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

@jm1 @jenniferhunter
In the last 2 days I have been feeling more neck pain, tingling in the right rather than the left side.

It probably originates from right C6 then C7 and further down.

The right shoulder and back of the right shoulder are hurting quite a bit, then I get some pain in my wrist and fingers. Not a pleasant feeling at all. I also feel some mild whooshing tension moving downwards towards my right shoulder. It looks like that the whole thing is going on both sides affecting neck, groin, legs and feet as well as shoulders, arms, hands and fingers.

When I sit my right foot gets rather numb, I get pins and needles occasionally in the right foot big toe.

I am taking my meds but are my symptoms getting slightly worse?

I haven't done any bad movements recently, I have been very careful.

Could the osteopath and acupuncture treatments that I have had in the last week have caused this?

My doctor is clueless about the cause, therefore I would like to ask people on this discussion board if they have experienced these symptoms ?

What safe, gentle exercises and stretches can I do to help with this?

Thank you.

Jump to this post

Good Morning Alfred
Until you see the surgeon, I would strongly advise no further "gentle exercises or stretching". You can not even lay flat on the ground so very puzzled how you think you are currently even capable. ONLY Walking, and keep it to 20-30mins is advised . My John's Hopkins Neurologist once told me that stretching was aggravating my condition and to really stop it while inflammed. My Mayo Neurologist said stop the PT and only do very gentle pool walking, or walk on land. Avoid the treadmill!! as it hurts me, too jarring. Sometimes even a recumbent bike for 10mins can inflame me. THEY WERE BOTH RIGHT. I have less problems when I follow their advise.
In my humble opinion you are seeking too many alternative treatments while inflamed as you are, they only make you worse and can seriously cause further damage.
YOU NEED TO EXERCISE YOUR PATIENCE. Make a daily routine of your Epsom salt baths, multiple ice treatments, gentle SHORT walks, listening Mozart music and practicing gentle deep breathing. And learning to relax through cognitive behavior control . Your competitive althletic nature and fears and anxiety need to get out of the picture, put them on the back burner as you cool your jets and focus on cooling the massive inflammation. DID YOU GET THE NECK BRACE I RECOMMENDED?????
Sorry for the tough love. Also, it's none of my business but please tell your wife for me she needs to support and nurture you more. I am disappointed what I have read, and understand she is caring for your sons too, but your situation is the priority right now. She should ask her friends and neighbors and nearby family to help with the sons. If and when you have surgery you both will have to have a better home care plan to get thru this.
Again, sorry for the blunt response but I am not well myself and having a tough time the last few days. God Bless Us and Give Us Strength in our difficult times.

REPLY
@jm1

Good Morning Alfred
Until you see the surgeon, I would strongly advise no further "gentle exercises or stretching". You can not even lay flat on the ground so very puzzled how you think you are currently even capable. ONLY Walking, and keep it to 20-30mins is advised . My John's Hopkins Neurologist once told me that stretching was aggravating my condition and to really stop it while inflammed. My Mayo Neurologist said stop the PT and only do very gentle pool walking, or walk on land. Avoid the treadmill!! as it hurts me, too jarring. Sometimes even a recumbent bike for 10mins can inflame me. THEY WERE BOTH RIGHT. I have less problems when I follow their advise.
In my humble opinion you are seeking too many alternative treatments while inflamed as you are, they only make you worse and can seriously cause further damage.
YOU NEED TO EXERCISE YOUR PATIENCE. Make a daily routine of your Epsom salt baths, multiple ice treatments, gentle SHORT walks, listening Mozart music and practicing gentle deep breathing. And learning to relax through cognitive behavior control . Your competitive althletic nature and fears and anxiety need to get out of the picture, put them on the back burner as you cool your jets and focus on cooling the massive inflammation. DID YOU GET THE NECK BRACE I RECOMMENDED?????
Sorry for the tough love. Also, it's none of my business but please tell your wife for me she needs to support and nurture you more. I am disappointed what I have read, and understand she is caring for your sons too, but your situation is the priority right now. She should ask her friends and neighbors and nearby family to help with the sons. If and when you have surgery you both will have to have a better home care plan to get thru this.
Again, sorry for the blunt response but I am not well myself and having a tough time the last few days. God Bless Us and Give Us Strength in our difficult times.

