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.

@jenniferhunter

@ab6540183 Alfred, I did not take pain medications either before or after my spine surgery. I had some basic ibuprofen after a very painful epidural spine injection, and nothing took that pain away or touched it (not even a steroid dose pack), and every time I moved it flared up. The best I could do was prop myself up on pillows and lie down and relax and try not to move. There was no point in getting upset over something I could not control. Gradually over time, as the steroid injection dissipated it got better, but that took a couple months with stabbing electrical burning pain right into my dominant hand.

To manage my fear and pain, I did exactly what I recommended to you with the music and breathing therapy. The spine injection was the most pain I had ever endured in my life, far greater than my broken ankle and ankle fixation surgery or spine surgery. At the time of the spine injection, I was convulsing with pain and close to passing out when they reminded me to breathe because the first thing you do in severe pain is hold your breath. It was my breathing & music technique that I had practiced so much that saved me from passing out and I was able to stay in control of my emotions in spite of being in pain. When anger and fear come into play, it escalates pain a lot. I also knew that my emotional visceral reaction to pain was learned in my past experiences, and that it was up to me to "unlearn" that response.

The day I had spine surgery, they gave me some pain pills afterward in the hospital and it just nauseated me, and didn't take all the pain away anyway. I didn't think the pain was that bad, so I didn't take any more and I found I could manage just fine even though I had some pain. It wasn't horrible, and I knew that it was healing pain or "Good pain" and that I was on the mend.

It would be good if you could get a counselor involved with helping you.... someone you can talk to in person to help re-frame how you are thinking about all of this. I would not let anyone do any physical manipulations or exercises with you. At this point, you need to wait to see the surgeon and to follow advice until then. I'm sorry, I don't have any answers other than telling you what worked for me, and believe me, I had to come a very long way to unravel my fears of pain that had been life long, but I did, and it changed my life.

If you really want this, keep working at it. You may not notice huge changes at first because you are focusing on the pain and not the pleasant things to distract yourself. You have to address whatever belief you have about this pain and your injuries to get past this, and that is where a counselor can help. I had to do that too because my spine problem was caused by someone else in a traffic accident. If I had carried a lot of anger around about that, it would affect me too. You have to forgive to get past the anger and that is something to do because it will help you feel better.

Yes, I agree with you to avoid physiotherapy now. I do not know the source of your pain and what your outcome will be. I didn't know what my outcome would be either, and I just did the best I could to follow advice from the surgeon and physical therapist, and I believed that I would get better. There is real power in that.

Jump to this post

Hi Jennifer,

thanks again for your advice.

Two weeks ago I was managing my pain ok, then I did acupuncture and osteo thinking that this would be good for me.

After this, I started feeling a massive stab that I never experienced before under the C7 vertebra to left. I do not know what brought this on. Feels like nerve pain due to something pressing on it.

Last night I was under the effect of Targin, Amitriptyline, Pregabalin, Clonidine, Baclofen but I could feel the burning and the numbness in the neck, upper thoracic, lumbar, legs, feet, toes, traps, shoulders, scapula, arms, hands and fingers. My arms are weaker than before.
I am feeling as if my nerves are deteriorating and don't know why my doctors haven't advised doing electromyography to check the nerves.

I get referred pain in my left chest muscle, the pain increases my blood pressure. Also feeling throbbing in my right shoulder on and off.

Today while I was standing in the bathroom and could feel the left lower back very tight causing me muscle pain.

I already cancelled C6 nerve root injection last week because I can't get relief from the drugs.
It is really deep inside. If it is an impingement I suppose that it has to be removed surgically.

I did buy the Aspen collar as recommended. When I wear it, it sort of presses in the back of the neck where the sore spots are located, causing me pain from time to time.
My neck is so inflamed that even a gentle touch can cause pain.

I do have a psychologist that has been working with me, but his sessions aren't frequent enough.

Bye for now.

Alfred

REPLY

Thank you. I found a person vertices to do this so have an appt Tomorrow.

