MRI (How to guide)

Today I had another MRI. The last few months I didn’t have any MRI so I had many sleepless nights because of it. I always start with telling the MRI operators that I suffer from severe claustrophobia (which is true) and that the scan only can be successful if a special protocol (mine) is followed. The MRI operators can help you by:

• not fixating your head in the cage (usually they put small pillows in this cage) but allowing you to insert small ear plugs instead   
• demonstrating the possibility to get out of it immediately 
• telling you in advance how long the total MRI would take and then how long each specific scan will take 
• installing the drip with the contrast liquid at the beginning of the MRI
• allowing your spouse to hold your feet or ankle 

ad 1) They will only not fixate your head if you promise to keep your head (or the part of your body that forces you to undergo the MRI)  motionless. Otherwise they have to start all over again and that is in nobodies interest (for sure not yours). I prefer to hear everything (so no earplugs) but the operators will not allow you because of the noise.    

ad 2) This is vital. The first times I had to undergo an MRI I asked them whether they could show me how long they needed to get me out after I squeezed the emergency ball, to show me how the door opened from the inside, how to unlock the cage (if your head is not fixed in the cage you can pull out your head instantaneously in case you get a claustrophobic attack) etc.

ad 3) To me this is vital information and I presume for you too. With the latest equipment (minimum 3T  the Siemens Symphony) a typical brain scan takes between half an hour up to an hour and a half and comprises many short scans with different wave patterns. You can better prepare for a long scan if you know that you have to lie in the MRI tunnel for an hour instead of a quarter. And if the operator (in case of a long scan) informs you for each short scan how long it will take you calculate how long you still have to lie motionless in that bloody tunnel!

ad 4) The operators used to install the pump or drip with contrast liquid by interrupting the MRI scan, moving you out of the MRI device, sticking a needle in your arm and waiting until the contrast liquid reached your brain and rolling you back in the tunnel. That seems to be nice if you have claustrophobia but you have go into the tunnel twice. Nowadays you can ask to stick the needle in your arm in the beginning of the MRI scan. That saves time and you don’t have to suffer from a second trip through the MRI tunnel!  

ad 5) You can hear the control room but they can’t hear you. Squeezing the ball is one solution but that is the last resort. Instead I agreed with my wife (who is standing next to the MRI device holding my feet) a kind of “feet-code”. Any code will do as long as you both what is meant. She can then signal the operators in the control room (if necessary). 

I followed these basic steps and forty minutes later I was ready. I was so relieved. If these steps don’t help you need psychological help. The psychologist will either use “flooding” or a technique called “systematic desensitization”. If you suffer from claustrophobia related panic attacks probably the systematic desensitization approach works best. I have another three months to go before I need another MRI. Hurray, I made it!

Tomorrow

Tomorrow will I hear the outcome of all the tests I hated so much: MRI, fMRI, MEG and Neuro-Psychological Tests. Peanuts in retrospect. Peanuts compared to tomorrow because tomorrow I will hear the outcome. I would like to think that it is the beginning of a new life rather the end of the old. I’m not superstitious but now I am. I don’t know what to expect. What will I write tomorrow around this time? I dare not think about the many possibilities.

Life around me continues at the same speed, it is me that has slowed down. Will I get the opportunity to merge with my old life again? Should I want that to happen or does it not matter what I want anymore? I dare not make promises to myself. I feel that I have almost come to a complete stop. Some friends are planning their holiday, others are fighting for their job. It is so unimportant what we do, we make so little difference. How can I mobilize the energy in myself, the energy that I need to move on. Should I want to do so.

Tomorrow will I hear the result. I hope to hear that surgery, the awake craniotomy, is still a valid possibility. That the tumor has not grown. That the prognosis is still good. I’ll keep you informed.

fMRI: The real thing

D-day: today the test I feared most was performed: the fMRI. The same no-nonsense nurse/operator who performed the trial fMRI a few weeks ago did, as he had promised, also perform this real fMRI scan. A wonderful trustworthy guy. I had asked him to give me some time prior to the scan to discuss my ‘fear factors’. He listened very carefully and told me not to worry (he was also informed by the psychologist).

