Excruciating chronic left side neck pain plus lumbar issues

@jm1 @jenatsky @jenniferhunter

Today I had the appointment with the neurologist. I told him that since 2 weeks ago I have been having very strong relentless stabbing pain at the base of the neck to the left, feeling numb, pins and needles going to my left groin and left foot. There is also a sizeable lump there. I feel the pain even after pain medication. Icing hasn't helped recently.

This is his report that is worrisome for me.

DIAGNOSIS: Cervicalgia associated with intermittent sensory symptoms
I initially met this 66-year-old gentleman in the neurology clinic on 13/2/2023 and reviewed him again this afternoon via Telehealth. He was born left-handed but forced to write with his right hand in childhood.
Mr AB used to work in IT until his recent retirement and has an athletic background (used to ride push bike for many kilometres every day for many years). He lives with his wife and two adult sons. Mr AB was diagnosed with a left acoustic neuroma in 2009 due to left sided tinnitus and undergoes follow-up and serial MRIs at the hospital. The last brain MRI (Alfred) on 24/11/2022 demonstrated stable size and morphology of the left acoustic neuroma that widens IAC and herniates through the porusacusticus to have a small extra canalicular component. Normal right 7 and 8 nerve complexes were noted. Stable nonspecific scattered T2 hyperintense white matter lesions, which are slightly more than expected for age were seen and considered likely due to small vessel ischaemia. Ventricle size and the sulcal pattern were noted to be stable. Overall, the conclusion was that the left acoustic neuroma is stable.
Mr AB notices occasionally left facial numbness associated with imbalance without associated vertigo, diplopia,
dysphagia, dysarthria, focal weakness, or numbness in the limbs. These events can last up to several hours and were never associated with loss of consciousness or altered awareness. While these events could represent symptoms related to his acoustic neuroma that sometimes reach a threshold and are noticed by him, he nevertheless has a scheduled CTA from the aortic arch upwards due to take place on 4/4/2023 at the hospital.
Mr AB was involved in several motor vehicle accidents, the last of which was in 2019 when he was hit by a car while riding his bike and sustained a few broken ribs and a stable ramus pubis fracture. Since then, as per his recollection, he lost hearing altogether in the left ear and in 8/2022 started suffering from chronic neck pain. This was initially treated at the hospital where he received a C6 left nerve root steroid injection as ordered by the orthopaedic clinic and was later treated with steroid injections by his neurosurgeons, the last one (a C6 transforaminal injection) took place at a Radiology clinic on 15/3/2023. His current medications consist of Endep 20 mg nocte, pregabalin 25 mg daily, Voltaren 50 mg TDS, Targin 10/5 PRN and Clonidine 50 mcg nocte as advised by his neurosurgeons.
Cervical MRI done at a radiology place on 28/1/2023 demonstrated minor multilevel grade 1 spondylolisthesis along with spondylotic change characterised by moderate-marked multilevel degenerative disc disease. There is discophytic lipping and pseudo disc protrusion associated with spinal canal and neural foraminal narrowing at a number of levels. Thoracic spine MRI from 28/1/2023 showed multilevel degenerative disc disease along with multilevel facet joint arthrosis. Notably, Mr AB also suffers from chronic low back pain radiating to the right buttock that causes intermittent limp due to pain with no focal neurological impairment or incontinence. Lumbar spine MRI from 17/5/2022 showed diffuse spondylosis and degeneration in the lumbar spine with most conspicuous changes at L2/L3 and L5/S1. In addition, multilevel disc osteophyte complexes were seen resulting in stenosis of neural foramina and subarticular region, more on the right side at L2/L3, L3/L4 and L4/L5 levels. Impingement of right nerve root in the neural foramina at L2/3, L3/4 levels was noted, with
potential for impingement at the L4/5 level.
Today he reported to me that he underwent cervical manipulation by an osteopath on 24/2/2023 (which was followed later by his last C6 injection on 15/3 as described above). In recent weeks he has intermittent left groin and foot numbness that is relieved by standing and worsened by sitting and especially lying down. He also reports considerable worsening of his neck pain. He denies any foot drop or incontinence and has no focal limitation of power. Considering his known multilevel c-spine degenerative changes described above I am worried that his new symptoms represent symptomatic spinal stenosis and I therefore refer him to undergo urgent evaluation at the hospital's Emergency Department. I will be happy to
see him again following this evaluation.

Alfred

Alfred when dr tells you to go for urgent care at the ER! It strongly means you should be on your way there. Screw the ambulance guys, have your wife drive you and go the hospital that has the correct neurosurgeon on call there. 🙏

I hope you did go to the ER. Please keep us updated.

@jm1 @jenniferhunter

Hi bernese53,

how are you?

Thank you for your concerns.

