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Cervical Neck Instability
5 years ago I had a fusion done on my neck c3 thru c6. The surgery went well and I recovered nicely. Now I have cervical neck instability and need work on c1 and c2. Has anyone had this done? If you have, what was the recovery like and how long did it take. Thank you for your response.
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Hello @slw18 and welcome to Mayo Clinic Connect. You certainly have been through quite a journey but also pursued finding answers for your symptoms, which I commend you on.
You will notice that I have moved your post into an existing discussion on the topic of CCI in order for you to connect with members such as @jacklynn12 and @kdj who may be able to share more information with you.
As for what type of diagnostic exams you need, you should be directed by your care team. Have you had coordinated care across the various departments you have sought care so far or are you organizing the information on your own?
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1 Reaction@slw18 I read your symptoms and I think a physical therapist may be able to help. Find a PT who rehabs spine surgery patients. You are describing symptoms with muscle spasms that can be caused by misalignment of the spine or muscle spasms that cause the vertebrae to be pulled out of alignment. A good PT can be a great source of information and will likely know doctors who can help because they get referrals from doctors. Your imaging didn't indicate any brain tumor, and if there was an issue like that, they would have told you. It would say something on the report.
Mayo gets lots of patients trying to see neurologists and it is hard to get into Mayo for that. May I ask why you have been seeing a chiropractor for years and what has actually been diagnosed as a spine issue? If you do have a problem like a bulging disc, seeing a chiropractor can be dangerous. I am a spine patient and had a bulging disc resulting from an old whiplash injury, and all I had to do to rupture that disk was turn my head while I was stretching. That didn't hurt, but had an odd feeling. In the next few years, I grew bone spurs pressing into my spinal cord trying to stabilize that ruptured disc. It caused spinal cord compression, and I had to have surgery to remove that damaged disc and a fusion of the 2 vertebrae. I had the same symptoms you describe. The suboccipital headaches are caused by the vertebrae twisting or tilting from a muscle spasm. Those muscles are attached to the spineous processes on the vertebrae and to the base of the skull and they get stretched if pulled out of alignment causing pain.
My physical therapist is also has an expert level myofascial release certification from John Barnes who developed the treatment techniques. I would caution you against further chiropractic work if you have an un-diagnosed spine issue. That is a jolt to your spine to have an adjustment and the cumulative effect of that over years may not be good. A doctor would have to advise you about that. Discs develop cracks from trauma, and years later as the discs dry out with aging, the cracks weaken and can open causing the disc to herniate and spill out the jelly like substance inside. For me that happened 20 years after a traffic accident.
A physical therapist can gently work on the muscles to realign them and restore normal movement, and has modalities to treat pain and spasms with out blunt force to the spine. You skull may be sitting crooked on top of your spine. That sometimes happens to me, but I also have thoracic outlet syndrome that puts uneven pressure on my neck with one side being too tight, and that can cause independent rotation of vertebrae. If you have a spine issue, getting a referral to a spine surgeon would be a good idea. That doesn't mean that you would automatically need spine surgery, but would be evaluated. Sometimes, they only look for problems to fix, but they can send you to physical therapy to try to prevent surgery. They should want to prevent surgery unless it is necessary. At the very least, you need to do PT and have it fail to help before advancing to surgery.
I didn't wish for surgery, and I was scared. I had to do a lot to get over that. I was loosing the coordination of my arms which was serious since I am a professional artist. One piece of advice I would give you is let the professionals diagnose the problem. Don't tell them what tests to do and what you think the problem is. No one wants to be told how to do their job. Your job as a patient is to accurately describe your symptoms, when they started, what your health history is, and if your symptoms change with different positions of your neck or body or have changed over time. You can ask them to review your imaging with you. Try to be calm. If you are demonstrating anxiety, they may be put off by that or refer you for mental health help. Surgeons are nervous about the patients they select for surgery and want to insure the outcome will be favorable. Anxiety will get in the way of good communications and can interfere with a doctor patient relationship. Their understanding of the problems are based on communication and it is easy to get it wrong or miss something.
Do not put your doctor in the position of having to decide if the chiropractor caused the issues. Tell them your history and they can have an opinion on it if they choose, but they may leave that out of the records. If the doctor thinks they will be pulled into a malpractice lawsuit because of the chiropractor, they may not take you as a patient because that will put them in an awkward position that may be very time consuming. Often there is a question on intake forms about this. Surgeons pick and choose their patients carefully, so make sure you are the best patient you can be. Some fear is normal, but don't scare the doctor out of helping you. If you need counseling, find a counselor yourself who can help you navigate the issues.
Here is our discussion about Myofascial Release and there is a provider search at http://mfrtherapists.com/
My physical therapist has done a lot of this in treating my spine issues, rehabbing me after spine surgery and treating my thoracic outlet syndrome. Let me know if you have other questions, and I will try to help.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
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3 Reactionsthanks for your advice. ive had neck issue from old accident, but the orthopedic doc didnt want to do much beside a xray of the cervical and the lower spine. didnt want to do the middle. he didnt want to persue anymore test. should i try another orthopedic? is a xray enough? can i got to a physical therapist before a diagnosis?
