Journal entry by Staci Petralba —
Today Benjamin had his cochlear implant placed! It has taken a while to get this done and it has been a lot of work but we are thankful we finally got here.
Dr. Patel did the surgery at Primary Children's Hospital today and everything went as well as it could. He surgically closed Benjamin's left ear which has the worst hearing and can't be fit appropriately with a hearing aid. Benjamin has had chronic fluid in his ears since birth and so far he had 2 sets of tubes. Today all the skin and middle ear bones.were removed from the left ear, the eustachian tube was packed closed with muscle and then the ear canal was sewed off to protect that ear from infection that could damage the implant and potentially cause meningitis.
Unexpectedly Dr. Patel found a cholesteatoma in the left ear. The ENT in Las Vegas that placed the last set of tubes in August 2022 apparently didn't realize it was a cholesteatoma and placed the tube in the cholesteatoma instead of it going into his middle ear. I can't believe she didn't properly diagnose and treat what was actually going on. I am extremely glad we are receiving ENT care at Primary Children's going forward and that this was found and appropriately treated today.
Because of the irritation and possible infection in the left ear it was a little more risky to place the implant today. There was no pus or obvious infection, it just seemed irritated. Dr. Patel said his ear was about a 5 out of 10 with 1 being no infection and 10 being horribly infected. He did not take any cultures because it's not helpful clinically as it takes several days to get results. In an ideal world the implant would not have been placed today due to the irritation and risk of infection in the left ear. Since we live so far away and it's hard for us to get up here he agreed to go ahead and place the implant. Surgeons are always analyzing risk so typically the risk of infection with an implant is 2%, he assessed Benjamin's risk to be 5%-10% with a 1% chance of developing meningitis. I decided I was ok with that risk, meaning there is a 90% chance he will be fine and not need another surgery. In the event that the implant gets infected and fails we would have to explant it (1 surgery) and then replace it (a separate surgery). So we are praying things go well and it doesn't get infected. Dr. Patel washed out the ear with an antibiotic rinse, did antibiotic sponges, and then coated it with an antibiotic powder. We will also give antibiotics 3x a day for 2 weeks. 🤞
The right ear was also full of fluid so a third tube was placed in the right ear. Dr. Patel predicts the right ear will probably develop a cholesteatoma at some point in the future so we will just have to monitor that. The right ear has mild to moderate hearing loss and is aidable with a hearing aid.
The biggest risk I was concerned about with the surgery was potential damage to the 7th cranial nerve which controls facial movement. The facial nerve is in the area that they have to drill through to place the implant. I didn't know that individuals with CHARGE don't have a natural opening to the cochlea so Dr. Patel had to drill an opening. Also because of the surgical approach he used since he was closing off the ear it put Benjamin at less risk of 7th nerve damage. Many individuals with CHARGE have an abnormal course of the 7th nerve as well but based on the imaging we did prior to surgery Benjamin has pretty normal 7th nerve anatomy. They continuously monitor the 7th nerve during surgery to try to prevent damage as well. When doing a consult with Dr. Patel prior to surgery he said he has done hundreds of implants on complicated ears and has never had a facial nerve injury which was comforting. Today I made him promise that he would not make Benjamin be the first 😉. All that to say Benjamins facial nerve seems fine and there does not appear to be any injury.
Furthermore when Dr. Patel stimulated the cochlear implant there was nothing that showed up on the facial nerve monitor which is excellent because sometimes the implant can stimulate the 7th nerve and cause some people to not even be able to use the implant or the sound quality can be affected because some electrodes have to be turned off.
The full electrode array of the implant was inserted into the cochlea but the 4 electrodes near the base of the cochlea were not working, Dr. Patel does not think they will ever work but there are 18 out of 22 functioning electrodes. I'm not sure why they aren't working, if its due to Benjamin's anatomy or what but we will learn more about the implications of that when the implant is activated and we start programming it. A lot of times people with CHARGE can't have the full array implanted anyway because the cochlea is not fully formed but based on the imaging Benjamin has a full cochlea.
Everything went well with anesthesia. Benjamin was VERY grumpy when he woke up from surgery, he screamed for about 1.5 - 2 hours which was really fun for everyone. He ended up with 4 total doses of fentanyl which didn't really seem to do much. Eventually they moved us to a private room and he calmed down enough to keep his oxygen mostly normal for 30 minutes so we could leave. Once we got back to the hotel he immediately passed out and took a nap. He is still intermittently fussy but much better than his 2 hour fit he threw at the hospital.
We will hang out at the hotel a couple more days to ensure he is in a pleasant enough mood that we can venture the 6 hour drive home. He is scheduled to come back and get his implant activated in a couple weeks!
