I am diligent about oral care. I use an electric toothbrush, floss every day and visit my dentist every three months. The reasons for this diligence are many, but most of all I fear bleeding from dental procedures.

Bleeding from the mouth and gums is common in people with von Willebrand disease and hemophilia. Some federally funded hemophilia treatment centers even offer dental care as part of their services. I don’t need medication before a dental cleaning. However, oral surgery and injections pose a bleeding threat.

Oral surgery

I am no stranger to dental issues. In college, an oral surgeon removed four of my teeth for braces in a hospital under anesthesia. At the same time, I underwent a minor knee operation. There wasn’t much bleeding during the operation, but I oozed from my mouth and knee for weeks afterwards.

Sometimes my knee and my mouth would bleed simultaneously. Blood frequently seeped through the scarf and bandage on my knee. There was no pain, but the sight of blood coming through the bandage was enough for the school nurse to send me home.

I played the flute in the band and became skilled at playing while squeezing the gauze to stop the bleeding. The blood-soaked gauze must have been so coarse that my classmates witnessed it.

In my early twenties, I had all four wisdom teeth pulled out. Due to the bleeding issues years earlier, the oral surgeon refused to remove my wisdom teeth until I visited my hematologist to come up with a better treatment plan. He pulled my teeth out without a hitch thanks to the plan to increase my factor levels for the 10 days following the operation.

The long needle

In my thirties, I was in my “don’t know I have a bleeding problem” phase of life. Previous treatments had put me at risk of contracting HIV and hepatitis. I’d be damned if I had factor, fresh frozen plasma, or cryoprecipitate infused through my veins.

I had a cavity in one of my back molars during this time. A stroke with a long needle, called a mandibular nerve block injection, was used to numb the area before filling. I did not mention my bleeding problems to this dentist, as per my “ignore the problem” phase.

As soon as the needle pierced my skin, I felt a warm, tingling sensation in my jaw and searing pain unlike anything I had felt before during dental work. A few minutes later, I was numb. The dentist asked me to open my mouth so he could start. I tried, but my mouth would only open an inch or two. I tried again – still, my jaw wouldn’t respond to my muscles trying to open my mouth.

Yelling at the dentist through my clenched jaw was a comedic and futile effort. What happened? I started to panic. Would this be my life from now on? Was my mouth permanently closed? All the weight loss and “you talk too much” jokes aside, I was truly terrified.

The dentist was as frustrated as I was. He said he had never seen this happen before. He pulled out a device to help keep my mouth open as little as possible and started working on my tooth. Unsurprisingly, weeks later the filling had to be redone. I should have run when my jaw locked.

Jaw bleeding

When I visited a new dentist, he asked me about my bleeding disorder and asked if I could speak to my hematologist. They concluded that I had a jaw bleed from the filler injection. This incident caused permanent damage to my jaw. My mouth opens, but not as much as before. Luckily, I haven’t needed any procedures that required a mandibular block injection since, but you can be sure I’ll be on medication ahead of time if I do.

If you are living with a bleeding disorder, I implore you don’t ignore your oral health. Be upfront with your dentist about your condition and be sure to involve your hematologist in your dental care when needed.

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