I just want to say that, after everything I've learned here, I now think of surgery as an absolutely last resort. There are so many other things to try that don't involve the risk and recovery of a surgery: the ketogenic or Atkins diet and neurotherapy are definitely the ones that I'll try before I let anyone cut into my beautiful daughter's body.
If you look at the other thread in this category, there are some statistics about how well the VNS works in children. Not so well.
Jenni
A note from a mom who's daughter had surgery
Hi Jenny,
I agree with you that surgery should be a last resort. I did get an email yesterday from a mom who felt the same way but did get the surgery and thought it would be good for others to hear what she had to say: (I have permission to print this)
Hey thank you! I applaud you for all of your efforts and I make it a point to let people know about you. Did you see my comments in Morgan's Blog? Anyway I am one of those mothers.....just like you and I research everything. I feel really defeated in a way that we had to do surgery....unfortuneatly Morgan had an area in her brain that was continuously spiking and seizing. It was a very specific area and ALL of the brain tissue around it was dead. Getting that area removed was the best thing we ever did, because now her brain has a chance to rewire itself and utiilize capabilities from the other side as well as not being plagued with constant seizure in that area.
I am a 99% anti surgery type person and an avid researcher. So this was quite a big step for all of us. I have come to realize that a huge part of it too is your own intuition about your child. Morgan fell into that 1% and thank God we did this surgery, we have our child back now.
Morgan is doing very well. We had tried nearly everything else......(Neuortherapy included) but also Cranial Sacral therapy, Chiropractic, Homeopathic, Osteopthic, Keto diet, basically short of a faith healer we tried EVERYTHING! (and I tried that too but don't admit it too often). To make matters more complicated several leading physicians were in disagreement with what was actually there or not and what to do about it.
So now we have gone a route that I never wanted to take and waited five ears to do it....I wish we had done it sooner, but to me it is a last resort, not a quick fix. Anyway thank you for your support, you have been on this journey a long time and you did such a great job!
Love, Karen Perry
Morgan
Hi Arlene --
You know, I read Karen's blog about Morgan about two weeks ago -- and I was really touched by her improvement after surgery.
But it went in my eyes and out my ears because of everything I've learned about non-surgical treatments for epilepsy. I just became WAY anti-surgery -- and I really hope I haven't offended any parents who are considering surgery.
My opinion is just my opinion. THANK YOU for reminding me--and all of us--that there's no one answer for any child. We all have to find our own paths, and, as Karen says above, trust our intuition.
Jenni