I packed each child a kit that looked like this:
I also bought a 3 drawer organizer for the van at Target. I find it easier to see in a drawer than dig through bags all the time. I recommend adding a little Velcro to the drawers to keep them closed when you stop. It works well.
Finally this is what we looked like ready right after we got gas and were on the highway headed to our destination.
Kids started with a movie Dad Driving Mom- (don't you hate taking your own pic?)
Well, anyways we stopped for dinner about 2 hours after driving and ate.
Of course when you are driving you see all kinds of people, buildings, police and sometimes even a big fire!
After a bit we watched the sunset and both kids were fast asleep for the last hr to our midway Dallas.
We stayed the night and got up, grabbed breakfast and left early for the next 4hr drive on to Austin. We stopped at 2hrs into the drive for lunch and arrived at the hotel about 2:30pm. Fortunately we had a comfortable room ready and it looked great!~
Finally the morning came on October 11, 2013
So, we didn't wait long at all before we went back.
We got there on time at 9:15am for our 9:30am appt. They came out to tell us right away that Dr. George had to go to a trama of a baby with pieces of skull in their brain and it would be 30 mins. (I was thinking 30 mins? That seems fast!). We started with the nurse and then the PA comes in and does history and does all the neuro tests. It was funny because apparently my 2 Chiari kids cannot "walk a tight rope". And my CM SM can't balance on right side well. Apparently that is common with CM people???
Well she no more than left and Dr. George appeared. So, I suppose you could say they definitely kept us company. Dr. George was great with the kids. He definitely does not want parents to "help" their kids answer a question. I made that mistake and he said "mom it's not a quiz you don't need to give her the answers"! I can't remember what the question was, but he definitely wanted to talk directly to the kids. He ran "racing" them down the hallway (my CM SM kid gallops when she runs. Always have and it looks like a skipping type of run). He then had us follow him to a different part of the office to view the MRI scans. He was very detailed in explaining to us that our 6yr old just looks like a CM and he couldn't see anything else on those scans (but I'm so irritated because we burned the MRI's and checked the images before sending and they were all there and somehow either the mail or their office staff messed up the scans so there were only 6 to 7 pics total for both of them!). I had the scans I have been posting on FB for ya'll to see on my phone and he said "text those to me". So I did. Well he said with the 6yr old he would go through the muscles and tendons in the neck NOT cut them away at all to work and remove some of her skull and cut into the outer dura only. He said a lot of surgeons make the mistake with kids of cuting the muscles and ligaments in the neck like they do on adults and trying to reattach them at the end and in kids that doesn't work. He explained the complications associated with the dura removal. Then he said the opposite for 4yr old CM SM. He said that he would go through the muscles etc. and that he would be opening her inner dura looking for blockages or tissue he may need to remove to see if that is causing the syrinxs. He showed us pics of a different patient before and after surgery that had a syrinx similar to our 4yr olds (not as big and hadn't stretched her cord as far and she was 13) but the shape was similar. It looked so much better but it was years later. He said maybe it would reduce in size about 50% but probably always be there . I asked about shunting her and he said no he does not want to do that but can't say he never would because sometimes circumstances require it but that it was usually from multiple failed surgeries with scar tissue that requires shunting. He said 3-5 days in the hospital and the surgeries would take 1.5 hrs. He said he only operates on 20-30% of the CM cases he gets. We talked about my 6yr old CM that is doing so well with modifications but he says that is "still" treating your child. He said that if you wait too long you can miss a window of opportunity to help prevent future symptoms. Like the modifications work right now. At some point they are not going to work anymore and when that day comes the pain she will feel will be unbearable.
He said many times that he wasn't going into detail about all the things they look for in the surgery (I think he didn't want to overwhelm us). He didn't recommend doing both kids at the same time but was willing to do it. He said he feels each child deserves their own attention and it is hard to give each one that at the same time (recovery as a parent). We asked him about anterior issues causing the CM but he skirted around the response saying that relates to the CM 1.5 or 1.0 etc. but ultimately they all require the same attention of needing more room. So I believe that he feels that decompression is the treatment for all CM cases, however it could be that he didn't understand exactly what we were asking. I tried to clarify the question later during the discussion but he still went back to the decompression resolves the issues.
They wanted better scans and then wanted to schedule their surgeries. I left telling them I wasn't quite ready to schedule the surgeries and that I would get them better scans.
Dr. George seems very very skilled. He has very steady hands and was able to multi-task. When asked which child was more urgent for surgery (CM SM or CM for age) he said 4yr old was more compelling. OH that reminds me, when I mentioned Dr. Mapstone saying that they could outgrow the CM he looked at us with a funny disbelief look and said "no because at 6 their head is 95% adult size already. The brain is done growing and the skull too and the skull thickens on the outside not the inside and face as well with fat. At 4yr old about 80-85% done growing but that since 4yr old is 100% blocked surgery isn't an option with her. It is a must.
I thought ya'll might like to know about our visit. I wanted to post it all asap so I didn't forget anything. We are still going for the TCI consult, but Dr. George is wayyyyyyyyyy better than the OK NS we saw.
When we left we drove the whole way home without stopping. We hoped they would fall asleep but stayed away the whole time until the last 70 miles lol. They were good and I thank God for many things, but last night especially the TV in the car and
STARBUCKS! :)
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