Yesterday I did go to the Alfred Hospital in Melbourne Australia and showed them my neurologist letter at ED.

They performed a CT scan after a couple of hours waiting.

They said that nothing had changed since my last scan in my neck, but I do have these new numbness symptoms. in my neck, groin and foot.
Maybe a CT scan can't reveal damaged nerves? Perhaps they should have done an MRI instead?

I don't know.

I am still feeling the numbness when sitting and lying down.

This morning I suddenly woke up around 5AM with a massive cramp of the left side of my neck and left side of my lower back. It was so painful.

Also I had an appointment with my pain management doctor on 23/3/2023. He told me that he was going to change my pain management medication to replace Pregabalin with Gabapentin and add an antispasmodic medicine but I am yet to receive his prescription after 6 days. I emailed him twice already.

Best regards

Alfred

@jm1 @jenniferhunter @jenatsky

This is the latest letter from my pain management doctor to my GP.

It looks quite scary.

What does all this mean in simple terms?

Can surgery help with all these problems?

Is my life under threat?

Thank you

Dear GP
I consulted Alfred, a 66 year old male, for a review assessment

SYNOPSIS
Alfred presents with lower neck pain, in the context of multiple previous road accidents (bicycle vs car
in 2013, 2015, 2019). Injuries suffered following 2013 accident include left brachial plexus trauma.
Injuries suffered following 2019 accident include fractured ribs, thoracic transverse processes,
superior pubic rami, and inferior pubic rami.

Alfred’s worst pain is lower cervical midline and left-sided neck pain, worsened following August 2022
incident in which he felt his neck “twist and crack” whilst lying on the floor, and again worsened
following 28/11/2022 C6 nerve root injection at The Alfred Hospital. The latter injection appears to
have been organised after Alfred presented to the Emergency Department with neck pain and altered
arm sensation. Since early January 2023, Alfred is reporting intermittent right-sided burning neck pain
which sometimes radiates into his right upper limb and hand; central and left-sided neck pain remains
predominant. Other associated symptoms include headache, head pressure, dizziness, left ear ache
and pulsating, right ear tinnitus, intermittent hand and feet numbness, intermittent left hand pain,
and low back pain.

January 2023 MRI cervical spine reported:
• C3/4 – moderate right neural exit stenosis (contacting right C4).
• C4/5 – moderate left and mild right neural exit stenosis (contacting bilateral C5).
• C5/6 – spondylolisthesis, moderate left and mild right neural exit stenosis (contacting bilateral C6).
• C6/7 – moderate bilateral neural exit stenosis (contacting bilateral C7).
• C7/T1 – mild bilateral neural exit stenosis (contacting bilateral C8).

January 2023 MRI thoracic spine reported:
• Mulitlevel discogenic disease and multilevel facet joint arthropathy.

2022 MRI lumbar spine reported:
• Diffuse spondylosis/degeneration, most significant at L2/3 and L5/S1 levels.
• Multilevel disc-osteophyte complexes resulting in right L2/3, L3/4 and L4/5 foraminal stenoses.

December 2022 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.

On 05/01/2023, Alfred received left C7/T1 T1/T2 T2/3 facet joint injections – he described 60-80%
relief for 1 hour, with return of pain to baseline after 2 hours, then next day 60-80% relief for 24
hours. On 17/02/23, Alfred received left-sided cervicothoracic medial branch blocks (in the region of
pain, specific levels TBA) through radiology services – this provided no pain benefit and thus makes
facet joint source of pain unlikely.

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. I have reiterated the biopsychosocial model of
pain and facilitated understanding of the connection between mental health and pain experience.
He is working with psychologist

ANALGESIA
• Diclofenac 50mg nocte
• Endep 10mg nocte
• Pregabalin 75mg nocte – reports causing clamminess.
• Clonidine 50mcg nocte
• Targin 10/5mg nocte prn
• Diazepam prn (for muscle spasms).

Main side-effect reported is constipation.

PROGRESS
Alfred reports ongoing episodic severe pain, most prominently in the left-side of his lower neck. He
reports that pain is worse when lying (therefore impairing sleep) and that pressing the region of pain
causes radiating pain to shoot down his left leg.

Since last consult, Alfred has received the following imaging:
• 2023 Bone scan – increased activity in left C6/7 and T2/3 and right T5/6 facet joint.

Since last consult, Alfred has received the following injections:
• 17/02/23 Left C6 to T1 medial branch blocks – no benefit.
• 15/03/23 Left C5/6 transforaminal injection (injectate was lignocaine and dexamethasone,
under anaesthesia sedation) – 90% pain benefit for 12 hours, then return to baseline or
slightly worse than baseline pain.

