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.

Emergency Surgery!

A few nights ago, one of my biggest fears came true: that I would have to have surgery. After I had my wisdom teeth pulled in '07 and fell sick with POTS, I hoped to never go through another surgery, especially not an emergency one! My stomach has been bothering me big time since a few weeks before Christmas but I figured it was just from finishing up a round of antibiotics for a sinus infection mid-December. The doctor agreed that the antibiotics had simply gotten rid of all the good bacteria in my gut and put me on prilosec and probiotics (neither of which seemed to help at all).

After about a month of eating mild foods and still feeling awful, Thursday morning it got to the point where I couldn't eat or drink anything so I went to Urgent Care where the doctor poked around my stomach and sent me to the hospital for a CT scan of my appendix. The ER doc however, was skeptical of my appendix and thought it might be my gallbladder instead so they did a bunch of bloodwork, an ultrasound of my insides, then an x-ray, and last but not least the CT scan which revealed the problem: my appendix was inflamed and had a stone called a fecolith inside of it.

This actually came as quite a surprise to me because after 7 hours of tests and no food and drink in the ER, a nurse, (the same nurse who told me I had anxiety this summer after my blood pressure was 190/130 from the birth control pill) came in and told me that all my tests looked great but my heart rate was a little high so the doctor would probably come in to talk to me about possible anxiety (she obviously doesn't have a clue about what dysautonomia is!) So boy was I surprised when the doctor came in ten minutes later and told me that he was very concerned about my CT scan and that they needed to operate on my appendix that night and the surgeon would be arriving shortly. My first question was, "Are you kidding? The nurse just told me it was just anxiety!" And then I promptly started crying like a baby and confessed that I was so afraid of surgery because I had been sick ever since having my wisdom teeth pulled.

They did a bit more bloodwork and then whisked me off to meet with my surgeon who seemed very caring and competent. He knew a bit about EDS and realized that he would have to take extra precautions and that the incisions might not heal as quickly as they would in a typical patient. He and the anesthesiologist also asked about my autonomic dysfunction before the procedure. The anesthesiologist joked that she was more nervous than I was so maybe she should knock herself out instead! When I woke up in the OR my abdomen ached a bit but it was my throat that was really burning from the breathing tube they had inserted during the surgery and I was coughing and coughing. Apparently the anesthesiologist didn't give me very much of the drug that dries up secretions because it would have also elevated my heart rate so I was left with a lot of extra phlegm. They gave me three shots of fentanyl before taking me up to my room. Once I got into my bed I felt a little better until I threw up clear liquid all over everyone and all over myself. But my stomach felt way better after that!

My nurses were all very nice and caring and the first nurse I had was especially nice. I received a ton of IV fluids before and after the procedure and a few shots of morphine which didn't help very much and made me feel terrible. The morphine made me hot all over and made my shoulders and joints ache so I didn't take any more of it. I had one vicodin after that and it made me sleepy but didn't take away the pain either. I slept less than an hour total in the hospital after my surgery because of the pain.

Since I've been home I've slept a total of twelve hours though! My body had to catch up on its sleep deficit I guess. I have taken two tylenol since I've been home and think I will be able to get by with the pain okay on just the tylenol. They joked around in the hospital that I must have a pretty high pain tolerance to put up with appendicitis for that long before coming in.

I counted up all the different drugs they gave me in the ER, OR and in my room and added up a total of 12 that I know of. I am a person who hardly takes any pills because I am either allergic to or sensitive to just about everything. Here is the list of things they gave me and their purposes:

-IV Saline for dehyration
-IV Potassium for low blood potassium levels
-IV Protronics for upset stomach
-Oral GI cocktail for upset stomach
-IV Contrast Dye to see appendix in CT Scan
-IV Flagyl antibiotic as a pre-surgery precaution
-IV Fentanyl for immediate post-surgery pain
-IV Morphine for pain during and after surgery
-IV Anxiety right before getting wheeled into OR
-IV drug to dry up secretions before surgery
-General Anesthesia
-Oral Vicodin for pain

So far that's all I am aware of them giving me. I may have received more drugs during surgery that I wasn't aware of but when I get my medical records back for this I will find out.

I am so glad to be back home again. They warned me that the recovery may be slow and painful and to try my best to keep hydrated and keep eating, breathe deep and walk around a little every now and then to keep from getting things like pneumonia during recovery.

They performed the surgery laproscopically so I have three small incisions in my abdomen and they did not use stitches or staples but rather dermabond glue and I am expected to heal normally. I had some bruising the second day but he said that was normal. My abdomen really only hurts badly if I move around or walk. I am supposed to hold a pillow against it for now.

I am really not thrilled that I had to have surgery but I am very lucky that it hadn't ruptured yet or things would be much worse right now. I am lucky that my surgical team was fairly competent and didn't dismiss my existing health issues, in fact they seemed to take them very seriously. I am lucky I had a support system there to help me through it and a nice team of nurses. And I am certainly glad I listened to my body and went to the doctor when I did! For over a month I tried to tough it out at home but doing that any longer would have been a big mistake!

As I go through the recovery process, I hope to get stronger and stronger. What are your experiences with surgery and recovery? How long did it take you to recover? If you have any tips or advice to share it would be much appreciated!

My Medical Records: Fact or Fiction?

As I have been proudly checking things off of my ever-expanding 'To Do' list, I thought I would share that I finally ordered and received my medical records (the vast majority of them anyway) from the past six years. After a cursory review of them it is abundantly clear exactly when I got sick as my heart rate went from 62 in the office a few months prior to getting sick with POTS to over 100 at nearly every subsequent appointment. I only had a few appointments during the two years before I got sick, one for a sinus infection and one for painful periods. Other than that, I was healthy as a horse. Then in September 2007 the doctors appointments, and hospital visits, came nearly on a weekly basis for several months. Each time I suffered tachycardia, palpitations, weakness and fatigue.

