View Full Version : Really really worried about upcoming MRI scan...
So I had an MRI scan in September as an ophthalmologist thought that my optic discs were enlarged after examining my eyes for a separate thing. This indicated cranial pressure. I went through EXTREME anxiety waiting for the results as I was convinced I had a brain tumour. The MRI results came back clear.
I had since been to a neurologist on the recommendation of the ophthalmologist as he didn't understand why I had enlarged optic discs. I also was experiencing numerous twitching all over, and a very strange twitch in my left eyelid which is only triggered when I swallow food. Anyway he ordered an EMG which came back normal also.
Now, in the last two weeks, I've developed a burning sensation on the left back side of my head. It gets worse when I swallow but I experience it periodically throughout the day. I went back to the neurologist today who said I should have another MRI as the last one was mainly of my orbits, and the full brain imaging was quite general. This time he's ordered a more detailed brain MRI and also a neck one too. I am VERY worried... I keep thinking there's something that didn't show up on the last one. Like a tumour of course. Thankfully I won't have to wait long this time as I'm having it done privately... so scan is on Monday and will have the results by the end of the week... I just hate how I'm back here. I thought the first MRI would cover it all and now I have to have another one... the next week is gonna be agony. :(
Serenity1990
04-12-14, 21:38
I know what it's like waiting for MRI results, it's really not easy. I can't comment on the medical side of things just as nobody on here really can, but I can say I have had the symptoms you describe and many, many more and my MRI was completely normal, and whilst I do have a condition causing these symptoms it's perfectly benign (and was probably caused by stress/anxiety).
Do you mind if I ask what your condition is? If you don't wanna say, that's perfectly fine :)
Also what symptoms did you have? I feel sick with anxiety... I really don't deal with it well. Waiting for my MRI results last time (over a month) I felt like I was having a nervous breakdown.
almamatters
04-12-14, 21:50
Like the previous poster, I am not qualified to comment on medical matters, but I did have a brain MRI for burning sensations mainly in side of head, which was normal. I had one without contrast dye and spent months worrying that it would not have shown something sinister but I was assured by a neurologist that anything nasty would show.
Hope all goes ok for you.
Could you describe the burning sensations you had? Where were they exactly etc.?
Sorry I just need any reassurance right now :(
almamatters
04-12-14, 21:53
I don't mind discussing this with you, my burning sensations were mainly left hand side of head it used to move from side to back a lot. I had this every day all day for months. It nearly drove my crazy and was one of the reasons I joined NMP to help me deal with the anxiety of it all. I also used to get a lot of tingling and numbness in my face and head.
Thanks I really appreciate it. Mine are mainly on the left side at the back... Strangely seems to come mainly when I'm eating/swallowing but do happen outside that also... The neurologist told me that nerve originates from the base of the skull. He poked the back of my head with a needle and the left side was definitely slightly less sensitive around the area that I get the burning... Argh I really thought this was over, it's so frustrating to be back in this position again... Did you ever find out what was causing your burning?
Serenity1990
04-12-14, 21:58
Twitching, parasthesia, flashes of light, visual snow, cramping, and dexterity issues to name but a few. The actual list would be pages long. I have something called BFS (or BCFS), which is a type of peripheral nerve hyperexcitability thought to occur in a number of circumstances, particularly after significant stresses, whether these are viral or emotional.
It's irritating and it won't go away for a very long time. But it is just that: an irritant. It's benign, it won't have any massive effect on my life.
I'm not saying you have this, mind, but you asked what I had. There are thousands of boring and benign conditions that cause these symptoms, some short and others longer term. And as my neurologist put it most neurological symptoms go unexplained by medicine and never progress into anything. Not some, not many, but "most"!
I had an EMG which came back normal (athlete normal in fact but I don't know if he was just messing about lol) but would BFS have shown up on that? Or is BFS diagnosed when an EMG is normal but twitching etc still occurs?
---------- Post added at 22:02 ---------- Previous post was at 22:01 ----------
It's interesting you say after significant stresses as I had two very close viral infections in the months preceding all of this starting...
almamatters
04-12-14, 22:11
Thanks I really appreciate it. Mine are mainly on the left side at the back... Strangely seems to come mainly when I'm eating/swallowing but do happen outside that also... The neurologist told me that nerve originates from the base of the skull. He poked the back of my head with a needle and the left side was definitely slightly less sensitive around the area that I get the burning... Argh I really thought this was over, it's so frustrating to be back in this position again... Did you ever find out what was causing your burning?
