Not much more to report today. We went and saw another doctor and he had a bit different approach to the surgical fix. He doesn't think that the dura should be opened unless there is a rapid increase in the scoliosis curvature. He also would want to get a scan of the brain to rule out any hydrocephalus.
Both agree that the skull should be cut a bit and C1 should be removed. The real debate is over the dura being cut open. If the dura is cut than most likely it will correct the pressure that is causing the syrinx and the the scoliosis but there are risks of complications. If you don't open the dura you should also see the pressure released with lower complications from the actual surgery. What if the curve doesn't get better? What if the syrinx doesn't decrease in size? Does that require more surgery? Do we go a bit more aggressive the first time to try and keep Simon from having multiple surgeries? Do we go more conservatively by not cutting the dura open and wait a bit to see if it works? More than that--one doctor is in Philadelphia, the other in New York.
So, we have a lot to weigh, a lot to decide, and my son's future health depends on us making the best decision we can....
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Life is crazy with 3 kids but it's manageable with quilt making.
About Me
- ellen
- I am walking a fine line, trying to balance being a full time student and full time mom. I am going to school to become a midwife. Quilting is just so much a part of who I am.
6 comments:
You do have a lot to consider. Is the risk of complications so high that it isn't worth the more extensive surgery? Is the more extensive surgery a "sure cure" and would positively eliminate further surgery? Do you have a gut reaction for or against either doctor or hospital? Don't base it on distance to travel. Do you have a timeline to make a decision? Is it worth it to continue to do research, or would it just add to the confusion. Tough decisions, my dear.
There is so much....
Each doctor is selling their own method. So, both of them are competent doctors and how they'd handle it sounds great. Neither type of surgery is a "sure cure". If the dura is opened the extra space allows even more room for the CSF (Cerebrospinal fluid) to get around. The risk of complications isn't too high. I think it's like 10% depending on who's numbers your using. We aren't talking morbidity. We're talking about fluid pockets, extra time to heal, potential infection, leakage, etc.
We will do more research and get the CT scan done. I am waiting to hear back from Dr. Storm (the first doc we saw) we some follow up questions.
My gut when we left today was, "Great, we don't have to cut and we can get the same results." Dan left and said something to me along the lines of how the dura needs to be opened obviously....
Holy cow, Ellen... This stuff is so intense. I can't imagine how you are handling it - you are such a rock star!! I think if it were me, I'd opt for the less invasive surgery if there were a good chance that it would be sufficient to fix the problem. Of course, all this stuff is way over my head. It does sound like Simon is in really good hands, which must be a comfort. Hang in there, kiddo.
Wow - you are already doing the right things by getting other opinions looking at reserach and finding any and all information that you can. You are great parent, intelligent and loving. Once you have made your decision, no matter what happens, you will have made the right decision.
We love you all so much!!
Wow Ellen! I'm so sorry to read about Simon's health dilemma! I hope with the surgery he will have a great outcome and longterm health. My son had two cranial surgeries (at 10 months and 3 years) for premature fusion of two bones in his head (called craniosynostosis if you want to google) so I can totally relate to being worried about the old dura!
I'm here by way of Samantha. Big hugs to you and your boy!! From a mother who understands completely about little sick boys.
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