Prayers for successful surgery
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Our story began when Elyse was 10 months old. I noticed an unusual area on her neck & after multiple referrals & doctor visits we finally found out that she had a rare skin disorder, linear epidermal/sebaceous nevus.
A few years later we found that it involved her ear canal as well. So at 4 she had her 1st surgery removing part of her ear canal.
Over the next years, we stayed ahead of things with many visits to many doctors & managed to accept what came our way. Things remained stable, but I continued to research any information I could find. Elyse has come to accept the "birth mark" on her neck but not without some cost to her self-esteem.
Last year the nevus starting growing outside her ear & was blocking her canal. She had multiple procedures, none of which stopped the growth, bringing me to the point of this request. Because of the rarity of this & changes in healthcare & insurance nationwide her procedures were denied, even in network. I researched & found a doctor in Chicago who was experience with this nevus. This procedure was successful but was not covered & was paid out of pocket up front before surgery. By the time we found him, had the consultation & scheduled the procedure the growth was too large to take out in its entirety without too much risk. We were hopeful that things might stay at bay but that was not to be. Elyse is scheduled for another surgery in June here in Pittsburgh & the doctor in Chicago is updating the surgeon here as well.
At this point, we are not sure once again if it will be a covered procedure or not, because the insurance company continues to say it is cosmetic. Time is important because it grows pretty rapidly once it starts. So covered or not the surgery is scheduled. Not soon enough for me but may be moved up if they have a cancellation.
Elyse & I know that there are so many more serious things that many children have gone through & that we have been blessed in so many ways. We have found other families who are dealing with these nevi & other types as well. The financial burden of her previous surgery does cause some stress & many friends have suggested reaching out for help on this site. After much soul searching I've decided to reach out & swallow my pride to help alleviate some of the daily stress that such a financial burden causes.
God bless,
Denise
A few years later we found that it involved her ear canal as well. So at 4 she had her 1st surgery removing part of her ear canal.
Over the next years, we stayed ahead of things with many visits to many doctors & managed to accept what came our way. Things remained stable, but I continued to research any information I could find. Elyse has come to accept the "birth mark" on her neck but not without some cost to her self-esteem.
Last year the nevus starting growing outside her ear & was blocking her canal. She had multiple procedures, none of which stopped the growth, bringing me to the point of this request. Because of the rarity of this & changes in healthcare & insurance nationwide her procedures were denied, even in network. I researched & found a doctor in Chicago who was experience with this nevus. This procedure was successful but was not covered & was paid out of pocket up front before surgery. By the time we found him, had the consultation & scheduled the procedure the growth was too large to take out in its entirety without too much risk. We were hopeful that things might stay at bay but that was not to be. Elyse is scheduled for another surgery in June here in Pittsburgh & the doctor in Chicago is updating the surgeon here as well.
At this point, we are not sure once again if it will be a covered procedure or not, because the insurance company continues to say it is cosmetic. Time is important because it grows pretty rapidly once it starts. So covered or not the surgery is scheduled. Not soon enough for me but may be moved up if they have a cancellation.
Elyse & I know that there are so many more serious things that many children have gone through & that we have been blessed in so many ways. We have found other families who are dealing with these nevi & other types as well. The financial burden of her previous surgery does cause some stress & many friends have suggested reaching out for help on this site. After much soul searching I've decided to reach out & swallow my pride to help alleviate some of the daily stress that such a financial burden causes.
God bless,
Denise
Organizer
Denise Kostelnik
Organizer
Aliquippa, PA