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.

@jenatsky

One issue of concern is that you feel your providers are not explaining things to you so that you can understand them. I recommend you have a family member join you when you visit your docs and express to your providers that you feel you’re not comprehending what this all means. For every procedure you have you must sign a consent for treatment. The main purpose for these is to hopefully inform the patient what is being done and what the expectations of the procedure are. And before you agree to the procedure be absolutely certain you know what’s going on.
Has an EMG been done in an attempt to locate the nerves of concern in your neck? I presume you’ve seen the new neurosurgeon or is that still up coming? Do they have you wearing neck support? Glad you’re walking and hopefully you’re enjoying it.

Jump to this post

Hi Jules,

How are you?

As of the 6th of April I saw a new pain management doctor.

He is part of a professional team called Precision Health Brain and Spine in Melbourne Aus.

I am looking forward to a new positive start.

The pain has been nagging a bit, but in my mind I told it to go to hell and the less I paid attention to it, the better I felt.

This doesn't fix the problem, but I am managing the pain a bit better by ignoring it. Anxiety has gone down too.

Let's see what these new specialists can do for me.

Best regards

Alfred

REPLY
@ab6540183

Hi Jules,

How are you?

As of the 6th of April I saw a new pain management doctor.

He is part of a professional team called Precision Health Brain and Spine in Melbourne Aus.

I am looking forward to a new positive start.

The pain has been nagging a bit, but in my mind I told it to go to hell and the less I paid attention to it, the better I felt.

This doesn't fix the problem, but I am managing the pain a bit better by ignoring it. Anxiety has gone down too.

Let's see what these new specialists can do for me.

Best regards

Alfred

Jump to this post

Alleluia!!! Happy Easter Alfred!. So happy to hear you have made progress. God Bless and Support You Always! 🌼🌻🐇🌼🌻🐇

REPLY
@ab6540183

Hi Jules,

How are you?

As of the 6th of April I saw a new pain management doctor.

He is part of a professional team called Precision Health Brain and Spine in Melbourne Aus.

I am looking forward to a new positive start.

The pain has been nagging a bit, but in my mind I told it to go to hell and the less I paid attention to it, the better I felt.

This doesn't fix the problem, but I am managing the pain a bit better by ignoring it. Anxiety has gone down too.

Let's see what these new specialists can do for me.

Best regards

Alfred

Jump to this post

I read the MRI and basically you have bulging discs in your neck and a tumor in your spine. I had bulging discs giving me numbness in my fingers and tons of pain in my arm. I had several surgeries to cut off the bulges and that didn’t help so I finally had two cadaver bones put in my neck. The pain stopped. I now, after 15 years, have a compression in my neck that is giving me cramps on both sides that go up into the head. After an MRI this week I have been told that if I fall it could be fatal so I need yet another neck surgery.
Regarding your back tumor- I’d get that taken care of right away if I were you, And a Happy Easter to us all!

REPLY
@cls1

I read the MRI and basically you have bulging discs in your neck and a tumor in your spine. I had bulging discs giving me numbness in my fingers and tons of pain in my arm. I had several surgeries to cut off the bulges and that didn’t help so I finally had two cadaver bones put in my neck. The pain stopped. I now, after 15 years, have a compression in my neck that is giving me cramps on both sides that go up into the head. After an MRI this week I have been told that if I fall it could be fatal so I need yet another neck surgery.
Regarding your back tumor- I’d get that taken care of right away if I were you, And a Happy Easter to us all!

Jump to this post

@jm1 @jenniferhunter @jenatsky

Hi cls1,

how are you?

Happy Easter to you, your family and all the Mayo Clinic Connect users and staff by the way.

I am sad to hear that this compression has come back after all those years being pain free.

I have had this benign tumour of my thoracic spine since I was young (30 years of age) .
It never bothered me and never increased in size.
This tumour is called a thoracic schwannoma and it is benign. It is a nerve sheath tumour.

