Excruciating chronic left side neck pain plus lumbar issues

Thank Jennifer.

Unfortunately we are so behind in Australia.

Last night I was sore therefore I did a gentle stretch by going down on my knees and elbows with my head downwards for about 2 minutes.

I wish I didn't do it because this increased my pain a lot, I feel more pain in the left side of the neck and also going down the top of thoracic spine.

I didn't think this would make me worse.

I wrote this email to my pain management doctor this morning:
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Hi Harry,

Sorry to bother you with these emails.

In the last few days I have terrible constipation possibly due to the medication, I feel nausea, unable to eat because feeling full. Also having gut pain.

The left side of my neck is very sore, some tingling, deep pain down the bottom of the neck and going further down the spine on the left. Seems that the side the had cortisone in the facet joints is hurting quite a bit.

Time is passing and I struggle to get up due to the lumbar issues and walking is unsteady due to the upper area of my right buttock being very painful.

Going down hill. Every move or bending that I do can aggravate the condition.

I am also getting referred pain to my shoulders, arms, left hand palm, thumb, index finger, middle finger and little finger on and off.

Best regards
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I am feeling very frustrated and loosing hope of any improvement just with medication. I am not receiving any physical therapy from these neurosurgeon group. The Transport accident insurer won't pay for PT because they say that it hasn't helped in the past when I had the accident.

Now it has been 2 weeks that I feel constant pain in the shoulders, arms, hands and fingers.
I even wake up at night time despite the strong medication which is losing some effectiveness.
The had grip is weak and when I close my fingers to grab something they hurt inside.
The nerve conduction test of the left arm that was done at a major hospital in Melbourne has failed.

Also getting pain in my lower back because I have lumbar issues. Feel a lot of referred pain to the hips.
I told my doctors but I received no response.
I could go somewhere else my there are long waits even if you want to pay for it.

I am not sure if light exercise may help.

Alfred

I’ve been reading your communications with Jennifer and I’d like to offer my 2 cents from one traumatic back suffer to another. I didn’t go all the way back to read how you were injured. I believe you were in some type of traffic accident as a transport driver. You’re trying to obtain treatment from the Australian transporter fund and they’re going slower than you’d like. I read your wonderful description of your neck I juries and I wonder if you had any previous neck problems as your age is unknown to me. I was unable to check your meds you listed for pain as I have no access to Australian pharmacopeia of medicines. My belief is the docs want to see if the meds will calm down your pain and red hot nerve endings if yo are in sever pain, which it sounds like you are. You have a very complicated neck and being a layman I’m not surprised you’re baffled by what the docs tell you. Again not being familiar with your health system down there I cannot comment on its processes but it sounds a lot like our Workers Compensation programs many states have. You pay into it but get minimum service maybe.
I realize you are anxious to find answers and I personally believe you’ll end up needing surgery because you have a complicated neck. The description says you have competing processes pressing in your nerves when they come off your spine. And your discs are being pushed out causing pain and I bet your neck is not very stable. Do you wear a neck brace? You indicated to Jennifer you tweaked your neck running from a bee which is why I asked about a brace. I wish you luck and hope you find relief. Btw I’m a retired nurse and healthcare consultant and a still suffering back patient. Welcome to the club.

@jenatsky @jenniferhunter

Hi jenatsky,

How are you?
Thanks for your reply.

I wasn't a transport driver but a cyclist riding his bike. I was hit by cars in 2015 and 2015. I suffered massive whiplash, broken left transfer processes (2015) and 5 fractured ribs and upper/Lower pelvic ramus fractures (2019). I am currently 66 but I was perfectly fine in July 2022.