Differential diagnosis include:
• Discogenic pain given CT report of disc degeneration at C4/5, C5/6, C6/7.
• Left C6/7 and/or T2/3 facet joint arthropathy, given bone scan evidence as detailed above –
unlikely given lack of convetional response to 17/02/23 left C6 to T1 medial branch blocks and
05/01/2023 left C7/T1 T1/T2 T2/3 facet joint injections.
• Left C5/6 radicular pain, most intense in left cervical paraspinal musculature, with minimal
radiation into left upper limb – unlikely given lack of response to 15/03/23 left C5/6
transforaminal injection.
• Muscle tension and sensitisation, in the setting of currently high anxiety and distress.

MANAGEMENT PLAN
1. I have explained that to date we have not found a convincing biomedical cause of pain, and
thus our dual goals at this point are to continue investigation for causes whilst simultaneously
managing his pain using pharmacological and non-pharmacological techniques.
To this end, Alfred and I have agreed on the following medication changes:
a. Cease Pregabalin.
b. Commence Gabapentin 300mg TDS.
c. Increase Endep to 25mg nocte.
d. Increase Clonidine to 50mcg bd.
e. Commence Orphenadrine to 100mg bd.
f. Change Diclofenac to PRN.
g. I have also agreed to request that TAC fund a 2nd set of facet joint cortisone
injections, specifically to left C6/7 and left T2/3.
2. I have reiterated the biopsychosocial model of pain and facilitated understanding of the
connection between mental health and pain experience – to this end I have encouraged
ongoing committed work with his psychologist.

Alfred your back is a mess. It’s unfortunate at your young age you’re carrying heavy pain load. Are you taking any calcium and vitamin K2 by the way since you had a bone scan, I just want to be sure for your benefit. You’re not receiving any steroids that I could see so it’s no wonder the injections aren’t effective. I’m no doctor but I’d say you need fusion’s and the sooner the better Before you permanently damage your back. Almost your entire cervical spine has issues at every level and C6/7 to T1/T2 the pivot point of your head is compromised and your lumbar spine at every level is also in bad shape. You need a spine surgeon if you seek relief and the more you sit at your desk on a computer the more pain you are causing yourself. Have you tried mindfulness meditation for pain relief and mental health calming? It really works and only one of many things you can do to help yourself because meds aren’t going to cut it until you get the mechanics of your back corrected. I am lucky in that my wife is a psychologist which has benefited me greatly and I see you are also seeing a therapists. You might discuss with your psychologist a visit to a psychiatrist for medication management and possibly an antidepressant or anti-anxiety meds and I wonder what the combination of meds you are receiving are doing to your psyche too? Also, discuss mindfulness meditation with your therapist. Look Dr. Brian Su on YouTube and get an idea of neck surgery that you may well need to be pain free. Sorry if I’m honest and I am sorry for your predicament.

Hi Jules,

How are you?
Thanks for your message.

I feel that I am mess, but I am at the mercy of these specialists for a decision on surgery.
They told me that they have not identified the source (which nerve or nerves) of the pain therefore they can't proceed.

I am feeling pain in the left, right of my neck, some thoracic between T1 to T6, lumbar at L1/L2, L2/L3 and perhaps more.

Recently I am feeling numbness in the groin, the feet, tightness of the legs, shoulders hurting on and off. I can still control the bladder.

Now the doctor has put me on Gabapentin 300mg . Let's see how this will manage the pain.
I have been doing breathing, listening to music but when the pain is high it is high.

In the last week I have been managing the pain somehow by saying to myself: "I don't care about you pain anyway" This has helped me relax more.

I am going for some walks, driving myself to the doctor which is 5 minutes away.

Today I went to the chemist nearby and as I left the place, I was walking with a bit of pace and all of a sudden I felt a very nasty sting in the right of C7 or T1 which was was also felt in the right side of my right calf. As I was touching that spot in the right side of the neck I was feeling it also in the right calf. Now that pain has gone.

Does it mean that I may have spinal compression? Anyway I don't know .
My doctors aren't explaining well what is really going on apart from you.

On the 6th of April I am seeing a new pain management doctor to get his opinion on the matter.

I have been taking Vitamin K2+D 3.

Best regards

Alfred

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.

Hi Jules,

I have been really disappointed with them.

My Italian friend Alfred in Italy has been a radiologist for 30 years.
Just recently I have explained to him what has happened to me over the last 8 months via Whatsapp.

He asked me the same question you asked about the EMG.

I have told my pain doctor about doing an EMG. He looked surprised that I asked him such question.
Basically he told me that he will consider it but he has done nothing about this for the last 3 weeks.

I am wearing neck support by my own choosing. The never suggested such a thing.

I have complained many times that I am getting more pain in the neck, followed by some numbness there, in my groin and feet when sitting or lying down.

The question remained unanswered and skipped to his next topic. He has totally disregarded what I asked him.

