Hi, I am new to this site, although I've been reading for a wee while. My story is this: Been a drinker since my late teens, (now 59), mainly beer and wine (2 - 4 beers p/day, plus 2 - 4 glasses of wine or 1 - 2 G & T). I have never ever been a "hard alcohol" drinker, or alcohol dependant - the full drinks cabinet can sit untouched for weeks, but if I have company I tend to have a "little party". 2014 I had an ultrasound of the liver as I had discomfort. The ultrasound indicated liver problems (alcohol related, according to the nurse who phoned), so to avoid waiting, I booked myself privately to a Liver Consultant specialising in Alcohol related problems and had numerous blood tests, one of which showed I have A1 alpha trypsin deficiency and my GGT was 45. I have only just found out that my AFP was 16 (norm 0 - 10). I had a Fibroscan which showed Fatty Liver but other wise normal - a Median of 6.0. No-one mentioned the AFP levels, and life continued. A couple of years later, I had more pain (I have arthritis in my spine for which I have taken Co-Codamol, Naproxen & Amitriptyline for 10 - 14 years) and was booked for an MRI Scan. I am hugely claustrophobic and unfortunately I freaked out on the day and the scan had to be aborted. I had a CT scan instead and all appeared to be fine. I have been seen each year since for a check up. I have moderated my drinking habits considerably, but this March was advised that my bloods had increased (GGT 59), so more in depth bloods were taken. The AFP has increased to 25.1, seemingly it was 22.1 in 2017, but this was not brought to my attention. I was called for a triple phase CT scan which has shown a spot on the Liver. So now I need an MRI and Liver Biopsy (been waiting 6 weeks). Not only am I terrified about the outcome of these procedures, but I am hugely claustrophobic and have no idea how I am going to endure the MRI - I couldn't the last time, and this one will take over 50 minutes!. I've explained the severity of my problem with the Consultant, but he won't arrange sedation. I've offered to pay - not interested. I've enquired about going privately - they won't sedate either! My other problem is I have a HUGE fear of needles, and several years ago a dear friend (suffering with Liver Cancer) gave me chapter and verse of how excruciating her biopsy was, so I have no idea how I am going to get through that either. There are a variety of other scans/tests etc. which I can deal with, but these two HAVE to be done, but I really don't know how I can cope. In an attempt to try and ease my Liver issues, I stopped all pain relief (and of course booze) 6 weeks ago, but am now in total agony with the arthritis. Sleep has always been a big problem, but now is virtually impossible due to my pain. Last week I had a real nasty "episode" and I don't know if it's Liver related. Initially it felt like acid reflux (I've suffered with that for years (have been taking Omeprazole/Ranitidine - but stopped that too now), but it didn't go, and it was really high up at the bottom of my throat. It got worse and began throbbing and if I leaned forward or tried to lay down it was unbearable, it really made breathing painful. I put up with it for 24 hours, but ended up at the Dr's who said "take Gaviscon, but if it gets worse go to A & E". He booked me for an ECG the following day, which was clear, but I struggled with the pain for 2 days before it gradually eased. I've done my best not to Google, but even reading some of these posts here, its hard not to build a picture of all the things that might be wrong with you! For now, my biggest worries are how to get through the MRI and Biopsy, and if anyone has experience of how to get the support to help you through these, I would be sincerely grateful. We can put a man on the moon, grow a baby in a test tube, but there is no help for easing the distress of these procedures - isn't the fear of the results enough? Thank you in advance, and stay well everyone xx
Claustrophobic, but needing an MRI - h... - British Liver Trust
Claustrophobic, but needing an MRI - high AFP
I perzonally think you should look up the clinics for alpha 1. There are a few around the country now.what area are you in.
Hi,
I've had both procedures without any problem and so do many others. However, that is of no help to you with your specific obstacles to having these tests. There is little point in me telling you how easy it is, as for you its far from simple.
As there is a problem that is severely affecting your life, you should be able to access NHS treatment for your phobias. You could approach your GP and ask for an urgent referral for therapy to help you overcome this particular problem. The referral should be considered 'urgent' as you need to be able to have the procedures and not having them will have an impact on your health.
You can also try to find a British Liver Trust support group near to you. Here are links which I hope can help you discover ways to get advice / support.
britishlivertrust.org.uk/fi...
britishlivertrust.org.uk/su...
britishlivertrust.org.uk/su...
nhs.uk/conditions/phobias/t...
