This article covers one of the best resources available for Undiagnosed Patients. There’s a common misconception that patients who are working or have a spouse/partner that makes too much money cannot qualify for assistance to help pay for the costs of medical care but that’s actually not true. I’ve personally been recommending the Buy-In Programs for years now because it literally saved me from financial ruin in the process of searching for a diagnosis. Getting answers usually requires extensive medical testing, multiple specialty office visits, and different therapies or treatment – which can easily cost a small fortune, even if you have “good” insurance.
I wish someone would have told me of all the horrors I’d find in the aftermath of my sinus surgery. I really feel like I wasn’t prepared for this at all and I did my due diligence in researching this procedure before even committing to it – or so I thought:
- I read everything I could find online
- I talked about it in-depth with my surgeon
- I even talked to friends and family who have had sinus surgery themselves (and not that long ago I might add)
But nothing – NOTHING – could have prepared me for the reality of this surgery. It’s like they knew nobody in their right mind would go through with it if they had told the truth. So, in the spirit of patient education and the level of honesty I put forward on this blog [even if it is highly embarrassing at times], I figured I’d provide the truth – the REAL truth.
I am giving you fair warning now – the following will not be pleasant
and I have the pictures to prove it!
If you’re really squeamish or easily grossed out, please do yourself a favor and skip over this post.
If you do decide to proceed, however, you do so at your own risk.
Please don’t say I didn’t warn you.
As I had mentioned in a previous update, my new neurologist had finally ordered an MRI of the Head/Brain after years and years of me begging every other doctor I saw to have one done. Really, I just wanted to see if my symptom were really inside of my head this whole time like everyone kept telling me it was.
In case you were wondering, here’s what my brain actually looks like:
Here’s what the MRI report said:
Well, at least my brain is functioning appropriately.
My sinuses, however, not so much…
The neurologist decided to refer me to an ENT to see what needed to be done. After the reading the reports and looking over my long case history, the ENT didn’t originally believe that my sinuses were that bad. However, he did say that the sinus cavity is better viewed using a CT rather than MRI, so he ordered a CT scan without contrast to rule out the possibility that I might need surgery to fix my sinuses.
This is a copy of my CT report:
I guess I was going to need surgery after all.
The night before surgery, my occipital and posterior auricular lymph nodes suddenly began to swell and were extremely painful. I started to become really worried I wouldn’t be able to do the surgery, so I called the doctor on-call and he didn’t seem too concerned about it. He just told me to wait and see how I felt in the morning.
Luckily, the only surgical prep I had to do the night before was to stop food and water 8 hours before. However, I was allowed to take all my medications on the morning of the procedure and was allowed a few sips of water to get them down.
I still felt super sick that morning, although I decided to go through with the surgery anyway. Fortunately, my lymph node swelling had gone done for the most part. My stomach pain and nausea were so bad, though, that I had to take meds just to get myself into the car for the 15-minute drive to the hospital. Really, the last thing I wanted to do that morning was to have surgery but I also didn’t want to have to prep again either. However, while laying in the hospital bed waiting for the nurse to take me back for the procedure, I honestly began to regret this decision.
Functional Endoscopic Sinus Surgery (FESS):
Given the extent of the opacification and the number of procedures I was having, my surgery needed to be done endoscopically in the hospital, instead of outpatient in office as some of these procedures are.
Taken from the American Academy of Otolaryngology website (2015 ):
Developed in the 1950s, the nasal endoscope has revolutionized sinusitis surgery. In the past, the surgical strategy was to remove all sinus mucosa from the major sinuses. The use of an endoscope is linked to the theory that the best way to obtain normal healthy sinuses is to open the natural pathways to the sinuses. Once an improved drainage system is achieved, the diseased sinus mucosa has an opportunity to return to normal.
FESS involves the insertion of the endoscope, a very thin fiber-optic tube, into the nose for a direct visual examination of the openings into the sinuses. With state of the art micro-telescopes and instruments, abnormal and obstructive tissues are then removed. In the majority of cases, the surgical procedure is performed entirely through the nostrils, leaving no external scars. There is little swelling and only mild discomfort.
The advantage of the procedure is that the surgery is less extensive, there is often less removal of normal tissues, and can frequently be performed on an outpatient basis. After the operation, the patient will sometimes have nasal packing. Ten days after the procedure, nasal irrigation may be recommended to prevent crusting.
Taken from the American Academy of Otolaryngology website (2016 ):
The shape of your nasal cavity could be the cause of chronic sinusitis. The nasal septum is the wall dividing the nasal cavity into halves; it is composed of a central supporting skeleton covered on each side by mucous membrane. The front portion of this natural partition is a firm but bendable structure made mostly of cartilage and is covered by skin that has a substantial supply of blood vessels. The ideal nasal septum is exactly midline, separating the left and right sides of the nose into passageways of equal size.
Estimates are that 80 percent of all nasal septums are off-center, a condition that is generally not noticed. A “deviated septum” occurs when the septum is severely shifted away from the midline. The most common symptom from a badly deviated or crooked septum is difficulty breathing through the nose. The symptoms are usually worse on one side, and sometimes actually occur on the side opposite the bend. In some cases the crooked septum can interfere with the drainage of the sinuses, resulting in repeated sinus infections.
Septoplasty is the preferred surgical treatment to correct a deviated septum. This procedure is not generally performed on minors, because the cartilaginous septum grows until around age 18. Septal deviations commonly occur due to nasal trauma.
A deviated septum may cause one or more of the following:
- Blockage of one or both nostrils
- Nasal congestion, sometimes one-sided
- Frequent nosebleeds
- Frequent sinus infections
- At times, facial pain, headaches, postnasal drip
- Noisy breathing during sleep (in infants and young children)
In some cases, a person with a mildly deviated septum has symptoms only when he or she also has a “cold” (an upper respiratory tract infection). In these individuals, the respiratory infection triggers nasal inflammation that temporarily amplifies any mild airflow problems related to the deviated septum. Once the “cold” resolves, and the nasal inflammation subsides, symptoms of a deviated septum often resolve, too.
