Excruciating chronic left side neck pain plus lumbar issues

@jm1 @jenniferhunter @jenatsky

In the last 3 weeks I have been sort of OK doing short walks every second day. I was managing the pain with my pain management medication.

Yesterday everything changed for the worse. I opened the oven door to get a tray out, therefore I had to bend to the right and lower my head to see inside and suddenly I felt a extremely sharp pain in the left side of the neck near the base of it.

The pain was unbearable in an instant!

It felt like a massively tight knot, as if something was winding up inside. The pain was also shooting to the left groin, left leg and foot making them painful and tight. I became breathless for some seconds and my stress levels went up automatically. This was followed my headaches, left ear and jaw pain.
Also bicep, triceps, left hand and fingers pain. I feel pain in the thumb, index, middle and ring fingers intermittently.

I tried to do very gentle neck stretches such as turning my head left and right, gentle chin tucks, massages, but they didn't help. Then I reached for the ice pack, the the hot pack alternating every 20 minutes a few times, but it didn't improve my condition

I took more medication which attenuated the pain a little bit. All of yesterday I was in pain with hardly any relief. Last night I couldn't lie down and couldn't sleep at all.

This morning is the same as yesterday where I can't get relief, sitting, lying down and standing are difficult. My balance is not 100% when walking around the house.

The pain was above anything that I experienced before.

Can anyone with explain what might be causing this incredible tightness and pain?
What could have happened to make me so bad?

The left of my trapezius muscle feels very tight.

I am too scared to go to the physio because every time they touch me I get aggravated.

Thank you guys.

Alfred

When you extend your arms it can aggravate your neck nerves because the position puts posture pressures on them hence more inflammation and pain is back. I always keep my elbows glued to my waist and avoid extension as much as possible. Same goes for bending. Never do. Unless I want repercussions of pain flareups. Always have to squat. Any twisting with extension is really asking for major trouble. When doing ok I can lay on ground and do a very gentle lumbar twist, but not when inflamed. Always brace for sneezing and make sure body is not twisted or extended when sneezing.! Hope it settles down again.

Hello Alfred. I recently had five artifical discs implanted in my neck due to disc degeneration with symptoms similar to yours. I live in Canada but they don't have surgical options for me. After extensive research I had a consult with an orthopedic surgeon in Germany. Artifical discs are done in other countries but Germany is the only one that performs more than two levels. I paid for the surgery myself and it was a tough financial decision as I am not wealthy. This might be an option for you although made more difficult by the differing diagnosis. You can obtain a free consult by sending your images and completing a very exhaustive medical history. If there is a surgical option for you, you can request a quote and then you have all the information you need to make a decision. I know what it's like to live with chronic pain and it's no life at all. It won't cost you anything to take this step. I am happy to act as your resource.

@jenniferhunter @jm1 @jenatsky

Hi sandpiper49,

How are you?

Thank you for your input and advice.

For me it is very difficult to go overseas due to the lack of money.
The current transport accident insurance in Australia won't pay for surgery if done overseas.

I am preparing a Gofundme fund raiser at the moment. I am gathering a lot of information, media and trying to market my campaign properly to get the required funds for surgery.

Here in Melbourne Australia my new doctors aren't interested in a surgical option for me.

My pain management doctor has put me on Nortriptyline and Neurontin to manage the pain.
As of last week starting on the 5th of June, the left side of my neck has been hurting me a lot more when lying down. Last Thursday I woke up with a massive neck spasm that locked my neck in one position. I couldn't turn my head to the left and every time I lied down I had to hold my head with my right hand to prevent the pain from getting worse.
I used a heat pack a few times that helped unlock the muscles.

Now it has been 3 days that I have extreme pain and burning inside both sides of the neck.
Also feel the same burning pain, tightness in my lower back, legs, feet and toes.

My feet are burning and feeling strong pins and needle, stabbing under my feet, in my feet and in my toes. I am not diabetic because I checked this out with some tests several weeks ago.