Dr. Patel did the surgery at Primary Children's Hospital today and everything went as well as it could. He surgically closed Benjamin's left ear which has the worst hearing and can't be fit appropriately with a hearing aid. Benjamin has had chronic fluid in his ears since birth and so far he had 2 sets of tubes. Today all the skin and middle ear bones.were removed from the left ear, the eustachian tube was packed closed with muscle and then the ear canal was sewed off to protect that ear from infection that could damage the implant and potentially cause meningitis.
Unexpectedly Dr. Patel found a cholesteatoma in the left ear. The ENT in Las Vegas that placed the last set of tubes in August 2022 apparently didn't realize it was a cholesteatoma and placed the tube in the cholesteatoma instead of it going into his middle ear. I can't believe she didn't properly diagnose and treat what was actually going on. I am extremely glad we are receiving ENT care at Primary Children's going forward and that this was found and appropriately treated today.
Because of the irritation and possible infection in the left ear it was a little more risky to place the implant today. There was no pus or obvious infection, it just seemed irritated. Dr. Patel said his ear was about a 5 out of 10 with 1 being no infection and 10 being horribly infected. He did not take any cultures because it's not helpful clinically as it takes several days to get results. In an ideal world the implant would not have been placed today due to the irritation and risk of infection in the left ear. Since we live so far away and it's hard for us to get up here he agreed to go ahead and place the implant. Surgeons are always analyzing risk so typically the risk of infection with an implant is 2%, he assessed Benjamin's risk to be 5%-10% with a 1% chance of developing meningitis. I decided I was ok with that risk, meaning there is a 90% chance he will be fine and not need another surgery. In the event that the implant gets infected and fails we would have to explant it (1 surgery) and then replace it (a separate surgery). So we are praying things go well and it doesn't get infected. Dr. Patel washed out the ear with an antibiotic rinse, did antibiotic sponges, and then coated it with an antibiotic powder. We will also give antibiotics 3x a day for 2 weeks. 🤞
The right ear was also full of fluid so a third tube was placed in the right ear. Dr. Patel predicts the right ear will probably develop a cholesteatoma at some point in the future so we will just have to monitor that. The right ear has mild to moderate hearing loss and is aidable with a hearing aid.
The biggest risk I was concerned about with the surgery was potential damage to the 7th cranial nerve which controls facial movement. The facial nerve is in the area that they have to drill through to place the implant. I didn't know that individuals with CHARGE don't have a natural opening to the cochlea so Dr. Patel had to drill an opening. Also because of the surgical approach he used since he was closing off the ear it put Benjamin at less risk of 7th nerve damage. Many individuals with CHARGE have an abnormal course of the 7th nerve as well but based on the imaging we did prior to surgery Benjamin has pretty normal 7th nerve anatomy. They continuously monitor the 7th nerve during surgery to try to prevent damage as well. When doing a consult with Dr. Patel prior to surgery he said he has done hundreds of implants on complicated ears and has never had a facial nerve injury which was comforting. Today I made him promise that he would not make Benjamin be the first 😉. All that to say Benjamins facial nerve seems fine and there does not appear to be any injury.
Furthermore when Dr. Patel stimulated the cochlear implant there was nothing that showed up on the facial nerve monitor which is excellent because sometimes the implant can stimulate the 7th nerve and cause some people to not even be able to use the implant or the sound quality can be affected because some electrodes have to be turned off.
The full electrode array of the implant was inserted into the cochlea but the 4 electrodes near the base of the cochlea were not working, Dr. Patel does not think they will ever work but there are 18 out of 22 functioning electrodes. I'm not sure why they aren't working, if its due to Benjamin's anatomy or what but we will learn more about the implications of that when the implant is activated and we start programming it. A lot of times people with CHARGE can't have the full array implanted anyway because the cochlea is not fully formed but based on the imaging Benjamin has a full cochlea.
Everything went well with anesthesia. Benjamin was VERY grumpy when he woke up from surgery, he screamed for about 1.5 - 2 hours which was really fun for everyone. He ended up with 4 total doses of fentanyl which didn't really seem to do much. Eventually they moved us to a private room and he calmed down enough to keep his oxygen mostly normal for 30 minutes so we could leave. Once we got back to the hotel he immediately passed out and took a nap. He is still intermittently fussy but much better than his 2 hour fit he threw at the hospital.
We will hang out at the hotel a couple more days to ensure he is in a pleasant enough mood that we can venture the 6 hour drive home. He is scheduled to come back and get his implant activated in a couple weeks!
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