Septoplasty is a surgical procedure performed entirely through the nostrils, accordingly, no bruising or external signs occur. The surgery might be combined with a rhinoplasty, in which case the external appearance of the nose is altered and swelling/bruising of the face is evident. Septoplasty may also be combined with sinus surgery.
The time required for the operation averages about one to one and a half hours, depending on the deviation. It can be done with a local or a general anesthetic, and is usually done on an outpatient basis. After the surgery, nasal packing is inserted to prevent excessive postoperative bleeding. During the surgery, badly deviated portions of the septum may be removed entirely, or they may be readjusted and reinserted into the nose.
If a deviated nasal septum is the sole cause for your chronic sinusitis, relief from this severe disorder will be achieved.
SMR Turbinate Reduction:
Taken from the American Rhinologic Society website (2015):
There are many ways to shrink the size of the turbinates. Surgery is typically called turbinate reduction or turbinate resection. Surgery can be performed either in the office or in the operating room. In many instances, turbinate surgery and septoplasty are performed at the same time.
It is important that the turbinate not be removed completely because that can affect the function of the turbinates. Complete turbinate removal can result in a very dry and crusty nose. Occasionally, turbinate tissue will re-grow after turbinate surgery and the procedure may need to be repeated. This is preferable to the situation of totally removing the turbinate.
You may hear of many different terms being used when it comes to surgery for the turbinates. Examples of these terms are cauterization, coblation, radiofrequency reduction, microdebrider resection, and partial resection. These all refer to different methods of reducing the size of the turbinates.
Some of these methods shrink the turbinates without removing the turbinate bone or tissue. These methods include cauterization, coblation, and radiofrequency reduction. In each of these methods, a portion of the turbinate is heated up with a special device. Over time, scar tissue forms in the heated portion of turbinate, causing the turbinate to shrink in size.
With some of the other procedures, a portion of the turbinate is removed. It is important that enough of the turbinate be left intact so that the turbinate can warm and humidify the air that is flowing through the nose. A procedure called submucosal resection is a common technique used to treat enlarged turbinates. With this procedure, the lining of the turbinate is left intact, but the “stuffing” from the inside of the turbinate is removed. As the turbinate heals, it will be much smaller than before surgery. Sometimes, this resection can be performed with a device called a microdebrider. This device allows the surgeon to remove the “stuffing” through a small opening in the turbinate. In some instances, more of the turbinate is removed.
In some instances, packing may be placed in your nose during the healing process.
I was lucky enough to receive absorbable packing and sutures for my surgery – I heard the removal of the other kind of nasal packing and stenting is awful, though.
Maxillary Antrostomy w/ Removal of Maxillary Tissue:
Taken from the New York Head and Neck Institute website (2016):
Surgery begins with careful inspection of the nose. Key landmarks are the three turbinate bones or conchae (conchae = shell) arising from the lateral nasal wall and the ostiomeatal complex (a complex where the maxillary, ethmoid and frontal sinuses drain into the side wall of the nose). The most anterior, or nearest to the front structure within the ostiomeatal complex, is the uncinate process. This semilunar (half moon shaped) ridge of bone projects in front of the ostium of the maxillary sinus. Behind or posterior to the uncinate process, is a group of ethmoid cells known as the bulla ethmoidalis. The first step in ethmoidectomy is the careful and atraumatic removal of the uncinate process to visualize the ethmoid sinus and maxillary ostium. In our experience, incomplete removal of the uncinate process is a significant factor in leading to revision surgery. We believe that the uncinate should be removed at its attachment to the lateral nasal wall.
Endoscopic view of right nose showing uncinate process (up) and middle turbinate (mt). Ethmoidectomy begins with probing the space between the uncinate process and bulla ethmoidalis known as the ethmoid infundibulum (infundibulum = funnel-like).
Often complete removal of the uncinate process reveals the natural ostium or drainage pathway of the maxillary sinus into the nose. Various instruments have been designed to enlarge the maxillary ostium and remove the uncinate process. How much to enlarge the natural ostium of the maxillary sinus, also known as an antrostomy (antrostomy = to drain or make a permanent opening in the maxillary sinus to the nose), remains the subject of debate. Some surgeons prefer to only expose the natural ostium, while others routinely remove much of the maxillary sinus wall as part of this step of the procedure. All agree that the antrostomy must include the natural ostium of the sinus because mucocilliary flow is directed to the ostium and mucous may re-enter the sinus through the antrostomy. This so-called “circus effect”, which leads to reinfection of this sinus, is avoided by incorporating the natural ostium in the antrostomy.
Confining maxillary sinus surgery to primarily restoring the drainage pathway of the sinus into the nose is a significant departure from the pre-minimally invasive or functional sinus surgery era. Traditionally, theCaldwell Luc procedure was an integral part of maxillary and ethmoid sinus surgery. However, the American anatomist J. Parsons Schaefer recognized that the “maxillary sinuses are often the cesspool for infectious material from the frontal sinus (sinus frontalis) and certain anterior group of cellulae ethmoidalis” (ethmoid sinus air cells). That is, Schaeffer was implying that the maxillary sinusitis was often the result of infected drainage from the ethmoid and frontal sinuses, and not the cause of infection in these sinuses. In the modern era of sinus surgery, Caldwell Luc is reserved for disease processes such as fracturs or tumors which cannot be treated through an endoscopic transnasal approach.
Endoscopic image of the right nose showing completion of removal of the uncinate process by a debrider exposing the natural ostium of the maxillary sinus (mt= middle turbinate). Following the antrostomy, the maxillary sinus is inspected and polyps, fungus or infected
secretion are removed.
