Should I have non fusion fixed?

Hi All,
I am back. Since I was last here I have had a pain pump implanted, which is working on my leg nerve pain well even though I am not dialed in yet with my dose.

I had a C4-7 ACDF in 2014 but no fusion at C6/7. I still suffer from terrible neck pain, weird pains in my spine etc. The neurosurgeon who put my pump in took new imaging of my neck. The non fusion I have at C6-7 is worse (more space between the bones) and now because of the micro-movement of the psuedoarthrosis, bone spurs are forming and growing into my spinal cord. Neurosurgeon says if I do nothing it will only get worse and require a more complicated surgery down the road. He wants to go in posterior and put rod and screws in from C5-7.

My pain doctor says I will be trading one pain for a new one. It will resolve my symptoms but will not leave me pain free.

You all here have had similar experiences. Looking for advice and input. I am so scared to have another neck surgery.

Hope you all are hanging in there - TN

Thanks White Beard,
It helps to know that your posterior neck surgery did reduce your pain. I know it will be a long recovery. It was tough with my ACDF, I can’t imagine it being worse. But you are correct, if I do nothing it will get worse. I have symptoms that effect my balance, spine pain etc. that may also be from my neck. I told the neurosurgeon I will have it in January, but doing my homework in the meantime. The neurosurgeon also said at some point they may have to deal with C2-3 because of facet arthrosis. But they wouldn’t be able to fix that area if I am not fused.

I have heard that the posterior approach messes up your muscles and you get more spasms even once healed. Did the surgery fix your related symptoms?

The pump has helped my nerve pain in my legs a lot. I am super sensitive to anything more than a 2% increase in meds so going slowly as we ramp it up. But I am sleeping 6-7 hours a night where prepump I was getting 2-4 hours of sleep because of the terrible burning pain all night long. I am thankful for the encouragement you and others gave me to proceed. Although I am still getting used to this giant metal thing in my abdomen.....

Thanks, TN

TN, I read your post last night & opted to not post immediately. I decided to think on it for a bit. One thing I hoped happened, that was WhiteBeard weighing in on your situation. Another person is Abilene. If I remember correctly she had a posterior fusion, at least this is what is in my mind. I am hoping she will pop on & see your post here.

I think my foremost thought is knowing what may happen if nothing is done. The spurring is a concern because of the potential damage, more nerve damage becoming permanent. The balance issues you are having, this is not good. The last thing you need is to take a fall. My other thought, is the age factor, we do not bounce back as quickly as we age. This is not a surgery I would want to put off until my 60's. I am thinking you are quite a bit younger than me. I turned 65 in June.

It is unknown what type of pain you will have after surgery. One thing we know is a surgeon can fix the mechanical issues. Whether or not a person ends up with chronic pain afterwards is something no one can predict, including drs. You could end up with a different type of pain, however, with that being said it may be something much more tolerable than where you are now. In other words, no guarantees.

I hope that WhiteBeard see's your questions about muscles & spasms. I do remember him saying that it was a good 6 months before he could say he was seeing positive results. The recovery in longer. But, he said he reminded himself there was a light at the end of the tunnel & it was going to take more time.

I don't know if you are on a muscle relaxer now or not. I am on 20mg of Baclofen 3 times a day & have been quite a few years. I know WhiteBeard is also on Baclofen. It has worked better for me than any I have ever taken. Just my own thoughts, I think you are on the right path by booking the surgery.

Keep us posted.

Hi TN I had allot of pain and neck spasms foe a good little while after the surgery, recovery was long and painful but in the end the results made it more than worth it for me! Yes it did relieve my symptoms I was having excruciatingly headaches at the base of my skull and down my neck and it totally relieved that pain once I got through the recovery period, that also includes some PT after several months of healing! But TN I feel the end results were well worth it!!

