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.

@vward1969

This has been so helpful to read all of your comments. I had gone to Mayo in Rochester Aug 2020 and received a ct guided steroid injection on my left side that has helped since I did it. I could not stay to have the other side done and am going back next week for the other side and major pain in my lumbar spine. I have degenerative disk disease, spinal stenosis in my neck, osteoarthritis and nerves that cause terrible pain. I will be showing this to my doctor as a discussion point in hopes to find the procedure that will work best and hopefully one that will keep this from progressing. We have no one close where I live that can help with such complex issues and the wait times and insurance refusing to pay for mri unless I do 6 months of physical therapy is absurd and criminal. It’s hard enough finding solutions to these things without having insurance not wanting to pay for necessary imaging to see exactly what has changed to be able to treat a patient.

Jump to this post

Hi @vward1969 I am feeling your pain, because I know what it feels like.
Daily 24/7 excruciating pain, numbness, referred pain etc.
I live in Melbourne Australia and the transport accident insurer called TAC in the state of Victoria will not pay any physio or osteo therapies because they feel that my injuries can't be fixed with traditional therapy. In fact my cervical/thoracic/lumbar injuries can only be fixed with surgery. But in the meantime I have to go through these cortisone injections in order to qualify for surgery.

I would like to avoid surgery by I believe that my C6/C7 and other nerves are under some sort of compression because I get a lot of referred pain, numbness and headaches that I never had before.
Anyway I wish you a Happy New Year despite there is nothing to celebrate for people like use that are always in pain.

REPLY

Hi everyone,
I am just providing a new update.

I currently have a lot of anxiety due to the constant pain.
The recommended pain management medication is not helping me at times and it is also giving me a gut ache despite being taken it with food. This morning I woke up around 3AM with a massive pain in the base of my neck shooting downwards. Now the right hand side around the base of my neck has started to sharply hurt. I feel referred pain (on and off throughout the day and night) in my traps, shoulders, arms and fingers mainly the index and middle fingers. My groin, legs and feet, some toes feel some numbness when sitting and lying down. Is this caused by nerve compression?
The pain is felt from the base of the neck further down into the spine (probably 10 cm) bilaterally. Lying down makes things worse. Standing partially mitigates the pain.

Just recently my pain management doctor has prescribed the following:
CT guided left C7/T1 T1/T2 T2/3 facet joint steroid injections

I have already scheduled the appointment for 5 Jan 2022 in Melbourne Australia, this is where I live.
My transport accident insurance (TAC) is yet to approve payment for the procedure and the taxi. The Xmas holidays are slowing everything down.

I have to go through this rigmarole of procedures before I can qualify for surgery which probably means more pain, more compression while I am waiting for a permanent fix hopefully.

Personally I think my that nerves are impinged due to all the referred pain.
I was wondering if facet joints can cause referred pain similar to cervical nerves such as C1 to C8.
Does anyone know?

Previously my pain management medication comprised of:
Diclofenac 50mg bd.
Endep 10mg nocte – side effects including morning sleepiness.
Pregabalin 25mg nocte prn.
The above hasn't been effective and now (I haven't started yet) the doctor wants me to use the following:

For the 6 weeks at night:
Increase of Endep to 25mg
Diclofenac 50mg
Clonidine 50mcg
Pregabalin 25mg
Targin 10/5mg

Is the above too much? I think that I will get totally get stoned and will feel no pain.
Are there any side effects with the reviewed and increased dosage?

My latest (21 Dec 2022) MRIs and Bone scan reports show the following:

Bone scan reported:
• Some increased disc degenerative activity at C5/6 with less-marked disc degenerative activity
at C4/5 and to a minimal degree at C6/7.
• No increased cervical facet joint activity; slight increased activity in the left T2/3 facet joint.
• Lumber spine – marked increased disc degenerative activity at L2/3 and L5/S1, slight
increased activity at right L4/5 and left L5/S1 facet joints.

