Apr 26, 2012

Post-Surgical Cases of POTS: Could Anesthesia be to Blame?



September 10, 2007 was the day my life changed for the worse. I am not too good at sugar-coating my story and saying that chronic illness has made me more resilient and empathetic. Though it has, I have always had a good amount of empathy and have been a kind person at heart. I am still not sure why this all had to happen to me or any of the other wonderful people I've met along this journey. I certainly don't think any of us deserve this or would wish this illness upon our worst enemy.

The day I had my wisdom teeth pulled in a "routine emergency extraction," due to an infected wisdom tooth on the lower left quadrant of my mouth, I was blissfully unaware of my hypermobile joints from Ehlers-Danlos Syndrome, but I was well-aware of my extreme sensitivity to meds. Before that fateful day the only meds I had ever taken were Tylenol and antibiotics (many of which I am allergic to). My mom and I both made sure to inform the oral surgeon about my multiple antibiotic allergies and that I did not want to take a bunch of strong, weird drugs during or after the surgery. In fact, I didn't even want to be knocked out for the surgery. I was terrified of being put under any kind of sedation and adamantly against it. I asked the doctor if they could simply numb me up good with a local anesthetic and let me listen to my iPod and he replied, "Absolutely not. Everyone is put under into a very light sleep."

He also warned me that I would probably end up with TMJ after the surgery. At the time I had no idea what TMJ was or the drastic negative implications those three letters would have on my life. So I signed my rights and life away on the dotted line and hoped they could cure the infection by pulling the tooth. The oral surgeon also insisted on pulling the other three at the same time (although they were not even infected). I am not sure if this was for his convenience (and profit) or mine...

The American Dental Association no longer recommends the prophylactic removal of wisdom teeth, whether they are impacted or not, because they cannot justify the risks of an often unnecessary surgical procedure. Wisdom teeth removal has nearly become a right of passage in American culture and most people come through it just fine. However, after swapping stories with several other POTS patients these past few years, we were all stunned to find that many of us share a commonality: our symptoms began after having our wisdom teeth pulled. Purely coincidental? Possibly. Purely uncanny? Indeed. Purely logical? Maybe...

Flash back to that afternoon in September '07. As I was leaned back in the chair being prepped for oral surgery it never dawned on me to ask what exactly it was that they were injecting into my arm, but seconds before I was knocked out I was still cognizant enough to ask the surgeon where my anesthesiologist was... His reply: "I will be your anesthesiologist." That made me uneasy (for a few seconds). For charging nearly four grand to pull a few teeth you would think he could have afforded an anesthesiologist. My hesitance quickly subsided with the induced slumber and the next thing I knew I awoke in the same chair about an hour later with a mouth full of gauze. Feeling no pain, I was driven home by family shortly thereafter and optimistic that my jaw pain would soon resolve for good.

During the next few days of downtime I started feeling markedly sicker. My heart was pounding and I was too weak to move myself from one chair to the other in the living room. I was even having a hard time breathing. Several subsequent ER visits ensued and the doctors didn't find much wrong except mild dehydration and resting tachycardia. I had never experienced any heart problems in my life I was told it was probably just stress and to consume more fluids and give myself more time to recover from the wisdom teeth surgery. A few more months of this torture ensued and my PCP finally referred me to a cardiologist after listening to my heart with a stethoscope. The cardiologist then referred me to an electrophysiologist who was immediately concerned about autonomic dysfunction, what I would later learn to be a debilitating condition called POTS.

To make matters worse in the months following the wisdom teeth extraction, I was taking exorbitant amounts of Tylenol and ibuprofen and wearing a thick splint in my mouth to cope with the intense muscle spasm pain that was happening on the sides and back of my head and neck. My jaw joints were making all sorts of awful noises and I couldn't open my mouth wide enough to eat many foods. The jaw specialist I saw advised me not to talk or chew and prescribed a muscle relaxant which did very little to alleviate the pain either. I endured countless sleepless nights, one particularly painful stretch I didn't get a wink of sleep for four days straight. I was a walking zombie in unbearable pain no one could seem to fix, and the resultant lack of sleep certainly wasn't making my tachycardia any better. I was driving my family nuts and I couldn't keep up with school at all. Not only were my thoughts clouded, I was too weak to do anything and I was scared that I was dying since no one could seem to figure this mysterious illness out.

It was my senior year of college and I struggled to make it to class. I had to be driven from building to building on my small college campus because I was too weak to walk from the racing heart. I saw countless specialists: a cardiologist, an electrophysiologist, a pulmonologist, an endocrinologist, a TMJ specialist, a neurologist, a sleep medicine specialist, a massage therapist, an acupuncturist and finally a chiropractor where I did finally experience some relief from the head and neck pain through atlas adjustments. The electrophysiologist put me on beta blockers which controlled my heart rate but did not make me feel much better.