Take care,
Jim
The MRT is not as bad as you think. I thought I was going to be put in a box and it closed. No - it is a semi-cylinder shaped shell open at both ends. It ain't that bad. You need to be awake because they ask you a few times to breath in and hold your breath for a few moments. But best of all you get a rubber onion-shaped thingamajig in your hand to squeeze for emergencies if you really can't take it no mo' and start freakin' out like the Incredible Hulk. Just having that takes all the pressure off. Go for it!
MRT (Magnetresonanztomographie) = MRI
Thank you Danubian, I did attempt an MRI 2 years ago, but absolutely freaked out - my panic was completely out of control - I scared myself! I know what is going to happen, so this time, it will be even worse!
Hi
My friend had a panic attack when she was having an MRI, she was given sedation/relaxent at her next appointment which she said was great. Love and hugs Lynne xxxx
Hello,
Welcome to the forum
This is a horrible situation for you to be in and for me to say that the fear of the procedure is worse than the actual procedure isn't much help! I do know of occasions where sedation has been used to help someone get through the MRI and also biopsy although there can often be resistance to this from medical teams. It is also possible for hospitals to arrange for patients to have an open MRI (ie not in a tube) - it is quite a challenge to organise but it can be done - maybe you can ask about this? The sooner the better, elevated AFP's certainly need to be investigated quickly.
regards
Thank you so much for your reply. Unfortunately I am not getting any help from my Consultant. He is completely aware of my Claustrophobic condition, and the fact that the earlier one had to be aborted, but he won't organise sedation for the MRI. I've called the Radiology team and they say it has to be arranged through the Consultant. I've spoken with my private healthcare cover, who will pay for it to be done privately, but the local private hospital say they can't do it. I booked a telephone call from my GP this morning as a last resort, in the hope I could convince him to give me sedation, but he hasn't phoned! Ever felt you're fighting a losing battle! My MRI is 15th June which will be 9 weeks since the CT scan which showed the "spot", I just can't risk not getting through the MRI and having to wait all over again for people to get their act together and actually listen to what I am trying to tell them.
Perhaps you should speak to the Patient advice and Liaison department at your hospital and vent your frustration at not being listened to. I hope that your GP will listen to you. Ask him whether he knwos about open MRI scanners.
Time is critical when it comes to scans and diagnosis.
I found this website about upright scanners, I suspect it would be difficult to get it organized but you never know.
Good luck
I’am with you on the claustrophobia, I had to have a MRI about a month ago due to fluctuating AFP. I just got the the results today.
The lovely people on here gave me lots of tips have a read of the posts it may help. The one thing I found good for me was knowing exactly what was going to happen. So I could work on everything individually that was causing me any concern, by the time I went for the scan I was so much calmer than I thought I’d be.
Tips that helped me were: I got some Valium from the GP to take if I needed it: I started practising meditation before the test so I could focus on it during the test. I Asked the radiologist everything I should expect, I was still afraid I’d move, so I got them to let me know when I could move and when they were going to scan. That made it so much easier, each time the machine was running I knew I was one step closer to being successful in getting it done , so even the noise was a little comfort. The best thing I did was I took with me a cheap eye mask, I put this on as soon as I laid on the bed, before they did the contrast. I never took it off until I was well out of the machine. Some places have music which you can ask for that may help. Also I found it useful to wear socks, or take some to put on, my feet would have been so cold without them. Hopefully your GP will prescribe you something.
You can have someone in the room with you if you ask, you can’t see them, but a friend of mine felt better knowing her husband was holding her foot, now that must be love. Take cake and let us know how you get on. I’ve never had a biopsy I didn’t need one for my diagnosis but I’am sure others will give you some help.
Candy, thank you so much for your kind words. I've been getting more and more nauseous this afternoon, worrying about how I'm going to get through it and strangely enough as I sat here reading your email, my GP phoned and has agreed to give me 2 diazepam to help me. That in itself is a huge relief, I agree with the eye mask, I don't want to be able to look! I understand about the socks/cold, but would you believe that even socks can make me feel claustrophobic! However cold I might be I can't wear them in bed! Thanks for all the other tips too, I'll give the meditation a try too 
You didn't say how your results were, I also have raised AFP (25.1), I really hope you're OK and the results were better than you could have wished for. Once again, thanks so much for your kindness, it's gone a long way on an otherwise grim day xx
Ok. Lets look at this logically.
What do you think is going to happen to you whilst have the scan ? Do you think its going to hurt you or cause you any harm?
The true correct answer is no.