Jump to this post

Hi jm1 sorry that you are not feeling good.

I am currently in hell. I have been up all night, it is 5:13 am in Melbourne, I took all my tablets but they are not managing the pain at all. Going to the osteo the other day made me worse. I was frustrated by all the pain and thought that I could get some relief. Yesterday morning I sort of woke up but now the right hand side was hurting, burning badly and spreading downwards. I can't put the head on the pillow because it hurts, I can't lie down because it hurts. I only get some relief when I stand. I feel exhausted, sleep deprived. All my spine, back, legs are in pain. I don't know if the pain is caused by spasm due to nerve compression. I have been bombarding the doctors with phone calls and emails nearly every week. They are not being supportive. With all these issues I might not be a candidate for surgery. I think I have neuropathic pain. My groin, legs. feet are tight, my lumbar existing impingement of L2-L3/L3-L4 are causing me a lot of lumbar pain also. The pain is everywhere. Today I did go for a walk but it was painful. The ice pack is not helping much on my neck. I am frustrated, I have high blood pressure due to high anxiety, I find it hard not focus on thd pain because it is consuming me. As soon as start to do l slow breathing I can't do it properly. These are the worst moments of my life because I am get a break, relief from the pain. I can't get improvement of my spine. I am also getting tremor of my left hand when I place it on the desk. This is new symptom. God help me!

REPLY

Attention: Right Shoulder Pain and loss of feeling in outside right arm into two small fingers in right hand due to pinched nerve in C-6, C-7 area.

Had a cortisone shot six weeks ago and lasted only 2 weeks. Severe pain now. Have been going to PT regularly.
Anyone tried a neck traction device and comment on how successful or not it has been for you. Thx. TB

REPLY
@ab6540183

Hi jm1 sorry that you are not feeling good.

I am currently in hell. I have been up all night, it is 5:13 am in Melbourne, I took all my tablets but they are not managing the pain at all. Going to the osteo the other day made me worse. I was frustrated by all the pain and thought that I could get some relief. Yesterday morning I sort of woke up but now the right hand side was hurting, burning badly and spreading downwards. I can't put the head on the pillow because it hurts, I can't lie down because it hurts. I only get some relief when I stand. I feel exhausted, sleep deprived. All my spine, back, legs are in pain. I don't know if the pain is caused by spasm due to nerve compression. I have been bombarding the doctors with phone calls and emails nearly every week. They are not being supportive. With all these issues I might not be a candidate for surgery. I think I have neuropathic pain. My groin, legs. feet are tight, my lumbar existing impingement of L2-L3/L3-L4 are causing me a lot of lumbar pain also. The pain is everywhere. Today I did go for a walk but it was painful. The ice pack is not helping much on my neck. I am frustrated, I have high blood pressure due to high anxiety, I find it hard not focus on thd pain because it is consuming me. As soon as start to do l slow breathing I can't do it properly. These are the worst moments of my life because I am get a break, relief from the pain. I can't get improvement of my spine. I am also getting tremor of my left hand when I place it on the desk. This is new symptom. God help me!

Jump to this post

@ab6540183

Alfred, I am going to ask you an important question, and if you do your homework and honestly work toward finding your truthful answer to this question, it can help you get past the anxiety and the fear. The question is:

WHY are you doing this to yourself?

In other words, identify the things you are doing, your thinking patterns, and how does it relate to your anxiety and high blood pressure? What is it that you believe about your spine condition that is triggering you, and WHY DO YOU BELIEVE IT?

One path to answer this question is to think about times in your past when you felt similar anxiety, and why did you feel that way? What happened? Where you in physical danger? Did you not feel like you were getting support during a fearful event in your life?