An uncommon complication of antrostomy is to injure the nasolacrimal duct (arrows) which drains tears into the nose. When such injuries do occur, the patient may have no problems because the tears drain directly into the nose at the site of injury. Less often the patient experience epiphoria or tears flowing onto the cheek. In such individuals, a dacryocystorhinotomy (DCR) reestablishes the normal drainage into the nose. Axial cadaver section through the ethmoid sinus. Enlargement outlines the infundibulum (infundibulum = funnel-like) drainage pathway of the ethmoid (yellow) which is bounded anteriorly by the uncinate process (yellow arrow) and posteriorly by the cells of the bulla ethmoidalis. After the uncinate process is removed, ethmoidectomy consist of exenteration of the ethmoid cells. From Schaefer SD et al. The combined anterior-to-posterior and posterior-to-anterior approach to ethmoidectomy: An update. Laryngoscope116:509-513, 2006.
My list of medications while in the hospital:
GENERAL DISCHARGE INSTRUCTIONS:
For the next 24 hours or while taking narcotics:
- Do NOT drive or operate any motorized equipment
- Do NOT drink alcohol
- Do NOT use marijuana products
- Do NOT make any important decisions
CALL 911 OR REPORT TO THE ER IF YOU HAVE…Chest pain
- Difficulty breathing
- Sharp cramping calf pain
- Sudden weakness to any part of your body
- Sudden uncontrolled bleeding
- Just don’t “feel” right or you’re suddenly nervous
CALL YOUR MD’S OFFICE FOR…
- New, uncontrolled, or worsening pain
- Unable to void after 8 hours
- 101-degree temperature
- Questions concerning any surgical dressings
- Redness, swelling or foul-smelling drainage
The first 24 hours after your procedure, you must have a responsible adult available to assist you.
If you use oxygen at home continue to do so.
It can be normal to have dizziness, drowsiness, a sore throat, headache, or muscle aches. Call your MD if it becomes persistent.
Just take it easy for the rest of the day and gradually increase your activity level.
You may resume showering tomorrow unless your MD tells you otherwise.
Some nausea or vomiting is expected after anesthesia, call your MD if it becomes persistent.
Start with clear liquids (any liquid you can see through).
If no nausea, slowly return to eating your normal diet.
If you are nauseated, remain on clear liquids until it passes.
If your MD ordered a medicine to help with nausea, take this as directed.
If you have any questions or concerns, call your MD.
Sleep Apnea or Suspected Obstructive Sleep Apnea
You have received this handout because either you have sleep apnea or your health care provider suspects you may have Obstructive Sleep Apnea (OSA).
Obstructive sleep apnea (OSA) is also called sleep apnea. During normal sleep, muscles keep your throat open. This lets the air pass through easily. With OSA, the muscles and tissues around your throat relax and block or partially block air from passing through your windpipe. You may stop breathing for ten or more seconds, many times during your sleep. This causes your blood oxygen level to drop, which can strain the heart and blood vessels. This can also lead to high blood pressure, heart disease, and even death.
You may wake up during the night to catch your breath. You may feel tired and sleepy the next day. You may also have a hard time doing your usual activities.
It is important to know for sure if you have OSA. Follow up with your primary healthcare provider.
A sleep disorders center diagnoses sleep apnea. Treatments may include wearing a constant positive airway pressure mask (CPAP) while you sleep. Other options may also be considered. The results of the sleep study will guide the right treatment.
When you are at home and you have OSA or are suspected of having OSA:
- Do not have alcohol or use sedative medicine before you sleep. These allow the muscles and tissues around your throat to relax and block the airflow to your lungs.
- Sleep on your side or use pillows designed to prevent OSA. This keeps your tongue or other tissues from blocking your throat. You can also try raising the head of your bed or try sleeping on several pillows. Sewing a sock that holds a tennis ball to the back of your pajama top may stop you from sleeping on your back.
- If you have OSA, follow your treatment plan. Special devices that you put in your mouth, called dental appliances, may help. If you have sleep apnea, you may have a CPAP machine to help you breathe while sleeping. Use this during your recovery unless specifically asked not to use by your surgeon.
- Do not take sleep aids while taking pain medicine.
- If you have chest pain or trouble breathing, get help right away or call 911.
MEDICATIONS TO TAKE HOME:
Although the following set of instructions were taken directly from the John Hopkins (2016) website, they are quite similar to the directions I was provided by my own surgeon.
What to Expect After Endoscopic Sinus Surgery:
- Bleeding: It is normal to have some bloody discharge for the first 3-5 days after sinus surgery, especially after you irrigate your sinuses. If steady bleeding occurs after surgery, tilt your head back slightly and breathe through your nose gently. You may dab your nose with tissue but avoid any nose blowing. If this does not stop the bleeding you may use Afrin spray. Several sprays will usually stop any bleeding. If Afrin fails to stop steady nasal bleeding then you should call our office or the on call doctor (see contact below).
- Pain: You should expect some nasal and sinus pressure and pain for the first several days after surgery. This may feel like a sinus infection or a dull ache in your sinuses. Extra-strength Tylenol is often all that is needed for mild post-operative discomfort. You should avoid aspirin and NSAIDs such as Motrin, Advil, and Aleve (see below). If Tylenol is not sufficient to control the pain, you should use the post-operative pain medication prescribed by your doctor.
- Fatigue: You can expect to feel very tired for the first week after surgery. This is normal and most patients plan on taking at least 1 week off of work to recover. Every patient is different and some return to work sooner.
- Nasal congestion and discharge: You will have nasal congestion and discharge for the first few weeks after surgery. Your nasal passage and breathing should return to normal 2-3 weeks after surgery.
- Postoperative visits: You will have a certain number of postoperative visits depending on what surgery you have. During these visits we will clean your nose and sinuses of fluid and blood left behind after surgery. These visits are very important to aid the healing process so it is essential that you attend all those scheduled for you. There is some discomfort involved with the cleaning so it is best to take a pain medication (described above) 45 minutes before your visit.
What to Avoid After Endoscopic Sinus Surgery:
- Nose Blowing and Straining: You should avoid straining, heavy lifting (> 20 lbs) and nose blowing for at least 10 days after surgery. Straining or nose blowing soon after surgery may cause bleeding. You can resume 50% of your regular exercise regimen at 1 week after surgery and your normal routine 2 weeks after surgery.
