You have come to the right place to learn more about CES, find out who you need on your care team, and how to navigate life in a fulfilling way! You probably have a lot of questions, so here is some information to get you started:
Doctors and Therapy
- Many CES members have a variety of doctors and therapists on their care team. Here are a few that come highly recommended by the members in our community:
- Physical Therapist - Specializing in Neurological conditions
- Pelvic Floor Therapist
- Gastrointestinal Specialist
- Mental Health Therapist
- Aquatic Therapist
- Pain Management Specialist
- We are building a database of member recommended CES Specialists: Physiotherapists, neurosurgeons, pelvic floor therapists, etc. who are recommended by members who have received quality medical care throughout their CES diagnosis and recovery
- Please visit our CES Specialists page to recommend a medical professional who has improved your life or to search for one near you!
- As with many specialities in medicine, neurologists often sub-specialize, so look for a neurologist with experience managing patients with chronic CES or neuromuscular disease.
- Some physical therapists have a specialty, search for one who is a neurological specialist, or kinesthesiolopgy specialist
- With physical therapy and (tolerable) exercises, any motion or movement we have can become stronger. Meet with a physical therapist to be assessed and clearly state your goals and areas you would like to improve in
Pelvic Floor Therapist
- Click here to read a blog post by Dr. Heather Rader about how to find a pelvic floor therapist near you and what symptoms they are able to help with
- If you were diagnosed with CES because of a disc compression or any other neurosurgical emergency, you probably already have a neurosurgeon. If you do not and feel you need one, ask your primary care physician for a referral
- It is important to have a neurosurgeon on your care team for future evaluation, possible surgery, or implantation of a spinal cord stimulator for neuropathic pain control, should that be needed
- Urologists take responsibility for evaluating and managing your bladder, urinary needs, and male sexual dysfunction. Ask your primary care physician for a referral to a urologist if you have any bladder symptoms or concerns.
- A Urogynocological specialist may also be utilized particularly for female sexual dysfunction and male/female surgical implants and procedures to aid in urinary symptoms and functionality
- A gastrointestinal specialist can help with any disorders you may experience all the way from your mouth to your anus
- CES members often need help managing bowel problems and your gastrointestinal specialists is the best resource for this type of care
Mental Health Therapy
- CES can bring on a lot of feelings that are difficult to work through. Many members reach out to a therapist to speak to about their new lives. CES involves the whole family - couples therapy can be extremely beneficial because CES can change the dynamics of a relationship. Children may benefit from therapy as well- it. gives them a safe place to discuss the changes in their household and family dynamics.
- Many members report how beneficial being in the water is for their therapy and well being. It can reduce the stress and pressure on our joints and allow us to move with less pain.
Pain Management Specialist
- Pain management is a critical aspect of CES life
- These physicians have many tools in their tool box for treating and managing pain and you will surely want to develop a good relationship with this specialist
Scan Negative CES, so now what?
- Click here to watch a video by Dr. Wymer from our Second Annual CES Symposium which talks about MRI and CT negative or non-compressive CES and the many causes and possible treatments.
- We host virtual CES member meet-ups for members and/or their caregivers on the second and last Saturdays of the month. It is a great opportunity to meet other people in our community and share tips and tricks to living a fulfilling life with CES.
- Please visit our events page or send an email to firstname.lastname@example.org to register and join us!
Find New Hobbies
- Hobbies can be a great distraction from the pain. CES may prevent you from taking part in some of your previous hobbies in the same way you are used to. Picking up new hobbies can be a nice way to pass the time and distract your mind from the pain and all the life changes. Crafts (painting, knitting, scrapbooking, model building, etc.), puzzles, music, audiobooks, movies, reading, listening to music or podcasts, playing a small instrument, word games, etc. are all great options.
Important to Remember
- Speak to your doctor or surgeon for approval before beginning and new physical activity, therapy, or medication
- If you are in pain while doing your physical therapy exercises, let your therapist know! Modifications can be made to most exercises.
- If you don’t feel like someone on your care team is providing quality care it is okay to search for someone new to replace them.
- Be patient - often easier said than done. We understand how frustrating it can be when you feel like you aren’t making progress fast enough, but you have a good support system in the CES community. Consider keeping a journal to track your progress over time.
- Be kind to yourself. Set reasonable expectations and goals for yourself, so you don’t end up disappointed. Compare your progress to a month ago, six months ago, or a year ago. Don’t compare yourself to yesterday. It can take time to make improvements.
- Ask for help! CES is invisible and the people around you may not realize just how much pain you are in or how much help you may need. Let them know and ask for help! It can be minor like picking something up off the floor or it can be major like lawn care. People won’t know what you need if you don’t ask!
Additional Helpful Resources
- Click here to find links to mental health, addiction, food bank, and accessibility resources near you.
CES Warriors Youtube Channel
- Click here to visit, subscribe, and watch our videos.
Please let us know if you have any further questions, we would be happy to try and answer them!