Believe me, I have been there too, and the day I asked myself these questions was the day I began to unravel all the reasons that FEAR WAS CONTROLLING ME, and in finding those connections, I deprogrammed the fear. I used to fear pain so much that I passed out anytime I got an injection. All it took to push my FEAR button was for a surgeon to tell me that I had significant spinal cord compression and I needed surgery as soon as possible, and then with his arrogance, he didn't have time to answer my questions, yet he was asking me to sign up for his surgery. Later on, he continued sending me quality of life surveys for 2 years sniffing for business. His position as a surgeon elevated his importance and he had been in a magazine for his fashion style and elegance unrelated to his medical career.

After that, every morning when I thought about myself needing spine surgery, my blood pressure shot up and my heart raced. I had to learn to stop having panic attacks because I knew I was in trouble and needed to have my spine condition fixed which could only be done with surgery.

Consider this..... the fear response is learned and remembered by your brain. Every time your brain sees a similar threat, it goes right to the fear response that it knows. That is a survival reflex that is meant to get you out of danger as soon as possible. You were not born with this fear and anxiety. Babies don't worry about what will happen. Somewhere along the way, you learned to be fearful and accepted fear into your life without thinking about it. Here is your chance to think about it now and deprogram it, and if you do this right, it will change your life. That was my greatest lesson in facing my biggest fears.

Fear will increase pain a lot. There are people who can endure pain while using their mind so they do not feel the pain. How do they do that? If I had to guess, I would think they have severed the link between pain and fear.

I think you know how others view you when you say that your spouse and doctors are "not supportive." Here is your quote: "I have been bombarding the doctors with phone calls and emails nearly every week. They are not being supportive."

What happens when you keep repeating everything all the time to everyone over and over?

People stop listening including doctors.

If you keep telling surgeons your pain is at a specific level, you are diagnosing yourself and in effect, you are telling them how to do their job. A surgeon has spent years learning medicine and may be offended by a patient who keeps doing this and making demands. The surgeon's job is to figure out if there is a structural reason for your symptoms, and if it is something they can fix. Often, they do not promise to cure pain because pain can be for many reasons out of their control. If they think your pain is coming from something else or if it is in your head, what can they do to help you? Nothing..... except refer you to pain management.

Surgeons jobs are stressful and they are overworked. As you say, there are not enough surgeons to meet the demand in your country and the medical system is flawed, but it is what it is. This is why you need to be the best patient you can be. Be the patient that everyone wants to help.

What do you think your doctor thinks if you second guess them by looking things up on the internet and you tell them what is wrong? It's true that doctors can miss things. In my case 5 surgeons missed the complete diagnosis. When I found the medical literature that described my condition, I posed it as a question and asked the new surgeon if they thought my case could be like this case in the literature? It's an important difference in the way you communicate. Let them be "the BRAIN" and you are there to learn from them; not to tell them what you think is the cause of your problem. Describe your symptoms instead.

I believe that you can lower your pain response and your anxiety if you commit to doing that. Working with a counselor can help a lot. Decide what it is that you really want.

You said, "I am currently in hell. I have been up all night, it is 5:13 am in Melbourne, I took all my tablets but they are not managing the pain at all."

The choice is yours. Either stay in your current mode, adrift without a plan and hoping to be rescued, or take steps to help rescue yourself and change your life. You are the only one who can do that. Make an informed choice so you can answer honestly to yourself WHY you made the choice. A journey begins with a single step.

Jennifer

REPLY
@ab6540183

I will pray for you, for all of us to get better, have a way out🙏⛪. When need urgent help. Life is hell daily, there must me some light at the at the end of this dark tunnel.
Sometimes I wonder when will get out of this hole.