MRI cervical/thoracic spine reported:
• Mild-to-moderate C4/5 and C5/6 central canal stenosis.
• Right C4/5, left C5/6 and right C6/7 foraminal stenosis.
• Thoracic upper and mid facet joint and costovertebral degenerative changes.
• Left paravertebral mass distal to the left T2/3 neural foramen (nerve sheath tumour is most
likely).

Differential diagnosis include:
• Left C7/T1 facet joint pain, given MRI report of moderate left C7/T1 facet joint arthropathy in
the setting of 2mm C7/T1 anterolisthesis.
• Left T2/3 facet joint pain, given bone scan report of increased activity in the left T2/3 facet
joint.

I am horrified reading these reports and I am praying 🙏 that the specialists can do something to permanently improve my spinal health.

Best regards and Happy New Year to everyone

@willjean19 @jenniferhunter @sequoia @vward1969

Alfred

REPLY
@ab6540183

Hi everyone,
I am just providing a new update.

I currently have a lot of anxiety due to the constant pain.
The recommended pain management medication is not helping me at times and it is also giving me a gut ache despite being taken it with food. This morning I woke up around 3AM with a massive pain in the base of my neck shooting downwards. Now the right hand side around the base of my neck has started to sharply hurt. I feel referred pain (on and off throughout the day and night) in my traps, shoulders, arms and fingers mainly the index and middle fingers. My groin, legs and feet, some toes feel some numbness when sitting and lying down. Is this caused by nerve compression?
The pain is felt from the base of the neck further down into the spine (probably 10 cm) bilaterally. Lying down makes things worse. Standing partially mitigates the pain.

Just recently my pain management doctor has prescribed the following:
CT guided left C7/T1 T1/T2 T2/3 facet joint steroid injections

I have already scheduled the appointment for 5 Jan 2022 in Melbourne Australia, this is where I live.
My transport accident insurance (TAC) is yet to approve payment for the procedure and the taxi. The Xmas holidays are slowing everything down.

I have to go through this rigmarole of procedures before I can qualify for surgery which probably means more pain, more compression while I am waiting for a permanent fix hopefully.

Personally I think my that nerves are impinged due to all the referred pain.
I was wondering if facet joints can cause referred pain similar to cervical nerves such as C1 to C8.
Does anyone know?

Previously my pain management medication comprised of:
Diclofenac 50mg bd.
Endep 10mg nocte – side effects including morning sleepiness.
Pregabalin 25mg nocte prn.
The above hasn't been effective and now (I haven't started yet) the doctor wants me to use the following:

For the 6 weeks at night:
Increase of Endep to 25mg
Diclofenac 50mg
Clonidine 50mcg
Pregabalin 25mg
Targin 10/5mg

Is the above too much? I think that I will get totally get stoned and will feel no pain.
Are there any side effects with the reviewed and increased dosage?

My latest (21 Dec 2022) MRIs and Bone scan reports show the following:

Bone scan reported:
• Some increased disc degenerative activity at C5/6 with less-marked disc degenerative activity
at C4/5 and to a minimal degree at C6/7.
• No increased cervical facet joint activity; slight increased activity in the left T2/3 facet joint.
• Lumber spine – marked increased disc degenerative activity at L2/3 and L5/S1, slight
increased activity at right L4/5 and left L5/S1 facet joints.

MRI cervical/thoracic spine reported:
• Mild-to-moderate C4/5 and C5/6 central canal stenosis.
• Right C4/5, left C5/6 and right C6/7 foraminal stenosis.
• Thoracic upper and mid facet joint and costovertebral degenerative changes.
• Left paravertebral mass distal to the left T2/3 neural foramen (nerve sheath tumour is most
likely).

Differential diagnosis include:
• Left C7/T1 facet joint pain, given MRI report of moderate left C7/T1 facet joint arthropathy in
the setting of 2mm C7/T1 anterolisthesis.
• Left T2/3 facet joint pain, given bone scan report of increased activity in the left T2/3 facet
joint.

I am horrified reading these reports and I am praying 🙏 that the specialists can do something to permanently improve my spinal health.

