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.

@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

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Wow you are a strong lady!!! What an inspiration to all of us. To hear you comment that you are thankful it is you & not one of your grandchildren or children is so true. I’m 4 months post op C4-C7 and beginning to see significant improvement in multiple aspects of recovery. It’s such a revelation when I breathe fresh air, look at the blue sky while walking and enjoy laughing with friends and family. It’s no doubt this condition gives you a true appreciation for the little things in life. Thank you for sharing 🙏 a heartfelt and beautiful statement

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@ab6540183

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

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Hi Alfred,

I have been reading your posts and I’m just wondering has anyone checked you for an auto immune disease? As this nerve pain is so widespread it just seems as though they are missing something. I know how upsetting and frustrating it is to be in this much pain and not have any answers.

Leigh

REPLY

First thing that I suggest is to walk instead of biking…😜
I’ve been to Mayo in Rochester Minnesota twice and my children want me to go again after my lumbar MRI on Friday
The slipped discs are causing pain and neuropathy. Because I also have fibromyalgia and arthritis the doctors I’ve seen so far have prescribed lidocaine 5% patches,maximum dosage of Gabapentine, tons of supplements and anti inflammatory medication.
Now I’m eating a low gluten diet and am able to walk my dog!
My arthritis is doing a tune on my Sacroiliac joints and vertebrae. I’ve had lots of acupuncture, but was told by my chiropractor, no more adjustments.
Best advice from an orthopedic surgeon: JUST KEEP MOVING and listen to your body, if it hurts STOP DOING IT
I’ve done yoga for 25 years and have studied extensively
Dance, music, PT exercise and stretching all throughout my day. Let’s not give up hope

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@leigh17

Hi Alfred,

I have been reading your posts and I’m just wondering has anyone checked you for an auto immune disease? As this nerve pain is so widespread it just seems as though they are missing something. I know how upsetting and frustrating it is to be in this much pain and not have any answers.

Leigh

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Hi Leigh thanks for your reply.

I haven't been sick, I haven't been getting colds or flus.

I can definitely have it check out.

Because I was involved in 2 accidents while riding the bike I had fractures and whiplash in the past.

As of a month ago when I lie down, put my right side of the head on the pillow, I feel some parts of my neck burning and numb, then my legs near the hips are numb, plus my feet especially my toes get tight. I am worried.

This causes me stress and anxiety because I feel that I am loosing sensation.

The daily drugs for managing the pain are making me sick, nauseous and lacking focus.

The doctors have been taking their time.

Alfred

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@jenniferhunter

As of a month ago when I lie down, put my right side of the head on the pillow, I feel some parts of my neck burning and numb, then my legs near the hips are numb, plus my feet especially my toes get tight. I am worried.

This causes me stress and anxiety because I feel that I am loosing sensation.

The daily drugs for managing the pain are making me sick, nauseous and lacking focus.

Alfred

REPLY
@ab6540183

Hi Leigh thanks for your reply.

I haven't been sick, I haven't been getting colds or flus.

I can definitely have it check out.

Because I was involved in 2 accidents while riding the bike I had fractures and whiplash in the past.

As of a month ago when I lie down, put my right side of the head on the pillow, I feel some parts of my neck burning and numb, then my legs near the hips are numb, plus my feet especially my toes get tight. I am worried.

This causes me stress and anxiety because I feel that I am loosing sensation.

The daily drugs for managing the pain are making me sick, nauseous and lacking focus.

The doctors have been taking their time.

Alfred

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Hi Alfred, I can only imagine how frustrating this is. The only reason I mentioned autoimmune was because you seem to be having issues in the lower part of your body as well, forgive me if this was also caused by the accidents. Autoimmune diseases can manifest in so many different ways and you wouldn’t even know you have one, I know is sounds odd but the neurological symptoms were a bit of a red flag to me although I am not a doctor. Just trying to figure out some thing that might help you. It’s not hard for them to run an ANA blood test. I could be completely off base was just wondering if it could be a possibility.