Jump to this post

I also suffered from neck and upper shoulder pain, I have had surgery on my shoulders and neck cervical 3-4 suffered for years till just last year when after repeated visits to my PCP for the same issues led him to actually have me get on the table and perform a physical exam, he found these areas to be very tight, he had me stop statins for a week to see if my pain went away and it worked. Doctor said that I’m allergic and it is a classic symptom of pain from using the medication. I still have to take statins but I’m on a much smaller dose

REPLY
@vlk420

I also suffered from neck and upper shoulder pain, I have had surgery on my shoulders and neck cervical 3-4 suffered for years till just last year when after repeated visits to my PCP for the same issues led him to actually have me get on the table and perform a physical exam, he found these areas to be very tight, he had me stop statins for a week to see if my pain went away and it worked. Doctor said that I’m allergic and it is a classic symptom of pain from using the medication. I still have to take statins but I’m on a much smaller dose

Jump to this post

@vlk420 Wow! Great detective work! I'm glad you shared your discovery here. Often patients and doctors alike don't think of reactions from medications as a potential source of a problem.

REPLY
@robinsitzmann

Pretty close to all of this as far pain & areas it's in , I am going through now too . Ugggg

Jump to this post

@robinsitzmann Welcome to Connect. I see you just joined and we're glad you're here. Did you want to share more about your situation and pose any questions to other members?

REPLY
@jenniferhunter

@ab6540183

Alfred, I am going to ask you an important question, and if you do your homework and honestly work toward finding your truthful answer to this question, it can help you get past the anxiety and the fear. The question is:

WHY are you doing this to yourself?

In other words, identify the things you are doing, your thinking patterns, and how does it relate to your anxiety and high blood pressure? What is it that you believe about your spine condition that is triggering you, and WHY DO YOU BELIEVE IT?

One path to answer this question is to think about times in your past when you felt similar anxiety, and why did you feel that way? What happened? Where you in physical danger? Did you not feel like you were getting support during a fearful event in your life?

Believe me, I have been there too, and the day I asked myself these questions was the day I began to unravel all the reasons that FEAR WAS CONTROLLING ME, and in finding those connections, I deprogrammed the fear. I used to fear pain so much that I passed out anytime I got an injection. All it took to push my FEAR button was for a surgeon to tell me that I had significant spinal cord compression and I needed surgery as soon as possible, and then with his arrogance, he didn't have time to answer my questions, yet he was asking me to sign up for his surgery. Later on, he continued sending me quality of life surveys for 2 years sniffing for business. His position as a surgeon elevated his importance and he had been in a magazine for his fashion style and elegance unrelated to his medical career.

After that, every morning when I thought about myself needing spine surgery, my blood pressure shot up and my heart raced. I had to learn to stop having panic attacks because I knew I was in trouble and needed to have my spine condition fixed which could only be done with surgery.

Consider this..... the fear response is learned and remembered by your brain. Every time your brain sees a similar threat, it goes right to the fear response that it knows. That is a survival reflex that is meant to get you out of danger as soon as possible. You were not born with this fear and anxiety. Babies don't worry about what will happen. Somewhere along the way, you learned to be fearful and accepted fear into your life without thinking about it. Here is your chance to think about it now and deprogram it, and if you do this right, it will change your life. That was my greatest lesson in facing my biggest fears.

Fear will increase pain a lot. There are people who can endure pain while using their mind so they do not feel the pain. How do they do that? If I had to guess, I would think they have severed the link between pain and fear.

I think you know how others view you when you say that your spouse and doctors are "not supportive." Here is your quote: "I have been bombarding the doctors with phone calls and emails nearly every week. They are not being supportive."

What happens when you keep repeating everything all the time to everyone over and over?

People stop listening including doctors.

If you keep telling surgeons your pain is at a specific level, you are diagnosing yourself and in effect, you are telling them how to do their job. A surgeon has spent years learning medicine and may be offended by a patient who keeps doing this and making demands. The surgeon's job is to figure out if there is a structural reason for your symptoms, and if it is something they can fix. Often, they do not promise to cure pain because pain can be for many reasons out of their control. If they think your pain is coming from something else or if it is in your head, what can they do to help you? Nothing..... except refer you to pain management.

Surgeons jobs are stressful and they are overworked. As you say, there are not enough surgeons to meet the demand in your country and the medical system is flawed, but it is what it is. This is why you need to be the best patient you can be. Be the patient that everyone wants to help.

