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 willjean19

How are you?

Thank you very much for sharing your experience.

Today I feel very disappointed.

I had an appointment with my pain management doctor this morning. I asked him to explain the MRI and the results of the C7/T1. T1/T2, T2/T3 facet joints cortisone injections.

I also asked him the meaning of "severe right neural compressive foraminal stenosis" but he told me that people may have this and have no symptoms and should not worry about it.

I am trying to understand what is meant by right and left on the MRI report. Is it my rear left/right or my front left/right? @jenniferhunter

I was told by him that my anxiety is increasing the pain. I told him that when the pain increases to astronomical levels, I get anxiety, not the other way around.
When my pain is low I don't complain.

He doesn't think that the facet joints are causing the pain.

According to him, he doesn't know where the pain is coming from yet.

I thought the proper diagnostics would be to test all suspect facets and nerves one by one until the correct source is found.

I can tell you with some certainty that my main pain is between C7-T1. The pain is a burning type causing tingling and numbness going downwards. I also get referred pain in my left trap, shoulder, arm, index/middle fingers from time to time.

Then I asked the doctor what is his plan for me. He told me to keep taking the pain medication (endep, lyrica, diclofenac, clonidine and targin) .

I questioned him: For life?
He answered: Why not?

I am not prepared to take this drugs to mask my pain for ever. I want the problem fixed.

I think that I should be looking for another specialist.

Best regards

Alfred

Jump to this post

Hi
Sounds like you should get another Doctor. Ask them if you can try Gabapentin and get off the other meds that didnt help me at all. Try a steroid injection or dose pack for flare ups.

REPLY
@ab6540183

Hi willjean19,

I am attaching the latest cervical/thoracic MRI (21/12/2022) and bone scan to this reply.

I find it hard to understand which right are they referring to? From the front or from the rear of the body?

For example:
C6/7: Uncovertebral disc osteophyte complex is larger on the right with severe right neural compressive foraminal stenosis. Moderate left foraminal narrowing.

Thank you.

Alfred

Jump to this post

Hi Alfred -

I do not hold the expertise to interpret your MRI results.

I would seek an opinion of another medical professional.

Best of luck to you

REPLY

Hi everyone,

as of last night I started feeling a new pain in the right hand side of my neck. It is quite painful and it is shooting down the right trap, shoulder then into the right hand.

Looks like that I am slowly deteriorating. 😢

My anxiety and depression have gone up. I am feeling a bit lost.

REPLY
@ab6540183

Hi everyone,

as of last night I started feeling a new pain in the right hand side of my neck. It is quite painful and it is shooting down the right trap, shoulder then into the right hand.

Looks like that I am slowly deteriorating. 😢

My anxiety and depression have gone up. I am feeling a bit lost.

Jump to this post

I'm so sorry you are experiencing this. I, too, have degenerative disk disease in my neck and am often in serious pain. For me, at 55, I still have more good days than bad, but I'd be lying if I said I wasn't scared to death when it's at its' worst that, if it should stay that way, my quality of life would be nil. I am reading your posts with interest and empathy for what you're going through and hope you can find some relief, both for yourself and to give me some hope for what lies ahead for me.

REPLY
@ab6540183

Hi willjean19

How are you?

Thank you very much for sharing your experience.

Today I feel very disappointed.

I had an appointment with my pain management doctor this morning. I asked him to explain the MRI and the results of the C7/T1. T1/T2, T2/T3 facet joints cortisone injections.

I also asked him the meaning of "severe right neural compressive foraminal stenosis" but he told me that people may have this and have no symptoms and should not worry about it.

I am trying to understand what is meant by right and left on the MRI report. Is it my rear left/right or my front left/right? @jenniferhunter

I was told by him that my anxiety is increasing the pain. I told him that when the pain increases to astronomical levels, I get anxiety, not the other way around.
When my pain is low I don't complain.

He doesn't think that the facet joints are causing the pain.

According to him, he doesn't know where the pain is coming from yet.

I thought the proper diagnostics would be to test all suspect facets and nerves one by one until the correct source is found.

I can tell you with some certainty that my main pain is between C7-T1. The pain is a burning type causing tingling and numbness going downwards. I also get referred pain in my left trap, shoulder, arm, index/middle fingers from time to time.

Then I asked the doctor what is his plan for me. He told me to keep taking the pain medication (endep, lyrica, diclofenac, clonidine and targin) .

I questioned him: For life?
He answered: Why not?

I am not prepared to take this drugs to mask my pain for ever. I want the problem fixed.

I think that I should be looking for another specialist.

Best regards

Alfred

Jump to this post

@ab6540183 Alfred,
You need another doctor. I don't know how your insurance system works in Australia, but this sounds like what we have in the US that sounds like an HMO where you have to see doctors in their network. This is run for profit, and doctors may be getting bonuses for saving money and avoiding surgery, so they can delay care. What are your options for seeking care somewhere else?

