His take on all of this? "It's a gray area". (Which, I have to say - it is quite an interesting way to word it since we are talking about gray matter). And although we were hoping that he would just say "All is well" and that the tests were a fluke, this is the next best thing. It means we aren't going to have to do any major surgery for the time being. But we will have to monitor things - because we just don't know.
Basically, Luke's hydrocephalus isn't common. Dr. Cherny only sees about 1-2 cases a year. The Dr. explained to us that he usually sees two group of kids that come in with big heads. The first big head group have no symptoms, other than the size of their noggins. When further tests are ran, it proves that there is nothing wrong. The ventricles are not dilated. Basically - they just have big heads.
The second big head group that he sees have other symptoms like decompensation of gross motor-skills, lethargy, sunsetting eyes - stuff that makes it obvious that there something is wrong. Upon testing, the results reveal enlarged ventricles (hydrocephalus). This group requires action to be taken. Surgery.
Luke obviously doesn't fit any of those groups. He behaves like a normal 9 month old baby. The only symptom he has is the size of his head. However, with his tests, we know he does in fact have enlarged ventricles. Now if all 4 of his ventricles were enlarged, then the Dr. wouldn't be too concerned. There are rare cases where the size of the ventricles may be large in comparison to the 'norm', but function just fine. The thing that is concerning is that the 4th ventricle is a normal size. So there is a good chance that Luke does in fact have aqueductal stenosis. It just might be very slow-moving.
Translation? Only time will tell. We talked to the Dr. for about an hour. He was very good at answering any questions, and we came up with a good plan. Luke will need to be seen by an opthamologist. His eyes will need to be dilated so the Dr. can see the nerves behind the eyes. It is common for those nerves to be inflamed when there is increased intracranial pressure (which is what we are worried about). If they are inflamed, then we know this is true hydrocephalus (vs. benign hydrocephalus) and we will have to do something about it. If they are not inflamed, then we just sit and wait. We will have to get another MRI (this time a sedation one) as well as see a developmental specialist to see where Luke is at in February.
So we wait. And then see how things go from there...
And we are okay with that.
4 comments:
Well, that is good to hear! We've been thinking of you. It also sounds like you have a good doctor to work with.
Sweet little Luke! Can you believe that Blake STILL talks about him?! He definitely made an impression on all of us. I wish there was something we could do but alas...I know you're feeling the same (just 100 times worse!). We'll definitely keep your little man in our prayers.
Wow Sheri. Your thing hasn't "updated" on my blog list so I'm just reading this. I pray that you and your family can have some peace of mind during this "wait & see". I have felt the power of prayer & comfort and know that is the only way to get through these difficult situations.
Wow Sheri! I just read all of this about Luke. Hope he is doing okay and they get you guys some answers! Your family is in my prayers.
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