It was put down to nerve pain and I was given medication for it. It did sort of disappear one day on it's own but occasionally comes back. Mine was not connected to swallowing or eating but weirdly did get worse with movement or exercise.
Well that's reassured me quite a lot, thank you. :)
Mine is definitely nerve pain but it's what's causing it that is making me anxious. My neurologist isn't very reassuring... He said it's a nerve that originates at the very top of the spine and usually the only people that get this are the elderly and it happens due to wear and tear... and he said it wouldn't happen to someone my age...
almamatters
04-12-14, 22:20
My neurologist originally diagnosed 'left sided tension headache' but then changed his mind when the meds he gave me didn't work. I have to say that in my case the neuro said that he did not think there was any sinister cause for my pain and that sometimes there is nothing found on scans or tests to cause these problems and that they can just sort themselves out. Anxiety made mine a lot worse probably due to the amount of tension in my neck and upper body. I remember how anxious and worried I felt at the time so can understand in a way what you are going through.
Serenity1990
04-12-14, 22:32
I had an EMG which came back normal (athlete normal in fact but I don't know if he was just messing about lol) but would BFS have shown up on that? Or is BFS diagnosed when an EMG is normal but twitching etc still occurs?
---------- Post added at 22:02 ---------- Previous post was at 22:01 ----------
It's interesting you say after significant stresses as I had two very close viral infections in the months preceding all of this starting...
It is diagnosed by EMG (it shows up as PNH), but I understand symptoms need to occur during the EMG. Luckily mine did.
Don't get hung up on my illness. The reason I brought it up is it's one of hundreds of benign and boring things that can cause these symptoms. Try not to worry!
The annoying thing about this is I feel the pain from it all the time so it's hard not to focus :(
Just chiming in to say I can relate with your anxiety. I had a brain MRI not long ago, and was also had severe anxiety waiting for the results. They came back clear, but I worry that the MRI missed something or didn't focus on all the right areas. It's difficult and draining, I understand. I'm glad you're getting the next one done privately, though, so you don't have to wait long. I'm the same way, and would much rather get it done and get the results in as soon as possible. I'm hoping everything turns out well for you!! :)
Thanks guys, appreciate the support.
At the moment the only thing reassuring me is that I never have the pain first thing in the morning.... it gradually worsens as the day goes on... surely that points away from things like a tumour as they are there whether you're sleeping or not? Lol.
Hopefully it's just an irritated/pinched nerve or something...
Serenity1990
05-12-14, 13:17
Thanks guys, appreciate the support.
At the moment the only thing reassuring me is that I never have the pain first thing in the morning.... it gradually worsens as the day goes on... surely that points away from things like a tumour as they are there whether you're sleeping or not? Lol.
Hopefully it's just an irritated/pinched nerve or something...
It could well be a pinched nerve. With my condition any nerve entrapment is massively amplified, so putting my arm on the armrest of my car makes the whole arm go dead, sitting on the toilet makes my legs buzz and bad computer posture gives me the most awful cervicogenic headaches.
I also notice my synptoms are absent in the morning then get worse as the day progresses. Could well be an anxiety thing!
By the way it is important to note that anxiety can cause all of the symptoms you describe here, and is probably the most common cause of neuro-like synptoms. :)
It could well be a pinched nerve. With my condition any nerve entrapment is massively amplified, so putting my arm on the armrest of my car makes the whole arm go dead, sitting on the toilet makes my legs buzz and bad computer posture gives me the most awful cervicogenic headaches.
I also notice my synptoms are absent in the morning then get worse as the day progresses. Could well be an anxiety thing!
By the way it is important to note that anxiety can cause all of the symptoms you describe here, and is probably the most common cause of neuro-like synptoms. :)
I really hope so. I guess by this time next week I'll know... I'm trying my best to think positively but because I suffer from health anxiety at the best of times, it's not easy! Thanks all of you for the comments though. I shall keep you all updated!
Sorry guys I'm getting anxious again... Just wondered if anyone could shed any light on this... so this burning pain on the back of my head... I'm SO SURE it only happens when I swallow food/a fizzy drink and it actually seems to start on the back of my throat on the left side, and then go up to the back of my head... does this make any sense? Almost like referred pain!?
