Samantha had been scheduled for another DBS surgery because she was not getting much of any results until about a month ago. Now she is starting to loosen up and get some of the benefits we were hoping for. Tyler on the other hand was becoming more uncomfortable with the left side of his body and the leads that he had in to affect the left sidewere not doing much for him. The doctors have been doing a lot of research and finding good results with a new target area within the brain called the STN that has been effective in giving some benefits to people that were not getting benefits from leads placed in the GPI part of the brain. Tyler decided to take Samanthas date for the surgery so they could put a new lead into the STN and hopefully give him some benefits on the left side of his body.

Tyler is much smarter than us and he really wanted to do this surgery. I was fearful of "going to the well" too many times. I tried to talk his surgeon and Tyler out of doing it but they were very positive about the hope of good results. As one doctor put it, "I have been wanting that Ah-ha moment with Tyler and we hope this can be it". My concern was that Tyler is fearless and the potential rewards would make him discount the risks. He won.

Today he is waking up on the couch at the house and starting his recovery. The doctors know they are in the right area to have a good effect and now we are waiting on recovery as well as benefits. He seems to have a little benefit already but the surgery can play tricks on you with what they call a honeymoon period after surgery. The swelling in the brain after suregery can cause symptoms that don't last. Tyler is able to pronunciate his words a little better and his jaw is doing just the opposite from before the surgery when it would stay open(now it is pushing closed) This is a good sign because we know it is effecting him somehow. His left leg and hand seem a little looser but we will see over the weeks and months to come how effective it will be.

I apologize for the detail but many people have asked for some of this information. Tyler had another decision to make before the surgery. There were currently three leads in Tyler"s head with three wires to two battery packs in his chest. Yes in case it sounds like crazy stuff it is and we are talking about our son. The new lead would need a power source to operate it. The controlers in his chest have the ability to run the new lead but there was no wire yet to connect them together. The other isue would be that when you hook up two leads to the same controller they would both need to be run on the same frequencies. This limitation could only be corrected by running anothercontroller down to his abdomen and tunnel a new wire from the lead. More surgery, more pain, and more stuff in a very skinny boy. Tyler has a feeding tube in one side of his abdomen so there is only one other place to put the controller. The other solution is to disconnect one of the lead wires from an existing lead that has the least benefit and connect it to the new lead. The problem with that solution is losing the benefits of the lead that would be disconnected. Tyler decided to disconnect the lead that was helping his left alittle and hope the new leads benefits will far outweigh the old lead. They left the old lead in place in case they wanted to go back in with another surgery and connect it.

The surgery went well despite his family being a little worried. Samantha and Luke really worry about him and it is hard on them. Tyler is a Godsend when dealing with them and us because he acts like it is nothing. Warrior/my Hero. Keep the thoughts and prayers coming for good benefits. There are many other stories I could tell but I will wait for future blogs since this one is so long. The secret Pal was awesome again and keeps them energized with the love the Pal shows in cards, gifts, and encouragement. We met a couple wih a fascinating dystonia story from Clearwater Florida and instantly became friends. Saint Michelle is actually bulletproof and needs no sleeep evidently. Oh yeah, Luke. What can I say. Luke is still as crazy as he was the last few years just doing more. He has been in tennis and swim camp but finding time to read and make posters for Tyler.