Excruciating chronic left side neck pain plus lumbar issues

Hello Alfred -

I am sorry you are suffering in so much pain. I struggled with these issues myself for two years. I have degenerative disc disease & foraminal stenosis with nerve impingement C5/C6 & C7 bilaterally. After multiple conservative treatments including extensive physical therapy, I sought the opinion of a highly rated Neurosurgeon and had a 3 level fusion (C4-C7) ACCF 2 months ago. My symptoms were almost identical to yours. I’m also a healthy fit individual in my early/mid sixties. I had sought the opinion of 8 other medical professionals and Specialists prior to meeting with him. I was very distraught and mentally as well as physically exhausted.

The Surgeon found my discs were like dust - they were so degenerated. The bone spurs were like shards of glass against my nerves. He said it was unbelievable that I continued to be active and try and move past the pain. The surgery was successful and I’m in physical therapy now. It is a slow recovery in some ways, but the burning excruciating pain is gone. Post op pain consists of muscles and shoulder spasms adjusting to the new biomechanics of the neck. Recovery is not linear and it definitely takes time.

I wish you the best; it is a painful journey. I also had the injections and like you felt worse. I was told that due to the narrowing and compression caused by the stenosis, the cortisone had no way to distribute to the areas necessary for pain relief.

Wishing you find relief soon for a pain free life again.

Thanks for your very useful answer willjean19 and Merry Christmas to you and your family.
I wish you a full recovery and eventually go back to your favourite activities.

I felt so sorry for you reading your message because you had to endure 2 long years of excruciating pain.
For me it only started just 4 months ago and I already feel exhausted due to the relentless pain, referred pain, pins/needles. I am unable to sleep unless I smash my brain with Targin.
I definitely do not enjoy being spaced out daily,

My current specialists are telling me that I either have facet joint syndrome or compressed nerves in my cervical and lumbar spine, but they can't tell me which ones. They are also telling me that it is difficult to determine the source of pain, because they say that they have seen similar MRIs from other patients compared to mine who don't have any symptoms.

I will have to ask for other surgeons opinions in order to resolve this. I can't live like this.
My background is IT which I am really good at, but I can't work, can't earn a living, can't drive long distances, can't go to events ,can't see my grandchildren due to the horrible, relentless pain.
At times I have bad thoughts about the current significance of my life on this earth, but I have decided to stay strong and live for my family and my grandchildren.

Best regards
Alfred

Thank you Alfred for your heartfelt post. I sincerely empathize with you. I was unable to obtain proper healthcare at the time due to the shutdown from the pandemic. I had an Orthopedic Spine Specialist I had seen before, but appointments were 3-4 months out. I saw several specialists and physical therapists during that time, with appointments spaced out two to three months at a time.
I had a 42 year banking career which I spent the last 20 years as a Commercial Lender, Business Development Officer and Commercial Credit Analyst. I retired early as I could no longer take the front loading of my body due to the extensive typing and deadlines. Unfortunately I was moved to a new office that was not ergonomically appropriate for me. It took more than 6 months to have my desk and seating situation adjusted. By that point, I was like you unable to sleep. Constant pain. I sought treatment with PRP injections to the facet joints that helped me return to a sense of normalcy along with my early retirement. However, I was only 50% of what I normally felt. Was very difficult for my loved ones as well.
It was a difficult decision, but I did end up choosing surgery. It was only after I was referred to this Neurosurgeon from a close friend that had undergone two successful spine surgeries.
Don’t ever give up that there will be a solution and continue to pursue it. I thank you for your kind thoughts and wish you and yours a Merry Christmas.

Hi willjean19,

thanks for your message.

For the last 2 weeks my neck pain has been increasing daily and aggressively.

I feel a very sharp, excruciating stinging pain that gets tighter and tighter in the left C7 nerve area.
I am feeling left burning pain neck together with numbness starting from C2 all the way down the neck.

It is so painful that not even Targin taken together with Endep, Catapress and diclofenac helps me relax a bit or sleep.

From this extremely acute spot in left from roughly C4-C7, the pain descends in to my cervical ( I can also feel it from T1 to T5) spine, then down the left lumbar back, the groin, the left leg and left foot. Both legs and feet get numb when I sit and lie down. When I lie the numbness plus pain is stronger. Also get pins and needles and referred pain in my left shoulder, arm, etc.

I noticed that my left leg jerks at times.

Last night I was up all night and stood most of the time because standing eased the pain. Obviously this appears to be an mechanical type injury.

As soon as I put the right of my head on the pillow within 60 seconds I have to stand up again because it is unbearable.

I emailed my doctor about this new level of pain but He is unreachable. Don't know if I should go to emergency at the public hospital.

I tried so many gentle stretches to ease the pain, but it wont go away.

Last night I was crying from frustration.

Every second, minute, hour, day feel like an eternity.