- Aspirin or Non-steroidal Anti-inflammatory (NSAIDs) medications: Aspirin and NSAIDs such as Motrin, Advil, and Aleve should be stopped 2 weeks prior to surgery. Aspirin and NSAIDs such may cause bleeding and should be avoided for 2 weeks after surgery.
- Steroid Nasal Sprays: If you were taking nasal steroid sprays prior to surgery you should avoid using these for at least 2 weeks after sinus surgery to allow the lining of the nose and sinuses to heal. Your doctor will tell you when it is safe to restart this medicine.
Postoperative Care Instructions:
- Nasal Saline Spray: Nasal saline mist spray can be used every 2-3 hours after surgery and can make your nose more comfortable after surgery. These sprays (Ayr, Ocean, Simple Saline) are over-the-counter medications and can be purchased in any pharmacy
- Sinus Irrigations: You will start the sinus irrigations with the sinus rinse kits (NeilMed Sinus Rinse Kit) the day after surgery. This must be performed at least twice daily. Your doctor or nurse will show you how to perform the irrigations. At first they will feel strange if you haven’t done them before. Soon, however, they will become quite soothing as they clean out the debris left behind in your sinuses after surgery. You can expect some bloody discharge with the irrigations for the first few days after surgery. These irrigations are critical for success after sinus surgery!
Just got home from surgery a few hours ago. Sadly, I look better than I feel. Although you can’t really see it in this picture, I definitely vomited in my hair a little bit – good times. It can only go up from here my friends.
And, in case you’re wondering, that thing under my nose is to catch all the blood coming out from my nose. Luckily I’m not bleeding that bad – at least yet. We’ll see how the day goes.
It’s true what they say about recovering from this surgery – it really does feel like you have the worst sinus infection ever. Like ever, ever. I feel like I’ve been hit in the face with a shovel and no, I’m not joking. My face is super swollen and painful today. However, I also fell behind on taking my painkillers because I slept nearly all day.
My face is super swollen and painful today. However, I also fell behind on taking my painkillers because I slept nearly all day. Remind me never to do that again.
Had my first follow up with the surgeon today. He said that I’m healing well and that the pathology report on all the “gunk” he pulled out of my face came back as normal. However, he also said he’s never had a patient with that much opacification have a normal report without something causing it. I’m just one of the lucky ones, I guess. Nothing odd about the way my body reacts really surprises me anymore. But I am just glad it wasn’t the result of any type of disease or a fungal infection.
I still look and feel terrible, though. The doctor also did some debriding while I was at the office, so I can at least breathe a little better. My next follow-up is in three weeks from today.
Left a message for the ENT nurse to call me back regarding the odd smell in my nose. Do I need another appointment? Antibiotics? Please make this smell go away!
Really, the only way I can describe it is rotting flesh… or maybe meat… rotting something. There’s no way to hide from it – it’s in my nose. And every time I breathe in – I gag. God help me.
THIS just came out of my nose. It looks and feels like cartilage. I know it’s not but that doesn’t make it any better. At least it’s not the blood clots I was blowing out earlier in the week. Please don’t judge me by what comes out of my face.
Went back to the surgeon to make sure I didn’t have an infection, despite the fact that I just saw him a few days ago and he said everything was fine. After what came out of my face yesterday, I just wanted some reassurance. I’m happy to report that everything seems to be looking good.
The doctor did say that there were some debris and crusting in the right middle meatus, which he got out using the endoscopic suction and forceps. There was also a moderate amount of mucus, so he performed some more debridement as well. Unfortunately, the grossness I was seeing [and SMELLING] is a “normal” part of the healing process. Normal… yeah, okay.
There are simply no words to accurately describe the true horror of watching this come out of your own face…. I’m honestly disgusted with myself.
Today was my 3-week check up since surgery.
A friend of mine drove me to the appointment and had the pleasure of watching the doctor pull some of the remaining scabs out and the look on her face was priceless. She said one of the scabs he pulled out was about a half of an inch to an inch long. Lovely, isn’t it? Hopefully, I haven’t scared her away.
I’m slowly starting to feel better thankfully. I still have occasional scabs coming out but they are few and far between. The scabs are also a lot less gross than they were before, although they do still smell of something terrible. I think the shape of my nose is finally looking more normal as well. Even though it has taken much longer to recover than expected, I am still hopeful that this surgery will be worth it in the long-run.
I am two months post-op and, finally, I think I am almost to the point of being completely healed. I can actually breathe better and I haven’t had anything else horrific come out of my face in a while. I’ve been keeping up with the sinus rinses every day, mostly because it seems to be helping my normal seasonal allergies as well. My oxygen saturation has also been at 99% and 10o% at my last few doctors appointments, which is a huge improvement. I really hope this means that the upcoming allergy and flu seasons will be much easier than the last few years in which I had a sinus infection almost every month or two. I guess only time will tell.
American Academy of Otolaryngology (2015). Sinus Surgery. Retrieved from http://www.entnet.org/?q=node/1429
American Academy of Otolaryngology (2016). Deviated Septum. Retrieved from http://www.entnet.org/content/deviated-septum
American Rhinologic Society (2015). Septoplasty & Turbinate Surgery. Retrieved from http://care.american-rhinologic.org/septoplasty_turbinates
John Hopkins Medicine (2016). Otolaryngology-Head and Neck Surgery. Retrieved from http://www.hopkinsmedicine.org/otolaryngology/specialty_areas/sinus_center/procedures/post_operative_instructions.html
New York Head and Neck Institute (2016). Endoscopic Ethmoidectomy & Antrostomy: Operative Technique. Retrieved from http://www.nyhni.org/Centers-and-Services/Sinus-and-Allergy/What-are-the-surgical-treatments-of-sinusitis-and-/Endoscopic-Ethmoidectomy—Antrostomy–Operative-T
Since leaving my job for medical reasons, I can’t even count how many times I’ve heard that I’m so lucky to be able to stay home every day and not have to work anymore. Every time I hear this, though, I feel sick inside.
