When we were visiting up north last fall, we went with Sam and April to the Ronald McDonald House where they had stayed during Kaylie's heart surgery. While there, we met a girl and her mom whom Sam/April knew. They'd been at the RMH together a year earlier....but in their case, Katherine (the daughter) was still in treatment, etc. for Chiari Malformation. (This is a condition where the brain is squeezed out of the skull, and is constantly painful due to the pressure.) They've been trying to find lasting good results since 2005.....but there isn't a whole lot of research being done on the condition, and therefore very often the parents of children such as this know as much as the drs! I read Qat's mom's updates each time she posts on Carepages, and always have 3 reactions: how does a mom endure the frustration of seeing her child go through this, how does a 15/16-yr old girl deal with this constant pain and inability to live a normal kid's life, and how VERY grateful I am that every one of my children is healthy! Please pray for Katherine (Qat) and her mom. Here's today's Carepages update. If you want to read more, go to CarePages, sign in, and her page is named Qat. A few weeks ago, she AND her mom both posted about how sometimes people with chronic pain have suicidal tendencies simply because they just have no desire to continue living with such a low-quality of life with no hope in sight! Yet, in many cases (as in hers) they hold on for the sake of those they love. I guess I can see that. If you've ever had high levels of pain for a very long period of time, you might understand a little of this. Read her post(s), and then please pray for them when the Lord brings her to mind.
Rant of the day
I'm usually fairly careful in what I post on here to not reveal too much personal information and to not offend anyone or say anything negative about anyone. (except for those of you who are good at reading between the lines) Not today.
I was thinking today while reading someone else's update about the events of the last 3 weeks. So far in 2009, Katherine has
-had an LP shunt malfunction
-had a VP shunt placed
-had an LP shunt ligated
-had her ventricles collapse
-had a VP shunt malfunction
-had her pressure go well above 40 (and remain there for about 10 days while convincing someone that there was a problem)
-had her LP shunt reconnected and tugged enough to create a leak and cause very low pressure
-been diagnosed with increasing scoliosis (due to LP shunt)
-had increasing (extremely severe, but fortunately usually limited in duration) leg and groin pain caused by the spinal catheter hitting nerves
-a lesion on her liver caused by the tubing of one of the shunts (I've lost track of which one is hitting the liver)
-and she currently appears to have a CSF leak in the lumbar area either from the lumbar puncture being done in scar tissue that won't seal or from the LP shunt itself, but we have to provide photographic evidence before it will be investigated or even considered. You would think after not listening to us 5 times in the last 3 weeks, and having what we were questioning/asserting proven right all 5 times, that it wouldn't be so hard to get him to investigate a recurring (ie, this has happened several times before so we think we recognize it when we see it again) symptom. I'm not asking for instant treatment based solely on what we report, that would be medically irresponsible. I'm just asking for him to consider it and investigate it without blowing it off instead of making Katherine suffer for weeks or months more!
I think that basically covers it. It is ridiculous that the brightest minds in the world cannot come up with 1) a safe, reliable, non-invasive method of measuring intracranial pressure and 2) a system, shunt or otherwise, of adequately treating pseudotumor without REGULAR AND FREQUENT complications and failures every few weeks. How hard can it be? My car (ok, the car I'm borrowing) indicates on the panel what the tire pressure is and flashes a warning when the tire pressure is too low or too high. And that is a car!!!
Did you know that a non-invasive method for monitoring pressure was developed several years ago? It went through trials, passed, and the rights were sold to a medical company who then declined to put it into production because they didn't feel it would be profitable enough or not enough people would use it. Not enough?!? I can think of about 200 off-hand, and that is just in Chicago!!
What about shunts or some other type of pseudotumor treatment? What will it take to get that together? Hydrocephalus patients don't have a failure rate this high. Garden variety (non chiari-related) pseudotumor patients don't have this rate of problems. What is it about chiari-related pseudotumor that makes it different, and why doesn't some researcher already know? Oh, wait, it is because NO ONE IS STUDYING IT!
There are times when I almost can't stand to read the Carepages and Caringbridge site of all of the kids and adults that I follow who have chiari and related conditions, because sometimes it seems that everyone is doing horribly all at the same time, and there are no answers for anyone. It sometimes hurts too much to see so many of the people I care about hurting so dreadfully, and be so discouraged. I hear and read the same things over and over and over and over. When will something change? What has to happen to cause that change?
Wow. Prayers for the family. I can not even begin to fathom what she is going through. Ugh. I could hardly read it all through the tears. So sad. She has a right to be angry.
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