My Story

A long time ago in a galaxy far, far away. Well, with my affinity for Star Wars aside I’d thought I’d share my story on this board. I’ve been reading this board for a while now and discovered it by Google searching esophagectomy and am moved by what I read and have read. Fortunately, my story only started a bit of EC, which has now been eradicated. Enough with the introduction – here’s part of my story.

At age 37 in 2008 (with wife and three daughters aged 6, 4, 2 at the time) I had some stomach pain and a few mysterious episodes of chocking/spitting up. I visited a GI Dr. who then scheduled an endoscopy. I didn’t think much of it and actually almost cancelled my procedure. Well, wouldn’t you know it, the next thing I remember is sitting down with my wife and the Dr saying that I had a decent sized tumor inside the base of my esophagus with a little seeping into my stomach. He was 99% sure that it was cancer and suggested an aggressive treatment program in the future. He of course took a biopsy. The next few days were a whirlwind – I thought I had EC. Two days later he called back to say it came back NEGATIVE for cancer, simply a benign tumor. A scan the next day confirmed that no other tumors were present in my body.

Naturally, the tumor had to be removed and we met with a skilled surgeon in Fresno, CA (where I live). He explained the procedure and we were ready to rock and roll. I’m an elementary school teacher and this was in the summer. The first surgery was scheduled for August 15. The plan was to remove 1/3 of my esophagus and a little of my stomach and then reattach it. The first attempt at surgery was cancelled the night before because my blood platelet count was dangerously low. Had to go on Prednizone and have a bone marrow biopsy to rule out causes. That wasn’t too much fun but not terrible. I returned to surgery “go” status a month later. 45 minutes into going under I wake up with the anesthesiologist saying he couldn’t get the right breathing tube down my throat and had to abort the surgery. Really neat. My surgeon was really upset.

Fast-forward to Sept 28, 2008 and I finally had a successful laproscopic surgery. Everything was hunky-dory after the first four days: I was eating Jell-O and soup, pain was minimal and I was most likely going to be discharged later in the day when something bad happened. Really bad. After his morning check up, the Dr. on rounds had just checked up on me. Then all of a sudden I had difficulty breathing. I remember getting up and finding the Dr. at the nurse’s desk and told him I was having trouble breathing. Then I remember hearing something like “code red, code red, in room 14B” and having nurses surround me. The next thing I remember (notice a theme here?) is waking up in ICU with my wife and her best friend standing at the base of my bed. Apparently this was eight hours later. Tubes were coming out of me everywhere and I couldn’t speak because of the one jammed down my throat. I then had a writing exchange with my wife on paper which started with me writing “what the heck happened to me?”. We still have that paper. Well, that bad thing that happened was that I went septic and a leak started in my lungs. Hence not being able to breath. I spent 7 more days in ICU and then 7 more days in the hospital. Not a fun experience. Semi-traumatizing one could say.

I was finally discharged and arrived home with a feeding tube and two drainage tubes. I went into surgery at 205 lbs and came home 173 lbs. My wife was my caregiver and she was incredible. I was hooked up to a feeding machine at night and she administered my food and shots. After six weeks I ran out of sick time and returned to teaching – way too early. I could write approx 35,129 more words covering the next 2 ½ years of my life but I’ll spare the gory details. Basically up until July 29, 2011 my life was a living hell. It didn’t start out that way but turned into a nightmare. Once I started introducing food (after the feeding tube was removed) the vomiting and acid reflux began its fury. Again, over the course of the next 2 ½ years what was left of my esophagus turned to hamburger meat from all the vomiting and acid. I kind of had a routine – I would wake up, vomit black bile looking stuff in either the toilet or the shower and then off to work. Sometimes I would vomit in the car into a cup (30 min drive to work). I would often vomit in the trash can or outside of my classroom while in the middle of teaching. Sometimes I would vomit up to 16 times a day. First it would be the food I ate then it would turn into the gross, black stuff. I had a GI Dr. who would do endoscopies and would diagnose the same issue – esophagitis. Well DUH! Also at first, there wasn’t much pain associated with my vomiting, it was simply something I was starting to get used to. Then the pain started coming more aggressively. After months and months of continuous vomiting the pain turned massive. I think the longest period of time off I had from vomiting was 9 days – for 2 ½ years! There were many times I would scream in pain, writhing on the floor in the bathroom. I felt bad for my wife as she would try and help me but was caught up in a helpless feeling. My Dr. didn’t want to prescribe Vicodin because it “slows down motility”. So he had me take Tramadol which was pretty week. I've now had Vicodin on and off the past year or so and it's helped a lot. This pain affected so many areas of my life and I was starting to turn very angry – my wife, children, job, and every facet of my busy and productive life were effected negatively. I was a coach and high school youth group advisor as well. I was in survival mode most every day.