Serenity1990
07-12-14, 08:19
Sorry guys I'm getting anxious again... Just wondered if anyone could shed any light on this... so this burning pain on the back of my head... I'm SO SURE it only happens when I swallow food/a fizzy drink and it actually seems to start on the back of my throat on the left side, and then go up to the back of my head... does this make any sense? Almost like referred pain!?
The nerves that go up and around the head originate in the neck. Neck tension caused by anxiety irritating these nerves is probably the biggest cause of head symptoms in anxiety sufferers.
GPs and the neurologist have both looked at me like I'm crazy when I've said the pain mainly occurs when I swallow. They both said "well sorry but there's no logical connection there...". The only person who seems to believe me is my physio who was actually very reassuring and told me yesterday that despite what my neurologist said, that nerve can absolutely become irritated in someone my age due to wear and tear simply because of the fact I have been doing heavy weight training for over 10 years. In the same way a 30 year old ex Ballerina can have the knees of a 70 year old, the same can be true with my neck due to training. These were her words by the way lol. So anyway that reassured me that it's nothing more sinister... but MRI tomorrow anyway... :(
Serenity1990
07-12-14, 12:53
GPs and the neurologist have both looked at me like I'm crazy when I've said the pain mainly occurs when I swallow. They both said "well sorry but there's no logical connection there...". The only person who seems to believe me is my physio who was actually very reassuring and told me yesterday that despite what my neurologist said, that nerve can absolutely become irritated in someone my age due to wear and tear simply because of the fact I have been doing heavy weight training for over 10 years. In the same way a 30 year old ex Ballerina can have the knees of a 70 year old, the same can be true with my neck due to training. These were her words by the way lol. So anyway that reassured me that it's nothing more sinister... but MRI tomorrow anyway... :(
Precisely. In my experience GPs and other doctors are terrible with structural stuff which is often glaringly obvious to a physio or similar.
Precisely. In my experience GPs and other doctors are terrible with structural stuff which is often glaringly obvious to a physio or similar.
I've noticed... and what really annoys me more is they are not only terrible with it, but they actively dispute what the other has said... And they wonder we are left feeling like crap afterwards with anxiety!
Serenity1990
07-12-14, 15:12
I've noticed... and what really annoys me more is they are not only terrible with it, but they actively dispute what the other has said... And they wonder we are left feeling like crap afterwards with anxiety!
Yep. I remember at the start of all this I had terrible headaches, which were like immense pressure from within my skull all the way around. They were literally so all-consuming that I couldn't do anything. I mentioned it at hospital and I was told to take paracetamol, which was useless. Then I mentioned it to my GP who decided it was nerve pain and put me on amitripaline, which made me so drowsy it was unreal, but did very little for the pain. Then I saw an osteopath, and she got rid of the pain in an instant (literally) by releasing my neck.
It's a shame, but medical degrees are so focussed on biochemistry that with the exception of very experienced ones doctors often simply don't have a grounding in structural causes for things. It's not their fault!
Very true. My neurologist knows I weight train etc... but just simply refused to take this into account. I guess they only know what they know but it would be so helpful if doctors were just a little more open minded to things outside of their specialities. I almost get the impression that doctors look down on people like osteopaths.
I'm very anxious about my MRI scan but also at the same time I realise that for a neurologist, this is really the go-to thing for anything head related. It's the GP equivalent of prescribing pain killers or antibiotics lol.
Serenity1990
07-12-14, 18:07
TBF in a way I don't blame them. They go through 10+ years of training and those other occupations go through three or four. But equally thats three or four years of just looking at musculoskeletal issues whereas the doctor might only have done one or two modules on such issues.
TBH with respect to the MRI, the first thing any neurologist will want to do is take a look at your brain. That's what they're specialised in and so they generally will. One of my neurologists was quite eccentric (he was a professor after all) and he spent a full seven minutes of my appointment (yes, I timed it) scrolling through the images seemingly mesmerised in his own little bubble, occasionally uttering things like "beautiful", or "a perfect specimen"; in fact he seemed to excited by it I was worried he might ask me to give him five minutes alone with the images! In your case the optic disc enlargement probably made this more likely, however as you've already had an MRI and the thing you're most worried about (tumours) stick out like a sore thumb, I really wouldn't worry.
I really appreciate the reassuring words. It's hard to not be anxious as I'm having irrational thoughts like, did they miss something in my last scan, or has something come up in the 3 months since that wasn't there before etc... But I guess in less than a week I'll know the results. It's just absolute torture until then.
