So we had our ENT consult for Serena.
As most of you know Serena has a paralyzed left vocal cord as a result of the nerve being damaged during her PDA ligation (an unfortunate complication.)
Not only does this effect Serena's voice, it also causes her to continue to aspirate, even on thickened liquids.
Because of the continued aspiration, made aware by a second barium swallow recently, we have decided to treat Serena's paralyzed cord.
A quick camera scope today showed no movement in the left cord, and it is "bowed" at a 30 degree angle. This makes her unable to close her cords to protect her airway like those without vocal paralysis do. Therefore, when she drinks, her cords can not come together and she aspirates. Continued aspiration can have ill health effects, as well as quality of life concerns as she gets older and goes to school. We thicken her milk now, but what about in school? With friends? Out for drinks when she's of age? We can't thicken her drinks forever, and it's time for treatment.
We are blessed to live in Massachusetts, a state with excellent hospitals. Mass Eye and Ear Infirmary is where we go. Our ENT is a leading researcher in the country with respect with pediatric voice and airway.
This treatment is being done at her age because of aspiration issues, and although it will most likely improve her voice (the procedures are done to improve voice without aspiration) we are opting for it now because of the aspiration problems.
As of now, there is no treatment to get a vocal cord to *move* once it is paralyzed by nerve damage. There are some cases of the cord spontaneously gaining mobility, but this is not likely for Serena, because it's almost definite that her paralysis is due to nerve damage at the time of her PDA ligation. At 20 months old, with a cord still paralyzed, the chances of it spontaneously moving again are nearly zero.
So for now, we are opting to do two procedures at once to help bring Serena's left vocal cord more to a 5 degree angle (almost closed) to protect her airway and prevent aspiration.
The first I'll describe is a temporary fix which needs to be done because the long term fix takes several months to "work." Here is a brief description: Injection augmentation laryngoplasty is done while the patient is fully asleep in the operating room. The procedure involves injecting a material deep to the vocal cords using special instrumentation. Our ENT uses a susbstance called Radiesse. The body absorbs much of the substance within a year of the procedure, which is why it is a temporary fix. It can be repeated, but since there is another option, we are going with that so that Serena doesn't have to repeatedly have the material injected.
The "fix" to keep her vocal cord at more of a 5 degree angle as opposed to the current 30, is called Laryngeal Reinnervation; specifically, ansa cervicalis to recurrent laryngeal nerve reinnervation.
In this procedure a nerve in the neck called the ansa cervicalis nerve is hooked up to the laryngeal nerve (the nerve that makes the vocal cord move). This re-innervation has had tremendous results for voice improvement and improvement in aspiration due to vocal cord paralysis. It does take some time for the "re-innervation" to take place, which is why we will do the injection as a temporary fix until the reinnervation works, which hopefully it will.
If her voice is a quality of life concern as she gets older there are additional steps we can take to try and improve it which will not be precluded by this reinnervation procedure.
The surgery is set for June 23rd. She will likely spend one night in the hospital for observation and will then be all set. We will have a follow-up modified barrium swallow set for 2 weeks after her surgery.
Please share this information with any other children with paralyzed vocal cords who have aspiration issues. It may even be an option to improve voice if it effects the child's quality of life. I have several studies sent to me by our ENT. It is a relatively new procedure and has not been done on many children; however I believe our ENT said he has done 3 of these surgeries so far.
Below are some pictures prior to this cold of Serena and Edwin with my Aunt Janet who is visiting.
Enjoy.
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3 comments:
Hi,
When I was a child, I used to go to Mass Eye and Ear Infirmary for my bilateral hearing losses. It is a WONDERFUL place. I feel so blessed that we live in this state too...
Thinking about you guys all the time! Time goes by so fast, doesn't it?
Randi
That's really neat. I know that our ENT has told us there's nothing that can be done about Dakota's paralyzed vocal cord until she's past puberty so I'm assuming he doesn't do that surgery. I hope it's a really smooth procedure and that she's home soon.
Good for you! I went to Mass Eye and Ear for years for my eye trouble and I think they're the only reason I managed to stay away from surgery for my strabismus.
Wishing you guys the best of luck!
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