Leigh

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@leigh17

Hi Alfred, I can only imagine how frustrating this is. The only reason I mentioned autoimmune was because you seem to be having issues in the lower part of your body as well, forgive me if this was also caused by the accidents. Autoimmune diseases can manifest in so many different ways and you wouldn’t even know you have one, I know is sounds odd but the neurological symptoms were a bit of a red flag to me although I am not a doctor. Just trying to figure out some thing that might help you. It’s not hard for them to run an ANA blood test. I could be completely off base was just wondering if it could be a possibility.

Leigh

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Hi Leigh,

I have reached a point of no return.
Last night my right side of the neck started excruciating and the pain has been increasing.

I wasn't able to sleep at all because every time I tried to lie down the pain increased even more.

There is deep pain in the neck, down thoracic spine, lumbar spine. Feel burning pain, numbness, tightness, in shoulders, arms, hands, groin, legs, feet.

I think I have to call the ambulance because I am not copying with the current pain management. There something really wrong in my cervical spine.

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@ab6540183

Hi Leigh,

I have reached a point of no return.
Last night my right side of the neck started excruciating and the pain has been increasing.

I wasn't able to sleep at all because every time I tried to lie down the pain increased even more.

There is deep pain in the neck, down thoracic spine, lumbar spine. Feel burning pain, numbness, tightness, in shoulders, arms, hands, groin, legs, feet.

I think I have to call the ambulance because I am not copying with the current pain management. There something really wrong in my cervical spine.

Jump to this post

Oh Alfred, I think that is a excellent idea. I was going to suggest going to the hospital. Please keep us updated.

Hoping for a diagnosis , stay strong.

Leigh

REPLY
@leigh17

Oh Alfred, I think that is a excellent idea. I was going to suggest going to the hospital. Please keep us updated.

Hoping for a diagnosis , stay strong.

Leigh

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Hi Leigh,

I called them but they didn't take me to the hospital because, according to them, the increased pain is not an emergency and that the public hospitals are packed.

What a lot of crock.
Australia resembles a third world country in regards to health.

I signed up for private health insurance in December 2022 but I am not eligible for treatment because there is a 12 month waiting period for existing injuries otherwise I could have gone to a private hospital.

I wish that I were in Florida,bbecause you have a lot of good neurosurgeons there.

Unfortunately I can't go there because I chose not to accept a clinical trial mrna shot.

They re-adjusted my pain management medication and increased the pregabalin to 75mg and added Tapendatol on top of the the targin.

This allowed me to sleep last night.

Also my appointment with another neurosurgeon for a second opinion has been postponed to May 17 from 22 of March due to personal issues.
This is another spanner in the works.

All I can do now is to keep praying 🙏

Best regards

Alfred

REPLY
@ab6540183

Hi Leigh,

I called them but they didn't take me to the hospital because, according to them, the increased pain is not an emergency and that the public hospitals are packed.

What a lot of crock.
Australia resembles a third world country in regards to health.

I signed up for private health insurance in December 2022 but I am not eligible for treatment because there is a 12 month waiting period for existing injuries otherwise I could have gone to a private hospital.

I wish that I were in Florida,bbecause you have a lot of good neurosurgeons there.

Unfortunately I can't go there because I chose not to accept a clinical trial mrna shot.

They re-adjusted my pain management medication and increased the pregabalin to 75mg and added Tapendatol on top of the the targin.

This allowed me to sleep last night.

Also my appointment with another neurosurgeon for a second opinion has been postponed to May 17 from 22 of March due to personal issues.
This is another spanner in the works.

All I can do now is to keep praying 🙏

Best regards

Alfred

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Hello Alfred,

I am glad to hear you slept but sorry to hear that you do not have better health care there. I hope that the adjustments in your pain meds continue to help you sleep . I am hoping that they have an cancelation and that you get into the neurosurgeon before May.

Take care 🙏 Leigh

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