On the 1st of April 2023 I had an MRI at the hospital.
The report states the following:
Stable appearances of the left para vertebral soft tissue mass

This is the full report:
--------------------------------------------------------------------------------------
Examination: MR Spine - T with contrast
Date Performed: 1/04/2023

CLINICAL INDICATION:
Review thoracic schwannoma
TECHNIQUE: Pre and post intravenous contrast enhanced MRI of the thoracic spine.
FINDINGS: Comparison with a prior study dated 14/1 1/2020.
The left T2 level para vertebral mass measures axial dimensions of 21 x 22 mm with a craniocaudal length of 29 mm. Whilst there is internal heterogeneous signal, it is predominately T2 hyperintense, T1 hypointense and demonstrates patchy heterogeneous enhancement. There is no expansion of the subjacent neural foramen. No erosion or bone marrow oedema on the subjacent vertebral body. The left subclavian artery lies in close proximity to the lesion, being just anterior to it.
Thoracic spine scoliosis and mechanical change through the imaged cervical and thoracic spine. Non enhancing subdermal subcutaneous well encapsulated lesion in the posterior soft tissues of the mid thoracic spine measures approximately 13 mm. It is T2 hyperintense and T1 hypointense Axial imaging has not been performed. It is favoured to represent a sebaceous cyst. Please correlate clinically and with ultrasound if appropriate.
CONCLUSION:
Stable appearances of the left para vertebral soft tissue mass.
--------------------------------------------------------------------------------------

In the last 2 days I had a set back. I was somehow managing my pain bit better for the last 2 weeks but it has returned stabbing me in the left hand side of the neck.

Symptoms are sharp pain, stabbing pain, referred pain, numbness, tightness into the groin, back of my calves (slightly) and feet. The left foot hurts under and above including some toes. The right one is slightly better.

Why would a pain in the neck cause such symptoms all the way to the feet?

In my December 2022 MRI report they mention the following:
---------------------------------------------------------------------------------------------------------------
Comment:
1. Mild to moderate C4/5 and mild C5/6 central canal stenosis.
2. Right C4/5, left C5/6 and right C6/7 neural compressive foraminal stenosis.
3. Thoracic upper and mid facet joint degenerative change as well as costovertebral degenerative changes as described.
4. Left paravertebral mass distal to the left T2/3 neural foramen. A nerve sheath tumour is most likely. Postcontrast sequences are recommended to further evaluate.
---------------------------------------------------------------------------------------------------------------

Can the Mild to moderate C4/5 and mild C5/6 central canal stenosis and Right C4/5, left C5/6 and right C6/7 neural compressive foraminal stenosis be causing this?

Maybe a worsening over the last 3 months?

How can I manage this on top of medication? I.E. gentle exercises?

I have contacted my new spine specialists and made them aware of these symptoms.
Hopefully I get an answer.

I have attached my original evaluation by an orthopaedic surgeon back in Sep 2022. Looks like things got worse.

Thank you

Best regards

Alfred

Shared files

orthopaedic report 7 Sep 2022 (orthopaedic-report-7-Sep-2022.pdf)

REPLY
@jm1

Alleluia!!! Happy Easter Alfred!. So happy to hear you have made progress. God Bless and Support You Always! 🌼🌻🐇🌼🌻🐇

Jump to this post

Thank you jm1.

Happy Easter to you and your family.

I had a bit of a set back 2 days while everything was bearable for the last 2 weeks.
Read my last post.

Best regards.

Alfred

REPLY

@jenatsky @jenniferhunter

Hi,

I was doing sort of OK for 3 weeks, but Since 3 days ago my neck, groin and feet are getting very bad. The pain in the left side feels like is catching hard inside, like a knot and very tight. The drugs aren't taking the pain away, the groin and feet are extremely tight and painful. I find it extremely hard to sleep and walking is becoming difficult. It is impossible to get relief, icing is not helping.
Last Friday I saw my new pain management doctor and told him about this extreme tightness when lying down.
He checked my strength which was the same as what I had on the 6th of April (previous visit).
Then when I asked him about why there is so much tightness and pain, he replied that it is difficult to determine the cause .

