Category Archives: Patient Rights

Being (a) Patient: Progress Isn’t Always Pretty!

Five days from now,  I will go to my uber-talented prosthodontic clinician who will once again rebuild my much abused flipper.

What’s a flipper?  A flipper is a dental prosthesis that simulates teeth that are missing.  It’s used by damaged people like me and pint-sized beauty queens  who are in between their baby teeth and adult teeth.

I have not been able to wear my flipper for over a month, due to a complication with the augmentation bone graft, I had done in  September to restore the bone I lost when I fell.  Originally, my periodontist cut my flipper back to keep it away from the graft.  However, it was still cutting off the circulation to my gum.  So, I had to lose it to ensure the best possible result.

I have mixed feelings about wearing it again.  Physically, I am more comfortable without it.  It tastes like plastic.  It presses against my gum and hard palate all day.  It makes me gag.  It make me cough.  It makes me angry.  It reminds me to hold the handrail on stairs.  Emotionally though, it makes me feel safe.  It makes me feel like maybe people will think I just have adult braces.  It makes me feel less… vulnerable.  I don’t like to feel vulnerable.

I keep my top lip pulled down when talking to people.  When I laugh or even smile, my hand flies up to cover the gap left behind by my two missing front teeth.  I’ve realized since this has happened that a toothy grin can compensate for more than just physical insecurities though.  When you can’t flash a smile, tilt your head and toss your hair, your personality flaws become glaringly obvious.  When it comes to conversation, I’m not an artist.

I think, perhaps, writers are writers because it gives us a chance to express what we would have liked to have said in any given moment, if only we could have thought of it at the time.  If only…

I am determined to learn from this experience and be better for having gone through it.  I don’t know exactly what that looks like yet.  Habits form over decades; not all at once.  Change doesn’t happen all at once.  I hope that by the time this is all over that I can look back and see that I have taken one step at a time in the right direction.

Love and Many blessings to All,

Cynthia

justdragonfly

Being (a) Patient: The Long and Bumpy Road

When you have an injury or illness that requires a long plan of treatment, you’re probably going to hit the wall more than once.  At least that’s been my experience thus far.

I have been having one of those weeks where I was starting to feel like the 10 steps I went forward in May to get my smile back…well, I fell back seven.  When you have 4 doctors (or in my case dentists: a periodontist, a prosthodontist, an orthodontist and an oral surgeon,) they aren’t always going to agree on everything.  I also found out it would be a miracle if I don’t end up with any pink porcelain (which is used to simulate gum tissue when there has been bone and/or gum tissue loss.)  And some of the people who are closest to me are sick of hearing about my teeth after four plus months and think I should stop seeking out the holy grail of treatment plans and just get on with the fuckin’ work already.

Can’t really blame ‘em there.  I am sick of it too.  I would love to just get on with the treatment already but I am also terrified.  I have felt like I have been putting a puzzle together in the dark since I fell.  Whenever I think I have all the pieces together, a light flashes on just long enough to reveal that something isn’t quite right yet.

I have made progress for sure.  I managed to avoid the plates and screws that the residents at the hospital wanted to put in my jaw.  I found a great oral surgeon who set my jaw and saved the other three teeth; they wanted to pull in the hospital.  I nixed the treatment plan that would have left me an 8 tooth bridge from upper premolar to premolar, as well as, the douche-bag perio who said it was my only option.  Thankfully, I’ve found a skilled team who can deliver on keeping me in all separate teeth.

So, what’s the problem then, right?  Four millimeters is the problem… four fuckin’ millimeters of vertical bone loss above my missing central incisor (or right front tooth to you and me.)  Between my body growing it and the bone graft(s), I need to gain 4mm (and have plenty of gum tissue) in order to avoid pink porcelain.  Is pink porcelain that big a deal?  Well, when you have a high smile line or a somewhat gummy smile like I do, it’s going to show.  I keep flashing on an image of a youngish Wayne Gretzky with his pink-topped crowns.  I couldn’t figure out why his upper gum looked like it had a squiggly dark line running through it at the time.  Now, I know it was pink porcelain.

My prosthodontist is an artist and I am sure even if pink porcelain is required that I won’t look like an ice hockey-player by the time he is done but, you know, I also will do everything in my power to make sure I gain those four fucking millimeters!