I don' t know what to do anymore. I am running out of time and everybody is busy.

Best regards

Alfred

You need an up to date MRI.

@ab6540183 Dear Alfred,

Hello and welcome to Connect. I am a spine surgery patient and can sympathize with what you are going through. I know it is disconcerting that your specialists don't agree, but they can both be right. There likely are multiple problems and from your report, you have several levels in both cervical and lumbar with collapsing discs and some lumbar scoliosis. Your surgeon likely did the epidural injection to confirm what spine surgery might be able to fix in the cervical. The steroid will calm some inflammation which buys a little bit of space temporarily relieving some pain. It is always temporary, and since the pain came back, they should know at least at that place what caused it. I had an epidural injection that took away all my pain for only 5 days before it stared coming back.

When discs collapse, it causes more pressure on the facet joints causing wear and tear and arthritis. I had a collapsed C5/C6 that was only 50% of the height it should have been and I did not have stenosis at the nerve roots between vertebrae. With this situation, if I side bent my neck, I could hit the nerve roots with the vertebrae bones because there was less space between them. You also have some scoliosis playing into the mix and your spine has to compensate for that in other areas.

When your symptoms change with body position such as laying down or sitting increasing the pain, that can happen if you have one vertebrae slipping over another called listhesis which essentially narrows the spinal canal. If the discs are not strong enough to maintain spinal alignment, and collapsed, this tends to happen and can cause instability. The X rays with flexion and extension views should be able to catch this at least in your neck. There are full body standing spinal x rays that can also demonstrate if slipping is happening vs other positions. When the spinal cord gets some pressure, it can cause jumping muscles, leg jerks, uneven gait, problems with bladder, etc. I had those symptoms because of cord compression at C5/C6 from bone spurs and a ruptured disc pressing into the cord. If I bent my neck forward, I sent a big electric shock down my body.

It sounds like you may be having neck muscle spasms that may be shifting vertebral alignment. That was happening to me, and the spasms were turning or tilting my C1 & C2, and could affect everything down to the C4/5 level and also cause ear and jaw pain. It also causes dizziness and vertigo which also happened to me until my C1 & C2 got back into proper alignment again. C1 & C2 would twist independently without me turning my head. I also have thoracic outlet syndrome which causes one side of my neck to be too tight, and it sets me up for this to happen. My physical therapist can realign everything and prevent that from happening. When spasms rotate vertebrae, it stretches and aggravates occipital muscles between the neck and back of the head and that causes one sided headaches. These headaches also happen with Thoracic Outlet Syndrome.

"How to truly identify and treat thoracic outlet syndrome (TOS)"
Posted on February 18, 2018 by Kjetil Larsen
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
It is common for spine injury patients to also have thoracic outlet syndrome (TOS) because it can also be caused by a whiplash injury. TOS causes compression of the brachial plexus nerve bundle and blood vessels that pass between the collar bone and rib cage. My hand used to turn blue and get cold because of altered circulation. A lot of physical therapy has helped. TOS is often misdiagnosed because not a lot of doctors are familiar with it. If you can be seen at a medical facility that also treats TOS, perhaps your doctors can collaborate on understanding where you symptoms may be coming from. That is why I came to Mayo for spine expertise and because they would understand TOS.

With cervical and lumbar discs with bulges and loosing height, you have the potential for both of them to add together to cause greater symptoms. I also had "referred pain" that was called "funicular pain" and that confused a lot of doctors and so they wouldn't operate on me because they didn't understand the relationship of the symptoms and imaging. It was because I was reading medical literature that I ran across the term, and when I looked it up, I found literature with cases like mine. Your report mentions marginal osteophytes at several levels. A ruptured disc or bulging disc causes ostephytes to grow from both the inflammation of extruded "jelly-like" disc nucleus material and uneven pressure on the end plates of the vertebral body.

Here is the literature that I found.

Eur Spine J. 2011 Jul; 20(Suppl 2): 217–221.
Published online 2010 Oct 13. doi: 10.1007/s00586-010-1585-5
PMCID: PMC3111492
PMID: 20938789
"Cervical cord compression presenting with sciatica-like leg pain"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
I sent this literature to a surgeon at Mayo saying I thought my case was like this, and asked for an appointment. He took me as a patient, and I was right because the spine surgery took away all the pain that I had. I still have TOS and have to keep stretching as best I can to relieve that. You have multiple levels of damage from several accidents, whereas I had one damaged level. I found this literature after a surgeon had just refused to help me, and no doctor would help me approach him with this, so when I contacted Mayo, I presented this first along with a letter describing my symptoms and asking if this is possibly what I may have?

