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What is on your mind?

After a neurofibroma diagnosis, you will need to consider which treatment option is right for you. When making this decision, your doctor and healthcare team will ensure you are pursuing the best treatment path to address your unique individual condition. In the case of neurofibroma removal, this same team can walk you through all of the specific details about the procedure. However, it is always helpful to come armed with information to your consultation. Use the information below to have an open and informative dialogue with your doctor about what to expect from neurofibroma removal.

What is a neurofibroma?

Neurofibromas are small, typically benign tumors that grow on the outer layer of the nerves. This covering is known as the nerve sheath. It is comprised of a tough outer layer and helps to protect delicate nerve tissues.

When a neurofibroma grows too large or causes pressure against a nerve, removal may be the best option to help resolve symptoms.

Symptoms of neurofibroma

Neurofibromas in most areas of the body don’t tend to cause symptoms until they grow large enough to press against a nerve. Those that grow on the nerve roots of the spine, however, can cause fairly significant symptoms if left untreated.

The symptoms often associated with neurofibromas of the spine include the following.

  • Balance and coordination problems, such as clumsiness or difficulty walking
  • A reduction or change in sensation, such as numbness, tingling or pain, particularly in the limbs and extremities
  • Bowel or bladder control issues, including incontinence
  • Development of scoliosis due to muscle changes or degradation of bone

Neurofibroma surgery

Neurofibroma removal surgery in the spinal area is different from that of neurofibroma removal in other parts of the body. This is due to the delicate nature of all of the surrounding structures in the spine. In most instances, your surgeon will use an endoscope and other specialized instruments, allowing them to work through a small incision, causing little trauma to the surrounding tissues and expediting recovery.

Procedure Overview

Spinal neurofibroma surgery is done in an accredited surgical facility or hospital under general anesthesia. This means you will be asleep for the duration of your procedure. The day of your surgery you will check in and be prepared for surgery. This may include the placement of an IV catheter for fluids and medications, presurgical bloodwork to check on organ function and a consultation with your anesthesiologist. You will then be placed under anesthesia and taken to the operating room.

Once you are prepped, your surgeon will create a small incision near the site of your neurofibroma. Using specialized instruments the tumor will be carefully separated from the nerve sheath. In instances where it has grown into, and not just on the sheath, it may be necessary for your surgeon to close the hole where the tumor once was.

Immediately After the Procedure

Once your surgery is complete, the surgeon will close the incision or incisions that were made to access the tumor. You’ll then be moved to the recovery ward for observation. Once you are awake and your vitals are stable, you will be moved to a room for the remainder of your hospital stay.

Most people can expect to spend anywhere from 1 – 3 days in the hospital following their surgery. You may require less or more time, depending on your unique circumstances.

You will be given pain medication to help with any discomfort; your doctor will send you home with either prescription medications or over-the-counter pain relievers, depending on the level of pain you experience.

Week One

When you’re back at home you will probably be more tired than usual and feel the need to take it easy. Don’t ignore your body’s request for rest. This reaction is normal following surgery. If you put too much stress or strain on your body, it may slow healing and result in a poorly-recovered surgical site.

Make sure you have adequate help at home for the first week or so following surgery. You shouldn’t be doing anything strenuous, such as housework or laundry. If you have smaller children at home, it is also advised that you seek out childcare so that you can concentrate on resting and recovery.

A balanced, nourishing diet is a key element in a successful recovery. Your doctor’s office can provide you with advice on what to eat to help provide the proper nutrient levels. Protein, in particular, is important for repairing damaged tissues.

It’s also advised that if you smoke, you continue to remain smoke-free for the duration of your recovery. Smoking has been linked to slowed or even a failure to heal with procedures such as spinal fusions (spinal fusions are occasionally performed in conjunction with tumor removal).

Week Two

By the second week, you should be feeling a little more normal and back to your old self. Your energy will be returning and you may be tempted to take part in your regular activities. It’s important to heed your doctor’s instructions and not overdo it during this time period. While you may be feeling stronger and more energized, there is still a tremendous amount of healing taking place within your body.

During this second week, you may also need to return to your surgeon for a follow-up to ensure everything is healing as expected. At this time an MRI may be performed to help monitor the internal structures at and around where the tumor was removed.

Weeks Three through Eight

As time passes you will become stronger and notice the surgical site less and less. By the fourth or fifth week, your incision will be healed. Despite the skin being healed, it’s important to remember that you still need to follow your surgeon’s after-care instructions. The inner structures such as the nerve sheaths will still be repairing themselves.

Around week three or four you’ll be able to return to your job if it’s low-impact. This includes jobs that allow you to sit for the majority of the day. Even if this is the case, it’s important to get up and move around regularly — there are even phone and computer apps that will remind you when it’s time to take a break.

If you work in a more strenuous profession, you may need to wait until 6 weeks or even later before you’re cleared to return to work. This may be especially true if you’ve had a spinal fusion in conjunction with your neurofibroma removal.

Continuous Care

Continue to attend any physical or occupational therapy sessions you’ve been prescribed. These are an important part of the healing and recovery process.

You will need to have regular follow-ups to check on your surgery. These, too, are essential, as they allow your surgeon to track your progress and catch any issues that might arise.

You don’t have to let your neurofibroma impact your life. Working with a skilled and compassionate surgeon, you will be able to return to your active lifestyle.