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lynneb
@lynneb

Posts: 3
Joined: Oct 30, 2016

Need help with finding Otolanyingoloist!

Posted by @lynneb, Oct 29, 2016

Hello Out there! My name is Lynne and I and writing on behalf of my husband, I am new to this site and am looking for some kind of action or relief for my husband and best friend who is an oral cancer survivor! We heard about this great Dr. here in mayo Clinic in Phoenix after moving here from Tucson, and this Dr,… who is a ENT and Otolaryingologist, was going to perform a surgery for my husband that would help him to have teeth once again after a major surgery that took place almost 21/2 years ago. We were made to understand that this Dr. is not performing surgeries anymore because of his own health or misfortunes and were very sad to hear, because we heard that he loved his work and were feeling so secure in the notion he would be doing this surgery. I was so looking forward meeting him myself so that my Patrick can once again eat like a normal human being! This type of surgery would be costly and very maticulious, being that his lower jaw line was shaved down and partial tongue removed due to a tumor he had taken out in a hospital in Tucson. It required a 13 hour surgery. That was the second one, the first was 6 hours, I am happy to profess his health had bounced back after many issues thereafter such as getting teeth pulled before surgery in order for to make it go along easier and also radiation treatments thereafter to ensure the cancer was annihilated. All and all he is happy to be alive and can live to talk about it. But he feels not altogether yet whole with out teeth and makes life very hard to go on without teeth. It’s not like someone having their teeth pulled this was very strenuous surgery and his gums do not meet, so no solid food is able to be ingested at all. His wish is to have this surgery by finding the right Dr.. with complete credentials who can help him on his journey to become a real walking, talking, eating socializing human being with teeth once a gain. He’s had 3 years to heal and now say’s it’s too long to be without them. Can anyone out there help and suggest real ideas for us to help us looking in the right direction and have something to look forward too in the way of surgery for repair of gum tissue in order to get teeth?
!

REPLY

Hello @lynneb,
Welcome to Connect! I’m sorry to hear about your husband’s condition, but glad to know that he has been able to bounce back from the ordeal of having oral cancer.
Yes, even the best of doctors are susceptible to falling sick! Mayo’s otorhinolaryngologists work closely with other specialists to provide coordinated, comprehensive care for thousands of patients. This link will take you to the ENT department pages at each Mayo location, including a list of doctors:
http://mayocl.in/2eXHAzv
And, if you would like to read Mayo Clinic ENT patient stories, you can go here: http://mayocl.in/2eS2ixI

Lynne, can you tell us a bit more about the type of surgery Patrick needs? is he considering reconstructive surgery for the mouth?

The American Academy of Otolaryngology website has a tool that might be useful for finding a new doctor: http://www.entnet.org/content/find-ent

@kanaazpereira

Hello @lynneb,
Welcome to Connect! I’m sorry to hear about your husband’s condition, but glad to know that he has been able to bounce back from the ordeal of having oral cancer.
Yes, even the best of doctors are susceptible to falling sick! Mayo’s otorhinolaryngologists work closely with other specialists to provide coordinated, comprehensive care for thousands of patients. This link will take you to the ENT department pages at each Mayo location, including a list of doctors:
http://mayocl.in/2eXHAzv
And, if you would like to read Mayo Clinic ENT patient stories, you can go here: http://mayocl.in/2eS2ixI

Lynne, can you tell us a bit more about the type of surgery Patrick needs? is he considering reconstructive surgery for the mouth?

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Thank you for your reply.
I’ve been out of town for work purposes and I just now saw this. Well in response to the type of surgery Patrick needs, it would be once again a very robust type surgery that would involve a bone transplant ,..so we have been told anyway. We lived in Tucson where all surgeries took place at the time for the last 2 1/2 years! We only have lived here in Phoenix since since Feb 2016. His last ordeal down there after recovering the best he could from all surgeries, was to see about getting teeth and an assessment by a very good oral dentist or I should say a D.M.D., M.D.S,… said he would be unable to perform the surgery himself because Patrick would need his jaw reconstructed first and he told us of this Dr. here at Scottsdale Mayo and gave his name personally and said he sends all patients up here to him for anything more than he can handle. He said after he would have this surgery and when healed, he would be delighted to help him then. Well Patrick was accepted as a charitable case by Mayo Clinic (because he is now on disability) and appointments were made and set up with the oral surgeon that was going to take on Patrick’s case. And all was going good in getting all set up with him,.. when all of a sudden” Boom” , heard the news that this one and only surgeon was sadly involved in a traffic accident and has yet to return to his career he loved because of his own healing process and we were told they don’t think he ever will This goes back to around October/November of 2015 .We were sorry to hear this tragedy and now time has gone on again. The only thing we knew of how it would work would be to take bone from Patrick tibia in leg and place it in his mouth at the site of his now shaved down lower jaw and reconstruct so he may receive teeth in the future whereas to be fitted for new dentures. This has been a grueling process for the past 2 and a half years . Patrick made so much progress and healed from what others say they could never go through. There was even more devastation and setbacks than I can speak of here and he still came out of this alive. So this is where we are now and Patrick is just hanging in the midst and feels he lost the idea of ever getting teeth. Needless to say , he’s still hoping but the depression from never eating again like everyone else is taking it’s toll on him. All of these records are in Patrick file at Mayo and was led by a coordinator back east. Her name is Lois and that is all we have. They had him set up for this whole operation for surgery and prosthetic (setting in the anchors for dentures at the same time). Just waiting for this Dr. to return, but now as I said they say he is not coming back.You maybe know whom I speak of,but I can’t say his name in the case I may of heard only rumors. Is there a way to find this out?
Thank you for letting me convey this information to you, if you know of anything that you think could be done in Patrick’s favor I would be forever grateful and so would Patrick of course.

Is this your reply? ,, not sure I understand if your reply was this http: address. This would not be in Patrick’s best interest. He needs a surgeon I. I was hoping you understood my letter above.

@lynneb, Hello. I am happy to hear that your husband is doing well after such an invasive surgery. I am aware of the difficulties that come along after a head and neck cancer surgery and the road to recovery being often long and challenging. Our Otolaryngologists, Head and Neck Cancer Surgeons specifically, work closely in a team oriented environment with Oral surgeons on a daily basis. Use these contact numbers to contact Mayo Clinic http://mayocl.in/1mtmR63. They will answer your questions, take Patrick’s wishes into account and can recommend a skilled specialist. Finding the right surgeon to complete reconstruction is the next step. Keep pressing on.

Are there other options in Arizona? Or would you consider traveling to another Mayo location? Here is the link to the Mayo Clinic Minnesota Otorhinolaryngology Head and Neck Cancer department http://www.mayoclinic.org/departments-centers/otorhinolaryngology-ent/minnesota/overview

Patrick is not alone in feeling depressed after such a life changing diagnosis. Mayo Clinic Connect is a great place to find support from others who have experienced similar situations. I’d like to introduce you to other Connect members who are talking about head and neck cancers in the Cancer group. In this discussion group http://mayocl.in/2eskY6G you’ll meet @lisa_sj99 @mrsjhagen18 @sylviapf @lzzie.

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