One thing I might note here is I have major problems with severe muscle spasms, and I get them every where in my body,, from my jaw to my hands and fingers and my legs and feet and every where in between. Some doctors say its all from my spine others say it is something else??? The one thing that seems to have helped me the most after trying a whole host of different things including medications. I was put on Baclofen many years ago and was steadily increased till they found a relatively effective dose (I take 30mgs every 8 hours) it does not totally relieve me of muscle spasms but for the most part it has greatly reduced the frequency of them!! I seem to react allot differently to allot of medications than what most people do, as an example Baclofen does NOT make me sleepy or drowsy or anything, but neither does Benadryl, or most pain meds! I've said this many times in my post that Baclofen has been a real Godsend for me!

Darla I think my above paragraph is an answer to your question. Robaxin was never all that effective for me. But we all react differently to different medications.

TN did you get the PTM with your pump?


Wish You WELL.........White Beard

Thanks All for sharing your thoughts and experience. A few clarifications. I am 60, so waiting a few years until things are worse and for a more complicated surgery may not be the best idea?

The main symptom I want to go away are these mind-bending-fetal-position-can’t-talk-or-move cervicogenic headaches I get from moving my head too much (social occasions, looking around at a store or on a trip, etc). These keep me from traveling or doing anything because I have ruined many occasions where I end up in a bad way, sometimes even vomiting. My other symptoms include daily neck pain, tingling down both arms, weakness (drop things) and sometimes severe pain in left hand, crawly feeling up my spine, burning in upper spine, clumsiness, and difficulty walking. It helps when I occasionally wear my soft collar, and most of the time when I talk to people, or do things I hold my neck with one of my hands.

I almost never have muscle spasms so have no need for muscle relaxers. Occasionally my lumbar spine goes out, and then I need them. I tried baclofen after my cervical ACDF but it didn’t help. I know they can add it to my pain pump if I do need it. All my issues are nerve related; pain, tingling, burning, numbness.

I do worry I will come out worse, but these severe episodes limit me so much. I have had two other neurosurgeons say I need the revision, an osteopath, and pain doctor. The fact that it is getting worse in the past two years (larger gap between bones, bone spur development, and now more than 2mm anteriorlisthesis) makes me think it won’t be too long before I may be forced into surgery.

White Beard, it is encouraging to know that your severe headaches went away. Susie, thanks for your input, Darla I didn’t mean to panic you (they didn’t find out I had a nonfusion until 2 years post op), Seashell I appreciate your input but my first fusion was to keep me from paralysis after a bad car accident my spinal cord was pinched at several levels, I don’t have much ability to move now but I don’t suffer from muscle spasms, my “broken neck” gets real mad when I do try to move it too much (my body is trying to stabilize my neck by forming the spurs), and I was told I do have edema. But I hear ya, and have the same concerns. Though wondering why you mention strain counterstrain? I do hope Abilene weighs in, she had a posterior fusion at the same time I had my anterior fusion.

Keep your thoughts coming. Thanks 🙏

TN, I suspect you will be hearing from Abilene before long. She had emailed me a while back that she was having some issues here at the forum. I did some checking & could not find any problems. I shot an email to her yesterday & heard back from her.

Gee, time has flown by. I still had you in your 50’s, lol. But hey, that’s ok too.

It’s a mixed bag it seems when the drs allows the use of a PTM. Some want the patient on a stable dose & others would rather the patient use it right away. Personally, I think right away would give a better idea of how much is needed. They program how many bolus’ per pay. Maybe I need to hang my shingle out Monday, lol.

Darla:
It is not uncommon for individuals post cervical surgery to have shoulder and scapular issues, mainly due to the expected co-contraction of musculature and immobility and guarded posture. The shoulder and scapular move in a coordinated symbiosis, referred to clinically as the scapulo-humeral rhythm. Scapular glide allows for the shoulder to move through its arc of motion. The scapula can become “tacked down” with restricted glide, which impacts the shoulder.

A personal trainer or physical therapist would be a helpful adjust for you when cleared by your surgeon. The children’s song, “The hip bone is connected to the leg bone . . . “ is correct. The body is interrelated. The cervical spine and shoulder and scapula are interrelated. One impacts the other.