In fact its going to help you. Its going to inform doctors of any potential problems going on inside your body which means if there is a problem the doctors can treat you and improve your health... yes ? So that means the scan is a GOOD thing so theres no need to fear it.
Now, alcohol which you have been consuming is a poison. It has the potential to cause your body harm and many serious illnesses and even a premature death. This is a BAD thing.
Which of the 2, a scan or alcohol should you be affraid of now ?
Nice theory but unfortunately knowing it's a "good" thing doesn't help when you have claustrophobia, it's not something you can overcome with logical thinking.
Logical thinking is exactly how to overcome phobias...
Going back to the situation where the fear first began followed by logical thinking is the professional method for curing a sufferer of their phobia
Laura, it’s not the scan that causes the fear, its the confined space.. any confined space.
I can’t even go in a crowded cinema or theatre unless I sit on the isle seat ,even then it provokes symptoms, that’ logically is supposed to be a pleasurable experience. Sorry logic doesn’t come into it. You can’t reason away fear of fear.
Well put Candy, I have my daughters graduation coming up and I'll be shut in a huge hall for 2 hours, unless I can sit at the back by the door (not under my control) I will be in panic mode !
People who don't have claustrophobia cannot possibly understand the feeling.
Candy12 and Bantam12, you are both spot on, and thank you. Just knowing there are others out there who really understand the extremity of the anxiety helps me accept I'm not crazy! it is something a non-claustrophobic would never be able to understand. Sometimes the mind quite simply is not logical.
Candy12 and Bantam12, you are both spot on, and thank you. Just knowing there are others out there who really understand the extremity of the anxiety helps me accept I'm not crazy! it is something a non-claustrophobic would never be able to understand. Sometimes the mind quite simply is not logical.
you obviously don't understand severe anxiety and how debilitating it is !! quit the lectures
Im just saying there are therapists who can cure phobias of all types and this is the method they use. But sure if seditives, meditation, and blindfolds will work for the scan then of course do that.
Long term though if you want to rid yourself of a phobia /anxiety , therapy works as someone else has suggested too.
Bless you for your support x
Norfolk and norwich. 01603286286.
Xx
Hey hun I share your fear of small spaces I’ve been told you can go to your gp explain and ask for a sedative which really helps from what I’m told I haven’t done it personally as I have had a fair few allergic reactions to meds so I close my eyes and count in my head yes I still get the throat closing can’t breath feeling and I consented harder on the numbers in my head or if I can hear the radio through the noise I sing along in my head it helps keep me calm some picture holidays but meds work for the people braver than me wh take em xxxxx good luck xxxx
Many private hospitals have an open MRI machine.
If your paying you could have one in a couple of days max!
I had one many years ago at Chelsea hospital.
George Best was a patient at the same time!
If you have insurance why are you on a waiting list?
I was transplanted 30 days ago due to PBC and irrelevant itch.
I too was terrified over the mri but I had to have a word with myself and I zoned out and shut my eyes from the first second I was on the bed and kept thinking I was on a stunning beach lol.
I didn’t open them untill the end. !
The biopsy you don’t get to see anything
You can again shut your eyes and the stingy bit is when they inject the local Anithestic, it feels in uncomfortable but manageable. The worst pain is when they actually take the biopsy .. I got pain in my shoulder which is very common but it soon went.
Maybe try some deep breathing of the Internet to help you and focus that this is for you to endure you are happy and heathy?
I know everyone’s experience are all different but focus on they need to do this to make sure you receive the right treatments.
Not sure if you are still drinking but it doesn’t sound like you should be even though it can be tough to give up
Keep us posted on how you get on and good luck x
Why don't you ring the radiology department and explain your fears as I know from experience how helpful they can be .good luck and I feel for you .sometimes the anticipation is far worse than the event! X
Thank you Pollyantha, I did try that - they were very nice but the outcome was the same, appreciate your time tho x
Erica, I completely relate to you. I am terrified of MRIs. I had to have one for a brain scan several years ago at a time I was extremely ill with bronchitis and a sinus infection. I couldn’t stop coughing. The MRI lasted one hour, it was absolutely one of the worst experiences I have had. I have claustrophobia and extreme anxiety. I take trazodone and xanax to help but I still suffer the occasional panic attack. I hope you can find an open MRI option. I wish you strength and luck.
These are just my own personal views. There is a procedure called liver ablation treatment. This is performed when a person has tumours on the liver.
The patient rendered unconscious during this procedure. A anaesthetist moves the patient in and out of an MRI in order to located the exact position of the tumour. While this procedure is not at all what need to have done.