I can’t pretend to understand what some of you have gone through during chemo or radiation – or what you’ve witnessed as caregivers. I personally do not know someone close to me who has gone through chemo so I don’t know first hand what the ramifications are. I can only go by what I’ve heard and read on here. The personal stories here are tragic and don’t think I can compare the pain and suffering to my own. I don’t want to seem trivial because as of right now I do not have cancer.

I did go to Stanford on three different occasions for tests and met with a surgeon there twice during this time. At the time I didn’t feel 100% comfortable with the surgeon and did not elect to have a corrective-type surgery.

In May of 2011 my wife and decided to see another GI Dr. Best. Decision. Ever. She was extremely fast-moving and aggressive and wanted to find a solution for me. She understood what I was going through and wanted to scope me herself. Three days later after our first visit we had an endoscopy and afterwards told my wife that my esophagus was one of the worst, if not the worst, mangled esophagus she had ever seen. It bled very easily on contact and was severely ulcerated. I estimated that I had thrown up around 1,200 times since my first surgery and the damage was severe. She has said on many occasions that she’s not sure how I coped and survived the past few years of my life. She recommended a surgeon named Dr. Kelvin Higa, also in Fresno, who is a nationally renowned MIE surgeon. We met with him and one of the first things he asked us was “how’s your teeth?”. More on that later. He was very confident he could fix me and improve my quality of life. He likes the complicated cases and mine was going to quench his thirst for this. He had some ideas what he was going to do but wasn’t going to be fully sure until he opened me up and looked in with his own eyes. The main objective was to get me to quit vomiting. I was truly afraid that I was going to lose my esophagus if I didn’t stop vomiting and I was optimistic that the surgery was going to be a success.

July 29, 2011 was the day of the surgery. I felt this was our last hope to a better quality of life. There was no way I could continue my life at this rate. I was all prayed up and ready. About 15 friends and family members were with me before I was wheeled in. Well, the surgery ended up being “easier” than Dr. Higa first thought. Everything went very smooth and he was able to perform a pyloroplasty and a nissen fundoplication. After three nights and four days in the hospital with no complications I was able to return home. Obviously I started out on a clear liquid diet which I hated! After day four or so I wanted to throw the broth and/or Jell-O against the wall. Sound familiar? I healed up nicely but continued to lose weight. The day of surgery I was 162 lbs and slowly saw myself get thinner. I think my lowest I dropped was to 140 lbs about five weeks ago. Again, my wife and family were incredible during this time. School started August 14 and my wife actually took over my class as a full time sub! We couldn’t really take the financial hit at this time. It was a strange but exciting time to not physically be able to vomit! I went through bouts (and still do at times) of dry-heaving and spitting up whatever saliva was sitting in my esophagus but I happy to say that I’m now officially vomit free. I count my latest surgery a great success.

But sadly, as I mentioned before, due to the amount of vomiting and acid my teeth are now completely ruined. My dentist started seeing the erosion a little over a year ago and told me to brace myself for the future. At that time there were really no visible signs so I wasn’t too worried. But the last year has been filled with my teeth literally crumbling in my mouth. More than a few times I’ve been chewing my food only to have a chunk of tooth fall out and then spit into my hand. I have the teeth of an anorexic or meth addict to be sure. I have had eight total teeth pulled with two bottom teeth with the tops broken in half. The plan is for all my bottom teeth but three to be pulled this Christmas break, with two weeks to heal before some dentures/implants will be inserted. This whole entire teeth process has been quite painful and most likely I will have two other hurting teeth pulled this Wednesday. Insurance does not cover implants or dentures so all this will be out-of-pocket. Not fun to put our family in a financial hole. I’m hoping the entire implant/denture issue will be completed by Christmas time of 2012.

