Cervical C5-6 Nerve

I have stenosis and get chills too. It's weird to step in a hot shower and still have chills! I hope you get a good neurologist. I have benefited from seeing an orthopedist who does not do surgery, but there is a point when we need surgery. I am not there yet and feel that when I fact that serious decision I will get a few opinions from docs who do not benefit from surgery!

hi "Windy," Have you had recent imaging, do you have your issue at cervical or lumbar. My chills severity and duration have progressed with my cervical issues. My primary care provider just responded back in a message to me last week stating that compressed nerves do not cause chills, however artificial intelligence (AI) states it does due to blood flow constriction to brain which impacts body temperature regulation. Have you seen any published literature on the chills? Did your doctor attribute your chills to stenosis? Thanks for your response, it is helpful to hear others have the same symptoms too.

@dstone501957 I'm not sure what procedure you are scheduled for in a few days, but it certainly sounds like it should be to address the issues at C5/C6. I am a spine surgery patient and had a ruptured C5/C6 with bone spurs and spinal cord compression. I had a fusion done single level with no hardware, with just a bone graft. I also have thoracic outlet syndrome and that makes one side of my neck tighter than the other and it can cause muscle spasms that begin to rotate cervical vertebrae, and it can throw off my jaw alignment like TMJ. That can cause jaw or ear pain if it is off enough to affect the nerves that pass through near the angle of the jaw. Since surgery, my neck has calmed down a lot, but I can cause a muscle spasm that can slightly rotate vertebrae, so I stretch to get it realigned again. TOS can be more common in spine patients because of injuries that can cause both problems. A physical therapy evaluation could define some of those issues. Blood flow to the brain can be affected if you have rotated vertebrae because the vertebral arteries run inside each side of the neck vertebrae and rotation would stretch them if if stays like that because of a muscle spasm. For me that caused vertigo and dizziness.

Surgeons do tend to think about just the spine, and compare symptoms to a dermatome map of where the spinal nerves go, but if you also have spinal cord compression, it can affect anything below that level depending on what gets compressed. I wouldn't worry about the chills. The surgery is based on the physical problem on the imaging, and that won't change. When you have an unusual symptom that a surgeon doesn't understand, it is easy for them to back out because they do not want a poor result from their surgery. That happened to me because I had pain that changed and moved all over my body because of spinal cord compression, and they wanted to suggest problems like MS. 5 surgeons turned me down. I found one at Mayo who understood this issue of the pain that I had called funicular pain.

If you don't understand what your surgeon is suggesting and why, contact them and get an explanation of what is shown on your imaging and how the surgery will address this. You have to live with the result of the surgery and it is a long recovery. This sets the stage for any other possible future spine surgeries.

What is the surgical procedure that you are scheduled for?

Hi Jennifer,
At my insistence, I just recently had the MRI on Thursday, October 10. The Cervical Radio Frequency Ablation procedure was scheduled on September 25th to be performed on October 16. The pain management Dr doing it felt that C5-6 would not be causing my severe dull burning ear pain and wanted to do the Ablation procedure on my C1-4. Since I had not had any updated imaging since August 2023 (cervical and lumbar x-ray, last MRI was February 2023), I wanted to know better what was actually going on in my cervical. My own PCP said no to MRIs twice in the last 3 weeks, said it was a pain management issue. Pain Management Dr when asked about getting updated imaging just indicated ablation was an alternative to surgery. After a third attempt with my PCP to do MRIs, he was not available due to Jewish holiday. I convinced the Pain Management Dr to order the MRI. neither my PCP nor the Pain Management Dr have reviewed the Radiologist report yet, it was just issued on Friday, October 11. My orthopedic surgeon that I was seen by in August 2023 has not reviewed the MRIs yet either. His nurse recommended that I get the MRIs that the Orthopedic surgeon would review prior to scheduling a follow-up visit. As for the chills, they are horrible and have progressed significantly in duration and intensity. Need a determination and resolution of the chills too.

@dstone501957 I have always thought the chills either come from the brain or the brainsstem. I have a positive Babinski reflex and my neuro says I have spinal cord damage in my neck. Oddly I have also had chills from a reaction to a medication, so inflammation must play a role.

@jenniferhunter I learned a lot from your post as well as the post by @dstone501957. My symptoms have worsened recently- the last two months, and you both have me thinking.

Also, I wonder if my trigeminal and occipital neuralgia is related to neck issues (you mention ear pain, which may be neuralgia). Tinnitus and hyperacusis have gotten worse and loud noises cause me a lot of facial/neck pain and numbness. All very confusing. It seems the auditory and facial nerves are connecting and causing symptoms but neuro says it is all coming from the neck.

@jenniferhunt you mentioned a bone spur, I can feel mine on the left side of my neck and it affects my neck, shoulder blade and arm (arm is shorter than the other now).

