Living a seronegative life isn’t always the most pleasant for those of us with autoimmune diseases. Instead of having our symptoms justified by positive bloodwork, we have to rely on a slew of other diagnostic methods to be taken seriously by many doctors and insurance policies.
Around five years after my onset of dry eye disease – and a change in medications for my autoimmune disease – I began to experience dry mouth. Once I had both types of dryness, in addition to other systemic symptoms, my doctor began to consider Sjögren’s syndrome as a possible part of my autoimmune issues.
Since I have never tested positive for traditional Sjögren’s antibodies, aside from one positive antibody on an early screening panel, my best chance at a Sjögren’s diagnosis was a lip biopsy (or salivary gland biopsy).
Delays from anxiety and illness.
I’m very grateful that there is a Sjögren’s specialist in my city. I met with him to undergo initial testing and I scheduled my biopsy. I then promptly contracted strep from one of my preschool-aged children. Then another cold and another, followed by surgery on my nose, and several more colds until I finally completed the six month long stretch of illnesses with another round of strep.
This was the ironic nudge that finally got me to call and reschedule the biopsy because no part of me truly wanted to do it, but I needed to get it done. I needed to know. Moreso, I thought I simply would be getting the confirmation of my diagnosis for once.
The week of my biopsy I was very much on edge. There are quite a few stories online about unpleasant experiences. However, the doctor I saw is an oral surgeon who does these biopsies nearly every day. Furthermore, he specializes in Sjögren’s and is running a research study via the biopsies to study the genes that may possibly be involved with Sjögren’s syndrome.
My biopsy appointment.
I arrived for my appointment and went back to the “operatory” room almost immediately. We went through vitals, medications, a little medical history, and many consent forms. One thing that I had not anticipated in my preoccupation with the physical pain was all of the charges involved in an otherwise simple biopsy.
There were charges for the procedure, for each salivary gland that would be removed and processed, and separate charges for the processing facility where my samples would be sent. I’d already met my deductible, but I could tell the total cost would be quite high nonetheless – especially if anything was rejected by my insurance.
My doctor examined my lower lip and chose the left side for the biopsy. He placed a numbing gel in the area while the research assistant went through more paperwork to discuss the study. They only use surplus tissue that has to be removed during the procedure anyway, nothing extra would be performed. I am super pro-research and so grateful that this disease is being studied, so I gave my consent wholeheartedly.
The doctor popped back in to give the first numbing injection, which is exactly like the kind you receive when having a dental filling except that it’s placed into the lower lip. The medical staff continued to tell me what to expect and talk about post-op instructions. My anxiety was barely kept under control at this point but I’d already committed and knew I needed to go through with it.
If you read about Sjögren’s biopsies online, there is a lot of negative information out there. At least, that has been my experience. I’ve read stories of people that felt they were butchered by a doctor, that the biopsy was performed horribly, and some people have permanent numbness at the site of their biopsy.
Most of the people who write these stories have gone to an ENT to have their biopsy performed. As long as you go to a highly trained and experienced doctor this shouldn’t necessarily be an issue, but many people seem desperate for a diagnosis (and answers) and end up with a less than ideal medical professional. I felt relieved that I was able to go to an oral surgeon for mine. And, even though I was at the best of the best for this procedure, there was still some risk of unpleasantness.
My doctor said that his rate for patients with permanent numbness is about 1 in 35. I hope very much that I am one of the 34, but at the same time, I have to accept the risk that I may live with numbness beneath my lower lip forever. Looking back, I think my form of acceptance was really just denial that it would ever happen to me, since I couldn’t handle the thought.
According to the doctor, there’s just no way to know where the nerves in my lip are before he opens the site, and there’s no going back once you begin. If only I wasn’t seronegative or if we were further along in being able to diagnose people like me another way.
He also told me that there will be a bump from the procedure and sutures that should ideally go away completely with time. There will also most certainly be a bruise that lends way to curious looks in my direction for up to a week. He explained that he would be removing around 7 salivary glands, which is approximately 1% of the 700 that are located throughout the mouth.
