The neurosurgery update

So here are the details from the appointment this week. 


First we had to go through having the MRI and getting Alvin sedated. It went a little better this time but it was still tough. The doctors and nurse in the radiology department assured us that as he gets older it does get better and sedation may not even be needed. He came out very sleepy again but luckily this time reacted much better than he has in the past and came out of the anesthesia with no nausea.


Once he was good and woken up we went upstair to meet with Dr. Lee his neurosurgeon. First asked about his progress so far. His overall motor skills have slowly and steadily improved. His speech is getting better and even though he is a walking book (repeating everything he hears, reads watches) he is at least talking. His surgeon pulled up both MRI scans and looked at them side by side. The scans showed that the hole placed in his 3rd ventricle is still open and working well. The cyst is still there and will not be treated. The thought is because it is in such a bad place that unless it changes in some way it will likely never be treated directly.The cyst itself is what is directly causing Alvin to have obstructive hydrocephalus. The scans also showed that his overall ventricle size has decreased. It may never go down to its normal size but as long as the drainage path stays open he should be fine. His next MRI will be scheduled one year out.

We were told he could go back to normal activities but to be cautious. We still will have to watch him like a hawk because of his inability to effectively communicate pain and overall discomfort.

So right now we have been cleared to let him go back to gymnastics. He is going into the 5-6 year old class (Good Friends) and after a few weeks if for any reason we get the sense that its too much or he is having issues with it I will drop him down to the 4-5 year old class (Giggle Worms). He has also been cleared to go back to school in September with no restrictions which is huge since he will be in all day kindergarten.

Things are finally getting better and while we are of course happy that things are stable for now I don't think that the anxiety level has completely gone down. The fear of what could go wrong will be with us for years to come but we know that we and the staff are doing everything that can be done to be sure he lives as normal life as possible.

Update from the neurologist

So just a quick update. We had our followup appointment with the neurology department of Seattle Children's Hospital this week. I thought it would be uneventful and turns out I was right. We met with the neurologist and went over all that had happened in the past few months. In the end Alvin hasn't had a single seizure since the initial surgery. The neurologist now believe that his seizures were caused by spikes in pressure in his ventricles that were putting pressure on the cyst. He believe that we are now done with his practice unless something else happens when we will be referred back.

So overall we are now officially done with the neurology department. Now the next step is Tuesday when we go back for Alvin to have a MRI and CT scan of his brain to be sure things are healing internally correctly and that there is no evidence of excess fluid collection in his ventricles. Once the scans are done we will immediately meet with the surgeon to go over the results and what our next steps are with him and the condition.