I'm sure that in exceptional circumstances, an anaesthetist could be present while you have the MRI. It might be worth asking if this can be arranged. Having you become anxious and stressed, isn't going to achieve anything. I hope this helps.
Hi Richard and thank you for your reply. I have again (in writing) reiterated the severity of my problem to my Consultant, and am hoping he will see that an arrangement such as you outlined would be the practical way forward. I have to have this scan, I know that. It's a wait g game now, with crossed fingers x
It came to me after l wrote that post, that during the MRI they may need you yo inhale and hold your breath. But l hope there maybe ways round this.
Have you considered hypnosis at all? I was extremely sceptical about this, but my daughter was suffering so much with IBS.The hypnotherapist was registered and professionally trained. Not someone you would see in a nightclub where people think they are chickens! I was in the room with her and I was astounded . He was excellent and my daughter,once under , was speaking freely about her worries. Apparently she was being bullied at school by just one girl. This was her trigger for IBS. He recorded the whole session and she was given a tape , it was 24 years ago lol. She hadnt said anything because she doesn't like to be the centre of attention. It made a huge difference to her and eventually this girl was expelled. I will be honest, I tried it to stop smoking. Nothing, He explained that a small percentage of people cannot be hypnotised and I am one. Those who think Laura was being condescending are so rude! She was suggesting a tried and tested therapy, being practical . Sedation is often called milk of amnesia because most people have no recollection of a procedure afterwards. In this case you need to be able to follow instructions re breathing so this is the most likely reluctance to sedate you.. I am terrified of the dentist. I even know when this fear started. School dentist, tooth extraction and can still relive it 55 years later! A black rubber mask forced on my face! The smell of clove oil totally debilitates me too.Again from this day . Why can I still go ? Only because the fear of losing my teeth is greater My dentist is aware of my fear. Laura was simply pointing out that the possibility of serious liver problems is a good incentive to beat this phobia, by any available means. We are born with 2 innate fears, falling and loud noises. Hence most people get a rapid heart beat if woken by a loud bang. I have not lost the fear of falling, it is this tat makes me scared of height. Ok in a plane because you can't fall out. Worth you trying both methods, , they may just work Hazel xx
Thankyou Radnor xx
Thanks so much Hazel, many years ago I spent a small fortune on hypnotherapy (2 different practioners) in an attempt to help with weight loss. Sadly the only loss was in my bank account! I really appreciate you taking the trouble to suggest it, thanks x
Hi Erica,
I don’t know if I’ll be of any help but want to let you know that I do not like confined spaces either and was nervous about my 1st MRI. I do the same thing that Melwoods wrote to you in a previous post: I close my eyes before going into the MRI tube and do not open my eyes at all until the MRI is done. This has gotten me through and I’ve now had several MRIs. I’ve been in a clinical trial and have had to have one every 3 months for the past year. I’m having another in 2 weeks. Closing my eyes has gotten me through. It’s true that you can not be sedated because you do need to hold your breath when told to, but I’ve also heard that you can take a Valium or a Xanax for anxiety prior to the MRI. In fact my own sister has told me she takes a Xanax before having an MRI.
As for the liver biopsy: I was very afraid about the biopsy because of things I’d heard and read, but I needed one in order for the doctor to determine whether my NASH was stage 2 or stage 3 fibrosis (It’s stage 3). And then I signed up for a clinical trial which required the MRI & biopsy prior to being accepted. The biopsy went fine. In my case the place I was sent for biopsy actually sedates the patient for that, and after I was sedated, then gave the local anesthetic and did the biopsy. The surgeon told me beforehand that I would probably have discomfort along the right rib cage and possibly my shoulder for 2 or 3 days. In my case, I did have discomfort along the rib cage for 2 or 3 days, but did not have shoulder discomfort. I now have to have a 2nd biopsy done for the end of my year long clinical trial. It’s scheduled for June 20th and I’m not worrying about it at all because the 1st biopsy went fine and was not a bad experience. I just wanted you to know this in case it alleviates some of your fear.
I hope that you are able to get through the procedures so that you can get answers you need. Good luck!
Hi Erica, my fiancé is the one with cirrhosis but I have massive anxiety and a lot of irrational fears and phobias. I’m not saying your fears are irrational, I don’t mean that in a cruel way. But mine are and I accept that haha I also have agoraphobia and it’s creeping back, I haven’t left my house in the last month and a half besides a quick trip to the clinic for my heart meds. I’m not trying to make this about me, I’m just going to offer some suggestions to maybe (hopefully) help you a little because I know how hard it is.
