Advice For Parents Of Kids Suffering From Arnold Chiari Malformation

My best friend’s daughter, Paula, was discovered to have Arnold Chiari Malformation when she was 5. This means that the back portion of her brain has been pulled down to the base of her skull and into her upper spinal canal. 

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According to Jeffrey W. Campbell, MD, “There are four different types of Chiari malformation (I, II, III, and IV). Chiari I is the most common. Doctors don’t know exactly what causes Chiari I malformation. A baby can be born with Chiari I malformation or it can develop in the first few years of life. Less often, the malformation can happen later in life from trauma, infection, or other medical problems.”

 

Some children who suffer from Arnold Chiari malformation do not present with symptoms, but others do have symptoms that are crucial to how they will live their lives. Paula presented with weakness in her legs and arms, numbness, sleep problems, balance and mood issues, gross and fine motor abnormalities, and developmental delay. However, these symptoms can be found in other conditions, which is why Paula was not diagnosed with Chiari earlier. And the fact was that she had the condition when she was only 18 months old. 

 

My friend confided in me then, her guilt of her frustrations with Paula. Paula wasn’t able to speak complete sentences when she was 3. Paula, too, was always sad and anxious. She didn’t want to see family members who would visit them. She would just play alone and her mood was erratic. 

 

Undergoing Decompression Surgery

Then came the miracle the family was waiting for – a neurosurgeon from Cincinnati Children’s Hospital evaluated Paula and recommended that she undergo decompression surgery, which leads to making more space to accommodate the brain and the spinal cord.

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We were all amazed with the result post surgery. The development was very fast and the improvement was quite evident in the way Paula moved, felt, and spoke. Her balance improved and she no longer felt the numbness in the hands and feet. The drooping of her eye was gone and the best part was, two weeks post surgery, she went back to school. It was an emotional moment for the family. She was speaking a few words, and then phrases and eventually sentences. 

 

Paula is now 13, a ninth grader. She is much better now, but my best friend is still pretty cautious. She’s just so thankful that they got through the ordeal and that Paula is living an almost normal life. 

 

However, Brad Weprin, MD, noted, “Surgery is most beneficial for individuals who have clearly defined problems related to Chiari. There are a lot of people around the country being operated on for Chiari who do not need to be, and they are now experiencing complications that could have been avoided.”

 

Timothy C. Hain, MD, advised, “As in most decisions, one should weigh risk vs benefit. In Chiari surgery, risk is substantial (your skull is opened). Benefit is minimal as Chiari’s, in general, do not progress rapidly if at all.”

 

Tips For Parents with Children Suffering From Arnold Chiari Malformation

 

Whether you’ve just heard about the sad news about your child or you’ve been dealing with it for some time now, do read below and learn some pieces of advice from my best friend’s experience, in the hopes that you, too, may help your child deal with his or her condition. 

 

  • Educate yourself about Chiari. Do your own research. Though your doctor would surely explain the condition to the family, there’s no harm in learning more about it by reading. It will also enable you to face your fear and be aware of the situation.

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  • Encourage your child to focus on what she can do instead of dwell on the things that she is unable to perform. Paula loves football but she can’t play, so we asked if she wanted to join the school ballet or golf team, and she did. 

Reach out to people who are in the same situation as you. You can connect to caregivers who have experience caring for Chiari children. Join a support group. It helps to hear from others and being able to share your stories to them as well.

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  • When you think about how life can be easier for you in dealing with the condition, please don’t forget to think about your child too. Ask her where she is more comfortable staying, or if she’s okay with some activities that you want her to do. I know you want what’s best for your child, but do give her ample freedom to decide on some things that give her comfort and security. 

 

  • Connect with your child’s friends and let them know your child’s limitations. Things like playing rough or doing vigorous activities are a no-no, so they should be aware of these. 

 

  • Spend time with your Chiari child as well as your other children without the condition. They’re children. Though they may get that their sibling has disabilities, it doesn’t mean you’ll let them understand you all the way. After all, it is your responsibility to take care of them, show them the same love, and treat them the best way you can.