By the way your neurologist story genuinely made me laugh lol
Serenity1990
07-12-14, 18:36
It is hard I know. But if he was worried about having missed something I'm sure he'll have looked at the images again. The trouble is doctors always have to rule out the really scary stuff first, and in neurology the scary stuff is pretty damn scary!
He had a brief look at the images the first time around (they weren't actually analysed by him the first time but I managed to get hold of the scans to take to him), but the scans of the whole brain were very general, although the official report of them did state at the end after the more specific stuff relating to my orbits; "no other significant cranial abnormalities".
By the way I don't have much knowledge of MRI scans of the brain and am just too scared to Google anything any more, do you know if they show up the nerves in the head/neck? As in would a pinched or irritated nerve, or even bone degeneration show up in an MRI?
Serenity1990
07-12-14, 19:23
A brain MRI definitely shows the whole of the head and the very top of the cervical spine (though the one showing the whole c spine is ordered specially); I think mine showed down to C4. My understanding (and bear in mind I'm not a doctor here) is that if there was any serious nerve impingement it may show, but the more minor things won't.
Ahh ok, gotcha. Well mine tomorrow is head and neck this time... so I'm assuming whole c spine this time... although apparently the nerve causing my pain is the one that originates at the very top of the spine. I know I'm repeating myself... sometimes it feels good to just go over things again and again... lol.
almamatters
07-12-14, 20:50
Good luck for tomorrow, I hope all goes well for you. :)
Thank you, appreciate the support. This place is awesome :)
Serenity1990
08-12-14, 10:52
Good luck today, I'm certain it'll go just fine. :)
Well, just had the scan... radiologist said the results take a day or two, but my neurologist said he likes to send them off to his own guy to get them analysed as he thinks he's better qualified to analyse brain scans... either way hopefully by the end of the week I'll know.
I must say my anxiety is through the roof right now simply because now I know that someone has actually seen my brain etc now and may well already know if there's anything wrong or not... sigh...
Serenity1990
08-12-14, 17:32
Whilst the technicians who take the scans aren't qualified to interpret MRIs, if anything blatantly obvious like a tumour appears on the images they aren't allowed to let you go home. That's what I was told when I had mine. ;)
Really? For both NHS and private? Who told you this? Sorry for the questions lol
Serenity1990
08-12-14, 18:09
The technician. I did the typical hypo thing and asked how it looked as soon as they were had the images. The technician in charge said that they weren't trained to interpret the images, but they are trained to spot the very dangerous stuff and if she could see anything worrying in there she'd have sent me straight to casualty.
This was a private clinic paid for by the NHS.
Wow I didn't know this... I really hope this is true for where I went today...
I did the same today (and even last time lol) and asked "so how does it look...?" and the guy said what I thought he would: "sorry we have to let the experts look at it". I knew he'd say that so I wasn't surprised but hey, gotta try right? :P
almamatters
08-12-14, 19:14
I was also told that if there is something horrible on a brain scan you do not leave the hospital and that they ask you to wait. Mine was a NHS scan at the hospital.
I know I'm just reading into everything now, but when I got out of the scanner, the technician said to me, "you've made a next appointment with your doctor right?".
I had my scan done privately so I'm assuming he was just checking I had a follow up appointment made for the results... There were notices all over the waiting room about making sure you make an appointment for your results etc so I guess they are just making sure, but part of me can't help thinking he saw something and wanted to make sure I was coming back :/
almamatters
08-12-14, 19:30
I know I'm just reading into everything now, but when I got out of the scanner, the technician said to me, "you've made a next appointment with your doctor right?".
I had my scan done privately so I'm assuming he was just checking I had a follow up appointment made for the results... There were notices all over the waiting room about making sure you make an appointment for your results etc so I guess they are just making sure, but part of me can't help thinking he saw something and wanted to make sure I was coming back :/
I'm not just saying this but I was asked the same thing, I told them I was due to see my GP in a fortnight and they said that is fine the results will be sent to them. I remember trying to read into facial expressions, things that were said but they didn't give anything away . Did you pay for the scan privately? Sorry if I have missed this info earlier in the thread.
My first MRI back in September I had it with the NHS, but it took 2 months just to be given my September appointment and then a further 5 weeks to get the results afterwards... I couldn't bare to go through that again so this time I paid for it privately. Definitely has dented the bank account but I'd rather that than wait months again :(
After my first scan I was convinced the radiologists had very sympathetic and concerned looks on their faces... I obsessed over this for weeks, such is our way of thinking I guess lol
Can I just say that I would be a mess (well more of one anyway...) if it wasn't for this place. I'm so glad I joined. I am feeling very anxious about my results today and I was just reading through everyones replies to this thread and feeling more reassured.
