Excruciating chronic left side neck pain plus lumbar issues

Posted by AlfredB @ab6540183, Dec 23, 2022

Hi Everyone,

I just joined and this is my first post.
I am a 66 year old male that lives in Melbourne Aus.
Thankfully I found this discussion forum in order to get answers in regards to my deteriorating condition.

For the last 20 years I have been an active sportsman doing long distance bicycle riding and body building, but in the last 9 years I have been hit 3 times (2013,2015,2019) by negligent drivers while riding. These accidents have caused me severe whiplash and a multitude of fractures.

Each time I recovered and went back doing my riding passion.

4 months ago I noticed a pretty strong left sided pain around C6 therefore I went to see physiotherapists and osteopaths. But 4 weeks later at the end of August, this pain got even worse when one night while lying down on my loungeroom carpet, I got up and felt multiple crackles in the spine. It didn't hurt at the time therefore I went to sleep and woke up half hour later in extreme pain going from the left side of my neck, left side of my thoracic spine. I felt as if I was twisted. I was unable to sleep or sit. Standing provided some relief but I couldn't sleep.

Things slightly improved over the next 3 weeks.
I had some MRIs done at the end of August 2022 which showed:

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.]
Conclusion:
Multilevel disc bulging and multilevel intervertebral foraminal stenosis. To see the complete reports open the attached PDF.

I contacted TAC which in Australia stands for Transport Accident Commission. They are responsible for paying medical expenses for anyone who has been a victim of a transport accident. Every driver in Victoria pays a premium yearly when they renew their car registration.

I arranged an appointment here to see first and orthopaedic surgeon and then a neurosurgeon. The first specialist told me that I had C6 nerve root impingement and the second specialist reported facet joint syndrome in the neck.

The injury is defined as a mechanical injury.
I noticed a discrepancy between the 2 opinions which left me frustrated. None of the specialists can pin point the exact source of the pain. They both recommended pain management and I am currently on Endep 10, Catapress 100 and Targin 10/5 daily.

Also I was told that no operation for this condition was required and ultimately a fusion, if non invasive, minimally invasive therapies didn't work.

This maybe ok as a temporary solution, but it can't be a life long remedy, because these medicines have side effects and I can't even drive the car to the supermarket when I am drowsy.

In the mean time I had C6 nerve root cortisone injection at the hospital on 1 of DEC 2022, but it didn't work at all after 3 weeks.
I actually have more pain than ever before something like 30% more. I queried the hospital, but they told me that it was done correctly.

Just a few days ago I have had fresh, new MRIs of the cervical/thoracic spine and a bone scan of the whole spine.

Yesterday 23.12.2022, according to the pain management specialist and the neuro surgeon, they couldn't find a lot of difference compared to the previous MRIs taken in August. They were perplexed as to why I feel so much pain. They can't pinpoint the source of the pain.

This is not very re-assuring and I have to keep taking drugs for the next 6 weeks. If I don't take the medication I have extreme, 10 out 10 burning pain that starts around left of neck at C6 going through C7, T1, T2, T3. The pain is also spreading aggressively in the left of my trapezius muscle. I have referred pain in the left shoulder, left scapula, left bicep/triceps and in the little, medium, index finger and left thumb. Referred pain is also felt in the right but not as bad. I also get pain going into my left pec muscle but it is not related to the heart. My cardiologist told that I am fine there even though I can get high blood pressure when I am anxious and stressed out.

To make things worse I have also been getting left/right headaches, left ear ache, left sided head scalp numbness and dizziness from time to time in the last 2 months. Just 2 weeks ago I developed a ringing tone in my right ear which is hypersensitive to sounds. I am a total mess.

The mental depression has been really bad and I have been isolated at home because I am unable to enjoy life like I used to.

Recently when I sit and lie down I feel numbness in my legs and feet. When I stand the problems seems to disappear.

My main frustration is the lack of answers and solutions to fix these problems and two specialists can't agree on a course of action.

I have been doing a lot of research and learned that referred pain can be caused by pressure on neck functional nerves and by facet joints sensory nerves but I don't which one is the culprit. Not even the specialists know.

I am worried that if the compression is not removed in time from those nerves (assuming that it is nerve related) I may get a neuropathy and get paralysis.