I didn’t plan at all to write this much but I think it’s been therapeutic for me in a way. Hope it wasn’t too boring and/or self-indulgent. It tears me up to read all the headache and pain on this message board and I don’t even pretend to say how I understand how you all feel. There have been times when I’ve wanted to die because of the pain and the loss of hope but seeing and thinking of my girls and family kept me going. I’ve had many, many bouts with incredible pain, suffering, and hopelessness but I can finally start to see some light at the end of the tunnel. My hope is that I can again be the husband, father, teacher/coach, friend, and God-pleasing man I was meant to be. I am so, so sorry for all your heartache and pain and can only offer my prayers and words of support. The support of this message board is unmatched in anything I have ever seen on the internet. Blessings to all.
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Comments

  • jgwright
    jgwright Member Posts: 242
    Thanks
    For your story. Sounds rather horrific, and isn't it interesting, and sad, that tooth care just isn't covered very well by insurance. We appreciate your sharing, and it sure shows the difference in Doctors. You just have to research, and listen to others to find the good ones.

    --Jerry
  • paul61
    paul61 Member Posts: 1,391 Member
    Thanks for sharing your story
    You have certainly had horrific and painful time over the last two and a half years. I am just amazed that the medical community could allow someone to endure that level of suffering for so long without some aggressive intervention. I am happy that you have found someone that will take a more aggressive approach in the future.

    I can identify with the dental issues. It appears that chemotherapy has done a number on my teeth as well; in the last year I have had over six thousand dollars in dental work. Very little of it was covered by my dental insurance. But given that I had esophageal cancer, I am happy to be alive and will trade some dental issues for survival.

    I hope your future holds more positive medical progress than the last two years.


    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • TerryV
    TerryV Member Posts: 887
    I am saddened and amazed by your post
    I cannot believe that you were medically *allowed* to continue in such pain and agony for so long. It escapes me that any doctor would find it permissible to have their patient vomit daily for 2+ years. I'm grateful you found Dr. Higa and that some resolution has finally been reached. I'm sorry that it isn't possible to give you your lost time back....

    Thank you for sharing your story with us. It's so very similar to EC. I hope that you truly have found your light at the end of the tunnel with your most recent surgery.

    If there is anything we can offer, don't hesitate to ask. It's a devil of a good group here.

    Terry
    Wife to Nick, age 48
    dx T3N1M0 05/19/11
    THE 09/08/11
    Clean Path 09/13/11
  • FunGuy,
    Wow! Thanks for sharing your story, its sound like you have been through the ringer.... a couple of times. How horrible the pain must of been. I am glad your medical condition has improved. Good luck with the Dental work.
    Sal
  • FunGuy
    FunGuy Member Posts: 20

    FunGuy,
    Wow! Thanks for sharing your story, its sound like you have been through the ringer.... a couple of times. How horrible the pain must of been. I am glad your medical condition has improved. Good luck with the Dental work.
    Sal

    Thanks guys! And Jerry --
    Thanks guys! And Jerry -- I've read about your situation and I'm very sorry. I hope things turn around for you.

    Terry -- my wife and I have talked about what we would have done differently regarding pain and vomiting. I suppose we didn't know any better and thought this was a natural consequence after the surgery.

    Paul -- yeah, the teeth issue is no fun. I had to put in an emergency call yesterday to the dentist because of pain and a cracked tooth. Going in tomorrow morning.

    Even though I'm the "FunGuy" I suppose my real name would help.......

    -Paul
  • preacherchad
    preacherchad Member Posts: 60
    Thanks
    Paul aka Fun Guy, thanks for sharing your story. Glad you are doing better. I hate that you have had such a rough time. Hopefully your family is doing well also.

    I had dental work done today myself. That is no fun, but part of the journey.

    God Bless you

    chad
  • carolyn45
    carolyn45 Member Posts: 100

    Thanks
    Paul aka Fun Guy, thanks for sharing your story. Glad you are doing better. I hate that you have had such a rough time. Hopefully your family is doing well also.

    I had dental work done today myself. That is no fun, but part of the journey.

