Jason’s MS Blog

The third lumbar puncture

April 2nd, 2009

I had my third lumbar puncture on Monday, and it again went well. In a slight complication, they gave me the valium earlier than usual, and I had to wait longer than usual before actually going in to the operating theater. The result was that the valium had essentially worn off when I began to get the lumbar puncture itself, so I was conscious of the entire procedure – not something I want to repeat. It wasn’t bad, but the doctor poked a bit in the wrong direction at one point and I felt a bit of pain shoot down my right leg for an instant. Totally normal and without any effect except that I groaned a bit! The poor doctor – her name is Dr. Hong – she is so nice and was very apologetic afterwards! She said she never wants to give her patients any pain. I think that gives some indication of the extraordinarily high level of care I am receiving here. I mean really, how often do you hear about surgeons apologizing for their errors in surgery (except in a court?…), and this wasn’t even an error. My Mom said that little pokes like the one I experienced are the norm in spinals, and, really, it is the experience of having a completely pain free spinal (like I had for my first two) that is out of the ordinary!

But my thought was really how lucky I am to be an adult going through this process. The scary part of having a lumbar puncture is the thought that someone is going to stick a needle in your spine! The actual experience is not bad at all. I am able to breathe and pray and take my mind away, but most of the patients here are children, and they are terrorized! It breaks my heart – even when I was getting the last lumbar puncture, I could hear one little girl, her name is Abby, screaming in terror because she isn’t able to understand what is happening to her. And her extreme agitation, of course, makes the procedure that much more difficult and painful in a downward spiral. They had to just forego her lumbar puncture and try to get an operating room where they could give her a general anaesthetic. And then they detected a heart murmur that hadn’t been there before, and her Mom, Jenny, was so worried, and I am not sure they could even do the general anaesthetic. And Jenny is here alone with Abby, who has, I think, (this may not be quite exact) quadraplegic, spastic cerebral palsy, is in a wheelchair full time, can’t speak, has no control over her limbs, and, Jenny said, has had up to 70 something seizures in a 24 hour period. Abby is eleven, Jenny had to give up a really good job to take care of Abby, her husband is a cop and they have two more little boys. I think they had to take out a second mortgage on their house just to afford this treatment. And I know only a fraction of their story! My God!!! I don’t think I complain about my condition too much – I have many problems, but that’s not one of them! – but if I am ever feeling hard done by, all I will have to do from now on is think of Abby and Jenny and the other heroic people who come here to remember how good I have it and how lucky I am!!

The children are heartbreaking, but the adults are even more amazing. There is a patient Russ who has Muscular Dystrophy. He is in his 50s and has had it all his life. Also ALL his (I think 3) siblings also have it! And he came here with a caretaker (also named Jason!) who is Russ’s stepdaughter’s husband! The courage, stamina, sacrifice, and just general spirit and good will of the other patients here is truly humbling and awe inspiring.

This combined with the incredible staff make this a truly blessed and healing place. I really feel so fortunate and blessed myself to have been able to come here. And what I have said about all the staff doesn’t even come close. All of them, from the cleaning ladies (one of whom brings me food every morning without me asking!) to my caretaker (the cleaning lady’s husband, who spends the nights in my room to give my parents a chance to recuperate themselves and sleep well at a hotel nearby!), to the nurses and therapists and doctors and patient service representatives (who can translate and are eager to help with ANY problem that comes up in or out of the hospital) are each and every one some of the kindest, most caring, loving, friendly people, as well as being extremely skillful and professional at their jobs. They make this place such a nurturing and healing environment that it is a pleasure to be in! It is more likea 5-star hotel than a hospital!

My next lumbar puncture, injecting my own stem cells cultured from the bone marrow they extracted two weeks ago, is tomorrow, Friday Apr. 3 at 2:00 pm China time. I am hopeful it will go better than the last one – ie that the valium will knock me out for more of it!! Also, Monday’s puncture seems to have had a better effect on me. No headache or leg pain, and on Tuesday night I didn’t get up at all to go to the bathroom. This may not seem like much, but when my usual is between 4 and 10 times a night, this is great! So I hope tomorrow’s puncture will be even morer free from side effects and full of healing. They say that one of the first signs of improvement for MS patients is increased bladder control, so I am hopeful. But I don’t want to give any false hope either. Jenny said to me that she is not even telling her friends and family the hopeful signs she is noticing in Abby which are, perhaps, a result of the stem cells. She reminded me that we are here with no expectations for any improvements, and that she did not want to get anyone’s hopes up back at home only to have them disappointed by the hopeful signs being just wishful thinking. So there are some hopeful indications for me, but I offer her advice to all – don’t expect anything. But keep hoping and praying!

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