He was willing to reduce the amount of foam that was to lock my head in the MRI ‘helmet’ but made me promise that I would not move my head. He told me that it was possible to break the scan into segments (I asked for that) but advised against it. It would increase the length of the total procedure as some recordings would have to be performed again. Just the fact that I could was enough for me. He also promised to keep me informed about progress of the series of recordings which he did.

To control my claustrophobia it was important for me to be able communicate with the operator. That is very difficult as the operator is in another room, separated by a thick door, and as the communication between operator and patient is only one-way (the patient can hear operator instructions, but not the other way around). My wife was therefore allowed to hold my feet and she could relay my ‘answers’ with gestures to the operator through a window in the room. It means a lot to have someone with you that you can trust. We agreed signals for ‘no’ and ‘yes’. Last but not least I was given a small balloon to request an immediate stop of the test.

It was just as Andrea wrote in her blog (Newly Diagnosed MS) with the big difference of course that I was told to keep my eyes open to be able to read the instructions on a projection screen placed at the end of the MRI tunnel. The moment the helmet closed over my head (a helmet with small holes for your eyes to see through into a mirror under an angle of 45 degrees) claustrophobia immediately kicked in. I asked for the helmet to be removed for a minuted and conditioned myself using the Systematic Desensitization. That went rather well, perhaps also as my Reiki coach sent me a truck load of confidence and courage while I was on my way to the hospital.

I had to perform three tests. Test #1 was to ‘think’ words starting with the letter projected on a screen outside the MRI tunnel. After a few letters (4-5) a little star appeared, the sign that I was not allowed to think about words but instead of a walk on the beach. Then a similar sequence started and this was repeated for about 10-15 minutes. Test #2 was to repeatedly bend and straighten the fingers of my right hand while I was seeing the word ‘Action’ projected on the screen and to stop doing so when the word ‘Rest’ appeared. This sequence was to be performed for about 6 minutes for each hand. Test #3 was similar to test #2 but now for both feet (bending and stretching my toes).

The entire fMRI check took just less than an hour and was made possible by a very understanding operator, my loving wife, the support of my Reiki coach and a lot of confident friends. It helps a lot though to understand the processes in your head and to understand that you’re (or can be) in control. This at least worked in my case. Thanks everybody so much to help me get through (literally!).

MEG: The real thing

Today I was scheduled for the “real MEG”. The check comprised a functional MEG followed by an MRI scan to enhance the MEG result by superimposing the images of the MEG and MRI. As the MEG and MRI are performed by different departments was it necessary to attach 3D reference points to my head.

For that purpose the operator attached three coils to my face (above nose and ears)  to allow the MEG equipment to locate the position of my head in the helmet. After completion of the MEG these coils were replaced by three black dots made with a black marker. Just before the MRI took place the MEG operator stuck little capsules with fish oil (!) on each of the black dots. These were to be picked up by the MRI. The hospital in which I get my treatment is the only hospital in the Netherlands where patients are being checked with this type of MEG procedure.

If you happen to suffer from claustrophobia then you know that afriendly and professional MEG or MRI operator can make just the difference your need to get through a MEG or MRI. My experience during the trial MEG was not very positive (Meg Trial Registration) and I was therefore concerned about my ability to control myself during the real MEG today.

In the last session with the psychologist did we take the action to restore the level of confidence and trust in that operator as much as we could. That was not necessary though as the MEG was performed by a different operator from last time: this one was friendly and professional! The “real” MEG of this morning went very well just because of that. Of course, a MEG check will never be something I do for fun. I only time I got really scared was when I was asked to place my head into the MEG helmet. The operator gave me all the time I needed to get used to the idea and within a couple of minutes, while thinking of Systematic Desensitization, was I ready for the MEG process.

The tasks to be performed were not complex: about 15 minutes of relaxation with eyes closed, 10 minutes/hand of hand movement and 10 minutes/foot of foot movement. Finally some muscles in my hands and feet were stimulated with small electric little shocks (about 5 minutes per hand and foot). The entire check lasted just under 2.5 hours. Quite some time if you have a cold and need to pee.

With three fish oil capsules stuck to my face I went to the MRI department in another building. I was positively surprised again, the latest model MRI from Siemens was waiting for me (the Siemens Avanto). Much shorter and much faster than the Siemens Sonata, which is used for the fMRI in this hospital and again much shorter and faster than the older types of MRI. Great!