    God Bless you

    chad

    About teeth
    I lurk out on this board because I've been totally captivated by the intelligence, expertise, and incredible loving support offered by these utterly amazing EC sufferers and their caregivers. I had an ovarian tumor perforate my colon last February, on our annual return from Scotland to the USA. I'd turned 65 and had Medicare, so rather than traveling the 65 miles to the city nearest us in the Highlands for the procedure, I'd decided to do it in southern Oregon, where the facilities were close at hand. After an emergency ileostomy (too much cancer to even see my colon, let alone repair it), I went through 3 rounds of chemo with "over the top" response. Debulking surgery and reversal of the ileostomy in May had me in remission. 3 more rounds of chemo for the microscopic stuff, and I was done. My husband and I could return to our home in Scotland. 3 weeks later I had horrible sores in my mouth. Yes, I AM getting to teeth!

    I was a psychotherapist for 25 years and definitely entered that profession through the back door, so to speak. I had an incredibly severe eating disorder for 20 years before I went to a therapist who had heard of bulimarexia. I threw up almost everything I ate for all those years. When I was 25 I lived in Mexico for a year, to learn Spanish the "natural" way, and my weight never got above 85 pounds. When I returned to the USA, I had my routine dental check. Aside from the usual cavities, I had 26 dead teeth. I'd never had a toothache. They had died, literally, of malnutrition. So when these sores started, I thought I'd better check out throat cancer. I had puked multiple times a day for all those years...and I was still in shock from the events of this year. Hence the EC site. I must say that I truly love Lee and Chantal, Eric and Michelle, and so many others who have shared everything they have. What an incredible site this is!

    So, finally to teeth. I've had 26 root canals--every tooth in my head except the wisdom teeth that were pulled at 16. Then a set of caps, periodontal surgery, then another set of caps. But the decay was too far under the gum line, so at age 38 all my teeth were pulled, and I've had dentures ever since. What a relief! I know dentistry well. This is what to do. Find a denturist!! Originally I was in California. My dentist was super, but when he knew I was moving to Oregon, he said, "Go to a denturist. They're not licensed in CA, but they are in OR. I'm as good as it gets with dentists, but a denturist is at a whole different level." I took his advice, and it was the best thing I ever did for myself. The dentures he made were perfect--never a sore spot.

    14 years after I got these great dentures, I went back to "my guy" because we were moving to Scotland and I know a set of dentures doesn't last forever. He said that new dentures were in order, but he also told me that it would help bone loss if I would go for an "implant denture." It was $8000, but it's one of the most successful dental surgeries available. Rather than going for individual implants, 2 steel "snaps" are put into the jawbone, The lower denture literally snaps into place and never moves. The upper denture is almost always a piece of cake. Natural suction keeps it in place. It's not fun, but get all of those lousy teeth pulled by the best oral surgeon you can find who can also but in the "snaps" in your lower jawbone. You'll have gorgeous, incredibly natural looking teeth. When I eat cottage cheese, I love going into the bathroom and rinsing my teeth, unlike the masses who have to brush and floss.

    The sores in my mouth turned out to be oral herpes, a result of my immune system being retarded due to chemo. I like to think that my fears of EC (that arose out of my fear that all that vomiting) were there to get me to this site. Everyone posting here has helped me enormously in getting clear about what dies and what doesn't. Clearly love and connectedness live forever. I am in awe of all of you.
  • FunGuy
    FunGuy Member Posts: 20
    carolyn45 said:

    About teeth
    I lurk out on this board because I've been totally captivated by the intelligence, expertise, and incredible loving support offered by these utterly amazing EC sufferers and their caregivers. I had an ovarian tumor perforate my colon last February, on our annual return from Scotland to the USA. I'd turned 65 and had Medicare, so rather than traveling the 65 miles to the city nearest us in the Highlands for the procedure, I'd decided to do it in southern Oregon, where the facilities were close at hand. After an emergency ileostomy (too much cancer to even see my colon, let alone repair it), I went through 3 rounds of chemo with "over the top" response. Debulking surgery and reversal of the ileostomy in May had me in remission. 3 more rounds of chemo for the microscopic stuff, and I was done. My husband and I could return to our home in Scotland. 3 weeks later I had horrible sores in my mouth. Yes, I AM getting to teeth!