Until a gastroenterologist tried to schedule me for an endoscopy which would have required conscious sedation (Fentanyl and Versed, administered intravenously) earlier this year, I had never again worried about being knocked out. But then I remembered that my wisdom teeth surgery didn't go so well and it finally dawned on me that I should finally get the records from my wisdom teeth surgery back in 2007. After all, I have all my other old medical records now, so why not my "dental" records?

Obtaining them proved to be a bit of a challenge. Although the oral surgeon who operated on me is unfortunately still in business, the office lady was very reluctant to release my records to me. She wanted to know exactly what I wanted and why I wanted them. I told her I wanted everything in my file for my personal records, that I was simply collecting everything from every doctor or dentist I had ever seen. About a week later my records were ready and I paid my $13 fee in exchange for information that shocked and appalled me. Upon looking at the surgeon's handwritten records, I discovered that I was administered what he referred to as a "mild sedative" consisting of Propofol (that's right, the Michael Jackson death drug that should only be administered in hospitals), Reglan (a dangerous prokinetic drug with horrible side effects including autonomic nervous system problems), Fentanyl (a short-acting but powerful painkiller), Versed (milk of amnesia) and Halcion (a sedative). You counted right. That's a cocktail of five different meds administered intravenously. I would not consider any of these drugs to be "mild" or "light." Maybe mild to a crack addict. Not to someone who was a medication virgin.

To my other POTS friends who have had their wisdom teeth pulled: I see an obvious correlation between wisdom teeth extraction and TMJ/headaches, but do you think there is a correlation between POTS and whatever sedation you were given during surgery rather than the trauma of the surgery itself? Or perhaps coupled with the surgical trauma? I strongly suspect there is some sort of link here related specifically to the drugs I was given that day. Problem is, which drug could have been the culprit? Reglan and Propofol are the most likely suspects, but now I may never know which (if any) is to blame. I encourage you to obtain your medical records from wisdom teeth extractions and find out what kind of sedation you were given. The same applies to any other surgical procedures where sedation was administered.

The other day my mom informed me that our neighbor's daughter had an infected wisdom tooth and that she was scheduled to have her's pulled by the same surgeon I had. In a BAD TMJ flareup myself, I cried and felt an overwhelming sense of fear come over me for the young seventeen-year-old girl who is roughly the same height and weight that I am. My mom and I were both compelled to speak up and warn them about this doctor and his practices. After hearing my story, her dad took her to a different surgeon who only removed the one infected tooth under local anesthetic, leaving the other three teeth (and her health!) in tact. Luckily she made it through the procedure and recovery period just fine and I am hoping that by speaking up I may have helped save her from ending up like I did.

The worst part of all of this still is, I knew that I was totally fine and healthy until the day I had my wisdom teeth pulled. I am angry at the oral surgeon who ruined my life, although I realize it was unintentional. He has no clue what happened to me after his surgery. I have half a mind to march into his office, give him my sob story and demand that he modify his risky anesthetic practices. At this point an apology wouldn't bring me much satisfaction. I want him to change his potentially risky anesthesia practices for the sake of his future patients.

Apr 17, 2012

Milkshakes and Muscle Relaxants

That about sums up my day...not as fun and 'relaxing' as one might assume by the title. Although some new health problems have cropped up this year, I felt like I finally had a handle on my intense TMJ headaches. In fact, I thought I was out of the woods in that department. No such luck. I haven't had a doozy of a headache like this since last year!

Not sure why I have one right now...except for the fact that I am almost positive that some higher power is playing a sick cosmic joke on me...it sure seems like I'm being punished for doing the things I love most: eating and talking. Which I have to refrain from entirely when I get a TMJ headache like this. And forget trying to have a social life or be successful at any sort of job. As if POTS weren't enough to deal with on it's own...thanks Universe for being such a sadistic jerk. One major, debilitating health problem is more than enough to deal with and already more than I can handle.



There's no real rhyme or reason to what brought this headache on (no excessive talking or chewing lately) but it started around the same time last year and lasted for MONTHS. Last year I saw a neurologist who suggested a misdiagnosis of 'new daily persistent headache syndrome' without so much as feeling the giant muscle knots that feel like marble-sized cysts sitting right beneath my scalp. My mom can feel them, my friend can feel them, I can feel them. All with our bare, untrained hands. It's creepy. Nobody else has muscle knots like that behind their ears and on the sides of their heads. These knots are movable, get bigger and smaller, and are somewhat relieved by massage. Feels like awful menstrual cramps in my head. When someone presses directly on a knot I get goosebumps on my arms from the intensity of the pain. And that's saying a lot considering I have a high pain tolerance (I didn't even take any pain meds after returning home from my appendectomy).

The amount of vigorous massage it would take to break these suckers up is unbelievable. And frankly the flexeril has done nothing but relax all my other muscles and not touch the ones on the sides of my head. My primary care provider informed me that there is really "no good muscle relaxant for those small muscle groups." Fan-freaking-tastic. The only thing I have yet to try to remedy these awful muscle cramps is botox.

