Questions Regarding Loss of Teeth, Loss of Bone, Dental Implants, and Dentures

[justdebb31]

Then, at the age of 28, I was diagnosed with osteomyelitis of the lower left mandible from an abscessed molar, which took more than a year to resolve.  Approximately 2-3 years after the bone infection, I had to have a benign tumor removed from my upper left gum that was so large, it almost made it clear to the right side of my face.  After fighting for my teeth for years, at 33, I was tired and chose to have all but 6 bottom teeth removed from my mouth and replaced with an upper denture and partial.

Over the years I have suffered from severe dry mouth, which has not responded to medications, the upper dentures do not stay in place the best, but the bottom partial, even having rings around two teeth to help hold them in, are almost worthless because they move around so much, I can hardly eat or chew anything.  Consequently, my diet consists of Ensure and oatmeal.

At the age of 41, it became obvious that I was going to have to loose the remaining lower teeth.  At this point in time, I no longer have private health insurance and have disability insurance.  Approximately 1.5 years ago, I was blessed to have a dental clinic for residents in my area that didn't charge a fee.  On my first visit, the dentist indicated there would be a great deal of work involved if I chose to save my teeth, which would probably not buy much more time with my teeth.  This did not surprise me and I actually agreed with her.  At that time, I advised her that I had a pending appointment with the oral surgeon who took marvelous care of me when I had the bone infection in my jaw because I wanted his opinion.  She told me that the clinic would be able to take care of all of my needs and suggested that implants might be my best option and to keep the appointment with this particular oral surgeon because he worked with the clinic.  During this visit, I noticed a look of surprise on her face when she was making a cast of my face.  When I asked her if there was something wrong, she told me that there wasn't but that she had to double check the cast because at first glance it didn't appear to be complete.  Unfortunately, it was a complete cast and I asked her what this meant.  She told me that there was substantial bone loss in my jaw, which was unusual for someone my age but not to worry, bone grafting was now being done to correct it if necessary.

When I went to see the oral surgeon, he insisted dental implants were my only option and that the bone loss was not unusual for someone with SjS, SLE, and RE, who had been on long term chemotherapeutic and steroidal medications.  He seemed fairly confident that the implants would take in my case, but told me my chance of rejection was higher than in a "normal" person.  In addition, he said I would never be a candidate for bone grafting due to my high risk of infection. 

In the meantime, I returned to the dental clinic where they decided to try some more conservative measures and relined the top denture, removed all but two teeth on the bottom so they could support a partial.  The top improved some for a few months, but the bottom is awful.  It cause extreme pain when I wear it for too long and is not any more conducive to eating.

While this may sound vain, I feel embarrassed for my children and try not to open my mouth very much because I don't want their friends to see my teeth moving around.  My face is sunken in and not shaped as it once was, which I am aware of, but don't see it as the worst of my ordeal.  I have seen other dentists about maybe pulling the last two teeth and replacing it with a full denture and two of them have said I don't have enough of a ridge in the back of my mouth to hold a denture.  Rarely do I feel sorry for myself and the health problems I have had, I feel the most pain for my family.  However, when it comes to the thought of the future and it being that I will have no teeth at all, it feels overwhelming to me. 

The oral surgeon is willing to try and attempt implants on the bottom, which is now against what the clinic believes is possible, and even the oral surgeon is not as confident about it succeeding as he was last year.  If I have them done with him, it will be nearly $10,000, which my family may be willing to pay, though I am not sure is the right thing to do.  My mother would be giving me money she has saved to retire, which I do not think I could take if there is a great likelihood it would not work anyhow.  She tells me, "everyone deserves teeth, Debbie." 

I simply wouldn't be able to put a value on what it would mean to me, if anyone has had any experience with their teeth.  There are doctors I have met that do not even know what Sjogren's Syndrome is, which is a lonely feeling.  Although I am a "newbie" to this community, I will do my best to share my experiences, strength and hope whenever possible.

Thank you for listening.  Best wishes to all of the members!   

[artistangie]

God bless you and your wise sweet mama, nothing to add but that 

[Ark mom]

Debbie, I am all teary eyed reading your story.  I'm so very sorry about your dental troubles.  I can relate about how pain and suffering inflicted upon on ourselves is nothing compared to how we feel when it affects our children.  You have come to the right place because we understand.  Most of us, if we have not experienced this problem yet, we will in the future.  Although I may not be able to guide you very much in your current quest, there are many here who can give their experiences. 

