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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.

jm1 | @jm1 | Jan 16, 2023
In reply to @ab6540183 "My last 4 and half months with extreme cervical and lumbar pain As my body is..." + (show)
@ab6540183

My last 4 and half months with extreme cervical and lumbar pain

As my body is waking up from the drugs I am getting a strong pain feeling going down the sides of my neck that also feels numb and unconnected to the rest of the spine and the body. It is weird. I am awake, but I feel distant from my inner self. The depression is high. I am not enjoying life. The drugs are modifying my personality. It is an awful moment of life to live like this without a goal and a solution to my issues yet.
I tried to make an appointment with another neurosurgeon, but I will have to wait till the end of March. My current doctors have been informed but the response is slow.
I get told that, if the pain is too high, to go to hospital.
The last 2 times that I went to the hospital emergency department I was given a morphine shot and sent home the next day.
The public hospital, the doctors are not really concerned with your issues and in the meantime my body is deteriorating. I have constant neck, lumbar, shoulders and arm pain. The arms are getting weaker.
The system is about money and has abandoned me in the middle of the ocean with no way of being rescued.
I am sure that if I were a politician, an important person I would have been rescued by now.
No one cares.

Jump to this post

Alfred, people care or we wouldn't respond. When I read your August MRI, I too am perplexed as your drs. Finding the focal pain generator is very important before they recommend any surgery.The medical people care, it's just they seem to lack urgency because they know it takes time to receed. Nerve inflammation takes time to heal and the pain to me is the worst of all types of pain. But one thing I learned is that conservative care is the best pursuit and with the right level of cortisone orally and proper placed injections it can be tamed. You may have to take some oxycontin and gabapentin and have shots several times over a year. BUT it way better than doing surgery. Many who have had spine surgeries regret it. One fusion leads to another fusion, loose hardware, arachnodosis, all kinds of issues. I have 5 cervical 5 lumbar and 2 thoracis levels with troubles. I have been fighting chronic dorsal nerve root pain at L4 from a lumber laminectomy in 1998. As queen of pain, I know the cervical nerve pain especially when its numb all the way down you arm and you cant even lift your arm and your finger and numb, can drive you crazy, I will take the conservative path everytime, steroids and oxy toll it recedes.. But it takes lots of time and patience. I dont golf or play tennis anymore, but can occasionally ride a bike and love nature walks. The point is ,you find a way to adapt. Also, find a PT who does neuromodulation and cold lasar, they really help!. And remeber the ICE!!! ICE ,ICE!!
your friend JM1

REPLY
1 reply
jm1 | @jm1 | Jan 16, 2023

Ps. Like Jennifer would also like to know where the neurosurgeon studied in the USA.
Also if you havent stopped riding and lifting weight, need to stop. Lifting weights may have caused some of your issues. When you are better, find new isometric exercises ,perhaps plank, but no more bilateral flies with weights, they will flare you up everytime. I do all my upper body work laying down with my alone totally out of gravity. Had to give up my 10 speed and only use recumbent bike in gym. Like I said, have to adapt, fusion is not always the best answer. Read " Watch you back" a dr talks about the oversold business of fusions.. jm1

REPLY
1 reply
AlfredB | @ab6540183 | Jan 16, 2023
In reply to @jm1 "Alfred, people care or we wouldn't respond. When I read your August MRI, I too am..." + (show)
@jm1

Alfred, people care or we wouldn't respond. When I read your August MRI, I too am perplexed as your drs. Finding the focal pain generator is very important before they recommend any surgery.The medical people care, it's just they seem to lack urgency because they know it takes time to receed. Nerve inflammation takes time to heal and the pain to me is the worst of all types of pain. But one thing I learned is that conservative care is the best pursuit and with the right level of cortisone orally and proper placed injections it can be tamed. You may have to take some oxycontin and gabapentin and have shots several times over a year. BUT it way better than doing surgery. Many who have had spine surgeries regret it. One fusion leads to another fusion, loose hardware, arachnodosis, all kinds of issues. I have 5 cervical 5 lumbar and 2 thoracis levels with troubles. I have been fighting chronic dorsal nerve root pain at L4 from a lumber laminectomy in 1998. As queen of pain, I know the cervical nerve pain especially when its numb all the way down you arm and you cant even lift your arm and your finger and numb, can drive you crazy, I will take the conservative path everytime, steroids and oxy toll it recedes.. But it takes lots of time and patience. I dont golf or play tennis anymore, but can occasionally ride a bike and love nature walks. The point is ,you find a way to adapt. Also, find a PT who does neuromodulation and cold lasar, they really help!. And remeber the ICE!!! ICE ,ICE!!
your friend JM1