    I was a psychotherapist for 25 years and definitely entered that profession through the back door, so to speak. I had an incredibly severe eating disorder for 20 years before I went to a therapist who had heard of bulimarexia. I threw up almost everything I ate for all those years. When I was 25 I lived in Mexico for a year, to learn Spanish the "natural" way, and my weight never got above 85 pounds. When I returned to the USA, I had my routine dental check. Aside from the usual cavities, I had 26 dead teeth. I'd never had a toothache. They had died, literally, of malnutrition. So when these sores started, I thought I'd better check out throat cancer. I had puked multiple times a day for all those years...and I was still in shock from the events of this year. Hence the EC site. I must say that I truly love Lee and Chantal, Eric and Michelle, and so many others who have shared everything they have. What an incredible site this is!

    So, finally to teeth. I've had 26 root canals--every tooth in my head except the wisdom teeth that were pulled at 16. Then a set of caps, periodontal surgery, then another set of caps. But the decay was too far under the gum line, so at age 38 all my teeth were pulled, and I've had dentures ever since. What a relief! I know dentistry well. This is what to do. Find a denturist!! Originally I was in California. My dentist was super, but when he knew I was moving to Oregon, he said, "Go to a denturist. They're not licensed in CA, but they are in OR. I'm as good as it gets with dentists, but a denturist is at a whole different level." I took his advice, and it was the best thing I ever did for myself. The dentures he made were perfect--never a sore spot.

    14 years after I got these great dentures, I went back to "my guy" because we were moving to Scotland and I know a set of dentures doesn't last forever. He said that new dentures were in order, but he also told me that it would help bone loss if I would go for an "implant denture." It was $8000, but it's one of the most successful dental surgeries available. Rather than going for individual implants, 2 steel "snaps" are put into the jawbone, The lower denture literally snaps into place and never moves. The upper denture is almost always a piece of cake. Natural suction keeps it in place. It's not fun, but get all of those lousy teeth pulled by the best oral surgeon you can find who can also but in the "snaps" in your lower jawbone. You'll have gorgeous, incredibly natural looking teeth. When I eat cottage cheese, I love going into the bathroom and rinsing my teeth, unlike the masses who have to brush and floss.

    The sores in my mouth turned out to be oral herpes, a result of my immune system being retarded due to chemo. I like to think that my fears of EC (that arose out of my fear that all that vomiting) were there to get me to this site. Everyone posting here has helped me enormously in getting clear about what dies and what doesn't. Clearly love and connectedness live forever. I am in awe of all of you.

    A little update on my teeth.
    A little update on my teeth. I actually had 7 more teeth extracted on Dec 20 including six bottom ones in the middle. I think I'm up to 13 total teeth pulled in the last 6 months. It hasn't been a fun month or so since the latest extractions. Yesterday I met with my dentist and I have some jaw bone protruding which is going to make dentures difficult. My oral surgeon is now going to have to shave the bone down so my dentures don't rub and make it uncomfortable. I'm also meeting with my friend who's a great implant specialist on Jan 31. He was named one of Fresno's top dentists last year.

    Anyway, my teeth issue has now taken center stage and looks to be around a year process.
  • FunGuy said:

    A little update on my teeth.
    A little update on my teeth. I actually had 7 more teeth extracted on Dec 20 including six bottom ones in the middle. I think I'm up to 13 total teeth pulled in the last 6 months. It hasn't been a fun month or so since the latest extractions. Yesterday I met with my dentist and I have some jaw bone protruding which is going to make dentures difficult. My oral surgeon is now going to have to shave the bone down so my dentures don't rub and make it uncomfortable. I'm also meeting with my friend who's a great implant specialist on Jan 31. He was named one of Fresno's top dentists last year.

    Anyway, my teeth issue has now taken center stage and looks to be around a year process.

    This comment has been removed by the Moderator
  • suezque1214
    suezque1214 Member Posts: 15
    jgwright said:

    Thanks
    For your story. Sounds rather horrific, and isn't it interesting, and sad, that tooth care just isn't covered very well by insurance. We appreciate your sharing, and it sure shows the difference in Doctors. You just have to research, and listen to others to find the good ones.