The fish oil capsules prevented the usage of a headphone so some foam was placed inside the “helmet”. When I complained about it being too tight to avoid full blown panic the friendly operator (a different one) replaced them with less thick pads. I kept my eyes closed while being moved into the machine and 10 minutes later was moved out again. Amazing. Cheers to all the friendly operators of the MEG and MRI today!

Warm rain

It has been raining most of the week and today I didn’t leave the house. Tomorrow I have the MEG and MRI and they occupy my thoughts. I keep telling myself that it will be fine, I know I will be fine, but still .. I got up late this morning, stiff from the rheumatism in my legs, back and hands and muscles in my back sore from the flu. I feel like an old man but because of my age do I not qualify yet. Breakfast (toast with apricot jam and a cappuccino) helped me to get back on track and I worked the remainder of the morning and most of the afternoon.

Today’s task was to create up-to-date organisation charts with all staff and management of my region in them. It is the same old story, managers don’t talk with each other and provide me (eventually) with crap data. Why don’t they check their output and why don’t they check with eachother on standardization issues. I’ve been working on this task for days now and the result is poor. I’m disappointing my manager and that feels bad. I have given one manager an ultimatum, sort your stuff buddy or else ..

My wife is not feeling well. She had some pork a friend in Taiwan made for her and she probably ate too much of it. It made me realize how fragile we are. We depend on each other completely. I’ve stopped making sense I think? I got an e-mail from a good friend yesterday and I decided to send an answer today. She is one of the few people asking how Monling is doing. I find that very considerate. I believe I said it before, I think that Monling has a even tougher time than me.

It has been raining most of today. It is winter out here and it should be freezing cold but it is not. Monling said that this weather is almost like winter in Taiwan. The only difference is that we have a heating, on Taiwan they normally don’t. Must be cold out there now. In Taipei there is a hotel with a beautiful spring bath (onsen) and in this bath they have a “tropical rain forest”: a very large shower (1m x 2m) with a perforated ceiling from which hot water is pouring down like warm rain. It is a wonderful experience .. there is so much water coming down that it is difficult to breath!

Yesterdays session with the psychologist resulted in a few actions on me: talk to the MEG operator, ask for more information on the MEG procedure, try to have the MRI in Sonata (short MRI) and talk with Monling to agree on signals for communication. I didn’t do any of them. Was I too lazy or too busy? No, I don’t think so. Am I pushing the limits of my fear for being buried alive? Yes, perhaps. Well, we’ll see how the MEG and MRI will go tomorrow. I’ll keep you posted.

Systematic Desensitization

Today we met with the Neuro-Psychologist for the second time. The first time she promised to have a word with the operator of the fMRI system that we met during the fMRI trial run and this time she gave us some feedback of that chat. She wanted to focus however on the MEG and MRI that are planned for Wednesday. I explained my fear for the MEG in detail and the lack of trust and confidence in the MEG operator. Talking and thinking about the MEG is not as hard as talking and thinking about the fMRI. I’m quite certain that I will have feelings of discomfort and fear during the MEG and MRI but I’m also rather sure that I will be able to endure these.

I believe that the Neuro-Psychologist was trying to perform a concise version of a procedure called “Systematic Desensitization” where a patient is asked to recall events that cause anxiety in imagination, and then a relaxation technique is used to dissipate the anxiety. With sufficient repetition through practice, the imagined event loses its anxiety-provoking power. At the end of training, when you actually face the real event, you will find that it too, just like the imagined event, has lost its power to make you anxious.

I think that I have used a crude version of this technique myself before and during the trial fMRI and I have decided that it makes sense to try it again. According to http://www.guidetopsychology.com/sysden.htm  this process can also be self administered. It just takes confidence, honesty and time I guess.  I don’t have much time until the formal fMRI on the 1st of February and I don’t want to postpone the fMRI as the Neuro-Psychologist suggested. It is good to know that I have that option but no thanks. I super motivated to do whatever it takes to get the tumor out of my head although this fMRI may prove to be too much. Is my desire to live strong enough to assemble all power to control my claustrophobia? I think that this is the key issue. An operator that I can trust, my wife sitting next to me and methods and procedures are important but not key.