What experiences have you had as a patient?  How did you overcome them?  Is there anything you wish you had done differently looking back now?

Love and blessings to all,

Cynthia

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justdragonfly

Being (a) Patient: Holding Out for a Hero

Anyone who knows me well, knows I have never been shy about saying that western allopathic medicine is good for putting people back together when they are broken, and for acute care when someone’s life is in danger, but when it comes to treating chronic conditions and disease…not so much.  I believe that if you are looking for someone to take care of your health, start by looking in a mirror.

I know that I am responsible for my own health.  I have studied nutrition, yoga and various wellness practices.  I walk regularly.  I meditate.  I eat a vegetarian whole foods diet.  Yada yada yada…When it comes to health and wellness, I was on it… and then I got broken.

After this accident, I was completely overwhelmed by how my mouth was going to be put back together.  I knew in my bones that the plan the hospital had come up with, wasn’t the way to go.  So, when I found the doctor who fixed my upper jaw without screws or plates, I was elated and tried to dump the responsibility for the rest of my care on him.  I asked him to put together a team for me to do my dental reconstruction.

Like most doctors would, he complied by finding specialists who he liked and were located in my geographic area.  The only problem was they weren’t right for my particular case.  The periodontist he referred me to had the chair-side manner of an icy, wet blanket.  (I suspect he was part reptile…)  He gave me only one option for a course of treatment that was totally unacceptable to me.  Shortly, before I left his office, he looked at the photos of my smile before the fall and coldly said, “You’re never going to look like that again.”

I left his office enraged and called the doctor who had referred me to this monster.  I won’t bore you with the dialogue but it boiled down to what the Hell was he thinking sending me to this douche bag? (of course, only in more polite terminology.)  After some back and forth, he said “You have to get a consensus.  You’re going to need to go do consults with several different specialists until you find a doctor you like and then pick the plan you like the best.”

He was right.  The punch in the gut I got that afternoon turned into a kick in the ass.  I realized I was being a baby.  I never really had dental work before or orthodontics ever.  My teeth were always straight and healthy.   Aside from a few fillings when I was a teen and getting my wisdom teeth pulled, I only went to the dentist for cleanings.  I let my fear and ignorance turn me into a helpless victim.  I wanted someone else to fix this problem and I just wanted to show up to wherever it was being performed.  I just wanted to wake up when it was all done with a beautiful smile again.  Reality called and reminded me that I am responsible for my own care.

So, I started doing my own research on NY periodontists and prosthodontists.  Then I began the expensive time-consuming process of being examined and doing initial consults with these fellows.  I have learned a lot about my condition in the past few weeks and the various ways to treat it.  I haven’t picked one yet but I have it narrowed down to three perios.  I still have to hear the third plan.  So far, I am happy to report that, they are much more acceptable than the initial prognosis that I was given in that first reptilian consult.  Also, the specialists I am considering working with now, all have experience working with people who were injured in accidents, as well as a good deal more compassion for what I have been through.  They actually all like the fact that I have been consulting with other people and have been becoming educated about the various processes to reconstruct my gum and fix my teeth.

The bottom line is we are all responsible for our own bodies, regardless of what our condition is and how much help we need to fix it.  Take your time, find the right people and the right course of action for you.  Learn as much as you can and be an active participant in your own treatment plan.  Don’t just be a patient, be your own hero!

Love and blessings to all,

Cynthia

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Know Your Rights in the Hospital: Urgent vs. Emergent Care

There are basically two types of scenarios when you have to go to the emergency room for trauma: 1) Emergent- where you are in some kind of danger and need an immediate procedure to be stabilized or 2) Urgent-you are going to need to do something relatively soon but you are not in immediate danger.

This is what I want you to always remember:  If it is urgent, not emergent, you can leave and get another opinion if you don’t feel comfortable.

When I was taken to the emergency room a month ago, I went in as a trauma patient.  I was admitted because they thought there might be something wrong with my spine and couldn’t get an MRI until the following Monday (the fall happened on a Saturday.)  Still serious, but not emergent, were the injuries to my mouth.  My jaw was fractured, a tooth was lost and several others were chipped or had moved, my nose was fractured.  (My wrist was also in a lot of pain but nobody was paying much attention to that at the time.)