I recovered from my injuries and kept riding until the 15th of August 2022. From the next day I felt a bad pain in left of my neck and since then I have got worse. Just 10 days ago I re-aggravated my neck/upper thoracic by bending down to collect my socks. This hyperextended my spine I believe and since then I have daily burning pain in the neck, upper thoracic spine, all sorts of severe pain, numbness, pins and needles, through shoulders, arms, hands, fingers, groin, legs, feet, cervicogenic headaches, left earache (which has been deaf since 2019 due to the accident) , jaw ache, eye pain, sound hypersensitivity in the right ear, occasional abdominal pain. I am a mess. I don't know how complex the condition is, but I am feeling lost and hopeless because the pain is relentless, I can't sleep, sit down for more than 15 minutes. Standing is best, but I can't sleep standing. My quality of life is terrible. Recently the pain management is not helping with the pain despite having oxycodone in the med called Targin. The other meds are Amitriptyline, Pregabaline, Clonidine, Voltaren-XR plus Targin.

Last Saturday had new MRIs for my cervical and thoracic and they are disturbing. Tomorrow my pain management doctor will do a phone visit.

Here are the results from my recent MRIs which are really hard to decipher. Don't look good.

Cervical
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Approximately 2mm retrolisthesis of C4 on C5 and 1.5mm retrolisthesis of the C5 on C6 vertebral body noted.
Multilevel loss of intervertebral disc space height in keeping with moderate-marked degenerative disc disease.
The craniocervical junction appears within normal limits.
C2/3: No significant posterior disc protrusion, spinal canal or neural foraminal narrowing.
C3/4: Discophytic lipping associated with minor spinal canal and moderate right neural foraminal narrowing with
contact of the exiting right C4 nerve root. Mild left neural foraminal narrowing without appreciable contact of the
exiting left C4 nerve root noted.
C4/5: Pseudo disc protrusion along with discophytic lipping associated with moderate left and mild right neural
foraminal narrowing contacting the exiting left and impinging the exiting right C5 nerve root.
C5/6: Spondylolisthesis and uncovering of the intervertebral disc in conjunction with discophytic lipping associated
with mild spinal canal narrowing along with moderate left neural foraminal narrowing seen impinging the exiting left
C6 nerve root. Mild right neural foraminal narrowing contacting the exiting right C6 nerve root also noted.
C6/T. Uncovertebral osteophytosis with associated moderate bilateral neural foraminal narrowing contacting the
exiting C7 nerve roots. No significant spinal canal narrowing.
C7/T1: Discophytic lipping associated with minor spinal canal narrowing along with mild bilateral neural foraminal
narrowing contacting the exiting C8 nerve roots.

Thoracic
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The thoracic spine is sagittally aligned.
Multilevel loss of intervertebral disc space height and disc desiccation in keeping with moderate degenerative disc
disease.
No thoracic vertebral body compression fracture appreciated.
Moderate multilevel facet joint arthrosis.
The spinal cord signal intensity and morphology is within normal limits without evidence for syringohydromyelia.
There is multilevel posterior disc bulge with associated minor spinal canal narrowing and indentation of the thecal sac
anteriorly along with mild multilevel, predominantly mid-lower thoracic neural foraminal narrowing on background
ligamentum flavum hypertrophy without appreciable contact of the exiting spinal nerve roots evident.
SUMMARY:
1. The thoracic spine is sagittally aligned with spondylojic change characterised by moderate multilevel
degenerative disc disease along with multilevel facet joint arthrosis.
2. There are minor posterior djsc bulges predominantly in the mid-lower thoracic spine associated with minor
spinal canal narrowing seen with bulging disc seen indenting the thecal sac anteriorly along with mild neural
foraminal narrowing on background ligamentum flavum hypertrophy at a number of levels without contact-impingement of the exiting thoracic spinal nerve roots appreciated.
3. The spinal cord demonstrates normal morphology and signal intensity without evidence for syringohydromyelia.