I had an injection(PRP) into C1-C2 and it was both costly and ineffective.
I would like to know more about how the fusion at C1-C2 affected your driving and neck mobility.
hi jennifer, i was doing more research and thought it could be VAD. ever since i had my neck axjustment at the chiropractor things havent been the same. ive need had an adjustment to the neck, but he said it was safe. the transvere process stop sticking out but all the other issues have come up.
@slw18 I'll tell what my physical therapist says, "Bones are dumb and they go where they are told." She means that if there is a muscle spasm, it will move the bones, and in the neck and spine, that can turn or tilt the vertebrae. If it turns, the spineous process to the side will rotate either forward or back, and probably the muscle attached on the side that gets stretched will complain. So if someone just pushes it back in place, that does not address why there is a muscle spasm that moved it in the first place. If other things get out of alignment too, like your jaw or the way the skull sits on top on the spine (it could sit cocked ) it causes problems and pain. There are many muscle connections from the head to the neck and to the shoulders and shoulder blade, that any muscle tightness issue can exert pressure on the spine. It's complicated and it's not just a simple push on the spine to fix that. If your discs are not in good shape, putting extra pressure on them will be a risk. Most spine surgery patients will also say that chiropractor adjustments on an operated neck is a bad idea. Knowing what I experienced rupturing my disc by simply turning my head, and going through spine surgery and a long recovery, I agree with that. If you have questions about your remaining symptoms, please reach out for help. If there is uneven pressure on the spine, it could be creating arthritis as the years go by and that might be able to be avoided entirely if you can maintain proper alignment and posture. That is why I recommended a physical therapist as a prevention measure.
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2 Reactions@slw18 A physical therapist can help even if you don't have a specific diagnosis. You need a doctor to write a script for PT and check your insurance benefits. All you need is to have some pain or weakness, and it doesn't need to be a specific diagnosis. The PT will help with that. Research until you find a good one, and they should be willing to talk to you on the phone (at least briefly about your case) so ask questions. Call several in order to find one who is a good fit for you. They need to do an assessment and see imaging first as a starting point. They are also a good resource to know when you need to see a surgeon for possible treatment or surgery, but the goal of PT is to avoid surgery, and/or rehab after it with physical means. My PT certainly helped me with that, and even knew some names of local surgeons.
Since you have an old neck issue from an accident, your spine discs can be like mine were, with cracks caused by the trauma of the accident, and as you age and your spinal discs dry out, those fissures can open up and the wall of the disc weakens. I had imaging of my full spine before I had spine surgery, and it was necessary to know what levels of the spine could be generating symptoms. If your case gets into that territory, the doctors don't know and cannot rule things out unless they have imaged your entire spine. I wouldn't push for that at the beginning, unless consideration for surgery is discussed as the doc needs to justify the reason for the imaging to the insurance company. MRIs are pretty expensive.
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2 Reactions@slw18 I would advise a consult with a spine specialist and a current MRI to determine your status. An X-ray does not show the discs, but it can show if the spaces the discs occupy between vertebrae are abnormal. In general, you can go to a physical therapist, but the PT should be asking you for a report of imaging if there is any question of spinal instability. If you have instability and the vertebrae can slide forward or back, you are at serious risk of injury or paralysis if someone works on your neck. It sounds like your orthopedic doctor does not want to take your case for any further treatment. Surgeons pick and choose cases, and they may avoid difficult cases because a poor surgical outcome can hurt their statistics of success. They are rated by insurance companies and don't want to harm their careers, so they refuse to help patients. They also refuse to help patients who they don't think they can please because they don't want bad reviews posted online. Sometimes they don't help people if they perceive a mental issue also because that patient will never be happy with the outcome. These are things I have heard a surgeon say when presenting cases at a conference for other surgeons and discussing patient selection. Do everything you can to be a good patient that surgeons will want to help.
You do need to find another doctor for another opinion. Spine surgeons like to refer patients to specific neurologists if testing is required, so it makes sense to start with a spine specialist. You do have an old injury, and spine problems from that can sneak up on you. You mentioned "electrical stimulation throughout the body". You might be describing the same symptom I had that was caused by spinal cord compression. When I bent my neck forward, I got an electric shock down my entire body. If that is what you have, You should see a spine surgeon ASAP. Choose your spine surgeon carefully. Some are gifted; some are not, so do your research and find the best you can. Check your insurance coverage and make sure they are in network. Spine surgery is very expensive. If you do make another appeal to get into Mayo, do that with current imaging of your spine issues directed to a spine surgeon or to the neurosurgery department. Your primary care doctor could order MRI imaging based on your symptoms for a referral to a spine specialist. There are orthopedic and neurosurgery spine experts and either can operate on the spine. I chose my spine surgeon because his areas of interest matched my case, and because when I read his papers, I knew he would understand my symptoms because it referenced leg pain caused by cervical stenosis (cord compression in the neck). Here is my patient story. Let me know if I can be of further assistance. I was turned down 5 times before I came to Mayo.
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
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3 ReactionsThanks @jenniferhunter, I always learn so much from you. How do you remember all of those ins and outs of every case presentation. You are a very special asset.
My best....Chris
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