REPLY

In the last 2 weeks I did acupuncture and osteopathy to relieve the pain but made my it worse. I have been suffering from high anxiety, blood pressure, feeling faint, nerve throbbing, unable to sleep for days. Even the opioids aren't helping much. I am feeling breathless, fogged as if I am falling apart. We called the ambulance the other day but was advised to stay home because the hospitals were so packed. I am really feeling strange, I feel exhausted, nerves are burning and going numb, I am going nuts. I am not focusing on the pain but I am listening to relax music. These feeling are coming and going throughout the day.

REPLY

@jenniferhunter

Hi Jennifer,

I have not slept for 6 days due to the extreme pain despite taking strong pain medication. I feel strong pain and numbness on both sides of the neck spreading towards the thoracic spine, then in my lower back, legs and feet, arms, hands, fingers, cervicogenic pain in throat and ear. My right shoulder is killing me and feels as if something is vibrating inside, like an electric current that comes on and off. I think that the nerves are getting damaged slowly. My anxiety has shot through the roof. I tried to listen to music and breathe slowly but the pain was overwhelming. I have a zoom appointment with the pain doctor today to explain what is happening. I fear for my health and my life because I don't understand what is happening. My doctors have only provided pain management medication in the last 4 months and some cortisone injections. I made the doctors aware that I am not feeling well.
I am getting pain in the left pec muscle, my pressure was 166/105 at 4am. It maybe related to the cervical pain, I don't know,

I am loosing hope.

Alfred

REPLY
@ab6540183

@jenniferhunter

Hi Jennifer,

I have not slept for 6 days due to the extreme pain despite taking strong pain medication. I feel strong pain and numbness on both sides of the neck spreading towards the thoracic spine, then in my lower back, legs and feet, arms, hands, fingers, cervicogenic pain in throat and ear. My right shoulder is killing me and feels as if something is vibrating inside, like an electric current that comes on and off. I think that the nerves are getting damaged slowly. My anxiety has shot through the roof. I tried to listen to music and breathe slowly but the pain was overwhelming. I have a zoom appointment with the pain doctor today to explain what is happening. I fear for my health and my life because I don't understand what is happening. My doctors have only provided pain management medication in the last 4 months and some cortisone injections. I made the doctors aware that I am not feeling well.
I am getting pain in the left pec muscle, my pressure was 166/105 at 4am. It maybe related to the cervical pain, I don't know,

I am loosing hope.

Alfred

Jump to this post

@ab6540183
Alfred,

Do you have any new information from your doctors? Did you have a video conference?

Would you reach out to your psychologist to talk? Remember, you're not alone. You probably need a face to face discussion to help you cope. You are welcome here too, but a therapist in person can help so much more.

Right now you don't have information, so try not to worry about what you don't know. I know that is easier said than done. Just take it day by day and think about those kids. If you can think about gratitude for people or things you love, it helps push the fear away. That was part of my game plan too, and I made a point of thanking my surgeon before I went into spine surgery. I know you are waiting for an appointment, but you could think about the new surgeon and be grateful that you will be seeing him in a couple weeks. You could celebrate each day as a count down to that appointment. I used to look at a photo of my surgeon and say good morning everyday. That may sound silly, but anything that puts a smile on your face can help.

You might like this discussion about facing fear.

https://connect.mayoclinic.org/discussion/how-can-i-defeat-my-anxiety-about-medical-tests-and-surgery/

I also liked this post and thought you might want to see it.

https://connect.mayoclinic.org/comment/819785/

Jennifer

REPLY
@ab6540183

@jenniferhunter

Hi Jennifer,

I have not slept for 6 days due to the extreme pain despite taking strong pain medication. I feel strong pain and numbness on both sides of the neck spreading towards the thoracic spine, then in my lower back, legs and feet, arms, hands, fingers, cervicogenic pain in throat and ear. My right shoulder is killing me and feels as if something is vibrating inside, like an electric current that comes on and off. I think that the nerves are getting damaged slowly. My anxiety has shot through the roof. I tried to listen to music and breathe slowly but the pain was overwhelming. I have a zoom appointment with the pain doctor today to explain what is happening. I fear for my health and my life because I don't understand what is happening. My doctors have only provided pain management medication in the last 4 months and some cortisone injections. I made the doctors aware that I am not feeling well.
I am getting pain in the left pec muscle, my pressure was 166/105 at 4am. It maybe related to the cervical pain, I don't know,

I am loosing hope.