What do you think your doctor thinks if you second guess them by looking things up on the internet and you tell them what is wrong? It's true that doctors can miss things. In my case 5 surgeons missed the complete diagnosis. When I found the medical literature that described my condition, I posed it as a question and asked the new surgeon if they thought my case could be like this case in the literature? It's an important difference in the way you communicate. Let them be "the BRAIN" and you are there to learn from them; not to tell them what you think is the cause of your problem. Describe your symptoms instead.

I believe that you can lower your pain response and your anxiety if you commit to doing that. Working with a counselor can help a lot. Decide what it is that you really want.

You said, "I am currently in hell. I have been up all night, it is 5:13 am in Melbourne, I took all my tablets but they are not managing the pain at all."

The choice is yours. Either stay in your current mode, adrift without a plan and hoping to be rescued, or take steps to help rescue yourself and change your life. You are the only one who can do that. Make an informed choice so you can answer honestly to yourself WHY you made the choice. A journey begins with a single step.

Jennifer

Jump to this post

Hi Jennifer,

how are you?

Thank you for your reply.

You said: WHY are you doing this to yourself?

I really do not know why I am behaving like this.

All I know is that I have been with these doctors since November 2022 and have been on pain medication since, but in the mean time, my condition has been getting worse due to daily headaches, earaches, jaw aches, feeling light headed, pain/tightness/numbness of my toes, feet, legs, calves, lower back, hips, bilateral neck pain, shoulders pain, arm pain, hands and fingers pain, stereo tinnitus.
The pain is destroying my quality of life, my doctors don't explain the seriousness of my condition, feel fine about this and my diagnosis is being delayed.

I suppose that I am not able to accept this amount of pain and feel nostalgic about the time I was fine. I want to get back to some normality and control of my life.

The problem is also phycological. The pain affects me in a negative way and causes anxiety. I have been an electronics technician and IT administrator for many years therefore I have a very analytical mind and am used to find fixes to computer problems.

The medications could also be affecting my thoughts. Recently I increased the opioids to two tables a day when I go to sleep.

I keep reading that untreated radiculopathies can turn into neuropathies which eventually could turn into paralysis, MS and fibromyalgia.

I don't have a social life anymore, no one calls me to see how I am going not even my brother.
Whenever I call someone to talk no one picks up.

I have lost my independence. Before I used to organize everything on my own not relying on anyone and now I have to depend on my doctors, on my wife to go to appointments because I am not able to drive to either pain or being under the effects of drugs,

I am currently doing TEAMS online sessions with a psychologist, but the appointments are few and far in between.

You could say that I feel lost, confused and I don't have enough information to make a proper decision. In my case I have too many nerve issues (neck, upper thoracic spine, lumbar spine) and feel that I wouldn't be a good candidate for surgery. Then there is a fear of losing flexibility with fusion and no guarantee the the pain will go. I have friends that recovered with stretches, physiotherapy, ozone therapy, hydro therapy etc.

When I have been under extreme anxiety in some occasions I have been crying, banging the walls, yelling to release all the tension that has been bottled in for a long time.

I also have fear of living life like this for a long time or even departing early from this planet.
I want to be around to be there for my 4 sons, to see my three grandchildren grow etc.

The day after my osteopathy session, I was at my computer, and my left arm started to shake on its own. I also felt some throbbing departing from my right shoulder moving downwards.
The throbbing is still happening today from time to time. I never had these issues before.
These sensations put me in fear unfortunately because I do not understand what is going on,

Best regards

Alfred

REPLY

@jenniferhunter

Hi again,

without me thinking about it my blood pressure rose to 140/94.
The increase in pressure corresponds to pain increasing in my neck but I am not thinking about it.

REPLY
@tonmarbanks

Attention: Right Shoulder Pain and loss of feeling in outside right arm into two small fingers in right hand due to pinched nerve in C-6, C-7 area.

Had a cortisone shot six weeks ago and lasted only 2 weeks. Severe pain now. Have been going to PT regularly.
Anyone tried a neck traction device and comment on how successful or not it has been for you. Thx. TB

Jump to this post

Yes traction helps

REPLY
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