Medicine should not be like this. Don't give up. You have to make some noise to be heard. When you get a "non- answer" like other patients have MRIs like yours and do not have pain, that is just a dismissal and they are wasting your time while your condition worsens. They know better and are treating you badly.

You can look up new surgeons at a respected multidisciplinary medical center and see if you can book an appointment. Keep learning about your spine condition so you can ask educated questions. That is the only way you can figure out if the doctors are willing to help you. They also might be considering their reputations above anything else and may not want to take a case that may not have have good results that would lower their statistics of success. You are going to have to advocate for your care, but please find a doctor who wants to help. The more complex the case is, the more difficult it is, and some may not want that risk to their reputations. You need a better surgeon. Your report and your symptoms should not be ignored. I do think your reports suggests that surgery is indicated, however, only a surgeon who examines you can tell you that.

REPLY
@jenniferhunter

@ab6540183 Alfred,
You need another doctor. I don't know how your insurance system works in Australia, but this sounds like what we have in the US that sounds like an HMO where you have to see doctors in their network. This is run for profit, and doctors may be getting bonuses for saving money and avoiding surgery, so they can delay care. What are your options for seeking care somewhere else?

Medicine should not be like this. Don't give up. You have to make some noise to be heard. When you get a "non- answer" like other patients have MRIs like yours and do not have pain, that is just a dismissal and they are wasting your time while your condition worsens. They know better and are treating you badly.

You can look up new surgeons at a respected multidisciplinary medical center and see if you can book an appointment. Keep learning about your spine condition so you can ask educated questions. That is the only way you can figure out if the doctors are willing to help you. They also might be considering their reputations above anything else and may not want to take a case that may not have have good results that would lower their statistics of success. You are going to have to advocate for your care, but please find a doctor who wants to help. The more complex the case is, the more difficult it is, and some may not want that risk to their reputations. You need a better surgeon. Your report and your symptoms should not be ignored. I do think your reports suggests that surgery is indicated, however, only a surgeon who examines you can tell you that.

Jump to this post

Hi Jennifer,

thanks for your wise words.

I have gotten another referral to see another neurosurgeon in Melbourne last Friday.
All the documentation has been uploaded and am awaiting for an appointment day that I can see him.
I will ring them up on Monday to gate the actual date.
I hope that I don't have to wait too long because I am not coping.

As I said, last Tuesday, 10 Jan 2023 the right side of the neck started to hurt badly around the C6/C7 area I believe. I do not know how this started.

Since this begun, I have been getting bilateral excruciating pain of the neck also exacerbated by my lumbar issues. The pain feels stronger than the left hand side in a different way, it feels a lot sharper. For the last few days I have been experiencing unbearable pain starting from right of neck, then going into right trapezius, shoulder, arm, forearm, wrist, hand and some fingers. My whole right arm is in continuous really bad pain despite me taking the recommended medication comprised of 2 x Endep 10mg, 1 x Lyrica 25mg, 1 x Diclofenac 50mg, 1 x Clonidine50mcg and Targin 10mg/5mg. This morning I woke up at 3AM in excruciating pain in my right arm, the medication is not helping at all.
Last Friday I told the pain management doctor about this new issue which I can't explain and was told by him to keep taking the medication, but it is currently not working.

My body is full of referred pain going everywhere. I tried meditation, but the pain is so bad that I couldn't meditate.

I have been with these neurosurgery group for 2 and half months now (initial pain started in Aug 2022), but I have made little progress except for getting pain medication and 3 cortisone diagnostic injections in C7/T1, T1/T2, T2/T3.

My anxiety has reached astronomical levels, I am not coping. I am totally depressed becuase I am always in pain. I try to sit, lie down, but no position relieves it.

I told them that this is an emergency because the pain is too much.

I am even contemplating to have the cervical spine re-scanned with another MRI to see if anything has changed in the neck.

In Melbourne if I call an ambulance, they will take you to the closest public hospital, settle you with a morphine injection, overnight stay, then they will discharge you the next day.

Yes, we have a truly appalling system here.

Alfred

REPLY
@ab6540183

Hi Jennifer,

thanks for your wise words.

I have gotten another referral to see another neurosurgeon in Melbourne last Friday.
All the documentation has been uploaded and am awaiting for an appointment day that I can see him.
I will ring them up on Monday to gate the actual date.
I hope that I don't have to wait too long because I am not coping.

As I said, last Tuesday, 10 Jan 2023 the right side of the neck started to hurt badly around the C6/C7 area I believe. I do not know how this started.

