Thursday, October 6, 2016

"Mom had a Rock in Her Neck"

Warning: Medical conditions aren't fun.

Last summer I had a large stone removed from my neck. I want to say it "was like" but "wasn't" a salivary gland stone. Because my submandibular gland was removed 8 years ago. Which means this stone must of been growing in my scar tissue all these years. What a nightmare. This will probably be the longest Blog I ever write because it was such a long nightmare.

Let's back up to 2006. Over Mother's Day my husband's Grandmother was visiting from Germany. We were all outside enjoying the warmth, we grilled out, and as I ate, my neck started to swell up and made my whole right side of my face and under my chin, swell up too. It looked like I had the mumps. It stretched my skin so tight. A few hours after eating the swelling would go down. At this point, I'm so confused. Day after day, I'd eat and swell up on the right side of my face and neck. It is always sore and starts hurting immensely with every meal. I start not wanting to eat because the swelling and pain takes me to tears. 

In 2006 there was barely any information on the web about salivary stones.
I search the internet but spun in circles. Nothing fully fit what was going on inside my body. I am living in misery. After days of searching the internet, I stumble across an article on salivary gland stones. Finally my symptoms come together and I think I figured out what's going on. 

I decide it's time to see a doctor. I called one and immediately got an appointment that day. The doctor thought it looked like I had the mumps, but since the swelling comes and goes with eating, she was stumped. I suggested salivary stones to the doctor, who  quickly left the room to google these stones. 

Back then we didn't have tablets or smartphones. Agreeing with my self diagnosis the doctor referred me to an otolaryngologist. Which is an ENT, Ear, Nose, and Throat doctor. I was scheduled to see him in 3 days. All the doctor could do was suggest I suck on sour candy to keep the gland draining. This did nothing more than make my tongue raw or back up a clogged duct even more. 

After a year the doctor said we should remove the gland. He said it would take a week to heal so we scheduled it right before spring break. After surgery I woke up miserable. I had a drainage tube and stitches in my neck. The doctor said my submandibular gland was swollen and enlarged to the size of his fist.

Three days later began the beginning of a small nightmare. The ENT "milked" my gland and was able to pop out a few stones. Instant relief would come because the gland would drain and the infection built up inside would also drain. Your salivary gland are located in many areas around your neck & face. Even behind your ears. My infection was in my Submandibular gland. This gland is located under your jaw, in your neck, the duct runs along your entire tongue and delivers saliva out under your tounge. 

Now go look in a mirror. Those two "gleeking" wholes, under your tongue, are where the gland drains. One for each side of neck. Imagine trying to squeeze a rock, with sharp jagged points on all sides, the size of a sunflower seed, out of this tiny whole. At one point the ENT had to cut the gland opening under my tongue to help the stones to "pop" out. I should of saved the stones in a little vial. Not really. Yes, Really, I'd shake them and listen to them jingle. They are calcium build up stones just like kidney stones.

For a year we maintained the constant pattern of gland back up - swelling - gland/ duct stone appearance - infection - stone removal - pain - antibiotics - which were constantly given to treat the infected gland. I think to a point I was immune to them.  After the surgery I never felt better, just worse, and by the fifth day I was told I could shower. By this time a massive infection set in and when I patted my neck dry (stop reading if you get grossed out, skip to next paragraph) puss leaked out of the incision site. Obviously it was building up since the surgery and oddly it gave me instant relief. I knew, however, it was not a good sign.

The doctor of course acted like he could not understand why an infection happened and gave me a stronger antibiotic. (Maybe incompetence or to many patients?) With in 4 weeks my infection still would not go away. I was scheduled for a second surgery.  I was depressed, panicked and giving up hope. The doctor gave me a second surgery to clean out my wound. He also removed multiple small stones. Not sure how he left them in there, Maybe the gland leaked during removal? He cut open my mouth to remove stones stuck in the duck. I could not eat for 4 days and had stitches in my mouth this time. I now "gleek" in a different direction. The gland and duct have changed shape from the surgery. 

This still didn't heal the wound. I spent the next two months going to the doctor weekly and having the wound packed with gauze. I would have to pull some out each day and cut a piece off. Or my husband would do it. It was still painful misery. And kind of gross. 

Here I am 3 months later finally pulling the last bandage off - the week before my wedding!!! I had the worst scar, it was butchered open twice and packed like crazy. What was supposed to be "a week of healing " and "you'll be just fine" turned into 3 of the worst months of my life.

