I need some advice. DJ went for his semi-annual MRI this week. After the MRI, we went and met with the neurosurgeon to give us the news. The good news is that nothing has changed. That is also the bad news. The Chiari malformation is still there, but it hasn't grown. The syrinx is still there, but it hasn't grown. The other thing they noticed this time, that I didn't realize, is that his topmost vertebrae is too small. It is still in the normal range, but at the very bottom of the normal range. Because DJ is not showing any outside symptoms (snoring, headaches, numbness of fingers, etc.), the doctor doesn't think we need the surgery right now but the decision is up to us. The surgery would entail a widening of the topmost vertebrae and a shortening of the cerebellum (the part that is growing towards the spinal column). In neurosurgeon world, it is one of the least invasive and most common surgeries. The doctor told us if DJ shows any of the outside signs, we need to get him in right away. Now the part I need help with is whether to choose to do the surgery now or wait for an emergency. There are pro's and con's to both of these. One pro for now is that I get to choose the time rather than waiting for a symptom which might come during a bad time. One pro for waiting is that the surgery might not be for years.
I would love any advice, comments, or any help you can give because I am at a loss for what to do. Thanks
5 years ago
5 comments:
Wow, Trenna, that's a tough one. I am on the conservative side of the fence in most cases, but I don't know about yours. We are praying for you guys and hope whatever you decide will be okay.
Hey Trenna I think it would be better sooner than later. It would be extremly hard to have a new baby and be dealing with DJ in the hospital. That is just what I think. Josh and I will support you guy no matter what.
I don't really have any sound advice just wanted to say we are thinking about you and I am sorry you have to make these hard choices.
Wow. This is a tough one. I guess I would give it a lot of prayer and fasting. I have 2 feelings on this- on the one hand, it would DEFINITELY be easier to not have a 2nd baby to take care of on top of having DJ in the hospital (speaking from experience here). However, there are tons of people (myself included!!) who would be there in a heartbeat to help out if you needed a babysitter, even overnight. By the way, CONGRATULATIONS!! I didn't even know that you were pregnant, that is terrific!!
Ok, so on the other hand, if DJ is not showing any symptoms, and if the malformation has not grown, there is a good chance that it could be years down the road before he has a problem.
So that is my 2 bits worth. We can't wait to see you guys up here in a couple of weeks!
I know I am late on this converstaion, but I like to think I know something every now and then.
My personal opinion is to wait. As children age, their bones tend to grow (duh!) and the ratios of sizes between the bones tends to change. This can lead to either compensation or decompensation of the malformation. In the prior case, DJ may never need surgery, although it would probably be necessary at some point. In the later case, you can deal with the emergent problem right away, although you do not get to do the scheduling. I tend to think bodies are amazing things that will sort themselves out if given the opportunity.
That being said, I would talk to the surgeon about whether a second surgery would be required down the line if the growth rate changes following the initial surgery. This can happen occasionally in some children with certain problems. I do not know if this malformation is one of these. If this is a one-time surgery, I would lean more towards the scheduled approach and try to fit it in where you can.
Good luck.
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