The burning gets worse when lying down and sitting. Lying down is the worst position but I need to lie down to sleep at night.

Also I feel mini stabbings on the skin of my legs, groin, face, skull.

The back of my skull and the top rear of my neck are burning a lot.

I don't know what is going on and feel concerned about it.

Is this nerve damage? I don't know. My neck nerves have been compressed for the last 10 months because my treating doctors, previous and current, aren't interested in a surgical option.
In the meantime I am getting worse.

I try to walk a lit bit daily to keep my muscles in shape.

The whole experience, since this started in August 2022, has been very frustrating.

Best Regards

Alfred

If you are over sixty most orthos and neurosurgeons will tell you a lot if not all of what you are having is normal aging in the spine. Unless there is spinal signal change in your MRI they won’t even entertain the idea that your symptoms are spine related. You’ll be told you have a systemic disease problem which requires many tests to be run. If tests don’t fall into their check off boxes then you’ll be told your body misperceives pain. Make sure you find a doctor who knows that cervical spine disease severity does not usually correlate with imaging. They don’t seem to be aware of studies done on that here in the USA

For the last several months I have been telling my previous and current doctors that I was getting worse and based on a lot advice in the Mayo Clinic Connect, I should have been getting some sort of surgery rather earlier than later.

I asked my doctors that I wanted new MRIs done to check my condition, because my symptoms were increasing by the month. Nothing was being done such as non surgical therapies which were never provided and medication was the only treatment. Despite self care I feel a lot of pain now and I think I understand why.

This is my latest cervical, thoracic spine report which doesn't look good.

Name of Test: MRI Thoracic Spine
Cervical Spine - trauma (1 or 2 contig
Requested: 27/05/2023 Collected:14:30

- trauma (1 or 2 contig regions), MRI regions)
27/05/2023 Reported: 01/06/2023

MRI - WHOLE SPINE
Clinical Indication:
Chronic pain.
Technique :

T1 and T2 fat saturated sequences of the cervical and thoracic spines.
Findings : There are seven cervical type vertebral bodies present.
Mild straightening.

There is no suspicious marrow lesion seen. There is no evidence of marrow
oedema .
There is no abnormality in the posterior fossa.
The cord signal and volume are normal with no intradural lesion.

C1/2:
No impingement.
C2/3:
No impingement.
C3/4:
Uncovertebral discophytic ridging and facet hypertrophy are seen. There is
foraminal narrowing on both sides with impingement of both C4 nerve roots.

C4/5:
Uncovertebral discophytic ridging and facet hypertrophy are seen with
foraminal narrowing on both sides impinging both C5 nerve roots and further
cord contact.

C5/6: Uncovertebral discophytic ridging and facet hypertrophy are seen with
bilateral foraminal narrowing impinging both C6 nerve roots.

C6/7: Uncovertebral discophytic ridging and facet hypertrophy are seen with
bilateral foraminal narrowing impinging both C7 nerve roots.

C7/T1: Annular bulging and endplate osteophytes with facet hypertrophy. Foraminal
narrowing worse on the right impinging the right C8 nerve root.
There is no significant soft tissue abnormality in the neck.

In the thoracic spine, there is multilevel disc desiccation and height loss.
There is no large disc herniation identified.
Endplate osteophyte changes are seen with further facet osteophyte and
degenerative changes.
There is foraminal narrowing seen which is most conspicuous at T2/3 on the
left predominantly due to facet hypertrophy with likely mild impingement of
the exiting left T2 nerve root.
There is no other convincing evidence of thoracic nerve impingement.
There is multilevel minor facet effusion and synovitis seen 'which is
relatively uniform but probably most severe at T7/8 on the left, T8/9, T9/10
and T10/11 bilaterally.
There is a simple lipoma in the lower right paravertebral region around the
Tll/12 level. This is of no concern.
There is a more heterogeneous mass seen left paravertebral around the T2
level. This does not extend into the foramen. It appears to be well
circumscribed. It measures up to 24 x 20mm.
Internally, it is T2 hyperintense with STIR hyperintensity and T1
hypointensity.
Its nature is uncertain. It could be a nerve sheath tumour.
Lymphoma or something malignant would be unlikely though not completely
excluded.

