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.

16 comments:

  1. Wow! I think you should write a letter - that is a crazy cocktail of drugs! I know that "trauma" is a cause of POTS, and surgery is included in that definition, my spinal surgery started all my health issues at the age of 21, I was totally healthy before hand except for Raynauds. The GI symptoms started then, and then POTS came on after taking weight training (not weight loss) supplements with ephedrine (unknowingly harmful, bought them at GNC) for 4 days. I think chemicals/medications and trauma have a HUGE role to play in triggering POTS, it would be interesting to survey patients and see who else had this happen.
    I'm sorry this happened to you. Thank you for sharing your story.
    Claire

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  2. Thank you for sharing this info Claire. So sorry to hear about the spinal surgery and the ephedrine triggering your health problems. It seems so many things are more dangerous than we as consumers realize!

    Thanks to your idea, I put a poll on the sidebar of this blog to survey readers and see what triggered their POTS. Will be interesting to see if there's a trend or not...

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    1. I would like to participate in the survey; but, I am not finding a side bar or poll option on your blog.

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  3. I am sorry this happened. My symptoms started about four months after I got my teeth out, however I had a bad concussion in between which is what we think truly caused the onset. I never thought about the surgery. My friend with POTS got hers due go anesthesia, so you are onto something. Also, Reglan was likely not the culprit. I take reglan orally, or used to, for stomach issues related to POTS. However, after three months there is a small chance it can cross the blood-brain barrier and cause CNS side effects. It is a med not to mess with, though. I don't know the difference between it orally vs IV either. I am glad you are taking charge of your health. This is not an easy road for any of us.

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  4. Very interesting Chelsea. I know head injuries of any sort can definitely trigger residual health issues. It is interesting that your friend's was also triggered by anesthesia! I wonder if we were given any of the same anesthesia meds...

    Taking charge of my health has been a full time job. But I am finally doing better and getting a handle on things. And I am a much more savvy, discerning patient now than I was back then!

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  5. i had my wisdom teeth removed last year and my life also has changed for the worse no on understands how i feel i lost everything my friends, boyfriend my motivation. can you help me

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    1. Hi Caitlin, I'm very sorry to hear that. Have you been seen by a doctor or cardiologist since the surgery? If not, that is where I would start! In the meantime, focus on your nutrition, hydration and relaxing your muscles through things like massage. But it sounds like you definitely need a full medical workup to determine what's going on with you after the surgery.

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    muscle spasms after back surgery

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  7. I'm sorry this happened to you. I've had pots for several years now, although I had a slow gradual onset not brought on by anything I've been able to identify. I am getting all 4 wisdom teeth out in three weeks, just gathering my info as usual to help the dr get me through the procedures as I usually do since I've had pots (I've had 3 surgeries and half a dozen scopes in which I've been sedated since developing pots and all have gone well when I've had proper care for reducing symptoms during the procedures such as extra fluids and nausea meds). Although I did wasn't to point out, your description of the sedation technique, drugs used and procedure is all typical practice. Also, since your tooth was infected, local anesthetic was likely to not work as well as it should and may have been unbearable for you, also, just in my opinion, it doesn't seem very likely that the procedure or sedation caused pots but it could be much more likely that the infection itself damaged the ANS. Again I'm very sorry this happened to you all the same, pots SUCKS, and I wish you the best

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    1. Nicole that's a very interesting theory and no doubt there are many post-viral cases triggered by an infection so that theory definitely holds some validity! I am hoping that your surgery went very well, sounds like you're a seasoned pro with procedures by now and so glad you're communicating your health needs to your doctors before any surgeries/procedures! It's so important to be our own best health advocates!

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  8. Mine a long standing dysautonomia, cardiac dysautonomia started after a GI surgery, increased after a thyroid surgery, and after surgery for leg fracture developed orthostatic intolerance - NCS. Unfortunately dysautonomia diagnosed very much later after all these surgery. So what can be the cause than general anasthesia ??

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  9. I first had cardiac dysautonomia after my first surgery (GI)in 1982. Then after my second surgery(thyroid) in 1996, cardiac dysautonomia became very severe.Then after my 3rd surgery, leg fracture, orthostatic intolerance also set. But unfortunately only 6 months back my dysautonomia diagnosed.So other than general anasthesia what may be the cause for my dysautonomia??

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  10. There are many different underlying causes of dysautonomia. Surgery in general is thought to be a cause, as are viral illnesses.

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  11. Thank you for sharing.

    I'm in my second year of college working towards a Physical Fitness Specialist -- Associate in Applied Science Degree and my POTS was diagnosed roughly a year ago. That said, I have found some relief via nutrition changes. Cutting gluten out of my diet has given me my life back--so to speak; I still have good and bad POTS days but no where near as debilitating.

    I would love to see more research done on the connection between diet and POTS. Given your shared interest in getting to the root of POTS and how to manage it, I posted a link below that may interest you.

    http://theceliacmd.com/2015/05/pots-postural-orthostatic-tachycardia-syndrome-celiac-disease-and-gluten-an-undiscovered-connection/

    I think the worst part of POTS is that so many people don't believe you when you tell them you don't feel well. Like we need to either be sick all the time or we are just trying to get attention or slack off.

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