Jump to this post

Hi jm1,
thanks for your reply.
When I said no one cares, I wasn't referring to the Mayo Clinic Forum mentors and helpers, but to my situation here in Melbourne Australia where my current doctors are not making progress with my condition. It is taking a long time to identify the source of the pain. I feel most pain between the left of C6 to T1.
Also the public hospital system in Australia is terrible. Basically when you call emergency due to excruciating pain, the ambulance will come to take you to the closest hospital. While in the ambulance they will give you a shot of morphine, then land you in a hospital bed overnight. The next people are discharged without any further investigation into the problem.

I have been told that if a nerve is compressed for too long it can get damaged and you may get paralysis.

Currently I feel a continuous left sharp stab between C6 and T1 that feels as if someone has placed a needle inside.

To make things worse my lumbar issues amplify the overall pain.

Best regards

Alfred

I read about the fusion problems after surgery, but have also read about procedures such as laminoplasty and ultrasonic type surgery where they preserve the spine structure.
Unfortunately I can't find any such procedures here in Australia.

I have been using ice but I do not notice any improvement.

For pain management I have been taking Endep 10mg, Lyrica 25 mg, Clonidine 50mcg, Diclofenac 50mg and Targin 10/5mg.

It doesn't always work even though it makes me really drowsy. At times I still feel the pain.

REPLY
1 reply
AlfredB | @ab6540183 | Jan 16, 2023
In reply to @jm1 "Ps. Like Jennifer would also like to know where the neurosurgeon studied in the USA. Also..." + (show)
@jm1

Ps. Like Jennifer would also like to know where the neurosurgeon studied in the USA.
Also if you havent stopped riding and lifting weight, need to stop. Lifting weights may have caused some of your issues. When you are better, find new isometric exercises ,perhaps plank, but no more bilateral flies with weights, they will flare you up everytime. I do all my upper body work laying down with my alone totally out of gravity. Had to give up my 10 speed and only use recumbent bike in gym. Like I said, have to adapt, fusion is not always the best answer. Read " Watch you back" a dr talks about the oversold business of fusions.. jm1

Jump to this post

I stopped riding in October 2022 because I couldn't due to the pain.
I ride an exercise bike at home for 15 minutes a day when my pain is not too bad.
Just 6 months ago I used to ride my Pinarello F10 Dogma DI2 bike anything between 60 and 80km without issues.

Also I haven't done gym since the problem started in August 2022.

I am only doing a slow light walk which I struggle with. It is not pain fee and I must make sure that I walk slow. I also wear a soft collar when I walk.

How do you do your upper body out of gravity. If I lie down my pain is at its worst. When I stand I feel the least pain.

Alfred

REPLY
1 reply
jm1 | @jm1 | Jan 17, 2023
In reply to @ab6540183 "I stopped riding in October 2022 because I couldn't due to the pain. I ride an..." + (show)
@ab6540183

I stopped riding in October 2022 because I couldn't due to the pain.
I ride an exercise bike at home for 15 minutes a day when my pain is not too bad.
Just 6 months ago I used to ride my Pinarello F10 Dogma DI2 bike anything between 60 and 80km without issues.

Also I haven't done gym since the problem started in August 2022.

I am only doing a slow light walk which I struggle with. It is not pain fee and I must make sure that I walk slow. I also wear a soft collar when I walk.

How do you do your upper body out of gravity. If I lie down my pain is at its worst. When I stand I feel the least pain.

Alfred

Jump to this post

I lay down to take my body out of gravity.
You said this started in August, riding in October aggravated it.
Try wearing the collar when laying down. Nerve pain can be very positional, experiment with different pillows or bolsters to find most comfortable position

REPLY
jm1 | @jm1 | Jan 17, 2023
In reply to @ab6540183 "Hi jm1, thanks for your reply. When I said no one cares, I wasn't referring to..." + (show)
@ab6540183

Hi jm1,
thanks for your reply.
When I said no one cares, I wasn't referring to the Mayo Clinic Forum mentors and helpers, but to my situation here in Melbourne Australia where my current doctors are not making progress with my condition. It is taking a long time to identify the source of the pain. I feel most pain between the left of C6 to T1.
Also the public hospital system in Australia is terrible. Basically when you call emergency due to excruciating pain, the ambulance will come to take you to the closest hospital. While in the ambulance they will give you a shot of morphine, then land you in a hospital bed overnight. The next people are discharged without any further investigation into the problem.