Conclusion: Degenerative changes are seen with cervical nerve root impingement.
Thoracic facet synovitis as described.
Simple lipoma right lower paravertebral region.
In the left paravertebral region in the upper thoracic spine, there is a
more solid-looking mass seen. This could potentially be a nerve sheath
tumour. The lesion is visible on the prior scan and appears to be roughly
stable since that time.

When you extend your arms it can aggravate your neck nerves because the position puts posture pressures on them hence more inflammation and pain is back. I always keep my elbows glued to my waist and avoid extension as much as possible. Same goes for bending. Never do. Unless I want repercussions of pain flareups. Always have to squat. Any twisting with extension is really asking for major trouble. When doing ok I can lay on ground and do a very gentle lumbar twist, but not when inflamed. Always brace for sneezing and make sure body is not twisted or extended when sneezing.! Hope it settles down again.

Hi PieceofHeaven,

Thanks for your contribution on this matter.

You are right, my doctors are always asking me to have new appointments with them where there is no improvement of my condition. No therapies have been provided so far.

This is a cash cow for them, making them richer and richer while I, the patient, am going through a lot of pain daily.

I paid for physiotherapists and osteopaths professionals which have actually made me worse and could have caused damage after really rough manipulations.
I decided not to get any massages and manipulations in the future for these reasons.

I definitely do not misperceive the pain which is real!

In the last week and a half I am also feeling peripheral neuropathy due to my lumbar issues. When I sit or lie down I feel a tight groin, burning calves, tight feet and painful pins and needles in my toes. This is alleviated by standing up and walking a bit.

With walking I have to be careful not to walk too much, because my lower back gets inflamed and more painful.

I am also feeling various intermittent symptoms like pain in the arms, hands and fingers. My neck gets very tight at times.
I feel as if the pain is going from my neck to my feet.

The MRI confirms that several nerves are impinged and especially the C5 nerve roots with further cord contact.
Does this mean that the disc bulge has started to press on my spinal cord?
Will this lead to myelopathy if left untreated for too long?
I noticed that cord protective layer is very thin in this area which could slow down the flow of CSF.

For over a year my nose has been leaking clear fluid from time to time. Is this a CSF leak?
How to I get tested for this if anyone knows?

This is my MRI lumbar spine report from last year in May:

-------------------------------------------------------------------------------------------------
Diffuse spondylosis and degeneration throughout the lumbar spine with
multilevel disc osteophyte complexes. Disc space between L2/3 and
L5/S1 reduced. Endplate irregularity and degeneration at L2/3 and
L5/S1 levels present. Modic 1 changes in the vertebral endplates at
L2/3 level. The spinal canal, subarticular region and neural foramina
demonstrate stenosis at L2/3, L3/4 and L4/5 levels. The stenosis is
more tight on right side. There is potential impingement of right nerve
root at L2/3, L3/4 and L4/5 levels present. Height of vertebral bodies
maintained. No spondylolysis seen.
Conus medullaris lies at T12/L1 level.
IMPRESSION:
Diffuse spondylosis and degeneration in the lumbar spine with most
conspicuous changes at L2/3 and L5/S1 levels. Multilevel disc
osteophyte complexes resulting in stenosis of neural foramina and
subarticular region, more on right side at L2/3, L3/4 and L4/5 levels.
Impingement of right nerve root in the neural foramina at L2/3, L3/4
levels and potential for impingement at L4/5 level.
-------------------------------------------------------------------------------------------------

Best regards

Alfred