Has anyone had cervical myelopathy and ALS?

@larry1 May I ask what you are disappointed about? The nurses do help manage the surgeon's time, so perhaps that is why they referred you to the neurologist because they have to keep to a schedule. What are the questions that have not been answered? Your surgeon may not have time for an in person follow up appointment because they are usually booked with consults and surgeries for a few months. You may already have a scheduled follow up with the surgeon I'm guessing? I had follow ups at 6 weeks, 3 months, 6 months, and a year after surgery. Can you wait with your questions until then?

I presume that with a 4 level ACDF, you have some hardware holding things in place. It takes about 3 months for the fusion process to begin, and that can be later for some patients. During this healing process, you need to take care and be careful. Make sure you are eating healthy with enough protein and calcium for good bone healing. We all heal at different rates, and it may be too early to know what your end result will be. There is a lot of inflammation after surgery that is part of the healing process, and it does increase the pain. Healing takes a lot of patience. Did the nurse give you instructions for your self care?

I am most disappointed in my balance and walking issues the numbness in my hands,just feel I am not making any progress. Also going back to surgeon to review MRI in person. Just feel the surgeon Team is not on the same page, one tells me one thing and the other tells me another. I don’t know which one cleared me for physical therapy but that has been approved by the team.

@larryk1 Thanks for the update. A physical therapist is a great ally for you. You can ask all the questions you want and they have lots of time to answer plus lots of experience rehabbing patients from surgery. I have learned so much from my PT. PT's also work with people on balance, and I think you may feel better doing this because you will be working at improvement. It is very early, and a lot can change as time goes on. Believe that you can get better. That will go a long way to help you improve because patients who believe they CAN do something usually can do it. Progress is measured over months, not days. Don't tell yourself that you are not making progress, because you are, but it is slower than you expected. Please be kind to yourself. Give yourself permission to relax and take time to heal. When you are stressed, it just impairs your healing because of all the stress hormones that are created. Please be kind with your surgeon. You are part of his team with the shared goal of improving your condition.

I would like to share with you some conversations I had with Mitch @birdman518 as he went through a similar cervical surgery and a complication with his arms. When I first talked to Mitch, he was worried about falling, and it turned out that he had a cervical spine problem. His progress was slow after surgery, and he has shared his journey. Here are the links to the discussions. He is a few more months past surgery than you are, but it may help to read our conversations.

When will you be starting physical therapy?

Jennifer, Thank you for your encouragement. I needed to read your words to remain hopeful and positive. I am still waiting for my MRI appointment and my appointment for injections.
Good health free of pain and free of worry to all.

@lebanon100 Thank you. I hope that the injections will help you. There are some risks to them, and they should fully explain them to you. I had one epidural injection in my neck which didn't help much and I had a side effect that caused a new nerve pain that lasted a long time, but finally did resolve. My mom had a few of these injections for a while and she did fine. I think you also mentioned osteoporosis in another post. It would be worth asking if the steroid injection could make the osteoporosis worse. I know for injections in the joints, it can weaken tendons if it is done too often.

I also read in another one of your posts where you talk about the book on the McGill methods for working on back problems. After I saw that, I watched a video lecture that he did, and I found it interesting. Was there anything from the book you found to be helpful to you?

Hi Jennifer,
Does your cautionary note about the possibility that steroid injections could make my osteoporosis worse apply to injections other than epidurals? My doctor tells me that it's not an epidural and he doesn't have the time to talk to me about the risks. I appreciate your advice about the importance of asking about them. It looks like I won't be fully briefed until I"m called by the hospital for my injection appointment. Was your mother's osteoporosis affected?

One of my concerns about being pain free due to the injections, is that I would no longer be able to monitor or be aware of how my condition is improving or deteriorating.

Re the McGill method: I'm reading McGill's book, Back Mechanic, and taking one on one classes with a certified McGill practioner. She is working with me on maintaining the basic neutral spine posture throughout daily activities such as standing, sitting, washing dishes, cooking, as well as all the postures we live with throughout daily life. The purpose of maintaining a neutral spine is to maintain a healthy alignment of the spine that doesn't aggravate pain or put pressure on the back.

There are three basic exercises to be practiced every day. Their purpose is to strengthen the core. They are bird dog, side plank, and curl up.

Progress is slow because some new movement patterns need to be relearned and practiced. In the McGill practice, movement originates in the hips and not in the spine so that when bending, sitting, squatting, or standing, one initiates these movement and others from the hips.

There's also a lot of information about traditional postures, such as some yoga postures that are counter-productive for those of us with back pain.

Although progress is slow, I feel stronger inside and out. And I'm hopeful that the McGill practices will help me navigate through my back issues, and possibly mitigate, manage them, and contribute to a healthier and (dare I say), a pain free back.

Monday, physical therapist has not seen this condition in her 11 years of doing physical therapy, gave me home stretches. So really not much has happened.

@larryk1 Could you be more specific about what your condition is that your therapist is talking about? Are you referring to myelomylacia? I am a little surprised that you would be sent home with stretching exercises to do and very soon after spine surgery. Has your surgeon answered your questions? What questions did you ask of your physical therapist, and how did they answer?

My walking,balance,things like how she told me to stretch my legs arms etc.she gave me four home exercises to do at home of witch three of them I have to lay on floor witch is not easy for me.I go and see surgeon today I asked physical therapist to improve my walking and balance,didn’t really get a straight answer.

Also have a bruised spinal cord