Trigger points, areas of heightened muscle tension that feels ropy or nodular, is also common after cervical surgery. Trigger points can be aching and persistent in pain. Trigger points are common under the scapula, lying in the musculature beneath the scapula (rhomboids, trapezius, teres major and teres minor). Trigger point injections can be helpful as can be therapist guided gentle mobilization.

The shoulder is a suspension joint. Think of a clothes’ hanger. Stability of the shoulder depends on muscular strength of the rotator cuff, ligaments, and joint capsule.

Pilates might be a resourceful means of addressing your core strengthening and perceived laxity. Pilates has multiple benefits, especially for those recovering or frail in well-being. Flexibility, core strengthening, and restoration of normal patterns of movement are at the core of Pilates. Gentle Pilates, like gentle restorative yoga, are a valuable tool of self-care for those (including myself) with chronic conditions. You might want to discuss both/either with your medical team as appropriate to augment your recovery and pathway forward.

I maintain a firm commitment to daily exercise - including Pilates and yoga - as part of my self-care. Moving is simply part of my DNA and something I have always gravitated to. I was always most at peace and content during a long run. The rhythm of my breath and steps like a metronme. I encourage everyone to find a form of exercise/movement that feels “right” to them in mind-body-soul.

This weekend is the annual running of the Hood To Coast relay in Portland, Oregon. It is a relay running event that winds its way from the summit of Mt. Hood to the city of Seaside on the Pacific Ocean. I ran this relay for several years and have fond memories of friendships foraged and commaraderie. I remember having to run a 4 mike segment of the relay at 3 am. The stars illuminated against the blackness of the sky. Absolute quiet amongst tall evergreen trees. I never felt more alive then I did at that moment.

As I deal with a body that I am sometimes at odds with, I continue to try to find simple activities or outings that help me feel “alive.” Recovering from any surgery is difficult. Especially several weeks out as acute healing wanes, aches and pains and fatigue persist, and people become more expecting that you be as good as new. Find a few things that help lift your spirits and recharge your emotional batteries. I treat myself to fresh flowers when I am in recovery mode. Daffodils are one of my favorites, a happy flower. A manicure or pedicure are also a treat that I give to myself. Treat yourself to something just for you as you as part of your recovery.
Karen

Post Edited ((Seashell)) : 8/25/2018 12:18:11 PM (GMT-6)

Darla,
You most likely have muscle spasms. You are very early post op so continue to take it easy. Don’t twist or raise your arms above your shoulders and definitely no lifting. I had muscle spasms post op for a couple of months and they gradually went away unless I did a movement my neck didn’t like. I used ice a lot, even at night. I found and still find that is the best thing for spasm and pain.

Give yourself at least 6 months to heal. And DO NOT do Pilates or yoga. I am sure Karen (no disrespect intended) knows what to do because of her training but for someone who doesn’t her level of training it is a really bad idea. Many healthy people are injured from those moves. It is good to walk at this point, carefully. And when the doctor gives you the go ahead you can start moving more. You will not want to raise your arms above your shoulders at all for a very long time (a year or more) since that will jack up your neck big time. I used to be a trainer and taught various fitness classes for years and as a scientist I understand human anatomy. I have seen many people injured from doing the wrong thing or the right thing the wrong way.

Take it easy and feel free to contact me with questions. You can also look up my thread.
Best wished for you.

Taller Now and Darla:
My discussion of Pilates and yoga was directed with the sense that Darla, like many with chronic health issues, is struggling with feeling that she can no longer trust her body. A feeling that her body has betrayed her and uncertain what a new ache or swelling may imply. Regaining a sense of trust of one’s body is a vital part of a functional recovery and reclaiming of one’s life. Yoga and Pilates can both be adjuncts to reach a place of trust with the body that is one’s home.

I made specific note for Darla to discuss the implications and timing of introducing one or the other - yoga and Pilates - with her medical team. I made specific wording of gentle and restorative as descriptors. There was no ill-will intention.

Gentle/restorative yoga and pilated can be lower extremity and torso in focus, excluding the upper body, in the case of its application for building body trust after ACDF surgery. Just as I modify my use of beneficial restorative yoga/Pilates with pathological fracture risk with AVN of my hips. The intended benefit: To see/feel what the body can do and is doing well to better experience the body as a friend.

