Our Patient Navigators can provide more information on side effects like mobility.
Mobility — the ability to move freely and easily in one’s environment — can be affected by chordoma tumors and their treatments. Patients and survivors with tumors at any location along their spine report1 experiencing issues that impact their mobility, including balance deficits; loss of function in their arms, hands, legs, and feet; decreased ability to walk; numbness; bone fractures; and even some types of vision issues.
If your mobility has been affected by chordoma, there are ways to address and manage the issues you’re experiencing. Work with your care team, including the doctors and nurses treating your chordoma, a palliative care specialist, or your primary care doctor to create a plan for managing it. Getting the right care can improve your physical functioning, decrease the length of your hospital stays, reduce your risk of injury due to falls, and improve your overall quality of life.
When seeking treatment for mobility issues, it is important to:
The Chordoma Foundation is a resource for anyone affected by chordoma, at any stage of your journey. We're here to help you understand the disease, its side effects, find qualified doctors, and connect with others in the chordoma community.
Our Patient Navigators can provide more information on side effects like mobility.
Check out our booklet, Treatment Information Series: Improving Balance and Mobility
Many nerves, muscles, and systems in the body allow us to keep our balance and move around freely. Four systems have an outsized impact on balance and mobility and can be affected by chordoma treatment.
The Chordoma Survivorship Survey, completed in 2021, found that chordoma patients and survivors often experience balance or mobility issues during and after treatment. Up to 39% report experiencing balance issues and up to 40% experience loss of mobility in their arms, hands, legs, or feet.
The types of mobility issues chordoma patients experience are most often the result of damage to nerves, muscles, and bone. They can manifest in several ways, including, but not limited to:
If any of the symptoms on this list are sudden onset and/or severe, check with your doctors right away.
You may find that these are short-term challenges you experience as you undergo or recover from treatment. Or they may become longer-term quality of life issues that you must adapt to and manage over time. They can be caused by the tumor itself as it grows or by treatments you receive.
During surgery, cranial and spinal nerves may be damaged or cut to remove your tumor. These nerves can also be damaged by radiation or by the growth of your tumor before treatment. The symptoms you experience depend on which nerves are affected. Neuropathy can also affect proprioception, a continuous loop of feedback between sensory receptors throughout your body and your nervous system. Proprioception allows the body to sense its location in space, movements, and actions. It is sometimes called the “sixth sense.”
Some chemotherapy drugs can damage your nerves, especially in high doses. These include cisplatin, vincristine, and etoposide. These chemotherapies are not regularly used to treat chordoma, but in some cases they can be. If you have been or will be treated with any of these drugs, talk with your doctor about your risk of peripheral neuropathy. This is especially important for people who have conditions that may put them at greater risk for developing neuropathy, such as diabetes or a personal or family history of neuropathy.
Some medications may affect the nervous system and, by extension, mobility and balance. These include steroids, which can cause weakness in major muscles, especially if used long-term, and opioid pain relievers. Another common side effect of these medications is dizziness.
Deconditioning — the loss of physical fitness due to decreased levels of physical activity — can be caused by cancer treatments and have both short-term and long-term implications for balance and mobility. Depending on the length and extent of inactivity, individuals may experience weakness in muscles and joints as well as decreased function in the circulatory (blood) and respiratory (breathing) systems.
You should be assessed for any balance and mobility issues at the beginning of your treatment and at regular intervals during and after treatment.
No matter where you are in your chordoma journey, if you experience balance or mobility issues, talk with your healthcare team — the doctors and nurses treating your chordoma as well as your primary care doctor — about your symptoms.
Working with your providers to build a personalized plan for improving your balance, strength, and mobility is the best way to cope with any challenges that may arise. Be prepared to describe your symptoms in the most detailed way possible. The more specific you can be, and the more examples you can provide, the more effective your plan will be.
Your doctor may conduct a variety of tests to help determine the underlying factors of your mobility issues. These will depend on your symptoms and can include some or all of the following.
Balance and proprioception evaluation tests determine your body’s ability to sense its location, movements, and actions. These are similar to sobriety tests and may involve closing your eyes, standing on one foot, standing on your toes, walking, stepping over something, or moving from sitting to standing.
Posturography determines which parts of your balance system you rely on most. This involves wearing a safety harness while trying to remain standing on a moving platform.
Vision tests assess your eye movements, which play a role in function and balance.
Nerve conduction studies and quantitative sensory tests further examine peripheral nerve function and determine the extent of neuropathy.
Laboratory tests look for metabolic disturbances and nutritional deficiencies.
Imaging tests look for other possible causes of nerve damage.
Your doctor will ask questions about your symptoms and any triggers or relieving factors throughout the day. This may take place conversationally at an appointment or through a written questionnaire. Be prepared to discuss how your balance and mobility issues affect your work environment, social habits, and daily personal tasks. You may also be asked about your exposure to toxins, alcohol use, risk of infectious diseases, and family history of neurological diseases.
Neuropathy is a condition that results from damage to, or dysfunction of, the peripheral nervous system. It is a leading cause of chronic pain.
The symptoms of neuropathy depend on which nerves have been affected and on the severity of damage. The symptoms you experience may differ from day to day or month to month.
Possible impacts of neuropathy in cranial and spinal nerves:
The right management strategy depends on the cause of your balance and mobility issues, whether your chordoma treatment is complete or ongoing, and your specific challenges.
If what you’re experiencing is caused by the tumor itself, the symptoms may improve or go away after treatment. Rehabilitation is an important part of recovery after surgery, and plays a critical role in regaining lost functions. If you are currently planning for surgery, talk with your surgeons about what your recovery and rehabilitation plan will include.