I don’t know what you’re allowed to take with you while you have the test done or if you can have any candy but this is what helps me- sucking on a mint, taking something “safe” with me that holds meaning to make me feel better, a wet cold cloth to run along my wrists, face, neck, and arms (the cold helps me to calm down a bit), close your eyes and imagine that you are flying out of your window, taking the time to notice all the objects around you and “fly” as low or as high as you want. Take note of the cool breeze you “feel” as you leave through the window, notice the flowers or the silhouette of the trees against the night sky etc. It can be hard to do when you’re dealing with a fear you have, but the key is to distract your mind. It takes practice but it has worked for me in the past. Sorry for the long reply, your post just got to me. It’s hard living with anxiety and phobias and telling yourself that they’re irrational doesn’t work because you already know that. Brains are “stupid” sometimes haha anyway, good luck, I hope it goes well, and know that you’re not alone.
Hi erica1960,
I am just replying to your problem with MRI's. My husband is claustrophobic and is the one with cirrhosis. He goes to a place that has what is called an Open MRI machine and that he can manage as he is not totally enclosed. I don't know if there is anywhere near you that has one, we live in the U.S.
The problem with sedation & mri's is the technician asks you to do certain things and people who are sedated have great difficulty doing them so the mri is of little to no use. Your doctor may not have told you the reasons behind "no sedation", doctors aren't always as informative as we would like.
Wishing you the best,
Mary
Hello, normally I respond in the liver clinic forum, but health unlocked seems to have posted your topic here :). I don't know what half those things mean or are, but I am sure the experts in the liver forum can tell you.
I have non alcoholic, fatty liver disease, cirrhosis.
My father died from liver cirrhosis, alcohol related, so throughout my life I was teatotaller, one thing I can tell you, if you need to cut out alcohol completely, even with non alcoholic fatty liver disease I cannot go near alcohol, and that includes, preservatives, anything fermented etc.
My father was forever entertaining and buying wine and then justifying it to himself that he needed to make sure of the quality, quick taste here and there, spirits, beer etc.
I had to have a liver scan done simple procedure, sort of like watching the video of them checking the development of babies, they spread gel on you and then hold a device against you which generates an image, they take shots of you and send them to the specialist.
The biopsy took about 45 minutes, usually takes 15 minutes, in my case, they couldn't find the liver. They gave me a local and then stuck a needle into me, and then decided to take some pieces of my liver. It;s supposed to be quick and painless, it wasn't. (personally I think at this stage the local might have warn off) the procedure was incredibly painful and I came out of there writhing in agony, I was the first one in, and I am sure it shook a lot of the other poor patients. They gave me codeine after the procedure which was completely useless. The trick which I neglected at the time, was you need to push down on the area where the needle went in and the liver was biopsied, I found this really helped and within maybe an hour, the pain was gone.
I first discovered I was claustrophobic when I was having my first MRI done. I still have nightmares about it years later. I am 6ft4 and a tad overweight now, the top of the MRI machine comes to about 5-7 cm from my face, I have to hold my arms above my body, sandwiched in like a sardine. I barely made it through the scans and at the end I was sooo close to pushing the button and giving up. In this case they put me at the other end of the machine where I could at least tilt my neck and look out of the machine, every so often, and this helped a lot.
Unfortunately people have different levels of claustrophobia, just as they have different body builds, I am sure with a smaller build the feeling of being trapped would be a lot less, because you are not right up against the machine.
Recently I was diagnosed with carpal tunnel in my hands and arms (hell no) and they wanted to do another MRI of my head. Mention claustrophobia and it's like it goes in one ear and comes out the other. Worse was they wanted to put me at the other end of the machine, fully enclosed and secure my head down with a mask...seriously.
So the good news is, there is something called an "Open MRI machine", where you can stand up and be scanned), bad news, Addenbrookes' hospital, dont have one.
So went for the second MRI, nightmares for 2 weeks and finally the day before arrived, ofc I cancelled the appointment, seriously!
The hospital staff will tell you, you can push the button if you have any problems and they will immediately stop the process...this is probably when you meant when you said ab ort the process. They can also put you to sleep with a mild sedative, might work, who knows, ofc having to secure your head and waking up this position (since I have sleep apneoa as well), no thanks. and then there is also the option of listening to music, which has bugger all to do with claustrophobia, and more to do with the noise.
Sort of reminds me of the Scottish elevator joke, if they had music as well youtube.com/watch?v=sAz_Uvn...
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