Still having issues 4 months post op ACDF C4-C6

@amywood20 When Mayo is open again for appointments, I think that would be a good decision to go there. What you should do is get together copies of all of your imaging before and after your spine surgery. You can contact Mayo with that and they will review the imaging. After that, a decision is made based on if they can offer medical help, and if that is yes, they will contact you about an appointment. You can probably do all of this now. I don't know if anything (other that waiting until COVID-19 urgency has passed) has changed.

When I contacted Mayo 4 years ago, I wrote to a specific surgeon and asked that he review my imaging because I read papers he co-authored and thought his area on interest would be a good match for what I needed. I had been turned down 5 times by local surgeons who didn't understand my symptoms and none would help me, but I knew that this Mayo surgeon would understand because of reading about a similar symptom of leg pain that was caused by cervical stenosis. There was terminology in that paper that I looked up and in doing that, I found medical literature with cases like mine that were described as a rare presentation.

When I came to Mayo for my workup, first I saw a neurologist from the spine center who ordered tests based on his exam and those were blood tests, nerve conduction EMG, MRI so we had complete imaging of the entire spine to rule out any non-cervical problems, testing in the Doppler lab for thoracic outlet syndrome which they confirmed by testing and the neurology exam, and a follow up with a thoracic surgeon about the TOS, and the exam with the neurosurgeon where he discussed my MRI imaging with me and told me his recommendation. The thoracic surgeon had to decide if he thought my biggest symptoms where coming from my cervical spine or the compression of nerves because of TOS which he discussed with me, and he consulted with the neurosurgeon about this, actually in a phone call while I was at the appointment with the neurosurgeon. I had a choice of fusion or artificial disc, but I wasn't a great candidate for the artificial disc because of 2mm of instability at C5/C6. Choosing a fusion let me avoid hardware and I agreed to stay in a neck brace until fused which was at 3 to 4 months. I didn't want possible hardware complications and I knew my body didn't like metals because of reactions I had with pierced earrings. I also knew that my range of motion would be nearly the same with a fusion at C5/C6 because it isn't very involved with head turning. My range of motion is normal except that I cannot touch my chin to my chest when I tuck my head, but it is darn close.

I did a lot of myofascial release before my surgery because I was doing this to treat the TOS, and that helped the neurosurgeon during spine surgery because my muscle was easier to retract. I have continued with MFR since spine surgery which helped me recover from that, and make more progress on TOS. I had to stop seeing my PT because of social distancing now, and I'm doing what I can at home to maintain my progress. I also work and stretch pec minor because that is a compression point for TOS, and have found some tools I can use to press and stretch it as I roll onto it with my body weight. The more I open that up and release the tightness, the better my arm feels and I breathe better too. TOS affects my breathing by making the muscles on one side of my chest too tight, so it doesn't expand well enough, and it pulls up on the first ribs, so they don't relax downward during an exhalation.

Mayo is very thorough in examining all the issues a patient has in a multidisciplinary approach and it is a team effort where the doctors do consult each other and right away, so they are very efficient. My testing and consults were completed in a few days, and I had an answer and an offer of help. I would highly recommend Mayo and my neurosurgeon, Dr. Jeremy Fogelson. I received excellent compassionate care and have great results. Here is my patient story.
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

@jenniferhunter Update on the image I posted the other day of my cervical spine and the concern over that one screw...it's fine. Image made it look like something it wasn't. In fact, I am completely fused! Everything looked really good. The issue with the left arm is probably from inflammation that I had prior to surgery, with the surgery making it worse. The surgeon thinks it's like a shoulder-neck syndrome. The MRI I had in January of that shoulder showed subacromial subdeltoid bursitis. Surgeon wants me to have a guided steroid injection into that area so I am waiting on the pain management place they use to call to schedule. I also have some tendinosis. He thinks the injection will calm things down so I can do my physical therapy. I don't have frozen shoulder but my range of motion is somewhat limited, making some PT stretches difficult and painful. Again he feels is from the inflammation. The surgeon wants to see me after the injection to make sure things are better. We'll see how the injection goes. A little stressed as I am post menopause and yesterday, my body decided to pretend as if I wasn't, if you know what I mean. Seeing my OB/GYN on the 11th. I swear it seems it's one thing after another. LOL.