Thank you

Best regards

Alfred

Hi Alfred,
Have been hoping your pain would recede by now and praying you would feel better. Read your latest MRIs. I am not a dr,( only very knowledgeable after after 25 yrs of coping and researching of my own severe issues ) but here is what I would do .Seems possible your thoracic pain still can settle down. The cervical area may possibly need a multilevel level fusion C4-C8. I say this because of the retrolithesis, spondolythesis
and multiple nerve roots in contact. I would have to go back and reread the old MRIs, but it appears your cervical problems have become much worse. Please google the medical terms on your MRI so you can better understand your condition. I would expect the pain Mgmt Dr may try and keep you in his shop, I had that happen to me before my back surgery but I would get to the neurosurgeon asap. In the meantime get prescribed for up to 3600 mg per day of Gabapentin. Research has shown taking this before surgery is Very Helpful. Request a 4mg Prednisone dose pack and an increase in your Oxy, and as I have said before Ice, until they can get you in , these will help the most. Hopefully after the neck is fixed the other areas will calm down. There is a law of neuromuscular pain generalization, that once you are overloaded everything starts to hurt. Neck fusions are usually very successful compared to lumbar, so have faith. Thats my humble opinion and what I would do for myself. Prayers for you.

Thanks jm1.
Yes you are right, that neck has been declining since the original neck pain in August 2022.
The August 2022 MRI didn't show all this damage.

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Cervical MRI report August 2022:
The cranio-cervical junction is unremarkable. Cerebellar tonsils are
normally positioned. No abnormal focal or diffuse signal identified in the
cervical spinal cord. There is normal cervical lordosis. No spondylolisthesis identified.
No destructive bony lesions. No acute or remote fractures identified.
Level by Level Analysis:

C2/C3: [No protuberant osteophyte, disc bulging, spinal canal stenosis or
neural foramina stenosis.]
C3/C4:
Minimal broad base central and bilateral lateral disc bulging with associated minimal right intervertebral foramina stenosis
C4/C5: Broad-based central and right lateral disc bulging with associated moderate right intervertebral foraminal stenosis
C5/C6: Disc bulging resulting in moderate bilateral intervertebral foraminal stenosis
C6/C7: Right lateral/foraminal disc bulging resulting in moderate right intervertebral foramina stenosis
C7/T1: [No protuberant osteophyte, disc bulging, spinal canal stenosis or neural foramina stenosis.]
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I don't know what happened, I might have done some inappropriate unintentional movements, maybe physiotherapists and osteopaths pressed too hard and I can tell you some were pretty rough. I don' t know if the cortisone injections back in December 2022 and January 2023 had anything to do with it.

I feel a massive stab as if someone is pushing a needle in anywhere between left of C6 to T7. I feel the pain in that area. I am not sure if I have occasional spinal cord compression as I bend my body. I don't know if the pain that I feel in the upper thoracic spine is referred pain. It could be nerves or facet joints, I can't tell the difference. I hope that a skilled neurosurgeon would be able to tell from the imaging.

The medications have bad side effects like total drowsiness, confusion, nausea and constipation. I made a suggestion to my pain management doctor in regards to Gabapentin, but he didn't listen. I have to follow what he recommends.

I have a phone appointment today with the pain management doctor at 1:30 PM AEST.

I tried ice but is it not helping much as expected.

If I had a C4 to C8 fusion would I get a very stiff neck with very low flexibility?

As far as surgery goes I read a lot of good things about Laminoplasty
Reference:
Cervical Laminoplasty Explained