I have been told that if a nerve is compressed for too long it can get damaged and you may get paralysis.

Currently I feel a continuous left sharp stab between C6 and T1 that feels as if someone has placed a needle inside.

To make things worse my lumbar issues amplify the overall pain.

Best regards

Alfred

I read about the fusion problems after surgery, but have also read about procedures such as laminoplasty and ultrasonic type surgery where they preserve the spine structure.
Unfortunately I can't find any such procedures here in Australia.

I have been using ice but I do not notice any improvement.

For pain management I have been taking Endep 10mg, Lyrica 25 mg, Clonidine 50mcg, Diclofenac 50mg and Targin 10/5mg.

It doesn't always work even though it makes me really drowsy. At times I still feel the pain.

Jump to this post

Our hospitals would do the same thing if they determine it is not emergency requiring immediate surgery. They want us to see our Dr's for ongoing care, the ER here is only for critical care and triage.
Several of those meds you mentioned never helped me, like I said before, Gabapentin really helped with nerve pain. Maybe dr can up the Targin to 10mg. Stop the endep and try a different anti flammatory. I had great results with 400mg of Lodine. OR get the steroid dose pack.
It is very difficult to isolate the focal pain generator. It took years and years to be sure with me.
Perhaps an MRI with contrast might help show your impingment better.
Don't let fear rule your life. I know the feeling of not knowing and wanting faster results will eat you up and make you worse.
Ice more, it takes a lot of icing.
Try and Take a few days of doing absolutely nothing.

REPLY
1 reply
AlfredB | @ab6540183 | Jan 17, 2023
In reply to @jm1 "Our hospitals would do the same thing if they determine it is not emergency requiring immediate..." + (show)
@jm1

Our hospitals would do the same thing if they determine it is not emergency requiring immediate surgery. They want us to see our Dr's for ongoing care, the ER here is only for critical care and triage.
Several of those meds you mentioned never helped me, like I said before, Gabapentin really helped with nerve pain. Maybe dr can up the Targin to 10mg. Stop the endep and try a different anti flammatory. I had great results with 400mg of Lodine. OR get the steroid dose pack.
It is very difficult to isolate the focal pain generator. It took years and years to be sure with me.
Perhaps an MRI with contrast might help show your impingment better.
Don't let fear rule your life. I know the feeling of not knowing and wanting faster results will eat you up and make you worse.
Ice more, it takes a lot of icing.
Try and Take a few days of doing absolutely nothing.

Jump to this post

H jm1,

thanks very much for your useful answer.
I will ask the pain management doctor to revise the prescription and ask him to add Gabapentin and Lodine .
I am already taking Targin 10mg. The 5mg is for the Naxolone and 10mg is for the oxycodone.
It is currently 1:45AM in Melbourne and I can't sleep due to the extreme burning pain in the neck.

Even though I took the recommended meds, they are not being effective anymore.
The pain has increased by at least 40% since last Tuesday.

I don't know what is going on.

Should I go to the physio or am I too inflamed to let anyone touch me?
Would gentle remedial massage of the neck help me?

Thank you.

Alfred

REPLY
jm1 | @jm1 | Jan 17, 2023

Sometimes massage aggravates it more. See if you can find a PT with neuromodulation or an X5 soft tissue oscillation therapy. These helped me alot with nerve pain.

REPLY
1 reply
AlfredB | @ab6540183 | Jan 17, 2023

Hi everyone,

I managed to get an appointment for a second opinion for my conditions on 22 March 2023.
This is a long time to wait unfortunately but I will wait.

The neurosurgeon's secretary rang me up this morning and told me that he can only treat me for the cervical issues, not the thoracic ones.

I told her that on their website they treat thoracic issues and she answered me that are a several types of thoracic issues but not my particular thoracic issue.
It is like saying my car engine is not working but we can only work on the pistons, nothing else.

I thought a neurosurgeon could treat the brain and the rest of the spine. 😞

This is his services' web page links for thoracic issues:
https://www.advancedneurosurgery.com.au/thoracic-discectomy.html
https://www.advancedneurosurgery.com.au/thoracic-laminectomy.html
https://www.advancedneurosurgery.com.au/thoracic-vertebrectomy.html
but under Thoracic vertebrectomy and Thoracic laminectomy says "coming soon"

Alfred

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