Q&A with a Spleen Expert

Five and a half years ago, I had my spleen removed because of a large, painful splenic cyst. I started blogging about my experience because there was so little information available online about splenic cysts or recommended treatment. Since then, I’ve received hundreds of detailed questions from people around the world with the same diagnosis.

The doctor who removed my spleen, Dr. Kimberley Kirkwood, has a passion for all things splenic. She’s an experienced surgeon, professor at UCSF Medical School and researcher who has published a variety of studies on splenic disorders and pancreatic tumors.

She and I have kept in touch over the years, and I recently asked her some of the most common questions I hear from readers. Here are her insights and recommendations.

What causes splenic cysts?

There are a variety of known causes of splenic cysts, including infection with a parasite (echinococcus), trauma to the left upper abdomen (such as a car or bicycle accident with injury to the spleen), and tumors (such as lymphoma). Epithelial cysts are another cause, and these are more likely in young women in their 20’s and 30’s and may grow over time.

Should I have a splenic cyst removed?

Since splenic cysts are relatively rare, we don’t have a good understanding of their “natural history,” that is, which ones will cause trouble in the future if we leave them alone. We do know that the ones that have caused an emergency due to rupture or bleeding are usually 10cm or larger. Because of this, we recommend removal if a cyst is >5cm, especially if it is growing, or if it is causing symptoms.

Because of the value of the spleen, we sometimes try to preserve part of the spleen if possible, especially in children. For small cysts, and for some larger ones depending on their location, removal of part, but not all, of the spleen is possible.

However, this procedure, sometimes called “fenestration” or “marsupialization,” is associated with a significant chance of the cyst returning, becoming symptomatic once again and then requiring (a potentially more difficult) splenectomy.

(This is exactly what happened to me, and I had to have two surgeries within 6 months to treat this condition.)

How can I find a surgeon who knows about this condition?

When surgery is recommended, especially for non-parasitic cysts, it can nearly always be done using minimally invasive techniques (laparoscopic or robotic) with smaller incisions, shorter recovery (typically one night in the hospital) and better outcomes than with open surgery.

Find a surgeon who has done at least 50 minimally invasive splenectomies, at least half of which should have been for large (>25 or 30cm) spleens. Most of the time these surgeries will have been done for lymphoma or other malignancies, so a hospital that specializes in treatment of lymphoma/leukemia will usually have a “go to” surgeon for this problem. Surgeons who have experience with large spleens know how to avoid injuries and bleeding.

What vaccinations do I need?

The spleen helps protect against infection from specific bacteria, such as pneumococcus and hemophilus (which can cause pneumonia), and meningococcus (meningitis). Prior to spleen removal (ideally at least 2 weeks before), vaccines should be given for these bacteria to build the immune system, per the recommendations on the Center for Disease Control (CDC) for “asplenic” individuals (those without a spleen.)

You should get:

• Pneumococcal vaccine (23 valent) to protect against pneumonia
• Haemophilus influenza vaccine (Hib) to protect against pneumonia
• Meningococcal vaccine (quadrivalent) to protect against meningitis, 2 doses at least 2 months apart

You’ll also need boosters. As of 2016, the recommended boosters include a 2nd pneumococcal vaccine and meningococcus B eight weeks after the 1st set. You’ll also need to get another pneumococcal vaccine five years after the initial vaccination. The CDC’s recommendations for boosters change often, though, so you or your doctor need to check the CDC website at least once yearly to have the most current information.

Can I travel and be active after my spleen is removed?

Yes, but you should take some precautions. After your splenectomy, you will be at increased risk for contracting Malaria. Avoid travel to places with high rates of malaria, and if you do travel to places with mosquitoes that may be carriers, use repellent and wear long sleeves and long pants.

You will also be at increased risk for Babesia, a disease carried by certain deer ticks. Babesia is commonly found in the Northeast and Upper Midwest of the United States. If you do travel to these places, wear long sleeves and long pants and always perform tick checks following possible exposure.

In addition to mosquitoes and ticks, dog bites should also be avoided and treated promptly.

In general, you must be proactive in seeking medical care upon signs of infection. If you develop an unexplained fever, seek medical assistance right away.