Best regards

Alfred

Alfred, I didn't mean all cervical 4 levels, multi level is usually maybe 2, possibly 3 levels. A good neurosurgeon may want to see the images not just the report, so get a disc of your images from the MRI office to take to your appt.
You would have to ask the surgeon about laminoplasty, but I don't think that would work for retrolithesis and spondylothesis. I hope you have researched those terms.
The injections didn't cause this. Over adjustments and too frequently by a chiro or osteopath can cause issues. Continuing to exercise too hard and ride your bike with your condition could have caused this. Perhaps the first MRI was not with contrast and the second MRI used contrast dye to highlite the problems better? Was it the same machine? Did they use a new stronger MRI 3T machines like they have at Mayo. The benefit of pain relief from the meds to me outweighs the side effects at this point. Pain breeds more pain, you have to stop the pain cycle. Adapt and plan you day around it, like someone said "welcome to the club" Gabapentin is very very good drug for serious nerve pain, so don't understand your pain Dr's response at all. Wish you had time to replace him.
I already told you how to deal with the constipation so it should not be an issue any longer and keep icing consistently. And no more " might have done some inappropriate movements and stop bending , it just really worries me how much worse you have become in just 5 months! My past suggestions work for most folks with nerve pain. Good Luck with your doctor's. Just know they can never put you back together 100% . At this point there will always be tradeoffs. Prayers for you.

Hi jm1,

how are you?

10 days ago I bent down to pickup my socks which may have overextended my spine.

I spoke to the pain management doctor today and explained the situation.

He does agree that the condition is worse than before but advised be to keep taking the pain medication. He won't prescribe me Gabapentin and told me to keep using Lyrica/Pregabaling 75mg, plus the others.

I haven't been riding since September 2022. When I feel OK I might do a 1.5-2km slow walk to keep some activity, I am not doing weight training either. Obviously I have to lift light things during my everyday things to do.

I don't think I have had a MRI with contrast. I told the doctor about the contrast a while ago but he said that was not necessary.

I do have all my MRI/Scans CDs and can also access the images online, but I can't really understand the significance of the images apart from recognizing the neck and thoracic structure.

I remember that in 2 occasions 2 physiotherapists were a bit rough on me and was told that the pain would go away after 2 days. This was back in October and December 2022.

The osteopath performed massaging below the neck and some dry needling plush traction. At the end he gently held my head an told me to gently turn my head in the opposite way to the way he was holding my head.

When I looked at my images I took a snapshot of my neck and can see that there are some vertebrae a little close to my spinal cord. Once gain I am no expert.
I attached the image and placed 3 arrow where I believe it is close.

It would be good if I could have these images evaluated by some experts.

I found a web site https://mri.deukspine.com/ which provides free assessment but I think it is for people that live in the US.

I am not sure if Australia uses the MRI 3T machines. Normally us Aussies a little behind the rest of the Western World. I know that in Thailand they are pretty advanced with spine surgery.

Thanks again.
Alfred

Hello! I too am new here. I have serious neck issues and wonder if a cervical epidural or a different block would be of help with your pain. I have Ehlers Danlos Syndrome and have chronic pain which is treated by my pain management Doctor. They literally are the people who helped me the most as I cannot get an appointment here at Mayo Clinic’s EDS Clinic after multiple attempts. I rely on my pain Dr. to do blocks and I do take pain medicine daily. You said you had a block that didn’t work but maybe the Dr. didn’t get it in the exact place. It’s a juggling act and I only send this to assure you that there are so many of us that can’t seem to get help and I’ma different continent!! I want you to know you’re not alone and there are many of us in the same situation. Try a different pain Dr. and choose him or her by their patient reviews (wisdom of the crowd) and based on their training and education. This worked for me in finding my awesome pain Dr. and just maybe, getting yet another set of eyes and ears on your case will help you! Sending you hugs and wishes for finding your much needed relief.
PS: I’ve also found distraction a very important tool. A Virtual Reality headset (lying down or sitting) has definitely helped when my pain is out of control in a flair up. When you focus on what you’re watching, whether it be whale watching in the middle of the ocean, orangutans grooming each other or visiting the space station, you get distracted enough to cope through the pain. Every tool that works for you counts!

Hi Alfred
Thank you Embellish 1 for echoing many things I have already told Alfred to do previously on this thread.. I agree with many things you posted.
As far as me, I am alive, which is better than the alternative. My story is too long to get into it here.
Lyrica did not work for me. Takes a very long time to work and most effective dose is 120mg.
Look at Stanford Dr Ian Carrol on Nerve