Best regards and Happy New Year to everyone

@willjean19 @jenniferhunter @sequoia @vward1969

Alfred

Jump to this post

Alfred, I’m praying for you and that you get some pain relieve. I do not know about any of these medications you have listed. A good source of information on medications is your pharmacist. They understand prescription meds I think better than dr. Give that a try with your questions regarding too much and especially interacting of the meds. Happy New Year Alfred. May 2023 be a good pain free year. 🙏🏼

REPLY
@vward1969

This has been so helpful to read all of your comments. I had gone to Mayo in Rochester Aug 2020 and received a ct guided steroid injection on my left side that has helped since I did it. I could not stay to have the other side done and am going back next week for the other side and major pain in my lumbar spine. I have degenerative disk disease, spinal stenosis in my neck, osteoarthritis and nerves that cause terrible pain. I will be showing this to my doctor as a discussion point in hopes to find the procedure that will work best and hopefully one that will keep this from progressing. We have no one close where I live that can help with such complex issues and the wait times and insurance refusing to pay for mri unless I do 6 months of physical therapy is absurd and criminal. It’s hard enough finding solutions to these things without having insurance not wanting to pay for necessary imaging to see exactly what has changed to be able to treat a patient.

Jump to this post

Hello, I'm sorry to hear 9f others that share similar issues that I have. Happy to hear that steroid injections help you. Unfortunately injections have not helped me. Ived tried epidural injections under a floroscope & also trigger point injections with no luck. Having CKD also complicates matters for two, 500 mg sustained release naproxen tabs combined with 50 mg Tramadol for flare-ups used to work great. But with CKD...no more Nsaids; therefore I do not have access to inflammation. Have had both MRI & CT's done, combined with x-rays. Pain has radiated to my left shoulder, running underneath left clavicle and down my back a bit underneath rhomboid muscles. It can be extremely intense burning and am experiencing very mild strength loss in my left arm and hand. Have seen 3 Ortho surgeons: one recommended 1 fusion at C3/4, the second recommended 2 disc replacements at C3/4 and c 5/6, and am awaiting 3rd surgeons thoughts & that will come after I take a nerve conduction test along my cervical nerve roots to really nail down which nerve root is the problem child. The pause for the last surgeon I have seen is that he does not like the idea of addressing both 3/4 and 5/6 without touching 4/5. And 4/5 looks good. So any advice would be appreciated.

REPLY

I've similar issues ..However I've also narrowing of the cartoid arteries up front of neck & having spoken to neurosurgeon need to see a vascular surgeon. I thought the pain radiating under collar bone & up left side of ear was related to neck issues, it wasn't. I've also pulsating tinnitus caused by the narrowing of said arteries. All discs gone in neck with osteophytes & encroachment of nerves .Anterior cord contour deformity which is responsible for the pain numbness & not been able to hold head up properly..in the meantime lumbar dics have gone with Stenosis, if it's not one thing it's another. Plus due to narrowing plays havoc with my blood pressure, turn my neck it goes through the roof then stables when facing forwards, like yourself Steroid injections offered but declined had 3 prior that hadn't worked so just get on until I can no longer control bladder/bowels then neurosurgeon will operate mmmm .

REPLY

I've similar issues ..However I've also narrowing of the cartoid arteries up front of neck & having spoken to neurosurgeon need to see a vascular surgeon. I thought the pain radiating under collar bone & up left side of ear was related to neck issues, it wasn't. I've also pulsating tinnitus caused by the narrowing of said arteries. All discs gone in neck with osteophytes & encroachment of nerves .Anterior cord contour deformity which is responsible for the pain numbness headaches that feel like my brain is been squashed & not been able to hold head up properly..in the meantime lumbar dics have gone with Stenosis, if it's not one thing it's another. Plus due to narrowing plays havoc with my blood pressure, turn my neck it goes through the roof then stables when facing forwards, like yourself Steroid injections offered but declined had 3 prior that hadn't worked so just get on until I can no longer control bladder/bowels then neurosurgeon will operate mmmm .

REPLY

Good morning Alfred - I am also praying for you to get resolve soon for your issues. You are persistent for an answer and that’s what will provide you a solution.

Hang in there and follow the directions of your Pain Management and look forward to your upcoming tests. Looking toward a New Year that is filled with hope, and solutions for you.

