them, getting him to give them back was a wholly different matter!  ;o)

you don't mention if you're in the uk and using the nhs but i just hope you can plough a path to the right specialists and treatment and can get some sort of resolution of the issues you're trying to deal with, even if it has meant going 'round the houses' to get there..

best of luck and do keep us updated as you progress.

3

You know i didnt because i only joined yesterday and didnt realize this was a uk site. Im in the US. You know, i did have to be pretty persistant with a dr about getting MY scans back and it was pretty silly.

4

hi manda.. to be honest i'm not sure that it's a 'brit' site as such.. certainly people are posting from all over.. no surprise tho that this is one issue where both our health systems can mess you around!

guess it comes round to the consultants we're seeing and how eager they are wherever possible to do things 'your way'.

comes back to the classic "what's the difference between god and a consultant"?  i've had from the best to the worst over the years.. you'll probably find it's just the same where you are.

what strikes me as doubly funny is that YOU probably paid for the scans yet still run into difficulties when you try and get 'em back!

don't lose heart!

5

Ha ha ha, it's not so much that it's funny that the medical field in both countries is equally screwy as it is that it can be such a relief to hear someone say the same thing when you have felt isolated and slightly insane for so long that you can't help but laugh!smile

I also hope that all of your diagnostic tests and gp appointments get you to where you need to be!

6

oh manda.. glad you still have enough sense of humour left to be able to smile at the nonsense of it..  wink  ..you really couldn't make it up, huh? i think you'll find many people on here would smile the same smile of recognition too.

thanks for the thoughts about my stuff, altho i think after 31 years they've pretty much nailed all they're going to - the tmj replacement was the final step on the journey.  just have to hope the other side holds out a little longer!   the other damage just is what it is, but all things considered, everything's pretty ok.    biggrin

 

7

Hi Manda I too have had a mare with Drs for the last 3 yrs!  I've not been able to use my hands properly due to pain, pins & needle & numbness. I was told X-rays were fine,  8 mths later saw a specialist who told me I needed immediate joint replacement in both thumbs but had nothing to do with the genral hand pain, in the mean time I had Carpal Tunnel surgery on both..(I new it wasn't that for various reasons) last August had Nerve release surgery on Cervical Spine to no avai, & things are worse. Seen a rheumetoligist who thinks I have Fybromalgia but have had no treatment for? I saw neck surgeon 5th October who said he will fit a plait in my neck & no need for another MRI Scan (I've only had one, nearly 2 yrs ago) I asked for another one as things have got worse & then asked if this could be something like a stroke .?? (Not that I know the 1st thing about strokes) I had my MRI Scan on Wednesday on the "whole"of my Spine which I wasn't expecting but really pleased about & Brain! Sorry this is long winded lol but like you, I feel like I've been pushed from pillow to post, it's total lack of communication. You should never have had to show each Dr your scans, they should all be there in your records "Open" on the computer screen for each of them to View on every apptmt, like you I should never have been the one to request a brain scan! (wish I got paid for someone else to do my work! Hahaha, but will say, if they do find anything on the brain scan I will wipe the floors with each & everyone of them & I've never complained to anyone about anything!  No one should be in pain not least the ones asking for help. I'm 55 not eighty have 5 young Grandchildren that I can't play with properly, carry, or chase lol & 1 on the way... I really do appreciate the NHS & the care I've been given by most but will be sooo cross if this is all due to something else! Like everyone we just want to get on with our lives & ours has been put on hold, theirs hasn't! 

8

Right, like they are all looking at your scans but are only looking for 2 things a piece, what a croc. You should be able to get a diagnosis and get on playing with your grandkids!