I am glad that you have joined the board.  Welcome! 

[Bucky]

Debbie,

If you put the word dentures in the search box to the top right of this page, it will take you to previous threads about it (5 pages worth!!  ).

Also, if you put dental implants in the search box - you should find information about that too (which actually, will probably be found in the dentures threads).

I have spent soooooo many hard earned dollars on my teeth - only to have problems, one after another.  Sigh!  Factor in the dry mouth of Sjogrens and it's a losing battle, IMHO (in my humble opinion). 

After years and years and years of dental visits - cavities, broken teeth, crowns, partials, paper thin teeth, painful infections, etc. I chose to have them all pulled and get dentures.  Expensive, yes - but not nearly as expensive as the constant repair that was attempted.  It reminds me of road construction.  They make patches here and there on the pavement - only to return a short while later to patch it again . . . and again . . . and again.  $$$$$ and more $$$$$

It's not the ideal route to wear dentures - as you should try and save your natural teeth.  But, in my case - I don't regret it one moment.  Gone are the dental visits, gone is the pain, gone are the infections.

In my case, I wouldn't even consider implants as the likelihood they would take and hold were slim to none.  My mother got them and they never worked for her.  The teeth that hold partials in take a beating too . . . been there, done that.  The bottom partial or denture is the hardest to stay in - maybe because that is where most of the biting, chewing, etc. takes place?  I'm sure the "ridge" we have, or don't have there, plays a major role too.

You can read all the stories from our members about their denture / dental journeys in the above site search.  The fact remains - with Sjogrens, you have dry mouth.  Dry mouth leads to more dental problems.  You just have to do what is right for you. 

Bucky

[quietdynamics]

I am trying to get my ducks in row to address the dental issues....

Debbie....have you contacted Dental Teaching Schools/Universities? or John Hopkins (John Hopkins has a Sjogrens Center in Bethesda Maryland)
This is the link for the Dentistry/Oral Surgery in Chicago/ John Hopkins
http://www.hopkinsmedicine.org/otolaryngology/specialty_areas/dentistry_oral_surgery/

I hope you can connect w/ Hopkins. Maybe your Mom can help with travel expenses; rather than the $10K, they probably have different financial plans, maybe income based, research...something. But, I am thinking they are the ones to contact.

All of my best to you...Please give them a call, if they say they cannot help...ask them for suggestions... and let us know how you make out.

[gurs]

Ive spent over $55,000 in the last 6-7 years on my teeth and its getting worse..losing bone, teeth now. My dentist also at first
recommended a dental implant, but after thinking about all the trouble and pain Im having now, any procedure just makes it worse.
Also, if the bones are bad, how it the heck is the implant adhered? no way? I can hardly chew on my left side befcause of missing teeth, but
thinking I may never replace them.....dont want a partial to deal with either? I guess if you can try ONE implant and see how it goes etc?
I wish I had an answer for you..maybe put a story out to your local news and some great dentist-oral surgeon will offer up his services?
I was thinking about starting a website for people to donate for me to try to save my teeth fund?? (ha ha) I cant afford anything now too.
Your local dental university might be the best option possibly? I have to look into this stuff as well.

Prayers are with you....I feel your pain.

Gursie

[slccom]

If you have osteomyletis, I'd do some research first. From what I know, I doubt that the implant would work.

Are you on a bone-strengthening drug like Fosamax or other drug? If so, absolutely do NOT get that done. You can end up losing your entire jaw, or a good portion of it. Look up "Foxamax" and "dental."

Sharon

[irish]

I am sorry that you are having such a time. I had a lot of problems and infections also and was so glad to have all my teeth pulled. My bottom plates don't stay in as well as the top ones but I just reglue them as needed. Make sure to run the denture under the water faucet after you uplace the adhesive on it. This helps the plate to stick better.

I am going to add that osteomylitis is a very serious problem. Since you have had your bout with it many of the bacteria have gotten more resistant to the antibiotics and it is harder than ever to get rid of.

