Hemophilia can add risks to any surgery you might get. The risk of uncontrolled bleeding is higher in those with hemophilia, so surgical teams need to follow specific hemophilia surgery guidelines, and you may need to take extra steps during preparation and recovery.

It’s important to work closely with your hemophilia treatment center (HTC). Your HTC team can help you find a surgical team experienced in treating people with bleeding disorders. A knowledgeable surgical team can help you prepare for surgery, monitor your recovery, and improve your chances of a positive outcome.

Here’s a look at the risks of surgery in people with hemophilia, what to expect, and what MyHemophiliaTeam members have said about their experiences getting surgery.

🗳️ Have you experienced bleeding or complications from surgery while living with hemophilia?

Yes, major bleeding or complications

Yes, minor bleeding or complications

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Surgical Risks With Hemophilia: What Research Says

With the right planning and care, you can reduce your risk of bleeding during surgery to about the same risk as the general population. Preoperative treatment options for hemophilia have advanced considerably in the past few decades and now allow people with hemophilia to undergo surgery relatively safely.

With the right planning and care, you can reduce your risk of bleeding during surgery to about the same risk as the general population.

Before the use of prophylactic factor replacement therapy, the mortality rate for people with hemophilia A who underwent surgery was 60 percent. By 1980, the mortality rate for people with hemophilia A undergoing surgery had dropped to around 5 percent thanks to the use of factor replacement therapy.

More recent research evaluated the outcomes of major surgeries undergone by people with bleeding disorders, including hemophilia A, hemophilia B, and von Willebrand disease. In this study, 4.8 percent of participants experienced serious bleeding after their surgeries, and an additional 1.6 percent had less significant bleeding episodes.

Types of Surgeries Common for People With Hemophilia

Although surgery doesn’t treat hemophilia directly, people with hemophilia may require surgery to treat complications like joint damage from hemarthrosis (bleeding directly in a joint). Others may need a port placement so they can receive clotting factors without a needle stick each time.

Although some surgeries are more common among people with hemophilia, bleeding disorders can impact the process of getting any surgery. This is especially important to consider as the life expectancy of those living with hemophilia increases, and age-related conditions may require a person to undergo more surgeries as they age.

As the life expectancy of those living with hemophilia increases, more people need surgeries for age-related conditions.

The following surgeries are among the most common for people living with hemophilia:

Synovectomy

Synovectomy is a joint surgery that removes the joint lining, called the synovium, when a joint is damaged. The joint lining can thicken in people with hemophilia because of bleeding in the joint, which causes joint inflammation. Thickened synovium releases a fluid that damages joint cartilage.

People with hemophilia often require synovectomies and other orthopedic surgeries after repeated joint bleeds. Your care team might suggest a synovectomy for repeated joint bleeds in a wrist, ankle, elbow, or any other joint with a synovium damaged by hemarthrosis.

Joint Replacement or Fusion

Arthroplasty (joint replacement) goes a step further to treat joint problems from hemarthrosis. Total knee replacement is the most common type of joint replacement surgery for people with hemophilia.

One MyHemophiliaTeam member described a positive experience with joint replacement surgery and the recovery. “I’m just five weeks post-op from ankle replacement surgery,” he said. “I’ve gained almost full mobility back with absolutely no pain!”

Joint fusions may be recommended as an alternative to total joint replacement. Some MyHemophiliaTeam members have had positive results from joint replacement, too.

“I had fusion in my right ankle in 2011, and in the left ankle in 2016,” wrote a member. “Haven’t had any pain in either for just as long. Best decision I ever made. The recovery process is a little long, but I can’t imagine my life before I had this done anymore.”

Port Placement or Removal

Some parents of children with severe hemophilia opt for their children to have a port placement so that clotting factor is easier to administer. Having a port can help you avoid daily or weekly infusions of factor concentrate. Port placement and removal are both done as surgical procedures.

MyHemophiliaTeam members have shared experiences with port surgeries. In response to one member expressing hesitation about port placement surgery, another said, “I was always doubtful about a port. However, I just recently got one on my thigh, and it’s been awesome.”

Another MyHemophiliaTeam member had a less positive experience with port placement. “Second day after surgery to implant a port in my chest. Infusion before surgery and for two days following surgery. Worst bruising I’ve ever had. Soreness, too.”

What To Expect While Getting Surgery With Hemophilia

If you have an elective surgery, you can expect to plan and take steps to prepare. Preparation can reduce the risk of hemophilia-related complications like excessive bleeding.

Your surgical team can help you prepare for surgery to reduce the chances of bleeding-related complications. They can also provide support during your recovery. Here’s a quick look at what you can expect:

Preparing for Surgery

Planning for surgery is perhaps the most important step in having a safe surgical experience when you have hemophilia.

Your surgical team should work together with your hemophilia treatment center to create a safety plan for before, during, and after surgery.

During the planning period, your family or caregivers, hematologists, anesthesiologists, surgeons, and professionals from your HTC should work together to make sure you have a safety plan in place. That plan may include steps like:

A study from a hemophilia treatment center found that preoperative factor replacement therapy was recommended for over 92.1 percent of people with bleeding disorders receiving surgery.

One MyHemophiliaTeam member described their experience with receiving factor replacement therapy before a rotator cuff surgery. “I have mild hemophilia and have to have factor VIII (8) with surgeries. I had a rotator cuff repair last year. My hematologist worked well with my surgeon. Things went very well.”

Another member noted the importance of working with a specialist before surgery at an HTC: “I’ve had extensive surgeries done. With preplanning and my HTC doctor’s orders in place, I haven’t had problems related to bleeding.”

Tests and Screenings

You’ll need an inhibitor screening before any major surgery. This blood test can tell you if you’ve developed any new inhibitors that may stop factor replacement from working properly before a surgery.

If you have mild hemophilia A, you may also need a test dose of desmopressin (DDAVP) before getting surgery. DDAVP may help raise your factor levels before surgery.

Emergency Surgery

Some surgeries are needed during an emergency, which makes planning a little more difficult.

In the case of an emergency surgery, you won’t have as much time to plan. However, your care team may deliver urgent factor infusions before your operation.

What To Expect After Surgery

Your care team will also support you during recovery after your surgery. Depending on your type of hemophilia and the details of your surgery, you may need clotting factor concentrates during and after your surgery.

Your care team may want to monitor you for any newly developed inhibitors after surgery. If you had orthopedic surgery, physical therapy may also be part of your postoperative care plan.

Talk to your care team about safe recovery guidelines, and keep in touch with them in the days and weeks following your surgery.

The Importance of an Experienced Care Team

MyHemophiliaTeam members agree that having an experienced medical team is crucial for getting the best possible outcome from surgery with hemophilia. One member noted, “It’s great having a hemophilia team involved during surgery, so the entire medical team for surgery knows exactly what’s going on.”

It’s important to work closely with your healthcare providers leading up to your surgery and throughout the recovery process. Talk to the professionals at your HTC about preparing ahead for any surgery you may need.

Join the Conversation

On MyHemophiliaTeam, people share their experiences with hemophilia, get advice, and find support from others who understand.

Have you undergone surgery while living with hemophilia? Let others know in the comments below.