Once my doctor gave the second numbing injection, they began preparing the space. Gowns were donned, surgical instruments were brought close, and I began reciting all the incredibly annoying songs from my son’s favorite TV shows to distract myself. The numbness was in full effect and I only felt some tugging and pressure. I struggled to stay calm about having my inner lip cut open, glands removed, and pain in the area (I’m so tired of the many forms of pain I endure on a regular basis; chronic and acute).
It seemed like the procedure was 5-10 minutes, but it was likely even less than that. The stitches were inserted with some gauze Afterward he let me see the samples that were taken for my biopsy and the ones that were extra and being sent off for the research study (once he opens the area, he has to remove all the glands within or there is a higher risk for permanent damage). I’m excited that I could contribute to research. The tiny, red and white salivary glands danced in a small container like they were thrilled to be freed from me.
Post-procedure instructions.
The instructions were easy enough to follow but higher in number than I expected. These were most of the guidelines I was given:
- Remove the gauze after 45 minutes and do not reapply as the area needs to stay moist.
- Stitches may fall out later in the day, dissolve as soon as five days, or need to be removed at the two week follow up appointment (what finicky things).
- Begin an alternating regime of ibuprofen or your NSAID of choice and Tylenol for 24 hours to 3 days, as pain requires.
- Do not chew until the numbness wears off, then chew on the opposite side from the biopsy.
- Eat primarily soft foods and avoid straws for 24 hours; take care to avoid anything hot, spicy, or crunchy (I bought lots of ice cream).
- While avoiding sutures, keep your mouth as clean as possible and rinse with warm water starting the day after the biopsy.
- If you experiencing anything more profound than oozing at the suture site, call the office or after hours on-call doctor.
I was walking out of the office 50 minutes after my appointment time. I drove home, began my OTC pain medication routine, and ate ice cream once I was mostly un-numb – more for comfort from going through the ordeal than anything else. Now to recover and wait two more weeks to know what the biopsy would reveal!!
This is what I looked like immediately following the procedure; surprisingly the bruise was slight and went away in a few hours.
My recovery from the Sjögren’s biopsy.
I was fairly miserable after the numbing anesthetic wore off. It was hard to speak and chew. The first 24 hours were indeed the worst and there was elevated pain for 72 hours. However, it hurt more than I expected over the following week.
Even a week after the procedure I found it quite painful to do things such as spit out water after brushing my teeth or applying chapstick to my lip. Anything that required making my mouth an “o” shape was quite painful as it would stretch the site (I realized this specifically as we were going through an e-i-e-i-o phase with my youngest). Even now, three weeks later, it still hurts if I touch it (such as absentmindedly leaning on my chin with my hand or being a little too harsh when brushing).
I also had issues with the stitches. They did not fall out, as they typically do, and drove me nuts. I took a picture of them the day before I was going to have them removed. I don’t want to insert it directly into this post, as I imagine not everyone wants to see it, but you can view the photo by clicking here.
The doctor was very surprised when I showed up with my sutures still in my lip. He said that they probably didn’t dissolve because my mouth was too dry. Of course. I was just glad he was going to take them out. He put some local anesthesia on first and then removed the sutures and assured me that I was otherwise healing well.
I was hoping that the numbness I was feeling since the biopsy was more just glorified irritation from the stitches but, 1.5 weeks later, I’m still feeling numbness in the biopsy location, which was on the left side of my interior lip. This isn’t talked about all that often, but numbness can actually be painful (I learned this after my septoplasty when my upper teeth were numb for several days – that hurt very much).
I’m truly distraught that I have numbness. So much so that I can barely talk about it or think on it for too long. It’s affecting my speech and eating, and it’s still very uncomfortable and sometimes painful. There’s also a fairly significant bump in the area that should minimize with time, but I’m starting to wonder if it will go away completely.
As the doctor said, it’s a low percentage of people that get it. Even though he told me that it’s permanent, I read on Johns Hopkins that it should only last for 2-3 months. My rheumatologist also told me that any sort of nerve damage will typically improve over one year, so those two statements are giving me hope, even though it’s miserable right now.
