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Author Topic: What Doesn't Kill Us.... (At my wit's end)  (Read 5142 times)

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Offline Solo_LTSurvivor

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What Doesn't Kill Us.... (At my wit's end)
« on: August 03, 2008, 08:41:10 PM »
The basics:

I am a long-term survivor who probably seroconverted in 1983, but got tested around 1997 primarily to confirm what I already knew.  I have been quite fortunate in that I have basically been in fairly decent health, with the exception of a minor shingles outbreak in 1998, crypto in 2000, and later having PCP in 2002 that almost sent me to the other side.  I found out in Spring 2007 that I had contracted HCV (genotype-1) probably in Fall 2006.

I live in a major metropolitan city and have access to what I feel is quality healthcare, so I thought it would be best to address any and all issues regarding my health before embarking upon HCV treatment.

I had a tooth which had broken off at the gum because the filling in it had basically disintegrated.  So the dentist was my first stop on ensuring I wasn't about to fall apart.  I didn't have really problematic teeth as I had lot of restorative work done in the past when I could afford it or my insurance paid for it.  As my luck would have it, I ended up having to get it extracted because it became unbearably painful.

Without going into all the details, the dentist and I didn't see eye to eye after this emergency extraction, so I started seeing someone else at the same clinic.  I was given two options by the second dentist: (1) redo all of the past work or (2) remove the teeth and have a complete denture done.  Because I know they were slow as molasses when it came to seeing patients, I elected to go with the second choice since I did not want to deal with (possible) HCV treatment side-effects and dental treatment lasting for an eternity because even though I don't fear dentists, I just did not want to spend years having piecemeal work done.

I made the worst mistake in my life as I experienced nothing but complication after complication once I had all of the teeth extracted.  Each and every time I returned for follow ups, I was made to feel like an idiot who wasn't giving myself a chance to adjust, despite the fact I knew something wasn't right.  I basically was blown off whenever I voiced my concerns.

To make a long story short, I got a second opinion where it was confirmed I needed to seek surgery to repair the issue I was complaining about.  I decide to seek further treatment at a local dental school since I felt I could get access to any type of treatment I might need as opposed to running all over town.  (I waited months, suffering, until I felt that Medicaid would pay for the necessary exams.)

In a nutshell I have learned that you are screwed if you have Medicare and Medicaid when it comes to dental treatment.
My issue is that the majority of practitioners tend to place everyone in the same category and will not acknowledge the fact that we are all different and what is right for one person might not be fine for someone else.  And the government is so out of touch.  Medicare does not pay for any dental treatment, period.  That is so funny and ironic because the clinic made a killing off me billing office visits to Medicare every time I had to go in to see the dentist.  And I saw the dentist more in 6 months than I have in my entire life, lol.  Mind you, they were also getting paid by Medicaid for whatever they billed for the dental work they performed, as well.

Upon seeking treatment at the dental school, and explaining why I was there, I was told that Medicaid only pays for a complete denture once every FIVE (5) years and their hands were tied. 

To them, it didn't matter that I cannot wear the awful problematic denture made for me.  They recommended that I go back to the initial clinic since they had originally gotten PAID for doing the work.  That is if I didn't come out of my own pocket to correct things or just accept what was given to me. 

* Never mind that I was rapidly losing weight because I can no longer eat.
* Or that I now had the look that people think that all AIDS patients have because my face is sunken in beyond belief.
* Or even worse that I have experienced bizarre complication after complication that never used to happen previously until I sat in that dental chair.

It is extremely frustrating to have so-called professionals look at you like you're an idiot when you try to explain to them you never had problems breathing in the past -- until having teeth extracted and having them tell you that it is normal because they don't know what the hell is going on and merely want to blow you off.  They don't care that I haven't really had a life outside of medical appointments and am basically a hermit since I don't feel comfortable going out in public, unless absolutely necessary.

I am aware that there are many states in which pozers don't have access to any type of dental care, so I am fortunate in that respect.  But if I am not getting adequate treatment from one place, why on earth should I be forced to continue treatment with someone I don't trust?  And why should I be forced to endure trying to work with something for 5 years that's not doing the job, period?

The days I was hospitalized with the PCP was a walk in the park compared to the misery I have experienced since taking that dentist's advice.  Teeth don't grow back.  And I have dealt with a year of nonstop suffering because I thought I made the right decision based upon the information given to me. 

It's pathetic they all patronize you and politely tell you that you just have to accept it because "that's the way it is."  I only wish once they could walk in my shoes for 24 hours and they would be banging their heads against the wall trying to figure out how in the hell they could fix such a fiasco since they would realize exactly how BAD it was.