In one way, they’re right – I am lucky… Lucky I’m not killing myself anymore by going to work with a serious illness; lucky I’m not putting both myself and other people in danger just to get there and back; and lucky I’m not hurting the business or even patients by not functioning effectively enough to maintain my job. Unfortunately, there are some people with chronic illnesses who don’t have that same choice. So yes – I am extremely lucky in that sense.
However, not working is also a huge burden – on my family, on my finances, on my physical and mental health, on my self-esteem – on pretty much everything in my life. I would do almost anything in the world to feel better and get myself back to working – I’m trying anything and everything I can to hopefully get back there one day.
This isn’t an extended vacation – this is chronic illness.
I’ll trade you non-stop doctor and hospital visits, medical tests that are painful, surgeries that don’t fix the problem, being referred to psychologists and having people question your sanity, the inability to eat without being in pain or sickness, disability and insurance denials, being called a drug seeker, and being judged by nearly all of society just to go back to work.
Hope you don’t mind if chunks of your hair fall out, or that you pass out nearly every single time you have to take a shower. I hope that you’re not afraid of needles. You won’t mind having some brain fog, would you? It’s when you can’t remember anything – good luck doing my homework and writing that paper for me.
Oh, you also have some errands to run just to get the necessities of course but don’t forget the fact that you can’t drive anywhere by yourself. Your friend’s having a party that’ll you’ll have to miss and your other friend is mad at you because you don’t hang out with them enough. Those are the only two friends you have left though because no one else cared to stick around, not even most of your family.
Also, don’t forget to take those 13 different medications at different times throughout the day. Heads up – some make you really, really sick, others make you feel really tired and unable to function, and some keep you up all night. You can’t have any pain meds, though, because then people will just think you’re an addict – you didn’t need them anyways, right? Again, I’ll gladly trade places if you’d like – since I’m so lucky that I can’t work.
Being able to work is a huge privilege,
although many “healthy” people tend to forget this.
For the chronically ill, Labor Day is often just another reminder of what we many of us have lost to our illness. So when you’re off celebrating tomorrow, don’t just be grateful for having a day off- be grateful for your health giving you the opportunity to do so and please be thoughtful of those who may not have that same chance.
Update 8/18/2016 – This article was featured on TheMighty.com website on August 9, 2016, which is such a huge honor. Thank you all for your continued love and support.
If you’d like to read the shorter, edited version of this post on The Mighty’s Website, please visit https://themighty.com/2016/08/how-training-for-olympics-is-like-having-a-chronic-illness/
As a patient who has not only been diagnosed with multiple rare forms of chronic illness and as a former athlete that competed on the national level in swimming, I feel that I offer a unique perspective as to how some aspects of day-to-day life are quite similar between the polar opposites of having a chronic illness and training to compete in the Olympics. Here are some of the
Top 10 Ways That Living with a Chronic Illness
is Like Training for the Olympics:
10. You’re friends and family don’t understand why you never hang out with them.
Obviously, training for the Olympics requires a great deal of time and dedication. In an effort to become one of the top athletes in the country, sacrifices have to be made and one of the first things to go is generally your social life. Spending months at a time at training camps or traveling for competitions takes you away from your family and most days it was far too tiring to even think about going out and socializing with my friends, let alone actually doing it.
Now that I have a chronic illness, there are days when I can barely walk to the bathroom by myself, let alone take a shower. I’m lucky if I make all of my scheduled doctor appointments or medical tests even though I have assistance in getting there since I can no longer drive. Having a social life on top of it – that’s honestly asking too much of myself. The majority of people can’t understand how truly difficult it is to do the basic things that many people take for granted, such as going to the grocery store or cooking dinner. When you become sick while still young, though, the discrepancies between living a so-called normal life and that of “the sick life” are far more dramatic in comparison. Friends just simply don’t have the capacity to comprehend why their formerly “fun friend” is suddenly stuck at home on the couch. As they say – you don’t really get it until you get it.
9. You’re always tired, regardless of how much you sleep.
When you’re working your body hard, either to make your Olympic dreams come true or to merely make it through the day, fatigue seems to have a tendency continually build up to the point where you don’t know what it’s like to NOT feel tired anymore. No matter how much you sleep – it could be 8 hours, 12 hours, or 2 hours – it all feels the same.
Professional athletes are likely to suffer from a condition called Overtraining syndrome (OTS) if they work themselves too hard over a long period of time. As Kreher & Schwartz (2012) explain, “athletes train to increase performance. Performance increases are achieved through increased training loads. Increased loads are tolerated only through interspersed periods of rest and recovery—training periodization. Overreaching is considered an accumulation of training load that leads to performance decrements requiring days to weeks for recovery. Overreaching followed by appropriate rest can ultimately lead to performance increases. However, if overreaching is extreme and combined with an additional stressor, overtraining syndrome (OTS) may result. OTS may be caused by systemic inflammation and subsequent effects on the central nervous system, including depressed mood, central fatigue, and resultant neurohormonal changes” (p. 128). However, depending on the pathophysiology and etiology of the condition, a number of treatment options are available, including hormone therapy, cognitive or physical therapies, stress management, and prolonged periods of rest.
Prolonged fatigue in chronic illness generally comes from the medical condition itself but other factors that come along with the illness can also influence a person’s physical, emotional, and social lifestyle in a way the creates additional fatigue as well. For example, sleep patterns can be affected by conditions like dysautonomia or autoimmune disease. While there are some strategies available for managing the fatigue that result from the various conditions of having a chronic illness or pain, once again it really just depends on the type of condition that is causing it. Delegating duties to friends or family members, practicing stress-reducing technique or and good sleep behaviors, and taking a lot of breaks throughout the day can help to a degree. In most cases, though, chronic feelings of fatigue cannot be cured or treated unless the underlying condition is cured or goes into remission.