My bladder/kidney/liver functions are currently fine.

I don't know if anyone in the Mayo community has come across this and knows something about it.

While searching I found this site which looks promising:
spineconnection org
They can fix a lot of spine related problems.

I haven't received the December MRIs/Bone Scan yet.

Thanks and regards

Alfred

Shared files

summary of mri xray (summary-of-mri-xray.pdf)

Interested in more discussions like this? Go to the Spine Health Support Group.

@ab6540183

Hi Jennifer,

how are you?

Thanks for the info. I will get that collar as recommended.

The last few days I am feeling light headed, short of breath, confused, exhausted, blurred vision, a drifting away sensation, very painful in the left side of the neck and left hand fingers (index and middle fingers). My arms are rather weak currently and every time I lift the sugar container, my right shoulder hurts. Also lots of creaks going through my shoulders and neck when I move them.

I am not sure if it caused by anxiety, the compression of the nerves, the drugs or other.

There is one thing that I didn't mention: for several months I have had stuffy nostrils even though I am not sick and watery fluid leaking out of them from time to time.

I complained to my pain management doctor that medications alone are enough and suggested that he could add physiotherapy as part of the pain management program.

What do you think?

I tried the live relaxation music on YouTube, but the pain is so intense that I am not able to focus on it properly.

Thanks

Alfred

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@ab6540183 Hi Alfred,

I remember lots of noises when I moved my neck. I think that can be caused when a bulging disc is rubbing on a vertebrae. I can get some cracking noises too from the facet joints.

Physiotherapy sounds like a good thing as long as it doesn't worsen your symptoms, but that is something to talk to the provider about.

You can practice with deep breathing and music and see if you can lower your blood pressure. I did this and would take a reading before and after, and I found I could lower mine by 15 points.

Once you get good at that, add imagery, and keep focusing on something you like. If your mind wanders, circle back. You can use a video you watch to do that without sound while you listen to the music of your choice. I also added singing to the mix. All of that taught me how to relax and manage pain when I was going through it. It was my go to self help any time I needed it. When you master that, you will know that you can cope with a difficult situation, so you can stay calm and not panic.

Does anyone else have suggestions for tips to stay calm when you're in pain? @jm1 @pamela35

Jennifer

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Had given some tips to Alfred way back in this thread, about listening to Mozart or soothing instrumental classical. There is research that Mozart helps you reorder your thinking patterns and can help you heal. Watching movies always helps distract me from my pain also, but with Alfred's neck maybe not possible. ICE always cools my down.

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@jm1

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.

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Hi jm1,
how are you?

A few days ago you asked me:

"Did they use a new stronger MRI 3T machines like they have at Mayo"

I just found out that my local MRI services provider, called Marina Radiology, only uses MRI 1.5T machines unfortunately.

I suppose that the MRI 3T machines would provide twice the details compared to a MRI 1.5T machine.

Anyway this is my 2cents worth today.

Thank you.

Alfred

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I see nothing was said about C1, C2. Ever thought about seeing an atlas orthogonal chiropractor?

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@brendaohrt

I see nothing was said about C1, C2. Ever thought about seeing an atlas orthogonal chiropractor?

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@brendaohrt You are asking a good question, and I see you have some experience with C1/C2 instability. That is a delicate situation. My physical therapist told me that it can be it can be very dangerous to move the spine with C1/C2 instability.

For myself, I would not want a chiropractor to move my neck. I had spinal cord compression at C5/C6 and adding extra pressure on an already compressed spinal cord (because of bone spurs) could damage the spinal cord. I did have decompression surgery and a cervical fusion which was successful.

Can you share what your providers have advised for you? Have you consulted a spine surgeon who specializes at those levels?

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Like you, just seeking options.

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Hi everyone,
not feeling well at all. What follows is the letter that I wrote to my pain management specialist due to the extreme phase that I am going through.

--------------------------------------------------------------------------------
Spine worsening gradually over time.
Lots of red flags, severe symptoms

Thursday, 9 February 2023

To: Dr. xxxxxxx

As of 3 weeks ago my neck, spine conditions have worsened drastically.

Last night, the 9th of February 2023, I have had the worse night in bed since this problem started 5 months ago in August 2022.

