Hi, good to hear from you. I was improving by my diet and stress reduction. When a family member became sick and I was thrust into the middle
as caregiver, within 2 weeks lichen planus spread to the left side of my mouth. Stress and lack of sleep....what you put in your mouth food,
is a huge part in keeping this under control. My ENT was pleased with my progress until I went back 4 weeks ago and the lichen planus had
spread........very painful. More concern now that it has spread. ENT, Dr. UVA said medically there was no more she could do but cut. and
she didn't want to do that. There is a cream that is new and it compromises the "T" in the immune system to keep it from attacking this tissue
but the "T" cell also fights cancer. I have not used this yet. The ENT was very discouraging my last visit and I ask would she use this
cream in her mouth.........no response. She is good and honest but UVA does not have a lot of cases of lichen planus and severe dysplasia.
Dr. ENT recommends homopathic or try new cream, which is new and not much data out yet. I see my doctor to be checked every 6 weeks
Someone on this site suggested "Tuff"s dental school in Boston, I believe. I hope she finds the cream her husband used that cleared it
up for both our sakes. I hope this info. helps
I know this conversation was started over a year ago, but was wondering about your outcome @elizabethbryant ? 3 years ago I was also diagnosed with severe dysplasia on the outer and lower-right side of my oral tongue. My first procedure was a partial glossectomy. May 1st of this year I was diagnosed with mild dysplasia and reactive leukoplakia, and underwent laser ablation to remove it all from the same area of the tongue as before. Just this morning, I had my 3 month post-surgery follow up and have developed additional mild dysplasia. I do not smoke or do drugs. I drink socially, about twice per month. I am a type 1 Diabetic. They can't tell me why it's happening yet. Doctor said we just gotta find the trigger and change it. Until then, I guess the plan is to keep removing pieces of my tongue. No action on the newest formation yet. I go back to check the progression in another 3 months. I sincerely hope you had a positive outcome from the treatment(s) you received.
Hello @daniellemajor and @elizabethbryant - yes I have had this condition too, as well as oral cancer. Non-drinker, non-smoker. Sorry you have been losing parts of your tongue Danielle. It must be painful. Since what seems like forever I have not been able to eat hot and spicy foods. Very interesting to hear the link between stress and these "skin" conditions.
I know this conversation was started over a year ago, but was wondering about your outcome @elizabethbryant ? 3 years ago I was also diagnosed with severe dysplasia on the outer and lower-right side of my oral tongue. My first procedure was a partial glossectomy. May 1st of this year I was diagnosed with mild dysplasia and reactive leukoplakia, and underwent laser ablation to remove it all from the same area of the tongue as before. Just this morning, I had my 3 month post-surgery follow up and have developed additional mild dysplasia. I do not smoke or do drugs. I drink socially, about twice per month. I am a type 1 Diabetic. They can't tell me why it's happening yet. Doctor said we just gotta find the trigger and change it. Until then, I guess the plan is to keep removing pieces of my tongue. No action on the newest formation yet. I go back to check the progression in another 3 months. I sincerely hope you had a positive outcome from the treatment(s) you received.
Surgery was not done on my tongue unless it showed severe dysplasia.. I changed from Dermatology to ENT doctor
I had a partial glossectomy of the tongue (awful) with skin graft. 2016 ......the recent event of family stress taking care
of a family member for 3 more weeks caused the lichen planus to spread to the left under side of my tongue.
I didn't realize I was living in so much peace and that this stress could cause this lichen planus spread so quickly.
The one thing that gives me peace is getting away from the stress/ My faith brings me peace at times and others praying
I see a difference........Go to the quiet place........I think about how Jesus went to "get away from the crowds" and
commune with the Father. I just telling you what works, cause the pain from the tongue surgeries make me horribly sick.
Enough my surgeon states we have to find another way rather than keep cutting on your tongue.
I am eating a lot of kale in a smoothie machine ($15) at Wal Mart Budwig Protocol. My ENT didn't want to create more scar
tissue. with surgery, so some natural means Homopathic. Please forgive if I have repeated myself, this is rough stuff and is stressful in itself. Remember NO SUGAR.
God does the healing, doctors do the surgery and what they know. Please give us wisdom.
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Hi, good to hear from you. I was improving by my diet and stress reduction. When a family member became sick and I was thrust into the middle
as caregiver, within 2 weeks lichen planus spread to the left side of my mouth. Stress and lack of sleep....what you put in your mouth food,
is a huge part in keeping this under control. My ENT was pleased with my progress until I went back 4 weeks ago and the lichen planus had
spread........very painful. More concern now that it has spread. ENT, Dr. UVA said medically there was no more she could do but cut. and
she didn't want to do that. There is a cream that is new and it compromises the "T" in the immune system to keep it from attacking this tissue
but the "T" cell also fights cancer. I have not used this yet. The ENT was very discouraging my last visit and I ask would she use this
cream in her mouth.........no response. She is good and honest but UVA does not have a lot of cases of lichen planus and severe dysplasia.
Dr. ENT recommends homopathic or try new cream, which is new and not much data out yet. I see my doctor to be checked every 6 weeks
Someone on this site suggested "Tuff"s dental school in Boston, I believe. I hope she finds the cream her husband used that cleared it
up for both our sakes. I hope this info. helps
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Like -
Helpful -
Hug
1 ReactionHello @daniellemajor and @elizabethbryant - yes I have had this condition too, as well as oral cancer. Non-drinker, non-smoker. Sorry you have been losing parts of your tongue Danielle. It must be painful. Since what seems like forever I have not been able to eat hot and spicy foods. Very interesting to hear the link between stress and these "skin" conditions.
-
Like -
Helpful -
Hug
1 ReactionSurgery was not done on my tongue unless it showed severe dysplasia.. I changed from Dermatology to ENT doctor
I had a partial glossectomy of the tongue (awful) with skin graft. 2016 ......the recent event of family stress taking care
of a family member for 3 more weeks caused the lichen planus to spread to the left under side of my tongue.
I didn't realize I was living in so much peace and that this stress could cause this lichen planus spread so quickly.
The one thing that gives me peace is getting away from the stress/ My faith brings me peace at times and others praying
I see a difference........Go to the quiet place........I think about how Jesus went to "get away from the crowds" and
commune with the Father. I just telling you what works, cause the pain from the tongue surgeries make me horribly sick.
Enough my surgeon states we have to find another way rather than keep cutting on your tongue.
I am eating a lot of kale in a smoothie machine ($15) at Wal Mart Budwig Protocol. My ENT didn't want to create more scar
tissue. with surgery, so some natural means Homopathic. Please forgive if I have repeated myself, this is rough stuff and is stressful in itself. Remember NO SUGAR.
God does the healing, doctors do the surgery and what they know. Please give us wisdom.
-
Like -
Helpful -
Hug
1 Reaction