8. You’re usually awake to see the sunrise.
Olympians often start training in the early hours of the morning, long before the rest of the world is even awake.
Those with a chronic illness are often awake this early in the morning as well – mostly because they haven’t gone to bed yet due to high levels of pain or because they spent most of the evening lying on the bathroom floor.
7. You’ve become really good at hiding how you really feel.
In order to be seen as a “good sport”, athletes sometimes have to cover their disappointment in their performance by shaking the hands of their opponent.
Those with chronic conditions tend to hide their illness by responding that they’re “fine” while they keep a smile on their face, even though they may feel like they’re dying on the inside.
6. It’s just like having a full-time job but without the weekly paycheck.
Potential Olympians train both day and night to achieve their dreams of competing in the Olympics. When I was in training, I’d have practice in the morning before school, strength and/or weight training immediately after school, and then practice again in the evening before I went home to do homework and rush off to bed. Also, I either went to practice or to a competition on both days of the weekend as well.
As a chronic illness patient, I spend most of my time calling doctors offices, faxing recordings, fighting insurance companies, researching treatment options, and recovering from various surgeries or treatments that are often difficult in and themselves. I also spend a lot of time going from one appointment to another, shuffling from one specialist to another, going through this medical test or that treatment plan, one hospital visit after another hospital – it’s exhausting.
5. You make plans way ahead of time.
When you’re training for the Olympics, everything is planned months ahead of time – sometimes even years in advance. This includes everything from what competitions you’ll compete in and the travel plans to go to such events to the training schedule you follow throughout the year.
Making plans when you have a chronic illness also requires a lot of preparation. As a rule, I try not to commit to anything unless I absolutely have to. On those rare occasions that I do make plans to hang out with friends or family, every detail is planned out way ahead of time and every potential or possibility needs to be accounted for. However, considering that most of my symptoms can change substantially in the blink of an eye, most efforts to plan anything are basically futile. More often than not, I have to cancel these plans at the last-minute anyways – leaving me to feel guilty or worthless because of my illness.
4. Proper nutrition and hydration are imperative to your ability to function.
One of the most important elements of training for the Olympics is good nutrition. If you want to reach your peak performance, it’s import to follow a well-balanced diet. It’s also important to stay hydrated both before and after practice so that you don’t become ill or injured simply by losing important nutrient and electrolytes from pushing your body passed its physical limitations. According to an article in Men’s Fitness Magazine (2014), “for Olympic-level performance and off-the-chart energy, you must eat properly including eating a breakfast of complex carbohydrates and lean protein, then eat again every 3-4 hours and within 90 minutes of working out. Consume half your bodyweight in fluid ounces of pure water and if exercising intensely or for long duration, consume a sports-drink to replenish electrolytes” (para. 2).
Similarly, some of my diagnosed conditions require extreme effort and dedication to dietary guidelines in order to thrive. For instance, my vascular surgeon identified that has malnutrition after years of not really eating due to a combination of pain and early satiety caused by a rare condition called Superior Mesenteric Artery Syndrome (or SMA Syndrome). In order to survive the life-saving surgery that I need in the upcoming months, I was sent to a dietician to bring up my nutritional blood screens so that I could have the surgery to fix the compression of my SMA, as well as the other three rare vascular compression syndromes I have as well, including Nutcracker Syndrome, May-Thurner Syndrome, and Pelvic Congestion Syndrome. However, because the third portion of my duodenum is being compressed by the SMA, food becomes obstructed as it tries to move into my small intestines.Therefore, the dietician had to be somewhat creative in prescribing a diet of foods that could move past the compression. Currently, my daily dietary regimen consists of:
- Multiple “shots” of either a protein shake or Carnation Breakfast Essentials (I do “shots” because I can’t drink 8 to 16 oz a day in one or two sittings without getting sick).
- 2 small jars of organic baby food – levels 1 and 2 only.
- 1 pouch of pureed baby food
- 2 tablespoons of peanut butter.
- 2 high-calorie coffee drinks from Starbucks (to maintain/gain weight).
- 1 yogurt packet.
- As many pretzels, crackers, or chips I can handle.
- Popsicle or Italian ice – only if I can manage it as well.
For another condition, Postural Orthostatic Tachycardia Syndrome (or POTS Syndrome), I require a high intake of both water and electrolyte drinks (e.g., Pedialyte) to help increase blood volume and prevent dehydration, along with a high sodium (or salt) diet to keep my blood pressure high enough so that I don’t faint multiple times in a single day .
All day long, all it feels like all I do is eat and count calories. One bite here, another sip there – it’s honestly exhausting! Especially when you spent years actively avoiding food since it was the source of so much pain.
3. You prepare yourself to be strong mentally.
In any form of competition, you have to be strong not only physically but mentally as well. According to an article by Sports Psychology Today (2011),”mental preparation helps athletes achieve a focused, confident and trusting mindset to help them compete at their highest level” (para. 2). While some athletes use meditation, others prefer to listen to music for motivation. I always preferred visualization when I was able to compete. As Handel (2012) explains, “in preparation for a game, athletes will run through different situations in their imagination as a kind of mental rehearsal. This way, when they are confronted with the situation in real-life, their mind is already primed to respond to the situation in an effective way…Contrary to common misconceptions, visualization is most effective when athletes focus on the process rather than the outcomes” (para. 11 and 13)
Essentially, I use this very same strategy to manage life as a professional patient as well. After years of doctors telling me that my symptoms were caused by anxiety or depression, I mentally prepare for all appointment by preparing notes and deciding what I want to say ahead of time. Then I formulate counter-arguments based on current medical research to make sure that my concerns are taking seriously. Sometimes I need to prepare myself mentally before I gain enough courage to go ahead with a certain medical test or an experimental treatment plan simply because it makes me nervous for whatever reason. There are some days that my symptoms can be so bad that mental preparation becomes necessary just to make it out of my bed.
