Jack would have been happy just racing up and down the hallways, but he did great watching Mickey Mouse Clubhouse on the IPhone (his FAVORITE show).
Aunt Ing came with us to the appointment, we decided it would be a good to have more ears listening. What we found out was comforting in a way. Dr. Souweidane said that in a young child like Jack that is also presenting with developmental delays, he would choose to operate on the cyst. He would perform a endoscopic fenestration (fancy word for hole). Basically he would make about a 1-2 inch incision on the side of Jacks head and then poke small holes thru the skull and into the cyst. This would drain the cyst, releasing the fluid back into his body. The surgery would last 1-2 hours and he would spend 1 night in the hospital. Arachnoid cysts are filled with Cerebral spinal fluid, so draining it back into your body is ok since this is what is naturally found in your body already. Dr. Souweidane is one of only a few Neurosurgeons who performs minimally invasive (endoscopic) procedures in the skull.
The Dr. says that if Jack were older and without delays then he would not operate. They typically choose to leave these cysts alone if they are not causing any trouble. He also can't say whether Jack's cyst is causing any of his delays. It seems they will make no promise that operating on it will make any difference with his PDD diagnosis. However, the Dr. has seen a number of patients with arachnoid cysts who also had ADHD, Autism or other global delays. In other words, the procedure is sort of optional. It is all kind of confusing and trying to write it is rather difficult. What we got out of it was, they won't say it will help, but other patients who have had the same procedure and also had delays, did notice a difference, but the Dr. won't say whether it was the removal or fenestration of the cyst that did it. Given his age and the size of his cyst, it is recommended to have the procedure. We are going to see Dr. Jeffery Wisoff on the 31st for a second opinion. If he has the same answer then we will most definitely opt for him having the surgery.
The risks are obvious normal risks of surgery, but a bit more given the location of the cyst. Children with these cysts do have a higher risk of hemorrhaging but "knock on wood" this has never happened. After the surgery they will do a MRI and then a follow up MRI a few months later. After that they will do yearly MRI's for 5-10 years. Dr. Souweidane did say that he would not recommend Jack ever play heavy contact sports like football, Lacrosse or Soccer. He will always have a little more risk of injury if hit in the head, although it is only about a 10% risk. Not too bad, running or swimming sound just perfect for him!!!!
Incase anyone is wondering why we might choose to do the operation when it is not 100% necessary, well we feel that we will always be aware of the cyst. We will always worry and wonder if having the surgery would have helped him and his development. Jack fell and hit his head yesterday (very minor) and I just about had a heart attack!!! This is no way for any of us to live. So, as long as Dr. Wisoff has the same or a similar opinion, we will be moving forward with the operation.
I hope this isn't too confusing, I'm confused writing it!!! I will keep you posted on Jacks progress as it happens. He will start his ABA therapy on Monday, and we are very excited to get that all going.
Caitlin has been home sick for 2 days with a double ear infection, but seems to have made an amazing recovery. Liam, is Liam, and enjoying going to two schools and making new friends every day.
"Nobody trips over mountains. It is the small pebble that causes you to stumble. Pass all the pebbles in your path and you will find you have crossed the mountain." ~Unknown
Very well done. I was there and I could never have explained it that well! You are both phenomonal parents. Glad I could be there to listen today. I left the appointment feeling hopeful, and confident that Jack is going to be just fine :)
ReplyDeleteHi,
ReplyDeleteYou know me from school. I sent Ingrid a messege. My son has Mild Autism it started off as Moderate development delays and he started services at one year.
At two he was diagnoised and started Aba. He is now 2 1/2. ABA is working wounderfully. Four sessions a day at home five days a week.
They where originally thinking PDD. My son has a big head as well and we have him linked to a neurologist. I have a blog too but havent went on in along time.