Lumbar Punctured Dreams

I have frequently been told that MS will have its good and not so good days. My experience undergoing a lumbar puncture process fell into the latter.  A lumbar puncture or a more common alias “spinal tap” helps to complete a diagnosis of multiple sclerosis or demyelination.  

The procedure entails inserting a needle into the spine, through the bones and puncturing into the spinal cord in order to drain some of the fluid. 

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My lumbar puncture was scheduled to start at 17:00, I was taken into my room for 16:50 where I was left to change into a paper gown and wait for my doctor to arrive. The needle and other paraphernalia was left beside the door ready for action. I kept telling myself that within an hour everything would be done and I would be able to get back to the nicer environment of my home and family. However it wasn’t to be that simple, I had to wait in solitude until my doctor finally appeared at 18:45.

He greeted me with the news that new lesions had appeared on my latest MRI scan, which was not good as it implied that my MS was active. I had read that when MS is active steroids could be used in order to calm the body down and reduce the inflammation. I had hoped that these steroids would be an option for me in helping my vision problems which tended to manifest themselves when my body temperature increased and had been causing me problems whilst playing football. It was when I was curled up in a ball on the bed that we were discussing this and the news was delivered to me that the steroids would not help my vision and that it would never improve again. The read across was that competitive football/ squash and any physical sports was now over. To me this was something that no amount of local anaesthetic could numb. Sport has been a large part of my life, it has been a means of stress relief of achieving satisfaction, a way of escapism. Football in particular holds a place with me where the troubles and stresses evaporate when you strike a ball into the back of the net or play the incisive ball for a team mate to score, when you push your body to make that last ditch tackle just before your opponent pulls the trigger…. and now no more. 

The doctor proceeded with the lumbar puncture, despite the body being numb I could feel the pricks every so often and sporadically I could feel him hitting the bone. At one point the nerves in my leg were set off and pins and needles went through my left leg like having a funny bone hit. Despite words of encouragement the procedure had to be aborted after three unsuccessful attempts… I could not believe it – all of that pain an palaver for nothing.  I was told that it would be carried out again with the help of a guided X-ray machine …. why this isn’t the standard procedure I have no idea!

Lumbar Puncture Part Deux

I arrived for my second lumbar puncture at 8:30am the following week, it was scheduled to take place at 9am.  The warden who escorted me to my room attempted to make small talk asked me what I was in for, when I told him he said “Oh sorry I feel for you!” –  Great! After waiting two hours in the room I was told the consultant was no longer able to perform the procedure and that they would need to try and find someone else. In the meantime I was ambushed with some blood tests – I am not the best with needles. I hoped someone else would be found to step in as I didn’t want to have to take another “long weekend” out of the office. Another person was found  – a good one I was told. I recommend anyone going for a similar procedure to also ask for someone “good”.  The new procedure time would be 13:30 and I would be under sedation. The “good” consultant came to see me at 13:33 and explained how the procedure would work.  

I was then taken down to the operating room. I was not expecting the operating theatre to be so big and busy. There were about 8 people in the room, nurses and assistant radiographers. They put a cannula in my arm – in case I needed the sedation, I expected I would be ok just with local anesthetic given I had had practice the previous week. I found the whole experience pretty intense. There was a big screen with my X-rayed back in front of me I kept my eyes closed for most of it and just kept counting to 10. Each injection induced a sharp pain but the numbing was more effective then previously as I did not feel the actual bigger insertion. After 10-15 mins the consultant hit the right spot and drained a few samples from my back.

After the procedure I reminded one of the nurses to take some more blood samples – given there was already a cannula in my arm. There was some confusion as they took one sample but i was convinced the nurse who was with me earlier, had asked for more. Suffice to say when I was back in the recovery room thinking the whole episode was over another nurse came into the room for more blood!! 
 
For me the pain of the lumbar punctures faded over time, however, the inability to compete at sports remains and is what still hurts. My dream is that through the OMS lifestyle I will be able to prove my doctors wrong and overcome MS.  I always try to take the positives from situations and looking back, my experience at the hospital finally ended on a high:

  • My cholesterol levels were reported to be down to 4.3 from 6.4 three months prior.

  • Similarly my Vitamin D blood test, revealed levels of 243 vs 67 prior.

  • Most importantly, my wife was there in my hospital room waiting to greet me with a cup of coffee – dairy free 😉
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4 comments

  1. It all sounds very upsetting. And poorly managed.
    More power to you for being assertive and strong, My experience of lumbar puncture was similarly poorly managed. They did manage to get a sample first time (lucky for me) but the room was a side room on a ward, not very clean, with a broken bed (that I had to climb up on). I decided to go ahead as I was desperate for results and I had a friend watching every move the doc made (very junior doc…). I did relay my experience to the Head of Neuro later on… Its a process that need not be made more unpleasant by being clumsily managed. There was no thought for the patients experience and I was left anxious for days that I would get an infection. I am hopeful there are many reading thia who had more positive experiences of lumbar puncture. There must be, right?
    Take care. Be well. Keep writing.

    1. Dear Rachael, thank you for taking the time to comment. It seems like your experience was equally torrent. Something I underestimated was the delayed headaches which kick in after. I was expecting some discomfort but I have never had such intense ones which basically floored me for a couple of days.

      As you mention I am sure our experiences are the exception given the quantity of lumbar punctures which are successfully carried out but it’s the basics which could be handled better such as time keeping and in your case cleanliness.

      It’s difficult enough having to go through the tests knowing that the outcome is likely to be undesirable, but it doesn’t need to be made worse unnecessarily!

      I wish you a healthy and fulfilling future.

  2. There is a possibility I have MS and I am terrified, I’m going to the doctors later this afternoon to discuss a lumbar puncture and I feel so in the dark about it all. When did you first notice something was wrong and how quickly did these symptoms worsen? Thanks for the inspiring blog!

    1. Katebinns, first of all sorry for the tardiness of this response. I hope by now you have a better understanding on what is going on in your situation.
      I can relate to your experience of dealing with uncertainty. For me I knew something wasn’t quite right when I began to suffer from vision issues which manifested themselves when I played squash and football. I would begin to lose focus on the ball and over a period of around 6 months the time until my vision starting to become impaired shortened. After several referrals through cardiologists I eventually ended up at the door of a neurologist, which soon led to my diagnosis of MS.

      I have to say my life now is better than in the early days and months after diagnosis. It is by no means a death sentence and in a strange way brings to the forefront what you value most in life. I owe most of this to the work of overcomingms.org which I would recommend to anyone who has a MS or someone close to them effected by it.

      I wish you well.

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