As I am typing I am getting extreme pain and tightness from the back of my neck around the base, shooting to the left side (extreme stabbing). My neck, my spine feel tight, all of my fingers on the left hand are hurting badly with referred pain badly. This pain feels connected to the groin and the feet.
I am getting a lot of headaches. I can't get relief.

I need to go to emergency.

REPLY
@ab6540183

@jenatsky @jenniferhunter

Hi,

I was doing sort of OK for 3 weeks, but Since 3 days ago my neck, groin and feet are getting very bad. The pain in the left side feels like is catching hard inside, like a knot and very tight. The drugs aren't taking the pain away, the groin and feet are extremely tight and painful. I find it extremely hard to sleep and walking is becoming difficult. It is impossible to get relief, icing is not helping.
Last Friday I saw my new pain management doctor and told him about this extreme tightness when lying down.
He checked my strength which was the same as what I had on the 6th of April (previous visit).
Then when I asked him about why there is so much tightness and pain, he replied that it is difficult to determine the cause .

As I am typing I am getting extreme pain and tightness from the back of my neck around the base, shooting to the left side (extreme stabbing). My neck, my spine feel tight, all of my fingers on the left hand are hurting badly with referred pain badly. This pain feels connected to the groin and the feet.
I am getting a lot of headaches. I can't get relief.

I need to go to emergency.

Jump to this post

@ab6540183 Alfred, I'm sorry to hear about your setback. Have you tried any of your relaxation techniques that helped you before? As always, do what you think is best. You recently spoke of a new spine specialist. Will you have a new evaluation coming up?

Jennifer

REPLY
@jenniferhunter

@ab6540183 Alfred, I'm sorry to hear about your setback. Have you tried any of your relaxation techniques that helped you before? As always, do what you think is best. You recently spoke of a new spine specialist. Will you have a new evaluation coming up?

Jennifer

Jump to this post

Hi Jennifer,

how are you?

I tried those techniques, but the pain is so bad that it overrides what I am trying to do.

I saw the new doctor on the 6th of April and on the 11th of April.
On the 11th he checked my strength which was the same as the previous week.
I asked him why this is so bad but he told me that it is hard to determine at this stage.

This new issue started on Easter Sunday.

After taking the medication at dinner time when I go to sleep, the pain is at the bottom of the neck to the left but it is much more aggressive than before. I feel a very nasty stab, the area gets tighter and tighter as I lie down. Can it be a facet joint?
I am also getting bad cervicogenic headaches, feel something pulling, tightness behind the left ear lobe, pain in the left jaw, ear fullness.

The new doctor is arranging new injections but don't know how long I have to wait.
It is going to be tough.

REPLY
@jenniferhunter

@ab6540183 Alfred, I'm sorry to hear about your setback. Have you tried any of your relaxation techniques that helped you before? As always, do what you think is best. You recently spoke of a new spine specialist. Will you have a new evaluation coming up?

Jennifer

Jump to this post

I have tried with relaxation music, distracting myself, slowing of breathing but the pain is totally unmanageable.

There is something seriously wrong inside

REPLY

The dramatic increase of pain in the left of my neck since Easter Sunday has not eased at all.

It is constantly there and when I lie down to sleep, the pain gets worse.
I had to take an additional Targin on top of my nerve pain medication which is also not helping.

Pain is radiating in the middle of my left palm, fingers, shooting down to mid back and in the left chest muscle.
Not sure if should see cardiologist or if it is referred pain.

The headaches have increased, my ears are tensed.

I asked my new pain management doctor about this, but I haven't received an answer.
Currently life is very difficult due to the increase in pain and referred pain.

The only good news are that I am booked on the 28th of April for some injections but I do not know what my pain management doctor will address.

Best regards

Alfred

REPLY
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