    --Jerry

    side effects of EC and other gastric problems-Teeth
    My husband is the EC patient in our house and is doing well at this time. I don't recall any of his physicians mentioning the potential for dental issues with this disease. Although, we were aware of the potential problems due to our daughter. She is a Crone's sufferer and has had acid reflux issues related to the crone's for years. Luckily, she is in remission now and rarely suffers the terrible symptoms she had a few years ago. She has regained all of her weight (at one point she lost 30 pounds in one month.) She does not require the steriods any longer either. However, her teeth are crumbling. One dentist she went to thought she was a meth addict and she had to explain the real issue. She does not have dental insurance and right now she needs extensive treatment inclluding extractions, root canals, etc. etc. All this at the ripe old age of 35. This all started about when she was 25. Unfortunately, she has been unable to have the work done because of no insurance and no dentist willing to do the work at a price she might have a shot at affording. Most of them want half up front. She just doesn't have it.
    Anyway, One of the first things my husband did was to see his dentist after his diagnosis. He knew that he would not be able to have any work done while in chemo and radiation. He had MIE at BArnes St Louis on August 31. his recovery has not been trouble free, but a lot smoother than many of the folks on here. He had his Dental check up on january 5, and luckily everything is good. He will continue to visit his dentist regularly, probably every three months for a while just to make sure.
  • suezque1214
    suezque1214 Member Posts: 15
    jgwright said:

    Thanks
    For your story. Sounds rather horrific, and isn't it interesting, and sad, that tooth care just isn't covered very well by insurance. We appreciate your sharing, and it sure shows the difference in Doctors. You just have to research, and listen to others to find the good ones.

    --Jerry

    side effects of EC and other gastric problems-Teeth
    My husband is the EC patient in our house and is doing well at this time. I don't recall any of his physicians mentioning the potential for dental issues with this disease. Although, we were aware of the potential problems due to our daughter. She is a Crone's sufferer and has had acid reflux issues related to the crone's for years. Luckily, she is in remission now and rarely suffers the terrible symptoms she had a few years ago. She has regained all of her weight (at one point she lost 30 pounds in one month.) She does not require the steriods any longer either. However, her teeth are crumbling. One dentist she went to thought she was a meth addict and she had to explain the real issue. She does not have dental insurance and right now she needs extensive treatment inclluding extractions, root canals, etc. etc. All this at the ripe old age of 35. This all started about when she was 25. Unfortunately, she has been unable to have the work done because of no insurance and no dentist willing to do the work at a price she might have a shot at affording. Most of them want half up front. She just doesn't have it.
    Anyway, One of the first things my husband did was to see his dentist after his diagnosis. He knew that he would not be able to have any work done while in chemo and radiation. He had MIE at BArnes St Louis on August 31. his recovery has not been trouble free, but a lot smoother than many of the folks on here. He had his Dental check up on january 5, and luckily everything is good. He will continue to visit his dentist regularly, probably every three months for a while just to make sure.
  • Daisylin
    Daisylin Member Posts: 365
    unknown said:

    This comment has been removed by the Moderator

    oh my!!!!
    I do remember reading your first post, and I was speechless about your dental problems. What a nightmare! I am sorry that you are facing all these problems, but so glad that the "c" word is not one of them! Keep chugging away, and hope the end of the tooth issues is near for you. It certainly sounds like you've had more than your share of problems, and I'm so glad they they have been able to stop the vomiting. What a horrible way to live for all those years....
    be well,
    Chantal
  • FunGuy
    FunGuy Member Posts: 20
    unknown said:

    This comment has been removed by the Moderator

    Nice to meet you William
    Since you personally responded to my post I now feel I have some reputation on this board! Your replies to those who only post once and your willingness to research and help those in need are extraordinary.

    Williams, I'm with you on the teeth issue. I was in survival mode for so long in relation to my esophagus that my teeth issues were on the back-burner -- but now are at the forefront of my life. On Tuesday (they got me in quick that day) my oral surgeon had to shave some of my jaw bone off that was going to interfere with my dentures that I'm getting this coming Monday. That was not a fun experiment.

    I've obviously been on liquid diets before so the whole not-being-able-to-chew thing isn't a huge deal. I am able to chew on one top and one bottom tooth and so my food of choice now soft grilled cheese sandwiches -- the best being from West Coast fast food chain In-N-Out Burger!

    The cost of my mouth reconstruction is going to be huge. My dental insurance covers $1,500 a year which didn't even cover the 7 extractions a month ago. We are actually building a case to show the insurance company that my teeth issues are directly related to my tumor issues and are 100% the cause. I have a letter from my GI and regular doctor as well as x-ray proof and another letter from my dentist. It's worth a shot in the dark.