However once I had gotten my headaches under control I didn't think I would have to deal with this intense pain ever again. I should have known better. I am afraid that if I go in and get botox in these muscles now that it may freeze them in their knotted position and leave me in pain for the three months that the botox lasts. No doctor seems to know much at all about botox for TMJ and they sure as heck do not know how botox works in an EDS patient.

To say I'm annoyed right now would be an extreme understatement. Narcotic painkillers don't even touch this and the muscle relaxants don't do much either. Wish I knew someone who was confident enough to try to put my jaw back into place or break up the muscle knots somehow. Desperation is setting in. I am scared that it is going to be a repeat of last year with a months-long headache. The majority of my spring and summer last year was spent in excruciating pain thanks to these stupid muscle knots. Is this common in EDS? Why do I only get them around my jaw? And most importantly, how do I get rid of them? Any suggestions?

Keep Calm and Defy Gravity

Apr 10, 2012

People Suck Sometimes

Whether it's my able-bodied uncle giving me his idea of a "pep talk" by dispensing trite advice: "you are a smart girl, you can do anything you put your mind to, and you wouldn't want to live life from a chair!" (As if anybody has a choice or really aspires to live their life from a chair in the first place...) Ah, the mind over matter speech. If only it were that simple... If only my mind were able to cure my physical illness...

Or my therapist saying that having to go to the doctor every week is "no kind of life," I have come to realize recently that even seemingly well-intentioned people sure do pass judgment on others a lot. I am probably even guilty of that myself every once in awhile. It's one thing to have a thought pop into your head and keep it to yourself but quite another to impose your potentially offensive point of view onto someone else. Yet I am sure that neither one of these people meant to offend me. Which hearkens back to the same question I have asked myself before: am I just overly-sensitive? Or does everyone just need to take care to be more politically correct when it comes to their interactions with the chronically ill?

My skin cannot get much thicker. I am sensitive by nature but have learned to let a lot of things just "roll off" these past few years that would have previously really upset me. Today's discovery of the Facebook group openly discriminating against the disabled really left me reeling. It is amazing to me how people can get away with hate speech like that at this time in history. The following cartoon was posted on their group page and I found myself studying it for quite awhile, not able to uncover a single ounce of humor in it:



I certainly do not find it amusing and do not appreciate being given the label "pampered disabled." If the cartoonist's idea of being "pampered" is not making enough to live on, not being able to travel, not being able to be physically active and not being able to lead normal lives, then call us "pampered." Surely we must be "pampered" by being granted access to basic services through closer parking spaces. Surely that evens the score and levels the playing field among the able-bodied and the disabled. I believe in free speech as much as the next person, but I do not believe in poking fun at or disrespecting people in a public forum, especially the most marginalized groups of society, or "mutants" as a particularly ignorant and mean-spirited member of the Facebook group referred to all disabled people as. It is disgusting to me how sinister and overtly hateful some people can be. Days like today I am even more thankful to have compassionate friends on my side who are genuinely good people. You know who you are.

Hateful, Hurtful Words NEED to Stop!

I'm soooooooooooo sick of sociopathic bullies like the lady who wrote the following on her Facebook group page entitled, 'group to revoke handicapped parking permits:'

"Stop treating people differently based on their physical capabilities, that's what they say, but it's all lipservice! As soon as one of those handicapped people wants to park a car they don't want to be treated 'like everybody else' anymore. Well, here at the group to revoke handicapped parking permits we say: 'May every man, woman, child, and retard, be treated equally.'



Do they really need it? If they're so messed up they can't drive, then why doesn't the person they're with just drop them off and find a f#@*&!^ spot? If they are able to drive, but use a wheelchair then there's absolutely no need for a close spot- they're on wheels, a conveyance that's gonna get them there easily and faster anyway. Now for those who are just so weak and tired that they aren't able to drive and have too much pride to get in a wheel chair- I say stay home! You've probably got somebody catering to your every need there, too! Why do you feel you need to get that kind of attention when you leave the house too?
Now there is new category of 'handicapped' people: the grossly, morbidly, obese. Now with this I vehemently disagree. Isn't it possible that if you parked further out and walked to your destination you would burn a few calories and lose some weight, thereby negating the need for the 'fatticapped' parking in the first place?



FIGHT DISCRIMINATION!


Actions to take to show your support:

1- get out there and send in a photograph of yourself 'illegally' parking in a handicapped spot, then post it accordingly;

2- steal a handicapped placard from a car;

3- remove any 'handicapped parking only' sign you possibly can; and, finally,

4- flip off handicapped people in the name of equality!"


Let's deconstruct her argument for a minute, shall we? According to this woman's logic the handicapped don't deserve to have a place in society or to even show our faces out in public at a grocery store. Sociopaths like her embody everything that's wrong with the world today. It was all I could do not to stoop to her level and call her hurtful names. Instead I sent her a message with a link to my blog post about my personal experience using a handicapped parking sticker. Maybe it will inspire her to put herself in someone else's shoes for a change...