Now let's fast forward to July 2015. I went to the park with our church and was in the sun all day one Saturday. I did not drink enough water at all. The next day, Sunday, we went rafting. I did not drink enough water still and decided to drink one beer. Big mistake, beer dehydrates you. I remember feeling so dehydrated but having to focus on rapids before I got a break to unstrap the cooler for water. 

As I battled through the rapids I considered drinking river water, I was that desperate. I finally got into the cooler and drank a bottle of water. However, my gland was swollen along my tongue. I knew something was wrong. It has acted up over the years, by swelling and being sore, so I took it as a warning to step up my water intake. I thought if I could drink enough water it would feel better. 

I spent a whole week drinking water to the extreme. Living in denial because I was having flashbacks to the months leading up to my wedding. What most woman spent soaking up the joy, I barely finished my semester. Failing my one and only class ever than, it was pick 3 and focus or fail all. I made it the whole week. I kept drinking water but nothing got better. I was in denial that something could be wrong again. 

By the following Saturday it was infected, swollen and puss was coming out of my duct. I knew it was clogged and there was no way I could do a thing to make it heal. There's no turning back. It was time to go to the Emergency Room. My husband and daughter went with me Saturday night to the E.R. Thankfull it was empty and we were taken right to our own room. I brought a bag of toys so my daughter would stay busy. She was more interested in them drawing my blood and how Mom is not afraid of needles. A bag of fluid and a bit of morphine started making this Momma feel better. This is the result:

I know my body and history, so it was easy to tell the E.R. doctor exactly what was going on. He sent me for a C.T. Scan.

See the lima bean looking white spot under my teeth? That is a giant salivary stone which formed and/or grew in my scar tissue. The doctor told my husband it was the size of the tip of his finger. He even told me " you sure know my body", because you were exactly right"! Now if every doctor would listen to those of us who listen to our bodies. We could save millions in healthcare expenses. I'm the queen of medical bills. That's a whole other post. (Longer than this one!) 

I had my 2 surgeries in 2007 at Memorial Hospital. I wonder if it was a snip happy doctor or a dirty operating room. This time my hopes are up because I will be seeing the ENT for St. Francis Medical Center. Then I see the name on the paper, it's the same ENT from before. Ugh, he switched hospitals and is the only surgical ENT on board. I start praying. 

I got to call the hospitals ENT office first thing in the morning on Monday. They say I can't be seen till Tuesday even though the E.R. referred me. By now I'm in so much pain, swollen and ready to drive myself to the E.R. My beautiful friend Laura says she will meet me there. I pull in the lot and this Amazing woman tells me we are going to the ENT's office first. She's a mom of 7 and if I can remember correctly, the grandmother of 15. She is not going to take No as an answer. We go sit in the ENT's office until I am seen. She goes to the desk many times to push me in. It works. 

I am seen by the doctor. Who is met with a "remember me" ( your worst nightmare) half cry, half smile. He scheduled me for surgery the following morning. He is shocked again that it was growing all this time and says a slight movement could of caused all these problems.
 Yet my mind keeps thinking how he caused all these problems. 

Luckily I wake up from surgery with out a tube in my neck. I praise the Lord. I don't know if mentally if i could of handled that again. My recovery may need to be at Cedar Springs if that was the case. My mouth however is swollen and sore. The ENT was able to push the stone out of an incision in my mouth under my tongue. He cut along the duct and lifted it up to dig out the stone. I was told I could not eat for 9 days. 

DID YOU HEAR ME? 9 long hungry days! Did he not realize he told a metformin taking fat girl not to eat. I learned for the first time talking burns calories and energy. There were moments I would sit in silence because it took to much energy to talk. I drank broth and milkshakes. I have not drank one shake all summer or maybe ever because it reminds me off this week and tastes gross now. So many times I thought I'd pass out from low blood sugar. Did he not read my chart? I take metformin and had blood sugar crashes constantly. Fat girls can't not eat? I did lose ten pounds but gained 15 back because it was lost from starving myself. 9 days later I as given the clear.

I think my healing was different for two reasons. I had a daughter to get better for. I felt guilty everyday of recovery, especially when I could not let her bang or play music. I felt guilty it was summer and we could not go play. I felt guilty I did not have someone to watch her some for me so she wasn't stuck inside with me. Best of all, I know God was not letting me go through this alone. I knew I woke up in recovery with Jesus holding my hand. None of these things were with me through the past surgeries. I now know a little faith has taken me a long way. 

Till next CT scan......


  1. UGH! THAT'S SO AWFUL! I'm so sorry for you! I hope you are entirely healed now!

  2. Yikes! Never heard of throat stones!