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Hey there. We have a different situation to most in that our Son (15 yo) was born with a Type 1 Chari, and Syrnix which we have been monitoring for a few years now by annual MRI. We are (or were...) blessed to say he is Asymptomatic. He also has fused C1 and C2, that were all part some abnormalities at birth. Essentially, he is just a normal 15 yo boy with limited neck movement, and some slight asymmetry. But arent well all a bit imperfect? [Smile]
However, that was a double edged sword in that this year the Syrinx grew, and our Neurosurgeon said it was now time to look at Surgery before it became a problem. We were told that the Sryinx would shrink over time, and esssentially disappear.
The 3 of us discussed the matter for a short time, and decided surgery from a, preventative measure, would be the best option. My wife and I also went looking on the internet for answers, but it was littered with horror stories, which to some extent made as feel grateful that our son didnt have symptoms, but fearful that those symptoms may develop after surgery, or there would be “something” there from surgery that wasnt there before. Our Dr basically brushed over this point, and said there would be no problems. We were lucky to also find a video on Youtube where 3 doctors talk about this very issue in a Webinar......whether or not to operate on a Chari patient who has no symptoms. The general answer was “not necessarily, but it was case by case”......but if there was a Syrinx also present, then it was an overwhelming “yes”.
Surgery took place on the 20th June. They did a decompression and Dura patch, and cauterized the tonsils.
The DR said surgery went great. He has a 15cm scar at the back of his head, and spent just short of 2 days in ICU. Then he was moved to the ward for 4 days, where we were all amazed at his recovery. We were sent home on day 4. Without any meds for Nausea or Pain. Big mistake!
Anyway, over the weekend, it became a downhill spiral of him not being able to keep anything down, and that meant being sick with having just had the the back of your head open!!! I cannot imagine the pain of dry reaching and straining.
Fantastically, our DR is now on holidays! Go figure. To add to that, 5 Neurosurgeons on staff, and 4 of them are on holidays all at the same time. Genius! So we were left to deal with the Condescending and belittling admin staff at the private practice. And I dont mean to mince words there. I am a professional person, and cannot say that I have ever seen a culture like this of keeping a “client” away from the “boss”. Anyway, that is all another argument for another day.
So our son went back to Hospital yesterday in an ambulance because he couldn't be driven in a car due to vomiting. Just getting into the Ambulance made him throw up again. The sole remaining Neurosurgeon has been in, ordered blood test, and they have stabilised him. Drugs have him happy at the moment.
But now its like WTF have we done.
This site is also full of horro stories and some of hope and “success”, but most of those also seem to have a side note of regression or never ending problems.
Has anyone had a similar situation to ours where someone has not had symptoms beforehand, had the operation, and then had a “new reality” afterwards?
Im not sure why I am on here, not sure what I want to be told,, or hear..........its a confusing time. I am in a dark place, and if I am in a dark place, my wife is in a pitch black one......
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