Alfred

Jump to this post

Hello @ab6540183. Dealing with ongoing pain is so mentally draining, on top of the physical toll it takes. I think what @jenniferhunter shared is so true in that it may be helpful to consider tending to your mental health by way of a psychologist to talk through your fears and also your reality of pain. Is there a way for you to reach out to a professional to make that connection?

I have a family member who has intense neuropathy pain and none of the typical Rxs you'd think of for pain even touch it. He has been using Epsom salt baths, topical arnica cream, massage, and the occasional CBD gummy (1/4 to 1/2 of one) to get rest. Rest happens to be really critical for him, personally, and with the amount of pain on a daily basis, that can be challenging as you well know.

Have you tried anything on top of the pain medicine and breathing (which is really a wonderful addition to any pain management protocol)?

REPLY
@amandajro

Hello @ab6540183. Dealing with ongoing pain is so mentally draining, on top of the physical toll it takes. I think what @jenniferhunter shared is so true in that it may be helpful to consider tending to your mental health by way of a psychologist to talk through your fears and also your reality of pain. Is there a way for you to reach out to a professional to make that connection?

I have a family member who has intense neuropathy pain and none of the typical Rxs you'd think of for pain even touch it. He has been using Epsom salt baths, topical arnica cream, massage, and the occasional CBD gummy (1/4 to 1/2 of one) to get rest. Rest happens to be really critical for him, personally, and with the amount of pain on a daily basis, that can be challenging as you well know.

Have you tried anything on top of the pain medicine and breathing (which is really a wonderful addition to any pain management protocol)?

Jump to this post

Thank you Amanda.

I have a phycologist that is helping me but I only get a session once a month because he is too busy.
Last night I took my regime of 1 endep 10mg , 1 pregabaline 25mg , cloninine 50mcg, diclofenac 50mg, 1 x targin 10/5 and somehow I slept.

But when I got up this morning I felt breathless which I am still feeling. Blood pressure is nearly always equal to 150/90. My hands are sweaty, I feel clammy, pain has returned. I feel it in both sides of the neck and further down.

My hip joints are excruciating, my right shoulder has deep pain and my right arm. I can hardly lift a dinner plate. Walking is difficult and muscles are tensed.

I told this to my pain management doctor yesterday on my zoom appointment, but he skipped the answers telling me to increase the pain medication,

Life is a daily struggle because it is difficult to sleep, distract yourself. The tinnitus is loud in both of my ears.
When I move I feel creaks in my neck, shoulders, hip joints etc.

I don't know what to do anymore.

The solitude is high, friends, family don 't call and close family get upset when I mention unbearable pain. Currently feeling very drowsy, fatigued and breathless on top of pain. I noticed that these symptoms increase automatically with increased pain.

Last evening I did a short walk but with difficulty due to the lumbar pain.

Currently not able to drive myself to see friend or doctors because I have to really on either family or taxis.

Next Monday the radiology place will do a CT spect and bone scan for cervical, thoracic spine.

Best regards

Alfred

REPLY
@jenniferhunter

@ab6540183
Alfred,

Do you have any new information from your doctors? Did you have a video conference?

Would you reach out to your psychologist to talk? Remember, you're not alone. You probably need a face to face discussion to help you cope. You are welcome here too, but a therapist in person can help so much more.