My hospital bloodwork revealed a low potassium level several times. The doctors and nurses informed me at the time while they forced me to consume a sickening concoction of concentrated liquid potassium drink to bring my level back up to normal. What they neglected to tell me during all these hospital visits was that I consistently had other 'high' and 'low' markers in my bloodwork that didn't fall within normal range. I was a bit shocked to discover this while leafing through my medical records. My mom would always remember to ask them in the hospital (in case I didn't remember to ask or couldn't) if all my bloodwork looked okay and was in the normal range. They would always reply, "yes, everything looks good." So much for trusting ER docs. As long as you're not about to immediately die, they send you on your way home with instructions to take it easy and follow up with your regular doctor. Lovely. At the time my regular doctor was a woman who only knew how to shove antidepressant samples down her patients' throats.

Another thing that interested me about my medical records: certain doctors would make snide remarks in their notes about my mother, my neighbor or my grandmother accompanying me to appointments, saying that they were very vocal, or answered too many questions on my behalf. These were the times I was so sick I could hardly walk into an appointment on my own or speak for myself. I was glad they were there to advocate for me and make things a bit easier on me. But according to my records a few of the doctors I saw seemed to mind. Their jobs are made much easier I'm sure when they don't have "difficult" relatives around to answer to. Some doctors can't stand to be inconvenienced, questioned or stood up to in any way. This is not true of all doctors, but a large chunk of them who believe they are superior to their patients and respective families simply because they are the one with the letters behind their name and some general experience (although just about every hospital doctor I've seen has lacked any specific experience in treating or even recognizing dysautonomia).

Enough of my rant for now, just thought I would stress the importance of obtaining and reviewing your own medical records to make sure you don't have other underlying conditions that may be contributing to or exacerbating your dysautonomia. Oh, by the way, I now apparently have "mild central airway disease" as indicated by a chest x-ray in 09 compared to the one I had done in 08 which was fine. Would have been nice if someone from the hospital had told me this back when I had the x-ray done. Not sure what the heck it is, if there's anything I can do about it, or if it even causes any symptoms. I am assuming it's not that big of a deal otherwise the ER doc would have told me about it, right? Not necessarily. If there's one thing I've learned by reviewing my medical history on paper it's that it's never safe to assume anything. It's best to have the proof right there in front of you on paper. A lot of doctors are too lax to care whether they tell you everything or not, many are too busy to give you the full story, and many are just human and make mistakes, forgetting to tell you something that might have been important. Make a habit of requesting your medical records after every important appointment now on. I'm going to make sure I do from now on.

Why It Is Important To Obtain Your Medical Records

If you suffer from what most doctors consider a "rare" or unheard of medical condition, chances are, you have been to more than your fair share of doctors in order to get a valid diagnosis, and if you're lucky, maybe even get some treatment. And if your experience has been anything like mine, you may not even be able to remember exactly how many doctors you've been to. I've been to about 25 different practitioners in a three year period. Between a massage therapist I only visited once, to an acupuncturist I saw dozens of times, I know my medical history is floating around out there all over the place, and certainly not just confined to my PCP's office. The funny thing is, I have seen very few of my own medical records; which I admit is entirely my own fault. It is the patient's responsibility to request and collect them. Doctors don't typically offer them up unless you submit a formal request which often involves paying the doctor's office a fee for the copies. I still need to take the time to contact all these doctors offices and gather my records from each and every place I have been a patient at in the past few years. Be forewarned: gathering your medical records, even from just one office, can sometimes be a time-consuming and frustrating process. One where you may have to deal with incompetent office personnel and wait a ridiculous amount of time to receive your records. Be patient, but also be persistent: conduct frequent follow-up phone calls to ensure that your requests weren't forgotten and that your medical records are on their way. Arrange to pick them up by a certain date if possible, that way they are operating under a deadline instead of mailing them out at their own convenience. Once you receive your records, it is important to review them carefully. If you notice any gaps, missing records, untrue or incomplete information, be sure to file a complaint with your insurance company, medical board, and if necessary, contact a lawyer if there is evidence of slander or negligence in your files. This doesn't happen often, but if it does, it's important that you take the appropriate steps to correct the problem.

By now you may be wondering exactly why gathering your medical records is so very important. Other than satisfying your own curiosity, having your medical records on hand serves some very valuable purposes.

1) Lawsuits. Whether you are filing for one, or involved in one, the first thing most lawyers will request is your medical records--whether the case directly concerns your medical history or not. After my car accident, I had to release some of my medical records to lawyers for review. Therefore, it is beneficial to know what doctors are actually saying about you.

2) Provide Documentation for Disability. When applying for disability, your medical records will be under scrutiny to ensure that you are a deserving recipient and are actually unable to work. Your medical records will either help to support or refute your claim.

3) Track your own progression over time. You should know your own medical history like the back of your hand to save yourself from repeating unnecessary costly medical tests and to avoid potentially preventable medication allergies and reactions. It can also be beneficial to access your old blood work records and test results to see how things have improved or declined over time.

4) Protect your reputation as a patient. It may be important to know what your doctor really thinks of you. If he really thinks you are a hypochondriac but doesn't ever say it to your face, that information may be following you around from doctor to doctor for years to come via your medical files. Reading the doctor's comments is also a great way to get to know him better. Does he take thorough notes after each appointment, or only jot down a few key words each time? Generally, the more detailed notes, the better.

5) For tax write-off purposes. If you itemize deductions on your income tax, things like dental work and chiropractic care may be able to be written off at a small percentage. Talk to your accountant for more details.