Also I have a note from neuro saying I cannot bend my neck back at all. I cannot look up. I get really bad symptoms. In surgery the surgeons had to adhere to that note. Is this a problem for either of you?

@dstone501957 let us know what the plan is going forward, after exploration of options. I am grateful to learn from others. I don't like wild goose chases seeing many doctors for mysteries like this, I have seen my neuro for 23 years and he thinks I am close to needing surgery. I hope you find good help.

@dstone501957 Has your spine surgeon given an opinion? Personally, I think I would trust a spine surgeon more than a pain management doctor, but I have no experience with burning nerves. There have been members here on Connect that regretted doing that and were in more pain and dysfunction as a result of some laser surgery to burn nerves. It may confuse the diagnosis with a spine surgeon if you are having symptoms caused by an ablation procedure.

I understand that you are worried and want resolution, but please don't rush into a procedure if you don't fully understand the possible benefit vs the risks. Take your time to get enough medical opinions to make an informed decision. Did that doctor justify the reason they think ablation will help, and what are the statistics of the patients it helps vs the patients that don't improve? If you have already worked through those decisions and want to go forward, that is your choice.

You have a significant report on your MRI with a lot of structural issues and you were right to advocate to get that done. If your spine surgeon is not on board with helping you, it would benefit you to get more spine surgical opinions. The short explanation is you have a ruptured disc that has grown bone spurs like a shelf and is flattening your spinal cord at C5-C6 along with arthritis causing compression of the nerve roots where spinal nerves exit the spinal cord. You should get offers for surgery on that because it is advanced. That being said, if you have surgery for C5-C6, there may be lingering pain due to current existing nerve damage. Sometimes surgeons can't tell you exactly what the outcome will be, and won't promise pain reduction, but they focus on correcting a structural problem so it doesn't get worse. You also need to know how the issue at C5-C6 will progress over time if you have no surgery, so please ask that question. The spine can start to fuse itself when a disc collapses and the vertebrae get closer together and that isn't a good thing. C5-C6 may need priority, and it would be worth getting a review from the spine surgeon on the MRI. I think the difficulty sitting and standing and laying down may be because of significant spinal cord compression, but you need a specialist to make that connection. Those are symptoms that happen with cord compression, and I had a limp when walking because of cord compression. It can also cause bladder or bowel issues like incontinence or severe constipation, and difficulty walking. It would be to your benefit to join conversations where these issues have already been discussed among active members as opposed to starting a new discussion and hoping members will find you. Here are some discussions in the Spine Health Group you may want to check out.

Cervical Stenosis
https://connect.mayoclinic.org/discussion/cervical-stenosis/
Cervical Stenosis & Leg Weakness
https://connect.mayoclinic.org/discussion/cervical-stenosis-and-leg-weaknesd/
Mayo Podcast
https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/spinal-stenosis-1/

My PCP several months ago worked with some medical info I provided for trigeminal neuralgia, had me try Carbamazepine, after a few weeks I could not tolerate it, and I was not seeing any benefit. Main issue with it was tardive dyskinesia (involuntary body movements). Neurologist thought it was the greater auricular nerve and prescribed Oxcarbazepine, which I could not tolerate either with similar tardive dyskinesia side effect. Another Neurologist that my PCP referred me to, totally dismissed my opinion that it was a compressed nerve in my cervical and said it was neuropathy. He over medicated me on gabapentin took me from 300mg 3 times a day to 600mg 3 times a day plus put me on 25 mg of nortriptyline, a second follow up visit he still refused to consider a compressed nerve and increased me to 800 mg 3 times a day on the gabapentin and 50 mg of nortriptyline. I could not tolerate the 800mg level of gabapentin. I have since discontinued the nortriptyline and decreased the gabapentin back down to 300 mg 3x a day. There was no noticeable improvement with the increase in dose and the nortriptyline he added. My recent October 10 Cervical MRI has proven my opinion to be correct. I hope to hear from my DRs that will be reviewing the Radiologist MRI report early this week.

@windyshores If you are feeling something hard on the side of your neck, it is probably the boney spinal processes. Those stick out to the side (laterally) and to the back (dorsally). These are where the muscles connect to move your neck. If you have some rotation of vertebrae, you may be able to tell by checking to see if the spinal processes are lined up. The best bet is to see a physical therapist for this because they can tell by feeling with their hands. Bone spurs on the spine are usually inside the spinal canal or the foramen (nerve root exits) and you would not be able to feel that with your hands. Neck muscles can also be hard and spasmed.