People with sjogrens ofen have immune system disorders that can cause one to lack the ability to fight off infections as well as normal people. As an old retired registered nurse who saw a whole lot of osteomylitis in my early days of nursing, I would advise anyone with autoimmune disease to avoid the implants like the plague. If they don't cause problems that is great, but with our propensity for increased number of infections the chance of an osteo is something that I would just as soon pass up, thank your.

My dentist tried to sell me on the implants and thank goodness I had the ability to say no. Turns out I have low t-cells with my autoimmune issues and am a high risk for infection. Osteos can be life threatening.

I know that many people have a lot of problems keeping their dentures in, but I think that trying the different paste products help as does wetting the denture and the paste. Also, be aware that if a person uses too much paste they don't always stay in very good. Good luck. Try to think positive about dentures as having them sure saves money and infections. Irish

[CalvinWatterson]

Debbie sad to know your Sjogren's Syndrome 
But you should be proud to have such mother must say!! 
Was wondering why don't you have dental or other insurance, They don't pay whole fees but atleast you can have some amount from it.

[susanep]

I also had many teeth that kept getting infected so fast I couldn't believe it, but I too finally got tired of all the pain, and had my teeth all removed by an oral surgeon.

I have never ever regretted it for one minute. My upper denture stays in, and I don't have much problem with it, but do have more pain with the bottom one.

I do have to use the denture paste more on the bottom one.

irish, what kind of product do you find best for use with your dentures?

susanep

[gurs]

After reading this...bit into a tomato and my front lower tooth just broke right off...ughhhhh..so tired and upset. I had a cap on it.
Now what? Ive spent $60,000 in the last 6 years to have all my teeth done, and now im losing them left and right. The dentist is so worried because I would be able to do implants so now what? no money left to do anything. Now, my anxiety is off the charts and im flaring too.

Anxious to hear what needs to be done with this one. I need my front tooth for sure. This is crazy..we need to lobby for our health insurance to cover some of these dental expenses or something.

Oh well, waiting to hear from the dentist today. I feel bad for him too. He just looks at my mouth and I think I raise his BP a bit.

Gursie

[Cheryl]

Debbie,
I wonder if your oral surgeon and free clinic would be willing to try bone grafts to rebuild a lower ridge for you?  If it did work, you could wear your dentures.  It might also help your facial appearance.

I'm so sorry for your predicament.
Hugs,
Cheryl

[CalvinWatterson]

After reading this...bit into a tomato and my front lower tooth just broke right off...ughhhhh..so tired and upset. I had a cap on it.
Now what? Ive spent $60,000 in the last 6 years to have all my teeth done, and now im losing them left and right. The dentist is so worried because I would be able to do implants so now what? no money left to do anything. Now, my anxiety is off the charts and im flaring too.

Anxious to hear what needs to be done with this one. I need my front tooth for sure. This is crazy..we need to lobby for our health insurance to cover some of these dental expenses or something.

Oh well, waiting to hear from the dentist today. I feel bad for him too. He just looks at my mouth and I think I raise his BP a bit.

Gursie

OMG spent $60,000 in the last 6 years..... that's really a big amount, and still not having satisfaction of proper treatment...
Well I know some dentist with affordable dental implant strating from $1999 per implant, if its really affordable to you then just let me know!!

[gurs]

I had my entire mouth redone--all teeth capped, etc. My dentist also gave me some huge discounts? dental prices out of control for everyone.
I learned with having bad teeth, better to find a great dentist that knows what the heck is going on..guess we pay more for it. The sicker I get from the SS/Lupus, the more dental issues come up. Also, being on steriods and not having any estrogen to help with my bones are a big concern. I dont think I can even do an implant because I have bone issues etc and I can just imagine what will happen after? I would also
just not go to anyone to do it. The sjogrens mouth is an entire different ballgame and you need a great dentist. Not sure how I will pay for any of this now..out of funds? Im sure this will also start happening on the rest of my teeth as well..the decay is just too great, and Im tired of people telling me to floss, rinse, etc. I do at least 5 rinses, special toothpastes, floss, etc.even in the middle of the night.....nothing helps.
We shall see what happens this afternoon.....im literally sick to my stomach thinking about it.. ha ha
I know so many others of us in same boat. This should be covered as medical...right?

Gursie