Right now you don't have information, so try not to worry about what you don't know. I know that is easier said than done. Just take it day by day and think about those kids. If you can think about gratitude for people or things you love, it helps push the fear away. That was part of my game plan too, and I made a point of thanking my surgeon before I went into spine surgery. I know you are waiting for an appointment, but you could think about the new surgeon and be grateful that you will be seeing him in a couple weeks. You could celebrate each day as a count down to that appointment. I used to look at a photo of my surgeon and say good morning everyday. That may sound silly, but anything that puts a smile on your face can help.

You might like this discussion about facing fear.

https://connect.mayoclinic.org/discussion/how-can-i-defeat-my-anxiety-about-medical-tests-and-surgery/

I also liked this post and thought you might want to see it.

https://connect.mayoclinic.org/comment/819785/

Jennifer

Jump to this post

Than you Jennifer.

Yesterday I had a zoom appointment with the pain management specialist where I explained all my issues which were unanswered. His only solution was to increase the meds which are currently not helping a lot after the latest osteopath neck adjustment that made me a lot worse. I don't know if he has stretched the nerves or even made the existing bulging worse. All I know that I had pain before but no as bad as to what I have now after his adjustment. I can only see the psychologist one a month because he is very booked out.
I felt the pain management sounded fedup listening to me because I always complain about increased pain. With pain it is hard to tell whether it is nerve, muscle, tendon or ligament pain.

I am waiting eagerly for the 22 of March to see what the new neurosurgeon has to say about my conditions.

I desperately need a solution because it is too hard to live like this.

REPLY
@ab6540183

@jenniferhunter

Hi Jennifer,

I have not slept for 6 days due to the extreme pain despite taking strong pain medication. I feel strong pain and numbness on both sides of the neck spreading towards the thoracic spine, then in my lower back, legs and feet, arms, hands, fingers, cervicogenic pain in throat and ear. My right shoulder is killing me and feels as if something is vibrating inside, like an electric current that comes on and off. I think that the nerves are getting damaged slowly. My anxiety has shot through the roof. I tried to listen to music and breathe slowly but the pain was overwhelming. I have a zoom appointment with the pain doctor today to explain what is happening. I fear for my health and my life because I don't understand what is happening. My doctors have only provided pain management medication in the last 4 months and some cortisone injections. I made the doctors aware that I am not feeling well.
I am getting pain in the left pec muscle, my pressure was 166/105 at 4am. It maybe related to the cervical pain, I don't know,

I am loosing hope.

Alfred

Jump to this post

Don’t lose hope Alfred, it’s all we have. I have been dealing with pain for 8 years and went through chemo for lymphoma. Love and hope got me through. I am left with residual pain where they removed a tumor next to my sacrum, spinal stenosis and severe neuropathy.
But I am thankful that it was me at 63 than one of my children and grandchildren.
Distraction and movement have been the best pain relief for me: Hot Epson salt baths. Walking through landscapes, upbeat music
And hope that one day the pain will just go away

REPLY
@wendyhobbie

Don’t lose hope Alfred, it’s all we have. I have been dealing with pain for 8 years and went through chemo for lymphoma. Love and hope got me through. I am left with residual pain where they removed a tumor next to my sacrum, spinal stenosis and severe neuropathy.
But I am thankful that it was me at 63 than one of my children and grandchildren.
Distraction and movement have been the best pain relief for me: Hot Epson salt baths. Walking through landscapes, upbeat music
And hope that one day the pain will just go away

Jump to this post

Hi Jennifer,

How are you?

It is early on Sunday morning in Melbourne and my left side has flared up enormously, really bad.

I have extreme pain, numbness, tightness shooting shooting from the left of my neck, down the groin, leg and foot.
I can't manage it with the meds because it is too strong

I feel that my neck, thoracic spine should be scanned again.

Tonight for the first time I felt as if there were cob webs on my head, face. It scared me.
Is this being caused by the nerves?

I feel pins and needles in the face, head, knee, elbow, arms that come and go.

Are my nerves slowly dyeing?

My doctor told my on Friday to increase the dose of targin from 10mg to 20mg.

It may remove the symptoms but the nerves are still being compressed.

Best regards

Alfred

REPLY
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