REPLY
@ab6540183

Hi @vward1969 I am feeling your pain, because I know what it feels like.
Daily 24/7 excruciating pain, numbness, referred pain etc.
I live in Melbourne Australia and the transport accident insurer called TAC in the state of Victoria will not pay any physio or osteo therapies because they feel that my injuries can't be fixed with traditional therapy. In fact my cervical/thoracic/lumbar injuries can only be fixed with surgery. But in the meantime I have to go through these cortisone injections in order to qualify for surgery.

I would like to avoid surgery by I believe that my C6/C7 and other nerves are under some sort of compression because I get a lot of referred pain, numbness and headaches that I never had before.
Anyway I wish you a Happy New Year despite there is nothing to celebrate for people like use that are always in pain.

Jump to this post

My Dr at Mayo said I could get the specific neck nerves clipped to eliminate the pain. The ct guided center of my neck injection worked. (while I was awake which I almost passed out and will get nerve meds next time at Mayo) I had one previously in Wichita that was not ct guided did not work at all. Eventually I may have to have surgery to support my neck spine that is curving in the wrong direction and it sounds very scary as they go through the front of my neck. I sure wished the stem cell regrowth to repair degeneration was more mainstream. To my knowledge it’s out of pocket. And with crisper ( where they fix the genes at the dna level), the future looks so promising. Probably won’t happen in my lifetime, but they are doing clinical trials now. This would cure our diseases. I am signed up through Mayo for clinical research trials so hopefully I may be one that can try this.

REPLY
@donnie0810

Hello, I'm sorry to hear 9f others that share similar issues that I have. Happy to hear that steroid injections help you. Unfortunately injections have not helped me. Ived tried epidural injections under a floroscope & also trigger point injections with no luck. Having CKD also complicates matters for two, 500 mg sustained release naproxen tabs combined with 50 mg Tramadol for flare-ups used to work great. But with CKD...no more Nsaids; therefore I do not have access to inflammation. Have had both MRI & CT's done, combined with x-rays. Pain has radiated to my left shoulder, running underneath left clavicle and down my back a bit underneath rhomboid muscles. It can be extremely intense burning and am experiencing very mild strength loss in my left arm and hand. Have seen 3 Ortho surgeons: one recommended 1 fusion at C3/4, the second recommended 2 disc replacements at C3/4 and c 5/6, and am awaiting 3rd surgeons thoughts & that will come after I take a nerve conduction test along my cervical nerve roots to really nail down which nerve root is the problem child. The pause for the last surgeon I have seen is that he does not like the idea of addressing both 3/4 and 5/6 without touching 4/5. And 4/5 looks good. So any advice would be appreciated.

Jump to this post

I as well have collagenous colitis and primary immunodeficiency (where I don’t make enough antibodies to fight off infections which I have to do plasma infusions every 3 weeks to get antibodies). Therefore I cannot do the drug treatments they offer for inflammation. I don’t want to get hooked on painkillers or take gabupentin with it’s awful side effects. I do take a couple ibuprofen’s at night and alprazolam and melatonin to be able to sleep at night so that’s helped. I know ibuprofen can effect my gut but it’s the lesser of the evils. These medications only limp us along but most don’t cure you and cause other health issues then you have to take more meds. Uggggh. I wish you the best in your journey. I will post again after my Mayo visit. I would recommend anyone with severe issues to go to Mayo or other top notch hospitals as they are way ahead of smaller hospitals and the wait times are way less. They work as a team to look at the whole picture of your health and make appointments while your there with other specialists.

REPLY

The good news is that you probably had those bulges a long time and now they're causing some pain. More good news is that physical therapy is the most successful way to treat the muscle pain and spasms. The bad news is that it can take awhile to get relief. You have to be mindful of postural stress, like keeping your head and neck in an awkward position for too long. Bulges can heal and your body can get used to living with them. There are a lot of physical therapists online that demo safe exercises you can do to start alleviating symptoms. E3 Rehab, Prehab Guys, both on YouTube are 2 examples. Happy New Year!

REPLY
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