From the second the oral maxillofacial surgery resident started talking to me, I got a bad vibe.  He wasn’t talking to me, so much as talking at me.  He was much more interested in explaining my injuries to a pretty intern than helping me figure out what needed to be done.  From the second he looked at the scan before he even looked in my mouth, he was talking about surgery.  He also refused to put my tooth back in that had been saved at the scene and stated coldly that he doubted that three of my other upper front teeth could be saved.  He started talking about incisions and plates but he had to send the photos to his chief who was off for the night and who would see me the next day.

Thankfully for me, the plastics team came to see me first the next morning.  They explained that they had looked at my scan and that while my jaw was fractured, it was still in position and could very well heal on its’ own without surgery.  This was very good news for an all-natural chick who would only have surgery if it was ABSOLUTLEY NECESSARY.  Then the oral surgery team came in headed by the chief (a four year resident) and the “charming” two-year resident I met the night before.  He painted a much different picture than the plastics team had just given me including dire predictions of future problems if he did not cut the insides of mouth open and install several plates and screws.   These scary warnings were directed mostly to my exhausted parents.

I asked who would perform the surgery, he said he would.  I asked if the attending surgeon (a seasoned and well-respected oral maxillofacial surgeon) could perform it.  He said, “No” and explained that the attending would only be in the room since this was a teaching hospital.  I asked if I could meet the attending.  He said not until after I consented to the surgery.  BIG Red Flag!

When I explained what Plastics had told me, he got pissed off and went to find them.  They all returned together and encircled my bed in the Trauma Unit taking turns pulling on my upper jaw.  The Oral Surgery Chief Resident would say he felt it moving.  Then the Plastics resident would say he didn’t.  Finally, I said I had enough and only one more doctor would get a pull on my jaw.  That’s when the Oral Surgery Chief Resident snapped at me, “Stop being demanding.   We are trying to help you.  You shouldn’t make any demands!”  I looked at him and said through my mangled teeth, “it’s my face.  I will make any demands I want.”  I had remembered something Dr. Christiane Northrup said on her radio show.  I am paraphrasing but it was something like, doctors work for you.  You are their boss and to remind them of that if necessary.

It’s hard to remember that when you have been through a trauma.  You are tired, scared, in pain and in my case mourning a lost tooth.  I was fortunate in my situation because shortly after the doctors left, my best friend, a medical malpractice attorney, came to visit me.   Once I told her what they said; she said we’ve got to get you out of here.  She said it was absolute bullshit that they told me that I couldn’t talk to the attending until after I gave consent.  Furthermore, a resident was not the optimal choice to operate on me if surgery was even necessary.  She explained the hospital I was in was good for trauma but that was about it and if the situation was no longer emergent then I needed to get out of there.

I was sure after I talked to her that I wanted to be released without the surgery but I was stuck until my spine was cleared.  Would you believe they made six different attempts in one day to get me to consent to surgery?  Even the anesthesiologist came in to get consent after I said no to three different people (twice to the guy who would have performed the surgery!)  It got to the point where I was afraid to sleep or take any pain medication because I feared they were trying to break me down.   I finally complained to the Nurse Manager and Hospital Administrator to get them to stop harassing me.

Thankfully, the next day the MRI was done.  My spine was fine and I was cleared to check out.  I was able to go home to finally sleep (and see my dog!)  Then a couple of days later, I met my current, excellent oral maxillofacial surgeon (vetted by my friend’s boss.)  He was shocked that they had done nothing in the hospital to stabilize my teeth.  He explained all the different ways to approach the situation.  Since my bones were in alignment despite the fracture, I opted to have my jaw braced and wired shut.  While he was doing that, he managed to save the three other teeth that were in question because “the blood flow was still good.”

I am so grateful to have had enough knowledge to realize that I didn’t need to stay in a situation that felt wrong.  I am also thankful to have a friend who backed me up and translated my suspicions into facts and helped me get to a better place.   Please know that you have options when it comes to your health.  Avoid making rash decisions.  Quiet down and listen to your heart if something doesn’t feel right and it is not emergent, move on!!

Love and blessings to all,

Cynthia

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