Thoracic Outlet Syndrome (which I have) is most often missed by doctors or mis-diagnosed. That was the reason I started doing Myofascial Release with a physical therapist. TOS caused one side of my jaw to get so tight, I was wearing out my dental filings only on that side when I was grinding my teeth at night. I would get one sided headaches on the back of my head because rotation of vertebrae stretches muscles and they complain. I would get pain across my face and into my jaw and think it was my teeth hurting, and some ear pain. Ear pain also comes with sinus allergy congestion and you can have these both contribute. The Pterygoid muscles can get very tight. When you open your jaw and press inside your mouth on the muscle behind your last lower teeth (where dentists inject pain killer), it may feel very tight. you can use your finger to press and try to get it to relax. There may be a tight muscle between the jaw and ear (on the outside) that you can press on to relax it. These are things my PT has done with me.

I had a positive Babinski reflex too.

When you have TOS along with cervical spine issues, it does confuse where the pain is coming from, and it can be coming from multiple sources. Myofascial release with a good PT can help a lot. I did this for several years and when my spine issues became evident, my tissues were looser, so it was an easier surgery.

If looking up causes dizziness, it's possible this may be caused by rotated or tipped vertebrae. This happened to me when C1 & C2 were slightly rotated and I looked up. It caused vertigo. Think of it like this. The vertebral arteries inside the cervical vertebrae are slightly stretched because of the rotation, then when I looked up, it kinked them temporarily, and that started vertigo. That is part of the blood supply to the brain. Working with my PT resolved this and since spine surgery, everything calmed down, so this doesn't happen anymore. Since my surgery, I can look upward, but that's not the best thing to do. I don't get symptoms beyond fatiguing muscles.

In addition to doing MFR work, my PT was also using a Dolphin Neurostimulator to interrupt pain signals and stop muscle spasms prior to my spine surgery. It eased pain for about a week.

Chills can also come from low thyroid function or low blood sugar. Perhaps even hormonal changes in aging women as that seems to affect people differently.

Here is our MFR discussion. It has helped me a lot.

Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

@dstone501957 Yikes! I think you are correct about cervical spine issues of nerve compression. Doctors see what they want to see, and the neurologists have been pushing drugs to treat symptoms instead of looking for the cause of the problem. You really need above all else, the opinion from a good spine surgeon. You have the right to fire doctors who are not helping you and seek better specialists. This is exactly why patients need to advocate for themselves. If you have physical problems, perhaps physical therapy helps that or surgery that corrects a physical problem of structural damage and compression. No drug is going to fix spinal cord or nerve compression. They are just treating symptoms and not solving problems. They have been wasting your time as your spine condition worsens and you have symptoms common to cases of spinal cord compression. It's just maddening. I went through 2 years of jumping through hoops and being denied help. They wanted to give me Gabapentin too. I chose surgery instead when I found a competent surgeon at Mayo. I did it early enough that all my pre-surgery pain was resolved, and I don't have spine related pain or disability from a spine condition now. Keep after your surgeon about the radiology report and you may want to research some other surgeons for second opinions. There will be a waiting line for an appointment.

Jennifer,

You raise a good point on bladder issues, I could consume quite a bit of water or liquids while up on my feet being active and never have to urinate. However, if I lay down for an hour during the afternoon, I will have to get up 3 to 4 times to go even though I did not even consume any water or liquids. I have never brought this symptom up yet, is this the expected bladder impact? One other unusual symptom is periodic sharp pain in my left eye, the eye Dr I see for annual exams could not find anything wrong, just prescribed some anti-inflammation drops. I had been wondering if it was nerve related too.

Unrelated I see an oncologist for MGUS, during my recent follow-up with him on October 4th, I asked his opinion about Cervical radio frequency ablation (RFA), although not his area of expertise he said from what he has heard and seen expect to see 60% to 65% success. I was even more concerned about RFA after I contacted the Orthopedic nurse for a follow up from my August 2023 visit. At that time, the orthopedic surgeon felt that I would benefit from pain injections at C5-6. When I mentioned the RFA procedure to the Orthopedic nurse last week, she highly recommended that I do not proceed with it. The nurse said they would review an MRI prior to scheduling my follow-up, but since it had been over a year since my last visit, I would need my PCP to order the MRIs. Can you even believe my PCP said no twice? I got the Pain management Dr doing the scheduled RFA to order them. I am heavily leaning towards postponing the RFA pending the Orthopedic Surgeon recommendation for the C5-6. I had been expecting to see the more severe impact at the C1-4. This is all beginning to make more sense now too, what has been dismissed in the past as peripheral neuropathy in hands and fingers is more likely from the C5-6 issues. One of the neurologists I had seen was leaning towards early stage Parkinsons due to what she felt was a noted weakness in my arms and a mild tremor in my hands and Small Fiber Neuropathy causing the dull burning ear pain. She was totally wrong. I am glad that I insisted on an updated MRI. Thank you for your input.