    I could write some more but I have to get back to teaching........
  • FunGuy said:

    Nice to meet you William
    Since you personally responded to my post I now feel I have some reputation on this board! Your replies to those who only post once and your willingness to research and help those in need are extraordinary.

    Williams, I'm with you on the teeth issue. I was in survival mode for so long in relation to my esophagus that my teeth issues were on the back-burner -- but now are at the forefront of my life. On Tuesday (they got me in quick that day) my oral surgeon had to shave some of my jaw bone off that was going to interfere with my dentures that I'm getting this coming Monday. That was not a fun experiment.

    I've obviously been on liquid diets before so the whole not-being-able-to-chew thing isn't a huge deal. I am able to chew on one top and one bottom tooth and so my food of choice now soft grilled cheese sandwiches -- the best being from West Coast fast food chain In-N-Out Burger!

    The cost of my mouth reconstruction is going to be huge. My dental insurance covers $1,500 a year which didn't even cover the 7 extractions a month ago. We are actually building a case to show the insurance company that my teeth issues are directly related to my tumor issues and are 100% the cause. I have a letter from my GI and regular doctor as well as x-ray proof and another letter from my dentist. It's worth a shot in the dark.

    I could write some more but I have to get back to teaching........

    This comment has been removed by the Moderator
  • FunGuy said:

    Nice to meet you William
    Since you personally responded to my post I now feel I have some reputation on this board! Your replies to those who only post once and your willingness to research and help those in need are extraordinary.

    Williams, I'm with you on the teeth issue. I was in survival mode for so long in relation to my esophagus that my teeth issues were on the back-burner -- but now are at the forefront of my life. On Tuesday (they got me in quick that day) my oral surgeon had to shave some of my jaw bone off that was going to interfere with my dentures that I'm getting this coming Monday. That was not a fun experiment.

    I've obviously been on liquid diets before so the whole not-being-able-to-chew thing isn't a huge deal. I am able to chew on one top and one bottom tooth and so my food of choice now soft grilled cheese sandwiches -- the best being from West Coast fast food chain In-N-Out Burger!

    The cost of my mouth reconstruction is going to be huge. My dental insurance covers $1,500 a year which didn't even cover the 7 extractions a month ago. We are actually building a case to show the insurance company that my teeth issues are directly related to my tumor issues and are 100% the cause. I have a letter from my GI and regular doctor as well as x-ray proof and another letter from my dentist. It's worth a shot in the dark.

    I could write some more but I have to get back to teaching........

    This comment has been removed by the Moderator
  • FunGuy
    FunGuy Member Posts: 20
    unknown said:

    This comment has been removed by the Moderator

    Teef
    William, you're awesome. A quick post here because I gotta get back to teaching/coaching here at school.

    I got my dentures Monday morning and to be blunt I hate them and am disappointed in them. I 100% understand they're going to take time to get used to but the top ones feels so out of place and uncomfortable. The bottoms aren't too bad, at least they LOOK great. Seriously, they feel like I have a huge mechanical device sitting in my mouth. Chewing is no good as I'm now taking my dentures out to eat and chewing on my one good spot (one tooth on bottom and one on top). Any advice?

    Signed,

    Frustrated in Fresno
  • FunGuy said:

    Teef
    William, you're awesome. A quick post here because I gotta get back to teaching/coaching here at school.

    I got my dentures Monday morning and to be blunt I hate them and am disappointed in them. I 100% understand they're going to take time to get used to but the top ones feels so out of place and uncomfortable. The bottoms aren't too bad, at least they LOOK great. Seriously, they feel like I have a huge mechanical device sitting in my mouth. Chewing is no good as I'm now taking my dentures out to eat and chewing on my one good spot (one tooth on bottom and one on top). Any advice?

    Signed,

    Frustrated in Fresno

    This comment has been removed by the Moderator
  • JReed
    JReed Member Posts: 428
    FunGuy said:

    Teef
    William, you're awesome. A quick post here because I gotta get back to teaching/coaching here at school.