ACDF surgery and it’s aftermath need not be overly exacting in its restrictions. It takes 12-18 months, as a general finding, for full fusion. With full fusion, many people can resume a wide range of activities. Obviously, each person has their own co-morbities and health history that must be factored in.

The intention of my post was to point of reestablishing trust with one’s body when living with a chronic health condition.

Thi Chi. Restorative yoga. Soaring crane. Each are based less on intense exercise and more on reconnecting and trusting the body as one’s home. Experiencing what the body can do to ease the grief of what may have been lost.

Ok . . . nuff said. No ill-will intended. More offered as a possible pathway forward.
Karen

Good Morning, TN, Karen, Abilene, Susie, White Beard, and company!

I have a lot of thoughts/comments/questions to each post but I wanted to do a quick comment for now. More later I am still thinking. I have no medical team, really. I have a few dr's. I thought about going to Mayo which is not all that far from me here in NE FL but I keep having surgeries and have to be off my anti-inflammatories and/or auto-immune meds and it seems a waste of time to go pre-op or post-op. In the meantime my most recent surgery, the 4 level ACDF with an excellent NS (but not part of any medical team) lead me to a man who seems to be a good, solid, MD primary care Dr. I am hopeful he will help me build a team. He referred me to a new Rheumatologist and I have the first available which is Oct. Nothing happens quickly and trust me, everything in NE Fl is slower than...everywhere, perhaps!

More shortly, but I want to THANK you all for chiming in. I am not a fan of PT unless it is with a really good therapist and one on one. Not easy to find. I have had so much of it and I know how good or bad it can be. I am not up for any exercise classes, that is for sure. I exercise every day on my stationery bike and I do 10,000 steps. I am busy with my family and teaching online. I would like to be somebody that goes to exercise classes but I do not feel up to it. My body is an issue. I have at least 2 auto-immune diseases and while I try and find out what they are and how best to address them I just do not feel up for anything beyond my normal day. I am almost 60 (just bonding, lol) and I do think I cannot trust my body. Not due to age...my mother still takes Pilates! But due to health. I have fatigue. Etc.

TN thanks for letting me know about the muscle spasms. Thanks to all of you for encouragement. I have found when I feel something off it usually is, and I am concerned that by stretching my elbows forward my scapulae (?) pop out and then hurt. With a connective tissue disorder...who knows. I am so glad you told me about not lifting my arms. I don't lift heavy things but I have been stretching my arms over my head. Maybe that has not been a good idea. My dr gave me no precautions other than no kickboxing. Darn. LOL.

Abilene I want to offer congratulations on all the wonderful things (and people) in your life! How excellent!

TN...How do you feel about another surgery in Oct? What exactly is hypermobile joint syndrome? I am going to look at your earlier posts as well.

I am so jealous to all of you in the beautiful areas for Fall. My husband and I went to New England a few times over the past few years and really reminded me how much I miss it. I grew up in NY. Enjoy!

Karen,
Thanks for your clarification. I always knew that there was no ill will intended. Sometimes people brush over the qualifiers so I am glad you went back over them. And yes, we need to know our bodies and understand them to be well. My years of fitness taught me that and like you I have no coordination only stamina. Sometimes I see photos of myself in those healthy days and my heart aches. But I also feel like illness has forced me to grow as a person, into someone better.

We own acreage north of Vancouver and the country living suits me well. Surrounded by views, wildlife, trees and flowers with my two dogs and husband is a blessing that keeps me going. I enjoy being outdoors and am always pushing my physical limits. My grandchildren also keep me wanting to stay as active as possible. Often, I send myself to my recliner for a few days and pay for those fun times.

My pain doctor is in the Pearl so right now I am there every four weeks as we get my pain pump adjusted. I wish you the very best. I hope you have people to support you.
TN

Karen,
I often stop for coffee after my appointment, which is on 18th and Irving. I would love to meet for a cup of coffee if you are up for that sort of thing. My next drive to Portland is on Sept. 17th. Email me if you are interested.