When lying down in order to sleep, I have the following symptoms:

1)Last night I took my pain management medications comprising of Endep 10mg, Pregabalin 75mg, Clonidine 50mcg, Diclofenac 50mg and Targin 10/5.
2)As soon as I placed my right side of the head on the pillow, I started to feel almost immediately a bilateral constant excruciating (10/10), burning, pain starting at the rear bottom of the skull, going down the base of the neck and spreading further into the first 10 cm of the mid spine bilaterally. It feels as if there is barb wire inside my neck and spine. There is also tightness, numbness, and tingling. Sleeping on my back hurts just as much. I can’t sleep on my left hand side either. There must be some badly pinched nerves and degenerated facet joints.
3)When I move my head, I hear a lot of loud creaks inside.
4)I feel pain in the upper part of the thoracic spine
5)I feel pain in both sides of the lumbar spine, especially on the right. There is constant sharp pain above my right buttock. When I walk, I limp due to the pain in the right and side of the lower back.
6)There is pain between both ball joints of my legs going into the hips. The hips also hurt.
7)Numbness and tightness are felt in the area below the scrotum, behind my legs, all the way to the feet and toes. Pain, tightness and tingling are felt at the bottom of the feet, toes, back of the foot, the Achilles tendon and the calves.
8)Pins and needles occur and are felt in the anus, the back of the legs, arms, elbows, knees, on top of my head on and off.
9)I get strong headaches left and right of my head. I get dizzy and confused at times.
10)My jaw, my left and right ears hurt at times.
11)My left ear has been deaf since 2019 when a van hit me while riding my push bike in the bike lane. My existing left tinnitus is much louder now. As of 2 months ago, right ear tinnitus has developed. Now I suffer from additional ringing and sound hypersensitivity. For example, the noise of cutlery hitting a porcelain plate sounds extremely loud.
12)I feel strong really deep aches in the left and right sides of the neck. Now the right side hurts more than the left side. It used to be that only the left hurt. These deep aches are felt under the jaw, at the back and sides of the head, down the left side of the trachea near the throat. Also feel left facial numbness occasionally.
13)I am getting abdominal pains from time to time, even on an empty stomach. I have referred pain that runs into the chest pectoral muscles on and off.
14)My legs and arms twitch from time to time. My shoulders, arms, hands, fingers (thumb, index, middle and sometimes little finger) also hurt badly. The arms are a lot weaker than 2 months ago, especially the right arm. My right-hand knuckles can hurt and my right hand fingers feel tight and painful when I clench my hand.
15)When lying down, my legs and head jerk from side to side automatically on their own on and off.
16)When I get up I hear loud creaks in my shoulders, wrists, hips bones.
17)When my left and right side of neck hurts badly, I feel referred pain into the legs and feet, either left or right.
18)Anxiety, stress and depression have reached new highs.
19)I am not copying and I feel desperate, because things aren’t improving. I cannot understand what is happening to me and now the medications, despite making me pretty drowsy, are not shutting down the pain signals. I get really dry mouth and bad constipation. This is a real torture, hell on earth.
20)Sitting down is not as bad as lying down, but moderately painful. I cannot sit for more than 20 minutes, before more pain starts kicking in. When I stand up, I feel the least pain.
21)I need some resolutions.

Best regards

Alfred

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Praying that you get relief- and soon.

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What do I do when pain management drugs aren't working to mange your pain?
Do you increase the dose?
I can't cope with the unbearable pain?

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@ab6540183

What do I do when pain management drugs aren't working to mange your pain?
Do you increase the dose?
I can't cope with the unbearable pain?

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Hi Alfred
When pain shifts from side to side, that is sign of spine instability, it can happen. It's scary, but for me on a positive note sometimes it give me a breather as the pain on the old side gets a rest. The creaking or cracking is called crepitis .
No one but a dr can tell you to increase your doses. Sorry to say drowsiness, dry mouth and constipation and (stomach pain probably from Diclofenac, zinc and tumeric) are just par for the course. Eat soda crackers as empty stomach makes it worse.
I completely rest in ice all day long, use Biotene gel for dry mouth and senna, when this bad.
You sound so bad today, it might be time to go to hosptial and get the morphine shots. At least it will be medically supervised and provide some relief quickly. Prayers for you

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