When you have a chronic or rare illness, your “job” title quickly changes over to “professional patient”. This article is poignant in pointing out the many deficits that modern society places on those with disabilities, while suggesting changes to the paradigms of both chronic illness and those receiving disability benefits.
Source: Being Disabled Is a Job
If you haven’t had the chance to read this post as of yet, I highly recommend checking it out. It really puts the feelings of what it’s like to live Undiagnosed into words.
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:
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.
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:
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.
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.
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.
Endonasal endoscopic approach to the pterygopalatine fossa. (A) Maxillary antrostomy made in the medial wall of the maxillary sinus. A mucoperiosteal flap is reflected posteriorly to the crista ethmoidalis (CE) to expose the sphenopalatine artery (SPA) and posterior nasal artery (PNA) emerging from the sphenopalatine foramen. (B) Crista ethmoidalis and sphenopalatine foramen are enlarged with a drill. The posterior wall of the maxillary sinus is removed in a medial-to-lateral manner to the edge of the infraorbital nerve (IN). Elevation of the large fat pad, occupying the pterygopalatine fossa, exposes the internal maxillary artery (IMA) and its branches, the sphenopalatine and posterior nasal arteries, which are clipped and ligated. (C) With the use of a drill or Kerrison rongeur, the greater palatine nerve (GPN) is safely mobilized from its bony canal inferiorly. Gentle lateral retraction of the ganglion and GPN reveals the vidian nerve (VN) emerging from the vidian canal (VC) and exposes the pterygoid plate. (Reprinted with permission the Mayfield Clinic.)
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.
For the next 24 hours or while taking narcotics:
CALL 911 OR REPORT TO THE ER IF YOU HAVE…Chest pain
CALL YOUR MD’S OFFICE FOR…
ACTIVITY
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.
DIET
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:
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.
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.
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.
Know everything about narcissists from the world's no.1 source. A narcissist himself.
Diamonds start as lumps of coal... but sometimes the reward for a trying fire is a Ruby
| living with a rare, invisible, genetic disease |
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