As many of you have read from the last post Broc will be having Chiari Decompression surgery. We have scheduled this for Aug 13. We have also found out that Broc has a syrnx (a cyst filled with spinal fluid) in his spinal cord and its putting pressure on his cord. It is located between T6-T10. So who knows what issues its causing. If we don't do the surgery this cyst will keep getting bigger and cause more complications for him.
We have since spoken to Cincinnati and gathered some more information from them.They had there final meeting about Broc on Wednesday and since his sleep study was perfect they found no reason to intervene with anything in that dept. right now. We did get the results from his ENT and he does have a Grade 1 Laryngeal cleft. They feel that that is not causing his reflux to be any worse. We didn't get the report yet on the impedance probe study but they did say that he refluxed all night and they think this is the reason for him waking up all night. That would explain why he is waking up tired in the morning and also has less energy on some days too.
They recommended for him to have a Nissen Fudoplication. This has been suggested to us for the last couple years and we have always said no. We wanted the Drs to use that as a last resort for him. It finally seems that we have come to that now.
We are waiting for Cincinnati to sign the referral papers so that Broc can have the Nissen surgery at Riley. We are really trying to get him in quickly so that he could do the Nissen on the same day as the Chiari surgery.With Broc being a cardiac patient the less anesthesia he has the better. We figured that he will already be recovering from one surgery so it will just mean a little longer recovery and he will be in pain in more than one place on his body.
It really stinks that he has to have a major surgery this year but we feel that these 2 surgeries will really be of benefit to him.He has suffered his whole life with reflux and its becoming really bothersome for him. We have tried all kinds of medications,natural remedies,diet changes etc and nothing seems to be helping him.
Thank you again for all your love and support. If anyone has any questions please feel free to email me or leave a comment. I made new pages above on the 2 new surgeries. Click on those 2 pages and you will be able to read about the surgeries.
Sounds as though the fundo will really help--it's so hard to function well when you don't get good sleep! I hope it makes a big (and positive) difference for him :)
ReplyDeleteThanks us too.Its doesn't help that his EDS makes his tired by the time he has woken up anyway. He has been really sleepy lately.He has bursts of energy but I think thats just his ADHD taking over.
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