So thanks. :)
Serenity1990
09-12-14, 13:13
No worries!
When the results come back normal will you stop worrying and get on with life? :)
I will do my absolute best to... but as well as that, I hope that my experience can help others on here (if everything comes back normal anyway lol) and really hope I can help to reassure other people too.
Feel like I'm using this as my personal journal now...
Really anxious tonight as I've had a headache on and off for the last few days... It's all over and hurts more when I move my head. Obviously I'm linking this to my MRI scan and worrying that it's something serious...
I think it's probably more likely to be from the physio session I had on Saturday where she really focused a lot on my c-spine... Can you get headaches from that? Still persisting days later? Just feeling crappy and anxious tonight. Really hope this is over soon.
I'm going absolutely out of my mind...
Rang my neurologist's secretary an hour ago to see if they've received my results through and she said that they are reporting on it at lunch time... whenever that is. Then she said unfortunately she's going on a training thing between 1-3pm so if she's not there when the report comes in, she will have to get someone else in the office to scan it over to my neurologist who just happens to be in court today instead of in the clinic... typical... of all days for him to not be in.
Then she said that if the report says everything is normal, she can tell me over the phone, but if not, she will have to defer to my neurologist to decide what to do etc... And when I asked if he would be able to call me today she said she really doesn't know as he's in court...
I literally feel sick. I can't eat or do anything. Basically if I don't hear from the secretary, that either means that she's not back from her training thing, OR it means that my results were NOT normal... I am seriously going crazy right now waiting.
Serenity1990
11-12-14, 13:09
This is why you should never ring them!
I just really don't trust doctors/secretaries to get back to me as soon as they know. This is from past experience. I've found that if you don't chase them up, they sit on things for much longer than necessary.
almamatters
11-12-14, 13:49
Hi, I don't think there is anything wrong with chasing results as I do it as well but it can create more anxiety. I suppose some people are more laid back about these things than others. Try and keep calm, I know how difficult it is. I had blood tests on Monday and having been ringing everyday for my results even though I know full well they would ring me if there was a problem. I hope they get back to you today for your own peace of mind. Take Care.
All normal... ALL NORMAL.....
I actually cannot believe it... The list of symptoms I had and my scans are normal. I am so relieved I could collapse. Thank you so much guys for the support on here. I really hope I can reassure others now!
almamatters
11-12-14, 18:15
Hurrah!!! I'm so pleased for you. It's a great feeling isn't it. Take Care.
Out of all my years of health anxiety this has by far been the worst experience I've ever had... I'm just so happy I can get back to life again.
Serenity1990
11-12-14, 19:29
All normal... ALL NORMAL.....
I actually cannot believe it... The list of symptoms I had and my scans are normal. I am so relieved I could collapse. Thank you so much guys for the support on here. I really hope I can reassure others now!
Knew it! So you going to keep your promise now? No more worrying?
Absolutely. Seriously like I said this has BY FAR been the worst period of health anxiety I've ever had in my life. I'm sure I'll get anxious again about things but the list if symptoms I've had and for it to end up being nothing serious... I have a new perspective now....
Serenity1990
11-12-14, 21:26
That's really good to hear, I'm over the moon for you! Acceptance is the first step on the road to recovery, it's far easier thereon in. ;)
All normal... ALL NORMAL.....
I actually cannot believe it... The list of symptoms I had and my scans are normal. I am so relieved I could collapse. Thank you so much guys for the support on here. I really hope I can reassure others now!
I hadn't replied on the thread but I did follow it. My gut was spot on ;) Glad to hear all is good and glad to hear a positive response as opposed to doubting the results. Now, put that dragon in it's place and enjoy the holidays!
Positive thoughts
I can't very well doubt TWO sets of head MRI's now can I haha :)
I still have things I wouldn't mind resolving such as the flashing in my right eye... the twitching left eyelid when swallowing and the burning sensation on the back of my head, but now that the most serious things have been ruled out, they are more bothersome than worrying... I've been having psychotherapy for the past few weeks and will continue with that to keep my anxiety controlled also... But oh yes, I intend to enjoy the holidays now, and hope you all do too! :)
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