Here is some more literature about funicular pain:
BMC Musculoskelet Disord. 2020; 21: 302.
Published online 2020 May 14. doi: 10.1186/s12891-020-03299-x
PMCID: PMC7227285
PMID: 32410709
"Funicular pain: a case report of intermittent claudication induced by cervical cord compression"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7227285/
Because of scoliosis, you probably should see a spine deformity specialist who would have advanced training. I did look a the website you mentioned and there is a lot of information there, but also treatments that seem to make promises that may not be effective such as stem cell injections. Mayo is researching this and has had some success, but only for a very few patients for spinal cord injures. Patients always hope for a miracle cure instead of surgery. Doctors sometimes need to see failed physical therapy or non surgical treatments in order to be able to justify surgery. I drew my symptoms on body drawings and charted the progression of symptoms, what kind of pain, and I had different ones for standing vs lying down to note changes with position and dated them. You'll need to keep advocating for yourself. Don't loose hope. I spent 2 years looking for help and was dismissed by 5 surgeons before I came to Mayo.

Can you see another surgeon for a second opinion? What questions would you have for a new surgeon? What can I answer for you?

Jennifer

Hi Jennifer,
thanks for your extensive comment which provides me a lot of information.

I really feel for your condition. I can see that you are a battler and wont' give up.

The last week whenever I lie down in trying to sleep, the left side around C6/C7/T1 I believe, I get a really tight knot. Feels as if something is stabbing deep inside. The pain becomes unbearable therefore I get up to reduce the pain because for me standing helps in mitigating the pain. But then I have a sleepless night.
I have been taking the recommended pain medication which is made of Endep 10mg , Lyrica 25 mg and Diclofenac 50mg. Currently this medication is hardly helping me in dealing with the pain. The only tablet that helps is Targin 10/5. I am bit worried taking it because of the possible interactions with the other tablets.

This an excerpt of my pain management specialist to my local GP:

MENTAL HEALTH
Alfred demonstrates significant anxiety, feeling “on edge”, depression, frustration, and despair which
he mainly attributes to worsened pain since August 2022. Domestic stressors include 2 children with
special needs. He is currently requiring diazepam prn.

ANALGESIA
• Diclofenac 50mg bd.
• Endep 10mg nocte – side effects including morning sleepiness.
• Pregabalin 25mg nocte prn.
Previous medication trials include Pregablin 25mg (not effective; side effects included mild nausea
and sleepiness), and Targin (very effective for pain management, side effects included “passing out”).
During our previous consult, I initiated Norspan patch 10mcg/hr and Clonidine 50mcg tds. Alfred
trialled Norspan patch for 1 week but found it ineffective. He has trialled 2 tablets of Clonidine only.

PROGRESS
Since last review, I referred Alfred for CT SPECT and bone scan and repeat MRI cervicothoracic spine
(given severe change in neck pain since November 2022 cervical epidural injection). (It was actually 1/12/22)

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).

Alfred’s worst pain complaint is left-side lower neck pain, between midline and 4cm left of midline,
described as burning and stabbing, improved when standing, and worse when lying supine and with
most activity / physical task. Alfred describes some periods of minimal pain (only when standing up) , and other periods of excruciating pain. Given that pain is worse when supine, sleep is greatly affected.
Other complaints include hand and feet numbness, intermittent left hand pain, and low back pain.

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.

Today my pain management specialist called me after me complaining about the ineffectiveness of the medication and he proposed that I have the following in the next few days:

CT guided left C7/T1 T1/T2 T2/3 facet joint steroid injections

I am so scared of the cortisone injection now because when I took it on 1 Dec 2022 it caused more pain that I never had before the injection. Did they do it right? . The cortisone injection (Transforaminal C6 nerve root) was not proposed by my current pain management specialist, but it was recommended by the Orthopaedic Clinic of the Alfred Hospital here in Melbourne Australia. after I presented myself at the emergency department the week prior due to excruciating pain.

I also requested a booking to see another neurosurgeon in a couple of weeks to get a second opinion.
Currently I do not know if I suffer from facet joint syndrome or my C nerves are being compressed by the discs or else.

The anxiety is always high when I am in pain and I have thoughts that I might not make it. Every doctor tells me that I can't die from pain, but quality of life is 0 at the moment. I can't shift my focus off the pain. I tried to meditate but it is extremely hard when the pain at 10 out of 10, 24/7.

I am not sure if I should go ahead with the above cortisone injections because I know they may not last long and am worried I may get more pain. I would have thought that maybe medial branch nerve block injections would have been more suitable for identifying the culprits.

Best regards

Alfred

Hi Alfred, have you tried acupuncture to try and relieve the inflammation, stress and muscle tightness? I know lots of folks do not believe in acupuncture, but I had a year of pain off and on. Had MRI, X-rays, chiropractic, massage and it was the acupuncture that has finally helped. You situation maybe different, but acupuncture can relieve inflammation & stress, tightness/muscle spasms. It may be worth looking in to. It has helped me alot. Blessings to you.

I will give it a try, it can't hurt, but I must find a really good one here in Melbourne Australia

Thank you

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.