Since this begun, I have been getting bilateral excruciating pain of the neck also exacerbated by my lumbar issues. The pain feels stronger than the left hand side in a different way, it feels a lot sharper. For the last few days I have been experiencing unbearable pain starting from right of neck, then going into right trapezius, shoulder, arm, forearm, wrist, hand and some fingers. My whole right arm is in continuous really bad pain despite me taking the recommended medication comprised of 2 x Endep 10mg, 1 x Lyrica 25mg, 1 x Diclofenac 50mg, 1 x Clonidine50mcg and Targin 10mg/5mg. This morning I woke up at 3AM in excruciating pain in my right arm, the medication is not helping at all.
Last Friday I told the pain management doctor about this new issue which I can't explain and was told by him to keep taking the medication, but it is currently not working.

My body is full of referred pain going everywhere. I tried meditation, but the pain is so bad that I couldn't meditate.

I have been with these neurosurgery group for 2 and half months now (initial pain started in Aug 2022), but I have made little progress except for getting pain medication and 3 cortisone diagnostic injections in C7/T1, T1/T2, T2/T3.

My anxiety has reached astronomical levels, I am not coping. I am totally depressed becuase I am always in pain. I try to sit, lie down, but no position relieves it.

I told them that this is an emergency because the pain is too much.

I am even contemplating to have the cervical spine re-scanned with another MRI to see if anything has changed in the neck.

In Melbourne if I call an ambulance, they will take you to the closest public hospital, settle you with a morphine injection, overnight stay, then they will discharge you the next day.

Yes, we have a truly appalling system here.

Alfred

Jump to this post

Hi Alfred,

I really feel for you, having to wait while in such pain. The best advise I can give is lay on ice every 20 mins. Ice will be your best friend until you can get to the dr. NO HEAT. Very important you stop all this typing, reading, any activity that engages your neck posture. It is making you worse. Get some relaxing classical music, like Mozart and rest as much as possible. There are neck braces at med supply stores and Amazon that you might want to order, they can provide relief. The pain can receed, but it does take time. Ask them to call in a steroid dose pack in the meantime to reduce inflammation quickly. Been here , so know the drill all to well. Prayers for you. XO

REPLY
@jm1

Hi Alfred,

I really feel for you, having to wait while in such pain. The best advise I can give is lay on ice every 20 mins. Ice will be your best friend until you can get to the dr. NO HEAT. Very important you stop all this typing, reading, any activity that engages your neck posture. It is making you worse. Get some relaxing classical music, like Mozart and rest as much as possible. There are neck braces at med supply stores and Amazon that you might want to order, they can provide relief. The pain can receed, but it does take time. Ask them to call in a steroid dose pack in the meantime to reduce inflammation quickly. Been here , so know the drill all to well. Prayers for you. XO

Jump to this post

Hi Jennifer,

Thanks again.

I have already been wearing a soft neck collar and will try your music suggestion.

The current pain management specialist has been contacted by me. I asked him to revise the pain medication to handle this extra pain but he is also arranging more cortisone diagnostic injections.

I have uploaded my GP referral and all the documentation to the new neurosurgeon office but I will have to wait until mid to the end of March. 😞

This is their website
https://www.advancedneurosurgery.com.au/
Alfred

REPLY
@ab6540183

Hi Jennifer,

Thanks again.

I have already been wearing a soft neck collar and will try your music suggestion.

The current pain management specialist has been contacted by me. I asked him to revise the pain medication to handle this extra pain but he is also arranging more cortisone diagnostic injections.

I have uploaded my GP referral and all the documentation to the new neurosurgeon office but I will have to wait until mid to the end of March. 😞

This is their website
https://www.advancedneurosurgery.com.au/
Alfred

Jump to this post

@ab6540183
Hello Alfred,
Thank you, but that nice recommendation for Mozart came from @jm1 . I was about to suggest something like that too. You can reduce your pain if you use peaceful and beautiful mental imagery, soothing music and slow rhythmic breathing in time to the music. This is how music therapy works, and music therapy can also help patients with PTSD. I did this when I was anxious before my spine surgery and I found I could drop my bloop pressure by 15 points. I would listen to the same music, breathe deep and look at pictures and it really helped.

Don't tell yourself that you can't do this. Focus on small victories.

I can tell you the most painful experience for me was not spine surgery, but instead, a diagnostic spine injection that caused so much pain that I was convulsing and could not stop shaking. It was off the charts for all the pain I had ever known, and I was on my way to passing out, but I remembered my routine of peaceful imagery and I imagined an eagle soaring in the sky and flying with it. I did my deep breathing, and also played the music I loved in my head that I was using for these relaxation sessions. It worked, and I was able to regain control and cope with the pain. It probably reduced it a a bit. Stress, fear and anxiety will increase pain a lot, so this is your way to fight back against that, and not become a victim of pain. Instead, you will soar above it as best you can. I learned that I can cope and handle a difficult situation, and that it is temporary, and the pain will get better.

You are welcome to vent and question here as much as you need to do, but if it is causing more pain, do take a break. We will still be here when you need to come back.

I did look at your next surgeon. I would like to know more about the USA training he says he has, but the North American Spine Society is well respected.

Jennifer

REPLY

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.

REPLY
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