Source: flickr.com

Takeaway

 

Your child may have different symptoms than the other children with Chiari. Don’t get depressed – it is a fact that every kid with the condition is different. Just open your mind. Stay positive – for you, your child, and your family. 

Treatment Options For Adults With Arnold Chiari Malformation

Arnold Chiari Malformation is usually developmental, meaning that they are formed as the body develops before birth. Many Chiari patients, though, don’t present with symptoms until they reach adulthood. They also don’t receive treatment until they are older. But for those with symptomatic malformations but have unsuccessfully to non-surgical treatments, there are several tested and proven surgical treatments available.

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Conventional And Minimally Invasive Treatments

 

These are the two general options that the surgeon will use. Conventional or traditional surgery involves open surgery, which includes cervical laminectomy and decompression surgery. These two procedures have been proven to treat patients effectively. 

 

However, with the advent of new technology, minimally invasive surgery has become possible. This involves the surgeon using specialized medical equipment to make very small incisions to decrease blood loss and tissue damage. 

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Majority of patients who can undergo conventional surgery can also opt to do the minimally invasive approach. In fact, in the current years, specialists have preferred the traditional method because it is equally effective and with more advantages to patients.

 

Some benefits can Chiari patients can expect from the minimally invasive approach include: 

 

  • Lesser pain and shorter hospital stay
  • Shortened recovery time
  • Decreased blood loss
  • The procedure is shorter than the traditional approach
  • Relatively quicker time to go back to work and do normal daily activities

 

A List of Surgical Treatments For Adults With Chiari Malformations

 

There are several options that patients can choose from to help alleviate their condition. However, it is important to remember that the goal is one and the same – to increase space for the brain and spinal cord and decrease the pressure that has been building up in the said structures. 

  • Decompression Surgery. This is the most common procedure preferred by patients and used by surgeons. What the surgeon does it primarily incise the patient’s neck from the back to remove a small part of the skull. He then opens and expands the dura mater. Minimally invasive decompression is another option that results in decreased pain and healing time and reduced hospital stay.

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  • Cervical Laminectomy. This procedure can be used together with decompression surgery. Aside from removing a portion of the skull, the surgeon will also remove a portion of the upper vertebrae to make more space within the spinal cord. These two procedures combined results in an increased space in both the spinal cord and the cerebellum.

 

 

 

  • Spinal Fusion. For a Chiari patient with spinal instability, spinal fusion is the treatment of choice. The head and neck are protected by placing specialized instruments in the skull and upper vertebrae. Fusion material is also inserted to connect and join the two structures together and form a single structure. Few weeks post surgery, the patient is required to wear a cervical brace to limit neck movement. Physical therapy is also recommended.

 

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  • Transnasal Decompression. The surgeon approaches the front of the skull through the mouth or nose, and then he removes the bone. This procedure, which is rarely used, is done on those patients with other skull deformities. 

 

 

 

  • CSF Diversion. Cerebrospinal Fluid Diversion is the treatment of choice when there is a buildup of the CSF within the skull. A tube is implanted to ‘divert’ the fluid to another part of the body, usually to the abdomen. This provides a quick resolution to the increasing intracranial pressure, and patients are relieved immediately after the procedure.

 

 

Which Is The Right Treatment For You?

 

Your surgeon may have already suggested the treatment that is appropriate for you, as Chiari malformations are different for every patient. The doctor chooses the treatment according to your previous medical history, current age, and weight, or medications that you are recently taking. If you are older or have preexisting conditions, traditional surgery may increase your risks.

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Some patients may not qualify for the former and are candidates for the minimally invasive approach. If they are, then choosing a Chiari specialist is advisable – someone who has trained specifically for the meticulous procedure. 

 

Now that these procedures have been laid out to you, you will be more confident to ask any questions or discuss concerns that you may have. Consequently, you are now able to better understand what your health care team will be explaining to you about your procedure. The next thing that you should focus on is your successful recovery.