Postoperative problems are very stressful for the child and family. Symptoms that the child had prior to surgery are usually worse following the operation because of swelling or surgical trauma. This is normal. Less common complications after surgery are:
- Paralysis in arm(s) and/or leg(s)
- Loss of blood supply to an area of the brain (stroke)
- Hydrocephalus that requires another surgery to place a shunt or make a detour via an anterior third ventriculostomy
- Loss of bowel and bladder control
- Leakage of fluid from the incision
- Infection at site of incision
- Memory problems
My son Darren is 12, although very mature for 12, and also a whiz at math. Several weeks after surgery when he had recovered enough to talk, we found that his short-term memory had been disrupted. He could not remember all of the letters of the alphabet or what certain numbers were. He also had trouble with word retrieval—he knew what he wanted to say but just couldn’t think of the word he wanted to use. For example, he wanted to ask for pain medication, but could only ask us, “Make hurt less.” This lasted just over 6 weeks or so, and I’m happy to say that he is now just as smart as he once was.
The majority of postoperative complications are not permanent; they can be reversed with additional surgical, medical, or rehabilitative treatment.
My son had complications that were worse than the norm. It would have been helpful to me to know that all kids are referred to physical and occupational therapy after brain surgery. Knowing that they expect physical impairment after surgery would have given me some before-surgery perspective.
Three less common but more serious complications are discussed next.
Aseptic meningitis can occur in the first few weeks following surgery, usually when steroids (medications used to decrease swelling and inflammation) are reduced. It is thought that aseptic meningitis is caused when blood and cells from the tumor removal get into the CSF, causing chemical irritation. Symptoms of aseptic meningitis include fever, headache, and stiff neck. If your child has any of these symptoms, the doctor usually asks for a sample of CSF to test for a bacterial infection. This sample is obtained from a spinal tap (see Chapter 6, Coping with Procedures) or from fluid near the incision. All cultures that test for the presence of bacteria are negative if your child has aseptic meningitis. The symptoms usually improve when the child is given a short course of additional steroids.
Cranial nerve deficits
Cranial nerves control movement of the eyes, face, and throat. The control center for the cranial nerves is located in the brainstem. Problems with the cranial nerves can be caused by tumors in the brainstem, tumors pressing on the brainstem, or hydrocephalus. Surgery in the posterior fossa (cerebellum or brainstem) can also result in temporary or permanent cranial nerve problems. Some of the deficits that may develop include:
- Double vision
- Bouncing of eyes
- Inability to look up or to one side
- Inability to close one eyelid
- Pain in the jaw
- Weakness, droop, or asymmetry of face
- Hoarse or raspy voice
- Difficulty swallowing and coughing
- Respiratory problems, such as difficulty breathing, pneumonia, and frequent respiratory illnesses
If these symptoms are present prior to surgery, they may get worse after surgery. However, recovery of cranial nerve function is possible over a long period of time. If eye and facial cranial nerve problems persist, surgery can correct some of them. Children who can’t swallow are given nutrition through an NG or gastrostomy tube. Children with severe respiratory problems have a tube inserted into their throat (tracheostomy) that is connected to a respirator to help them breathe.
Posterior fossa syndrome
Posterior fossa syndrome (also called cerebellar mutism) is a complication of posterior fossa (cerebellum or brainstem) surgery. The most common tumors in this area are medulloblastomas, astrocytomas, and ependymomas. Most children wake up from the surgery moving their arms and legs and responding to questions. In some cases, 24 or more hours later the child stops talking, may develop weakness of arms and legs, and cranial nerve deficits appear. Emotionally, the children seem disconnected from their environment and may respond by simply crying.
These symptoms improve over a period of days in the minimally affected child, but improvement may take months in the severely affected child. Physical, occupational, and speech therapy should be started immediately. Children who have severe posterior fossa syndrome require transfer to an inpatient rehabilitation facility to facilitate quicker recovery.
Tori developed posterior fossa syndrome and cerebellar mutism after surgery. These were slow to improve, but after months in rehab, she was eventually able to see and to form short sentences. We have come a long way, and now she is an active 5 year old in regular private kindergarten. She has, however, been basically on a feeding tube for the last 10 months since surgery. We occasionally try to have her eat, but usually after a week it needs to go back in because she is getting on the dry side (dehydrated). The tube often is one of the most obvious things that makes her look “sick,” so this has had its ups and downs.
Ayla (32 months) was diagnosed with medulloblastoma, a 5x5 cm tumor in the posterior fossa, cerebellopontine angle, fourth ventricle, and arising from the brainstem. When all of this happens, you are not necessarily in the position or frame of mine to get all opinions. In retrospect, we know we had an excellent pediatric neurosurgeon who removed as much as he felt he could without causing additional deficits. He was very compassionate. When Ayla came out of it after surgery, she said, “I want pasta and salmon with paprika on it.” Then she noticed the balloons that we there for her, and she wanted to make sure her sister Jasmine got one. We didn’t notice it right away, but she couldn’t walk at first and she couldn’t drink liquids without choking. All that lasted about a week. They didn’t tell us ahead of time about posterior fossa syndrome, though we feel she came out of surgery relatively unscathed.
Our son had radiation late this summer (2.3 Gy craniospinal and a boost to the tumor bed) and is about to start round two (of eight) of chemotherapy (cisplatin, cytoxan, and vincristine). He was mute for 2 ½ months post-op, and had a right hemiparesis as well as a gaze palsy. He is back to his hyperactive self in terms of speech, but the physical return has been slower. His vision has improved, but he may still need a surgical correction. However, while he remembers even the worst of his impairments, he has a “today is today” attitude—no complaints, no frustration. He is the youngest of four, and I think the attention he has garnered has made him feel special and loved (he claimed he was “Moses, Prince of Egypt” just 2 weeks ago). Chemo every 3 weeks, all the testing, at-home hydration, meds and mouth care, port accessing, G-CSF [granulocyte-colony stimulating factor], etc., has just become routine for him. I am trying to catch up to his good spirits.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. The Brain and Spinal Cord
- 3. Types of Tumors
- 4. Telling Your Child and Others
- 5. Choosing a Treatment
- 6. Coping with Procedures
- 7. Forming a Partnership with the Treatment Team
- 8. Hospitalization
- 9. Venous Catheters
- 10. Surgery
- 11. Chemotherapy
- 12. Common Side Effects of Chemotherapy
- 13. Radiation Therapy
- 14. Peripheral Blood Stem Cell Transplantation
- 15. Siblings
- 16. Family and Friends
- 17. Communication and Behavior
- 18. School
- 19. Sources of Support
- 20. Nutrition
- 21. Medical and Financial Record-keeping
- 22. End of Treatment and Beyond
- 23. Recurrence
- 24. Death and Bereavement
- 25. Looking Forward
- Appendix A. Blood Tests and What They Mean
- Appendix C. Books and Websites