(And I did try to go elsewhere before I had the emergency extraction but was told that Medicaid wouldn't pay for the necessary x-rays and exams so soon and I basically felt TRAPPED into having to do the entire treatment at the first clinic.)
don't equate intelligence with lack of masculinity
Jim Phelps, Mission Impossible

Seroconverted: Early 80s
Tested & confirmed what I already knew: early 90s

Current regimen: Atripla. 
Last regimen:  Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky ::))
Past regimens
Fun stuff (in the past):  HAV/HBV, crypto, shingles, AIDS, PCP

Jan 2012: 818/21%
Apr 2012: 964/22%
Jul. 2012: 890/21%
Oct. 2012: 920/23%

Still UD after all these years

Offline aztecan

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  • 32 years positive, 60 years a pain in the butt
Re: What Doesn't Kill Us.... (At my wit's end)
« Reply #1 on: August 03, 2008, 11:38:54 PM »
Hey Solo,

Wow, talk about a horror story!

Dental problems are among the most painful things to endure. You are right, it is one of the most overlooked and underfunded things we deal with.

I hope you find some solution to this - other than waiting five years for a new set of dentures.

Keep us posted on how things go.


"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline rondrond

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  • 22 years HIV+ yet a yard could be the death of me
Re: What Doesn't Kill Us.... (At my wit's end)
« Reply #2 on: August 04, 2008, 01:07:23 AM »
Hi Solo,

Quite an adventure. I'm sorry you are going through this.

You got a start on your dental procedures but can't get any follow-up.

I understand being on 'their' time schedule. It's a ' now or never' scenario which doesn't leave much time for being able to think things through.
'Do it now or else...'

I went in for a cleaning 4 months ago and wound up having one tooth extracted...same as you, a back molar was loose, food/bacteria got underneath, caused an infection that ate away the bone....

Called to have the deep cleaning done which is supposed to prevent this from happening again, and I have been put off for 4 months now....

Just as you said...they tell you their hands are tied, nothing they can do....then..complain to the right person and suddenly doors open and things get done....

I wish I could tell you how to get through the 'red tape'....I don't know, sometimes I just get lucky...

I feel your frustration and wish I could be of more help...
"I'm not done yet"....Glen Campbell

"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Aug09 Diagnosed: COPD

Tcells 700

Offline AlanBama

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Re: What Doesn't Kill Us.... (At my wit's end)
« Reply #3 on: August 04, 2008, 05:20:12 PM »
Hey Solo,

Your story tugged at my heatstrings, because dental issues are a big concern for me as well.   I have a "mercedes in my mouth", basically a ton of dental work done.   So you reach a point where:  do I continue to do more work?  or have them pulled?   Thank God I have a Ryan White dental clinic as part of my HIV clinic, and while we have to wait forever on getting things done, at least it's usually done RIGHT.

Certain things, they don't do.   Like root canals.   I have a tooth (lucky #13 in fact) that I am told needs a root canal.  I will have to go to the University's dental school to do this.  They sent the referral over in May.   So I called my clinic and said "Ok if I go and have this done, how long is it going to be before I can get in to see you and begin the process of getting a crown?"    The earliest they could see me is in Sept.!   Glad I asked.....I am holding off on getting the root canal untiil the end of this month (why go around with a bunch of dental packing in my tooth, making it difficult to eat, care for them, etc) when it will be 'closer' to my actual dental appointment.

Good luck with all your issues, and please let us know how you're doing.   Your story has convinced me to try to "hang onto" the teeth I have as long as I can.

"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline BT65

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Re: What Doesn't Kill Us.... (At my wit's end)
« Reply #4 on: August 04, 2008, 06:24:17 PM »
I've had dentures since '89.  Well, top ones anyway.  They never could get the bottom ones right, so I've had nothing (nada) on the bottom for 20 years.  My teeth were rotted though, and I had horrible gums.  They didn't have much of a choice. 

Good luck.

Edited to add:  I can eat almost anything I want, unless it's like really thick and hard (I can't bite into an apple, but I can eat it if it's peeled and chopped).
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline Solo_LTSurvivor

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Re: What Doesn't Kill Us.... (At my wit's end)
« Reply #5 on: August 04, 2008, 06:58:27 PM »
First of all, let me say happy belated birthday, Mark.  Thanks to you, Ronnie, and everyone for taking the time to write such nice responses.

I really needed to vent (and just be heard) because I am tired of feeling like I am about to slip off the end of the rope and into the fire.

I will say that I am very thankful that I am still alive after all these years of dealing with this virus.  I also am aware that my issues are small potatoes compared to some of the things that many others have dealt with.

I also know that sometimes we have to experience the bad in order to evolve and be able to appreciate when life goes smoothly.  Everything happens for a reason.  I came to grips with that fact after my unexpected bout with PCP and know that it was a sign telling my ass I needed to slow down and stop letting everything get me all worked up. 