My Sjögren’s biopsy results.
Having to wait two weeks to be told the results in person gave me a lot of anxiety. The night before I asked some friends to pray for me to be able to stay calm and that worked… right up until I pulled into the parking lot for the doctors’ office. At that point, I started to get shaky and get that sick feeling that can accompany extreme anxiety.
I was called back and the resident set about getting things ready for the doctor to come in and look at the biopsy site. I sat there wondering why she would delay at all when I could hardly stand not knowing the results.
She pulled out my report and explained how they had sent the glands out for testing – I didn’t hear any of it because I just wanted to know the results – and then she flipped the page to tell me that the value for my glands was 0.0 (which I’ll elaborate on).
I was shocked. I was so certain that I had Sjögren’s and that this was the only way to prove/know it for sure. I felt like the 0.0 value was a slap in the face. With my extreme dryness, I couldn’t even have a 0.1?!
I couldn’t find any words. I sat with the lab report in my hands just staring at the value. There were 0 white cells in the glands, meaning no indication of Sjögren’s in my salivary glands. I felt an extreme wave of sadness and just numbly complied for the rest of the visit.
I could still be in the research study, but I’d be used as a control, is that ok? Sure, whatever. We need a saliva and blood sample, as well as a cheek brushing for skin cells. Sure, whatever. Do you need anything? No, I’m fine.
I asked the doctor, “How could I have such extreme dryness and not have Sjögren’s?” He said there are many people like me. People who have the symptoms but not the disease. Or, have the disease but it’s too early or not present in the glands at the time. I do not understand how I can have this level of dryness without a cause. I’m glad this doctor and others are studying it because I feel like we are missing something. I left his office that day unable to fully process my disappointment.
And what’s worse is that there are only two medications for dry mouth and I may not be able to take either of them (it’s complicated). I’m not sure what to do. The doctor gave me the option of flushing out my glands, which may or may not provide relief, but now I’m rather terrified of having any procedure done due to the residual pain from the last one. He also recommended a device called a SaliPen that I may try at some point, but I hope it doesn’t come to that.
I spoke to my rheumatologist about changing up my systemic treatment in order to hopefully improve my dry mouth. But she pointed out that my score of 0.0 meant there were no white cells, so I would not benefit from switching to a medication that targets white cells.
The value I received of 0.0 was my focus score. This is representative of clusters of inflammatory cells that are found in at least 4 square millimeters of gland tissue. My sample was 19.75 square millimeters of glands, and yet the number was still 0. The focus score needs to be 1 or greater to receive a Sjögren’s diagnosis.
Moving forward with yet another negative result.
I am feeling everything from distraught to confused to slightly relieved. I mean, Sjögren’s is not a disease I want to have – it can be very harmful. But I do want answers. And I’m confused as to why I have so many Sjögren’s symptoms; not just the dryness, but systemic ones as well.
Also, despite testing negative in my bloodwork and my glands, I might still have the disease. Or I might not; my dryness might be idiopathic (of unknown cause). Or it might be from a disease we haven’t identified or perhaps doctors haven’t discovered yet.
The unknowingness is so hard to live with. That, and the painful dryness that we can’t explain or treat all that well.
I do feel regret about having the biopsy done. But it’s a strange feeling because I could not have known the outcome, and I felt strongly about having the procedure done. It’s not like I could go back and make a different decision.
It’s just so much to take in: the anxiety about the procedure, the pain of the recovery, the shock of an unexpected negative result, the uncertainty and lack of treatment options, and the distress of having to deal with daily painful numbness. It would be a lot for anyone.
I know my story may be discouraging to others. I hope to come back next year and report that the numbness has left and that I’ve worked through my grief and regret about having the biopsy done. I simply don’t know what will happen. I know that some people will have similar experiences and some people will have better ones.
I hope that sharing this tough story is helpful to someone out there. Thanks for reading and let me know if you have anything to share in the comments or you can send me an email (mymeenalife@gmail.com).
Featured photo via pexels.
Pinterest photo via pexels; edited by My Meena Life.