    I got my dentures Monday morning and to be blunt I hate them and am disappointed in them. I 100% understand they're going to take time to get used to but the top ones feels so out of place and uncomfortable. The bottoms aren't too bad, at least they LOOK great. Seriously, they feel like I have a huge mechanical device sitting in my mouth. Chewing is no good as I'm now taking my dentures out to eat and chewing on my one good spot (one tooth on bottom and one on top). Any advice?

    Signed,

    Frustrated in Fresno

    You'll get used to them
    Dear Frustrated in Fresno:

    I know exactly how you feel about the dentures. I have an upper denture and a partial on the bottom. I felt just like you do now in the beginning. My need for dentures had nothing to do with cancer but getting used to the new gadget in your mouth is a trip. It does take quite a bit to get used to them - don't take them out to chew - just keep working with them and you'll get used to them quicker. Also, you migh be surprised that someday - you won't feel right if they aren't in.

    I used oral gel to help some of the 'sore' spots until mouth completely healed and I use a denture cream to help keeping food particles from going under the denture. Also - I used wax like they use for braces to ease the rough spots until the dentist could shave and grind as my mouth healed.

    You will still have some bone loss in the jaws, but not as much as you will have if you don't keep the dentures in. My dad was supposed to wear dentures and he stubbornly refused to take time to get used to them and being toothless caused him some issues later in life - so please hang in there - go back to your dentist until the denture feels right - as your mouth heals - the denture may feel hard or hurt in some areas during this healing process.

    Also - the dental bills will decrease and that is a nice perk (if there is one) for wearing dentures. No fillings, cleanings, caps, crowns, root canals, and extractions, etc.

    You can do it!
    Judy
  • TerryV
    TerryV Member Posts: 887
    FunGuy said:

    Teef
    William, you're awesome. A quick post here because I gotta get back to teaching/coaching here at school.

    I got my dentures Monday morning and to be blunt I hate them and am disappointed in them. I 100% understand they're going to take time to get used to but the top ones feels so out of place and uncomfortable. The bottoms aren't too bad, at least they LOOK great. Seriously, they feel like I have a huge mechanical device sitting in my mouth. Chewing is no good as I'm now taking my dentures out to eat and chewing on my one good spot (one tooth on bottom and one on top). Any advice?

    Signed,

    Frustrated in Fresno

    Nick too....
    Nick has both upper and lower dentures. His "toof" issues were not cancer/chemo/rads related. He had poor dental hygiene as a kid and complicated that with a family history of gum disease. By age 40, he had 6 teeth worth saving, so dentures were the logical "fix".

    Like all of you, he found that dentures hurt. They fit poorly and hit many tender spots. He also say the dentures feel like having a mouth full of marbles. He has developed a bad habit of going without dentures. But he has adapted. He eats everything except crispy, crunchy foods. And those are managable when he wears his dentures.

    There's got to be a better way than dentures or individual implants. We have heard of the lower "snap on's" but Nick is hesitant to try that.

    Anyway, I have no real answers for you. Just wanted to share that you are certainly NOT alone in this :)

    Terry
  • FunGuy
    FunGuy Member Posts: 20
    TerryV said:

    Nick too....
    Nick has both upper and lower dentures. His "toof" issues were not cancer/chemo/rads related. He had poor dental hygiene as a kid and complicated that with a family history of gum disease. By age 40, he had 6 teeth worth saving, so dentures were the logical "fix".

    Like all of you, he found that dentures hurt. They fit poorly and hit many tender spots. He also say the dentures feel like having a mouth full of marbles. He has developed a bad habit of going without dentures. But he has adapted. He eats everything except crispy, crunchy foods. And those are managable when he wears his dentures.

    There's got to be a better way than dentures or individual implants. We have heard of the lower "snap on's" but Nick is hesitant to try that.

    Anyway, I have no real answers for you. Just wanted to share that you are certainly NOT alone in this :)

    Terry

    Friday is Implant Day
    Well, the time has come and Friday @ 8:00 I'm going to have five implants drilled into my lower jaw. I'm not looking forward to it. I will not be "under" for this procedure but will take an Ativan pill 45 minutes before. I'm really hoping I'm extremely loopy and won't remember much.

    The Dr. has promised that this will be much less painful than all the teeth extractions I've gone through the past 12 months -- 13 teeth in all. Those were pretty painful afterward. Anyway, if you guys could send a few prayers my way that morning that would be great.

    -Paul