@amywood20 That sounds like good news. The shoulder injection should confirm it, if it is the source of inflammation. Inflammation from surgery definitely makes other places with inflammation worse and 4 months post op is when that happened to me too. The "shoulder neck syndrome" he describes sound like thoracic outlet syndrome to me which is what I have and that is what the MFR helps, and you don't have to do painful stretches for that, it's all manual therapy. If you don't improve, you may want an evaluation for thoracic outlet syndrome. It is common among spine injury patients and can be caused by a whiplash. I hope you'll check in and let me know how you are doing after treatment. Take care.

@jenniferhunter I will definitely update things as I go. I will add that today I mailed both the shoulder MRI I had done in January and the cervical spine CT scan from April to Mayo Clinic. They did an interpretation of another one a while back and picked up on a few things missed here. It's just for peace of mind...and I love Mayo. 🙂

@amywood20 I'm glad to hear that. If you need names of any of the the doctors who evaluated me, just ask. It was coordinated by the neurosurgeon and neurologist. I love Mayo too, and I miss being there. It's also good to know that I can go back to my neurosurgeon there if I need him. He told me he will always be my doctor until he retires (and that should be a long time) and he still authorizes my PT for thoracic outlet syndrome. He did suggest an evaluation at 5 years post op.

@lilypaws yep, I had an ACDF. It was from C4-C6 with two spacers and a plate with six screws.

@amywood20 I'm sorry you are having issues. I understand your concern with that image. The screws do seem kind of long like they could be breaking through to the spinal canal. What I am not sure about is what kind of artifacts could be caused by the hardware itself on the imaging, so I don't know if the screw is pushing into the spinal canal or right up to it. If you don't get a satisfactory answer from your doctors, you may want to see a neurologist for another opinion who is not associated with the medical centers of your current doctors. If a doctor misses something, others associated with that facility don't want to challenge the current opinion. I had run into that myself before I had surgery when the various surgeons who evaluated me didn't understand my symptoms. I had found the answer myself in medical literature and asked for help in bringing that to the attention of the surgeon, and none of the doctors would help with that even though I had been their patients for several years before I saw the spine surgeon. The only thing they would say is to get another opinion, and I did at Mayo which is where I did get help.

If you see a neurologist who specializes in spine issues or thoracic outlet syndrome, that would be best. You could have thoracic outlet syndrome in addition to the other issues you mentioned and it causes arm and hand pain, and TOS is more common with spine injury patients. You also have surgical scar tissue in an adjacent area if you had a frontal approach in your surgery. I do have TOS in addition to my spine issue which was at C5/C6, and after my ACDF, my TOS got worse and everything tightened up, and doing myofascial release helped me loosen that up. I do have extra tightness on one side of my neck and shoulder that pulls into my rib cage. I keep working on this with myofascial release which I was also doing for several years before my spine surgery. I think it helped surgery go easier because the tissues were looser which made it easier to retract. You might want to look at our MFR discussion for information. Mostly, this is hands on stretching by the therapist while you lie on the table. I have not been seeing my PT because of COVID-19, but I continue on my own as best I can.

You are also at 4 months spine surgery post op and when I was at that stage, that is when my muscles really tightened up. I had no hardware and had to be really careful not to do anything until I fused, but it was at the 4 month mark that I was beginning to fuse and was cleared to begin PT and myofascial release again. MFR might be able to help you even if you don't exactly know the source of the pain. If your PT is not trained in MFR, there is a provider finder on the MFR website. If you do have TOS, it causes compression of nerves in the brachial plexus and blood vessels where they pass between the ribs and collar bone. It is usually missed and misunderstood by doctors, so look for a neurologist at a facility that treats TOS as a condition. I have had some shoulder issues too, a SLAP tear in the capsule in one, and a frozen shoulder in the other caused by the contrast that they injected during an MRI for shoulder instability. Neither of the shoulder issues was the source of my ongoing pain, it was caused by my spine (cervical stenosis) and TOS. My spine has been corrected, and I'm still working on the TOS and making progress.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/