If the damage to nerves is long-lasting or permanent, it is important to find ways to cope with and manage the challenges you experience. Treatment programs should be individualized to your needs, and will likely include different approaches, including the ones listed below.
Physical medicine and rehabilitation (PM&R), also called physiatry, employs a wide variety of methods and works with different specialties to improve physical functioning.
Medicines can help relieve pain and tingling sensations that may hinder your mobility.
Behavioral counseling can help you cope with feelings of distress brought on by a decreased ability to move around freely.
Integrative therapies are used along with traditional treatments to help enhance your well-being.
New and evolving surgical procedures may provide an opportunity to restore function to some chordoma patients. Reconstructive neurosurgeons are starting to use procedures such as nerve transfer, muscle and tendon transfer, tendon lengthening or release, and muscle transplants to help people with limited mobility regain function.
Previously reserved for patients experiencing peripheral nerve paralysis, some neurosurgeons are now applying these interventions to individuals with damage to the central nervous system that result in similar mobility deficits. This type of surgery may be an option for mobile spine patients experiencing functional loss and muscle spasticity.
While the sophistication and availability of these reconstructive strategies is still maturing, it is possible that in the future they may be able to help chordoma patients with loss of bowel, bladder, and sexual function.
Cancer rehabilitation specialists can also work with patients before surgery to improve their overall health and well-being. This is sometimes called “prehabilitation” and the goal is to prepare your body and mind for the upcoming stress of the surgery. This can help minimize the risk of complications and side effects following surgery, reduce the length of your hospital stay, and speed your recovery. If you have an upcoming surgery, talk with your surgeon about whether prehabilitation would be helpful.
PM&R doctors specialize in the prevention, diagnosis, and treatment of nerve, muscle, and bone disorders that can change how people move and function. A PM&R doctor can work with you both before and after treatment to help you regain strength and increase mobility.
How to prevent falls: Wear appropriate footwear and use a walking aid, such as a cane or walker, when surfaces are uneven. Within your home, make small adjustments to remove tripping hazards and keep commonly used items (such as remote controls and toiletries) within reach. And make sure you’re getting proper nutrition — your body will be weaker without enough calories and hydration, which can increase your risk of falling.
How to avoid inactivity: Slowly increase your level of activity by doing light exercises that you enjoy at regular intervals. Track your progress to assess whether those exercises become easier or harder over time.
How to establish new routines: Return to normal daily activities as much as possible as soon as possible, even if you cannot do them the same way you did before. This includes showering, cleaning, and household chores. Take things slowly and rest when you need to, but don’t give up! The more you move, the faster (and easier) your recovery will be.
Because the symptoms of fatigue are usually caused by more than one problem, it is likely that you will need to interact with more than one care provider to address them. Your care team for fatigue-related issues may include doctors, nurses, counselors, physical therapists, endocrinologists, pharmacists, dietitians, nutritionists, or others.
It is sometimes possible to schedule visits with specialists at the center where you were treated for chordoma. For instance, if you see your chordoma team in-person for follow-up visits, ask for referrals to other specialists in the medical center and make appointments to see the specialists while you are there for follow-up. You can then ask the specialist to consult with a specialist local to you so they can plan and follow your treatment together.
If you can’t be seen by a specialist at the center where you were treated, ask your chordoma care team for referrals in your local area. Some chordoma doctors will do consultations with local specialists, even if you haven’t seen them in person.
Seek out specialists at your nearest academic medical center. These specialists will likely not have experience with chordoma, and that’s okay. You and your chordoma care team can help educate them on chordoma and your experiences with it.
Palliative care is an important part of cancer care. Sometimes called supportive care, it is recommended for all cancer patients from the time of diagnosis, through all stages of treatment, and after treatment is complete. It can address symptoms of the disease itself or side effects of its treatment.
Chordoma experts recommend that all chordoma patients’ treatment plans and survivorship care plans include palliative care. No matter what treatment you have for chordoma, palliative care can help address pain, mobility and functional issues, mental and emotional health, nutrition, fatigue, and many other concerns to help you feel well and live fully while managing your chordoma.
To help you find specialists to address the many quality of life needs that may arise following treatment, we created a Survivorship Specialist Directory within Chordoma Connections, our online community. It is a supplement to our Doctor Directory, an invaluable tool on our website you can use to locate surgeons, radiation oncologists, and medical oncologists who have extensive experience treating chordoma.
The Survivorship Specialist Directory allows chordoma community members to share information with one another about providers who have been helpful in addressing quality of life concerns, including pain specialists, palliative medicine providers, physical therapists, and more.
Many of the care providers who can help you manage pain won’t know a lot about chordoma. And that’s okay. We developed a fact sheet you can use to help your doctors and other healthcare providers learn about chordoma. It includes general information on chordoma, how it’s treated, and the common side effects of those treatments. There is also space for you to add information about your particular situation so your providers can understand how chordoma has affected you personally.
If you are caring for someone with chordoma who is experiencing balance and mobility issues, there are several things to keep in mind and ways you can support them.
This content was developed by the Chordoma Foundation in consultation with members of our Patient Services Committee. It is not meant to take the place of medical advice. You should always talk with your doctors about treatment options and decisions.
We would like to thank the members of our Patient Services Committee for providing their expertise in contributing to the content and review of this information.
Edward Les, MD, Chair, Yen-Lin Chen, MD, Karen Cox, RN, FACHE, FAAN, Al Ferreira, RN, Sasha Knowlton, MD, and Paula Song, PhD
The information provided herein is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your or your child’s physician about any questions you have regarding your or your loved one’s medical care. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.