2. You can handle high levels of pain like a champion.
For the most part, nearly every competitive sport out there involves feeling pain in some, way, shape, or form. For instance, pain and injury could result from overworking yourself during practice or you could suffer a really bad head injury during competition. Although I never personally got severely hurt in competitive swimming, aside from the ocassional ear infections and a pulled muscle or two, other sports I did over the years did result in extreme forms of pain and injury. In cheerleading, for example, I suffered from 6 concussions, a broken nose, a fractured jaw, and two broken ankles – all in the span of a single season. Even with broken bones, though, I still performed because I was the captain and I didn’t want to let my squad down.As the old adage goes, no pain – no gain, right?
It is the same with chronic illness. Often we feel pressure to do things we know we shouldn’t do but we do anyways because we either feel guilty or think that it’s an expectation. Additionally, since we experience high levels of pain almost each and every day, we have learned to handle our pain much better than the average person. When I started receiving Botox injections for migraines, for instance, my neurologist commented about how I was her favorite patient because I didn’t even flinch once as she injected needles into various places across my face, forehead, and neck. I’ve also had nurses surprised that I would barely move when they would blow a vein during a catheter placements or the fact that I didn’t cry when I had a biopsy taken from my scalp without any form of sedation (not even a local), which was later cauterized with colloidal silver instead of the normal placement of sutures. Really, it’s not that you don’t feel the pain anymore – it’s just that you handle pain better now because you’ve dealt with it for so long.
1. There’s strong camaraderie between you and your team members/fellow spoonies.
When the entirety of your life is spent training and competing, often the only people you get to see regularly is your fellow team members. Basically, they become your new family since you spend every waking moment together and they understand what you’re going through.
When you’re sick, it can be hard to relate to people who are healthy. We feel judged by others because of our illnesses and most people can’t understand what it’s like to be chronically ill. This includes the majority of our closest friends, family members, and doctors as well. The only people who get it are other spoonies or warriors that have gone through what you’ve gone through, and therefore understand where you’re coming from.The chronic illness community offers a lot of support to members because we all know what it’s like to be alone or afraid. We’re so tight-knit that we have developed our own language, laugh at our jokes, and establish rules that most outsiders are unlikely to be conscious of unless they’re given an explanation. Even then, it’s hard to understand because they have experienced as much as we have. In a way, it makes up for all that’s been lost to chronic illness. Like a secret society, but one that nobody chose to join by their own accord – it’s simply involuntary recruitment into this life.
Edger, M. (2011). Five tips for mental preparation. Sports Psychology Today. Retrieved from http://www.sportpsychologytoday.com/youth-sports-psychology/five-components-of-mental-preparation/
Men’s Fitness Magazine (2014). Fitness Secrets of Olympic Athletes. Retrieved from http://www.mensfitness.com/training/pro-tips/fitness-secrets-of-olympic-athletes
Handel, S. (2012). The Emotion Machine. Retrieved from http://www.theemotionmachine.com/4-mental-exercises-olympic-athletes-use-to-gain-that-extra-edge
Kreher, J.B. & Schwartz, J.B. (2012). Overtraining Syndrome: A practical guide. Sports Health, 4(2), 128-138. doi: 10.1177/1941738111434406
Back in April, I finally got an appointment with the neurologist here in my town after waiting over a year for my new patient appointment. Although I had a neurologist up in Denver in the interim, he was simply just an okay doctor in my opinion – while he supported my theory of a POTS diagnosis (which I ultimately received last summer), he kept referring everything to my cardiologist and didn’t really seem that interested in doing his own investigation of my symptoms. He was also an hour’s drive away when there was little to no traffic, so I was obviously excited to finally have a specialist here in town. Immediately after meeting with the new doctor, I could see why there was such a long wait to get into the practice – she was fabulous!
After reviewing my case in detail, she was horrified that no one had done an MRI of my head as of yet – Thank you! That’s what I’ve been saying – especially considering the number of head injuries I’ve had back when I was cheerleading. She also ordered another Electroencephalogram (EEG) since evidently my first EEG was only reviewed by the technician who performed it and was never signed off by my neurologist, which was a lovely finding I might add. Thankfully, my EEG came back as being normal again, confirming that I was NOT having temporal lobe or partial seizures as both neurologists had suspected based on my primary neurological symptoms of migraines, cognitive impairment, visual aura, and olfactory hallucinations. Basically, the negative EEG results confirmed that I was suffering from Status Migrainous or intractable chronic migraines as originally suspected. Although I had started taking gabapentin after my first appointment with the neurologist, which seemed to provide a little bit of relief of my symptoms, the doctor decided to also start Botox Injections since the migraines were confirmed to hopefully get them under control.
I had my first injections back on May 4th and so far they have really helped. Although my migraines have not completely disappeared as of yet, they have been less intense and a lot less frequent than they were prior to the injections. However, they do say it can take a few rounds before they will know if it will work effectively, so I’m hopeful that they will only continue to improve after my next appointment with neurology in August. Nevertheless, I was much more anxious about what the MRI would [or would not] show than the results of the EEG.
To my surprise, the MRI showed that my brain was fine. There were no brain lesions, tumors, growths, signs of stroke, etc., which was really good news. The rest of my head, though, not so much…
MRI of the Head/Brain W/O Contrast
The brain parenchyma is unremarkable. The diffusion weighted images demonstrate no evidence of recent infarct.No evidence of hydrocephalus. The pituitary gland, pineal gland, and corpus callosum regions are normal in appearance. There is no intracranial hemorrhage. No extra-axial fluid collections are present. The orbits, cavernous, and para cavernous regions are unremarkable.
The paranasal sinuses demonstrate complete opacification of the right
maxillary antrum, with maxillary sinus wall thickening, suggesting chronic sinusitis. There is a rim of T1 shortening and associated susceptibility within the mucosal thickening, which could represent inspissated mucus or possibly allergic fungal disease. There is no associated expansion or erosive change identified to suggest mucocele. There is a retention cyst within the right sphenoid and likely along the roof of the left sphenoid. Mild mucosal thickening within the left maxillary antrum.