Jennifer, I am at the end of week 7 post-op. My biggest concern was being unable to swallow satisfactorily after surgery. At 6 weeks post-op I saw a speech therapist for dysphagia, and she noticed how tight the right side (same side as my incision) of my throat was compared to the left side, and ordered a barium swallow test. She thought my swallowing problem may be due to either swelling of my throat or to scar tissue from incision. Anyway, the swallow test had to be postponed this week because she was out of town and wanted to be with me during the testing. In the meantime, I began to very gently massage the really tight muscles that began up closer to my chin (not the ones farther down below where my new disks had been implanted), and then two days ago I noticed that the right side of my neck had become much softer and for the first time I was able to take my pills without any major problems, and I even got down a larger nutritional supplement, which I hadn't taken since my surgery. I have concluded that my swallowing problem was the result of swelling after surgery, which brings me to another issue. The night after my surgery, I had a nurse who was wonderful about making my pills into a smaller or in some cases even a powdery form, which she mixed up with chocolate pudding. Then the next morning, she was replaced by another nurse who while I was too groggy to really know what was going on, put all of my pills into one cup of chocolate pudding and fed it to me. I, not understanding what was happening, bit down on one medication that not to be broken apart, and just the liquid from it got down my throat and caused me to violently throw up. Needless to say, when I finished throwing up, I asked the nurse why in the world she gave me the pills like that and she told me that was how she always her patients their pills, even ones right after ACDF surgery. Then she told me that, albeit unconscious at the time, I shouldn't be having any problem taking the pills because I was able to take all of them with just water when I first arrived in my room, which implied my problem was just an emotional one, not anatomical one. Now that I have figured out that my problem swallowing, that I have had until recently, was related to swelling in my throat, causing my muscles to be too tight. Therefore, I am guessing that the reason I was able to take them when I was first out of surgery was because my throat had not swollen yet. Anyway, that was the only bad experience I had while at Mayo. Everything else was wonderful!

Jennifer, I am at the end of week 7 post-op. My biggest concern was being unable to swallow satisfactorily after surgery. At 6 weeks post-op I saw a speech therapist for dysphagia, and she noticed how tight the right side (same side as my incision) of my throat was compared to the left side, and ordered a barium swallow test. She thought my swallowing problem may be due to either swelling of my throat or to scar tissue from incision. Anyway, the swallow test had to be postponed this week because she was out of town and wanted to be with me during the testing. In the meantime, I began to very gently massage the really tight muscles that began up closer to my chin (not the ones farther down below where my new disks had been implanted), and then two days ago I noticed that the right side of my neck had become much softer and for the first time I was able to take my pills without any major problems, and I even got down a larger nutritional supplement, which I hadn't taken since my surgery. I have concluded that my swallowing problem was the result of swelling after surgery, which brings me to another issue. The night after my surgery, I had a nurse who was wonderful about making my pills into a smaller or in some cases even a powdery form, which she mixed up with chocolate pudding. Then the next morning, she was replaced by another nurse who while I was too groggy to really know what was going on, put all of my pills into one cup of chocolate pudding and fed it to me. I, not understanding what was happening, bit down on one medication that not to be broken apart, and just the liquid from it got down my throat and caused me to violently throw up. Needless to say, when I finished throwing up, I asked the nurse why in the world she gave me the pills like that and she told me that was how she always her patients their pills, even ones right after ACDF surgery. Then she told me that, albeit unconscious at the time, I shouldn't be having any problem taking the pills because I was able to take all of them with just water when I first arrived in my room, which implied my problem was just an emotional one, not anatomical one. Now that I have figured out that my problem swallowing, that I have had until recently, was related to swelling in my throat, causing my muscles to be too tight. Therefore, I am guessing that the reason I was able to take them when I was first out of surgery was because my throat had not swollen yet. Anyway, that was the only bad experience I had while at Mayo. Everything else was wonderful!