94 The big loud tunnel monster

This week I had an unexpected meeting with an MRI machine, or “the big loud tunnel monster”, as one of my fellow MSers likes to call it!  My appointment was originally on 25th July, but on Friday, I received a call from the hospital asking me to come in the following Tuesday.  The timing couldn’t have been better …I had a weekend with family planned (my sister in law’s 50th), which would keep me occupied, with little time for anxiety to build.  

I had a lovely weekend with my family – kotlich, a Blue Grass live band, Swan Brewery beer and some metal detecting thrown in! 

My scan appointment was in the afternoon so easy train travel (using my new Disabled Person’s Railcard) was possible.  I had a couple of hours at work in the morning and by chance spent some of it with a psychologist who works with my team.  I work with children who are in care, many of whom have experienced trauma, loss or abuse, so Sally’s input is invaluable to our work.  I mentioned to Sally that I was having an MRI scan that afternoon and my slight claustrophobia was concerning me – she gave me some advice about deep breathing, meditating and focussing my attention on my bottom, legs and feet.

I arrived at the hospital in plenty of time to confirm I don’t have a pacemaker or metal fragments in my eyes (for the umpteenth time) and was soon being inserted into the machine.  

I must say that this was my best scan yet, in terms of managing my claustrophobia.  The staff were kind and helpful and the whole set up helped to keep me calm.  When having a brain scan, there is a plastic head frame used to ensure you keep totally still.  This one had a mirror system, a little like a periscope, so that I could see my feet and the window to the control room, where I could see the radiologist monitoring a computer screen.  This really helped me to stay in touch with the world outside the machine and reduced my claustrophobia.

I was in there for just over an hour (being tall, I have a “long spine”) and managed to follow Sally’s advice to focus on my lower body.  This was really helpful – so much so, that I later told the radiologist and she said she would be giving this advice to others in future.

Once recovered, I enjoyed half an hour in the sunshine outside Sheffield Train Station, before catching the train home.

The next day I phoned the transplant team as requested and informed them my scan had taken place.  Apparently Professor Sharrack can now look at the images through their computer system straight away, although the radiologists report will take another 4 weeks.  I really am impressed with the system in Sheffield as here, there is a 2-3 month wait for scan results and the neurologist never actually gets to view the images.  

So now I wait for a further appointment sometime mid August for further discussion.  Keep your fingers crossed that something shows up on that scan that convinces Professor Sharrack I am suitable for HSCT. 

Here are my MRI scan top tips …

  1. Arrive in plenty of time to have a chat with the radiologist, answer the metal-in-your-body questions, remove any piercings (ladies, you will have to remove your bra) and generally get yourself ready.
  2. Tell the radiologist if you are claustrophobic (I have found sometimes they hardly respond and other times they do what they can to reassure you before and during the scan).
  3. If you are to have a contrast agent injected and you are anxious about needles, it might be helpful to tell someone when you arrive.  I once had them pull me half out of the machine to inject me, which I found stressful, despite being fine with needles.  On this occasion, they put a cannula in my arm before I went in, so it was easy for them to administer the contrast agent without further needles. 
  4. Wear clothing that has no metal fastenings or zips.  They will provide a hospital gown if you are wearing unsuitable clothes, but it is fairly cold in the machine and gowns don’t cover much!  You can always ask for a blanket if you are cold.
  5. You will have to take your shoes off (most have metal in the fastenings) -bring a pair of socks rather than having bare feet, so that your feet are warm and comfortable. 
  6. Make sure they put a pillow or support under your knees as this takes the strain off your lower back and hips (you are going to be lying still for a long time).
  7. Don’t be alarmed by the sound of the machine!  Despite having ear plugs in and headphones on, it is very LOUD!  There is no regular pattern to the sound – banging, whiring, grinding, clanking, low and high pitched metalic sounds.  
  8. It’s hard to block out the sounds and truly relax, but deep breathing and meditating can help and definitely focus on your legs and feet (so glad I learnt this …thank you Sally). 
  9. Take your time afterwards.  I often feel dizzy after a scan – probably due to anxiety, relief and the effect of lying still for a long time.  

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The big loud tunnel monster was named by @MSWarriorPrinc1 on twitter.

More information on Swan Brewery can be found here …Swan Brewery

Thank you to friends and family for all your ongoing support on this weird and whacky journey xx