The calvarium, skull base, and craniocervical junction are preserved. Normal vascular flow-voids are identified.
- Unremarkable MR appearance of the brain without contrast.
- Paranasal sinus disease as described, including complete opacification of the right maxillary antrum, with suggestion of chronic maxillary sinusitis. Ring of T1 shortening and susceptibility within the right maxillary antrum could represent inspissated mucus or possibly allergic fungal disease.
So what does all this mean? According to the neurologist, it means that I needed a quick referral to an ENT for evaluation. Great – another new doctor.
At the same time all this was going on, I also had two other MRIs (aside from the one on my brain) to evaluate the acute pain I suddenly was having on my right side that further radiated down into my pelvic region. Although the first MRI was supposed to be on both my abdomen & pelvis, it only was approved as an abdominal MRI. Not surprisingly, since it didn’t show anything other than the vascular compressions seen on my earlier CT scans, they ended up having to order another MRI of my Pelvis a few weeks later. Thankfully, given the amount of time that had passed between tests, the concern about appendicitis had pretty much been ruled out.
MRI of the Pelvis W/ and W/O Contrast
Pelvis Mesentery: Small quantity of free fluid within the posterior dependent pelvis, primarily within the rectouterine pouch of Douglas with trace fluid also adjacent to the lower aspect of the uterine fundus.
GI: Small tubular structure originating from the base of the cecum, just below the terminal ileum, with location and appearance most consistent with the appendix, normal in appearance and size (for instance image 41 series 6). No abnormal
surrounding T2 signal and no abnormal contrast enhancement about the terminal ileum or appendix region. Normal appearance of the terminal ileum (for instance image 37 through 39 series 6).
Uterus: Uterus is normal in size and appearance, with normal anteflexed uterine
fundus. Cervix is normal in appearance by MRI evaluation.
Adnexa: There is a 1.8 cm peripherally enhancing cyst in the right ovary, with mild heterogeneous internal T2 appearance, with normal internal T1-weighted isoechoic appearance. Several small follicles in bilateral adnexal regions.
- Small 1.8 cm peripherally enhancing cyst in the right ovary. Small quantity of free intrapelvic free fluid. Right ovarian cyst may represent a previously ruptured right follicular cyst. Per current radiology criteria no further specific follow-up for this right ovarian cyst is required.
- No MRI findings to indicate appendiceal pathology, including no abnormal edema or enhancement surrounding the cecum or appendix.
Although it states in the report that no further up was needed for the ovarian cyst according to radiological criteria, my gastroenterologist disagreed and, therefore, referred me to my gynecologist for further evaluation.
At first, my gynecologists wasn’t extremely concerned about the findings of the report. However, there was some concern was that the cyst did have a heterogeneous appearance, although this could mean anything from being benign growth all the way to cancer. He sent me for a follow-up transvaginal ultrasound, which he said was the preferred method for evaluating ovarian cysts, just to be safe.
US Pelvic Transvaginal
The myometrium is heterogeneous but no distinct mass. The endometrial stripe is within a normal range for age. There is a small amount of free fluid. Both ovaries are well-visualized. In the right ovary, there is a partially collapsed but otherwise simple appearing cyst in the right ovary, which on my repeat measurement is 17 x 9 x 15 mm in size. The larger area measured by the technologist is not well-defined and likely includes normal variant parenchyma. Otherwise, there are simple follicles
Both ovaries are well-visualized. In the right ovary, there is a partially collapsed but otherwise simple appearing cyst in the right ovary, which on my repeat measurement is 17 x 9 x 15 mm in size. The larger area measured by the technologist is not well-defined and likely includes normal variant parenchyma. Otherwise, there are simple follicles under 1 cm in size in both ovaries.
- 17-mm partially collapsed but otherwise benign-appearing right ovarian follicle.
The good news was that the cyst itself was benign. The bad news, however, was that the cyst had virtually stayed the same size during the month and a half between testing, despite being collapsed in both scans. Basically, the cyst seemed to be refilling itself over and over with fluid (likely blood), thus explaining the free fluid throughout my pelvis that should not have been there.
The doctor gave me a shot of Depo-Provera, which contains the hormone progestin, in hopes of getting rid of the cyst since it likely wasn’t going to go away naturally on its own. If the shot didn’t help to get rid of the cyst in 6 weeks, the doctor informed me that it would have to be surgically removed. Great…
Lucky for me, however, the Depo did its job and the cyst was virtually gone during the next transvaginal ultrasound.
Just as one surgery was crossed off my list, another one was added. After I met with my new ENT about the results of my head MRI, he ordered a CT of the head to confirm the extent of the damage marked in my first scan. As expected, it only accentuated the fact that I would need surgical intervention on my sinus cavity.
CT Sinus Complete
The sinuses are normally developed bilaterally.
The frontal sinuses are normally aerated. Minimal thickening cannot be excluded in the left ethmoid sinus. Right ethmoid sinus is normally aerated.
There is marked diffuse opacification of the right maxillary sinus, consistent with marked chronic inflammatory disease, and associated thickening of the inferior and lateral maxillary sinus bony wall. Small areas of probable calcification representing debris are noted within the chronic inflammatory tissue.
Minimal thickening is noted involving the left maxillary sinus.
The right ostiorneata complex is obstructed. The left ostiomeatal complex is patent.
Mild thickening is noted in the right component of the septated sphenoid sinus .
There is very minimal undulation of the nasal septum, but no significant deviation.
I just had endoscopic sinus surgery this past Friday, which including a septoplasty, turbinate reduction, antrostomy, and sinusplasty. So far, everything has been going good, except that the recovery has been much harder than I had originally expected. I’ll go over all the fun details, with pictures, hopefully in my next update.
Although all of this may seem like a lot, I still haven’t gotten to the best part – A new vascular surgeon and substantially larger surgery here in the near future – but that is definitely a story I’ll have to share another day.