The PCP knocked me on my ass just as I had just started to deal with the system after working as long as I could.  I had to learn the ropes on my own when it came to filing for SSDI and other entitlements as no one in the ASO's I dealt with seemed to be helpful and want to do their jobs.  Ronnie mentioned the red tape... I think when it came to me I encountered burgundy, scarlet, and every shade of red known to man.  In the end it was a learning experience.

And this whole dental bull$h!t has been yet another learning experience. 

As I have reflected over the entire mess, I came to realize that as unfair as it might sound, I was a pawn to generate revenue.  Initially when I sought the treatment for that one tooth, it was amazing how I was given limited options that eventually morphed into the removal of 15 teeth. 

Thinking about it all, there was no money in fixing one tooth so why not tell me that things were actually worse than they are and provide virtually no options?  Who am I to know since I am not a dental expert?  We have been conditioned to trust our healthcare providers and take their word as gospel most of the time. 

This is relatively easy to pull off if you work with patients who are dependent upon assistance and the system.  You already know they have limited options when it comes to finding practitioners who will even accept them and provide treatment since no one really wants to deal with not getting paid what they feel they are worth.  So why not milk the system?  The patient gets the necessary treatment, and you get loads of money.  What's wrong with this picture?  Nothing, as long as everything goes well.  What happens when you encounter that small percentage of patients where everything goes crazy?  You wind up with a someone like me who suffers in the end.

As Ronnie said, we often make hasty decisions under duress.  As I was more focused on attacking the latest health issue, I made my decision based upon the smidgen of info given.  I think many people would've assumed that action needed to be taken if they had also been told that past certain procedures had been done rather shoddy.  And being faced with undergoing a lengthy process to fix things, most people would elect for the shortest course, if possible.

Note to Betty:  I know there are many people out there who have dentures that have never had problems with them at all.  One of the main reasons I elected to go that route was that I have a friend who had both FULL uppers and lowers made over 30 years ago has and never had the first problem.  And dentures weren't far from being wooden George Washington teeth in those days, lol.  If I wasn't under the impression that I was beyond hope as I was led to believe, I would've kept my teeth.  Like Alan said, I had a semi in my mouth and never really experienced problems -- but since I felt the dentist may have been able to see something I wasn't aware of... well, it helped sway me.  And knowing I really couldn't just pick any dentist down the line for second, third, or fiftieth opinions since I knew Medicaid would be strict in paying for anything if I had it done before their approved guidelines --- I trusted what I was told.  I wanted to take care of the problem.

Again I really feel that I was basically a cash cow.  Think about it.  If they performed the (emergency) extraction and replaced two crowns, they would've probably maxed out around $2000 on me.  But they were able to get probably $1000 for the denture, and $320 each office visit + whatever they charged Medicaid for the one or two adjustments I got until I realized I needed to go somewhere else.  I can only imagine how much Medicare and Medicaid paid them on my behalf.  Oh well, I can't go back nor I can't let it get the best of me.  I can only try to fight until I am satisfied.

Believe me, if I am ever able to resolve this mess I plan to speak out and do whatever I can within my power to ensure that no one else goes through a similar experience.  It is beyond time to bring an end to this one size fits all, cattle call bull treatment -- and for us to be treated as more than just another number in the waiting room!  We are all people who deserve to be treated as human beings and respected.

Thanks again for allowing me to vent.

One final note:  I don't want anyone to think that I am a staunch conspiracy theory supporter.  I recall in 2004, I was living in another state and needed to have a cavity taken care of.  After making countless calls, I was finally referred to a dentist whom I was told accepted that particular state's medicaid.  I asked them when I made the appointment if they would take medicaid and they told me yes.  Upon getting there, the dentist made me write a check in the chair BEFORE doing anything to me.  He explained that many people didn't like to deal with medicaid because they didn't pay anything and also because they were so slow to pay up.  I couldn't really get up and walk out because the tooth was killing me, so I wrote the check.

Something really needs to be done so we don't wait until we are virtually beyond hope when it comes to seeking dental treatment -- and dentists need to realize that since care is not readily accessible to everyone, they need to do something about trying to cut down on the time it takes for a patient to get in to see someone. 

« Last Edit: August 04, 2008, 07:33:51 PM by Solo_LTSurvivor »
don't equate intelligence with lack of masculinity
Jim Phelps, Mission Impossible

Seroconverted: Early 80s
Tested & confirmed what I already knew: early 90s

Current regimen: Atripla. 
Last regimen:  Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky ::))
Past regimens
Fun stuff (in the past):  HAV/HBV, crypto, shingles, AIDS, PCP

Jan 2012: 818/21%
Apr 2012: 964/22%
Jul. 2012: 890/21%
Oct. 2012: 920/23%

Still UD after all these years


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