Summary of has happened so far with my conditions:
------------------------------------------------------------------------------------------
SYNOPSIS
Alfred presents with lower neck pain, in the context of multiple previous road accidents (bicycle vs car in 2013, 2015, 2019). Injuries suffered following 2013 accident include left brachial plexus trauma.
Injuries suffered following 2019 accident include fractured ribs, thoracic transverse processes, superior pubic rami, and inferior pubic rami.
Alfred’s worst pain is lower cervical midline and left-sided neck pain, worsened following August 2022 incident in which he felt his neck “twist and crack” whilst lying on the floor, and again worsened following 28/11/2022 C6 nerve root injection at The Alfred Hospital. The latter injection appears to have been organised after Alfred presented to the Emergency Department with neck pain and altered arm sensation. Since early January 2023, Alfred is reporting intermittent right-sided burning neck pain which sometimes radiates into his right upper limb and hand; central and left-sided neck pain remains predominant. Other associated symptoms include headache, head pressure, dizziness, left ear ache and pulsating, right ear tinnitus, intermittent hand and feet numbness, intermittent left hand pain,
and low back pain.
January 2023 MRI cervical spine reported:
• C3/4 – moderate right neural exit stenosis (contacting right C4).
• C4/5 – moderate left and mild right neural exit stenosis (contacting bilateral C5).
• C5/6 – spondylolisthesis, moderate left and mild right neural exit stenosis (contacting bilateral C6).
• C6/7 – moderate bilateral neural exit stenosis (contacting bilateral C7).
• C7/T1 – mild bilateral neural exit stenosis (contacting bilateral C8).

January 2023 MRI thoracic spine reported:
• Mulitlevel discogenic disease and multilevel facet joint arthropathy.

2022 MRI lumbar spine reported:
• Diffuse spondylosis/degeneration, most significant at L2/3 and L5/S1 levels.
• Multilevel disc-osteophyte complexes resulting in right L2/3, L3/4 and L4/5 foraminal
stenoses.
December 2022 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.
On 05/01/2023, Alfred received left C7/T1 T1/T2 T2/3 facet joint injections – he described 60-80% relief for 1 hour, with return of pain to baseline after 2 hours, then next day 60-80% relief for 24 hours. On 17/02/23, Alfred received left-sided cervicothoracic medial branch blocks (in the region of pain, specific levels TBA) through radiology services – this provided no pain benefit and thus makes facet joint source of pain unlikely.
Alfred previously consulted a spinal surgeon who recommended no role for operative
intervention.
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. I have reiterated the biopsychosocial model of pain and facilitated understanding of the connection between mental health and pain experience. He is working with a psychologist
ANALGESIA
• Diclofenac 50mg nocte
• Endep 10mg nocte
• Pregabalin 75mg nocte – reports causing clamminess.
• Clonidine 50mcg nocte
• Targin 10/5mg nocte prn
• Diazepam prn (for muscle spasms).
Main side-effect reported is constipation.
PROGRESS
Alfred reports ongoing episodic severe pain, most prominently in the left-side of his lower neck. He reports that pain is worse when lying (therefore impairing sleep) and that pressing the region of pain causes radiating pain to shoot down his left leg.
Since last consult, Alfred has received the following imaging:
• 2023 Bone scan – increased activity in left C6/7 and T2/3 and right T5/6 facet joint.

Since last consult, Alfred has received the following injections:
• 17/02/23 Left C6 to T1 medial branch blocks – no benefit.
------------------------------------------------------------------------------------------

MANAGEMENT PLAN
1. I have explained that to date we have not found a convincing biomedical cause of pain, and
thus our dual goals at this point are to continue investigation for causes whilst simultaneously
managing his pain using pharmacological and non-pharmacological techniques.
To this end, Alfred and I have agreed on the following medication changes:
a. Cease Pregabalin.
b. Commence Gabapentin 300mg TDS.
c. Increase Endep to 25mg nocte.
d. Increase Clonidine to 50mcg bd.
e. Commence Orphenadrine to 100mg bd.
f. Change Diclofenac to PRN.

I am totally ignorant about pharmaceuticals but the above looks like a lot and probably will give me side effects like nausea, dry mouth etc. I am particularly worried about Orphenadrine.

As far a new injections go, these are the doctor's recommendations:

Referral for CT guided left C6/7 and left T2/3 facet joint injections with particulate steroid such as cortison.

I know the scenario doesn't look good.

I definitely need surgery such as either fusion, artificial disc replacement or laminoplasty.
Obviously I have to meet certain criteria to be a candidate of any of these interventions.

I agree with you Jules that too much time has gone by and something need to be done.

As I mentioned earlier in my previous posts, I am seeing another neurosurgery group on the 6th of April.

Tomorrow I will be getting a CT Brain/Carotid angiogram with contrast but without a catheter to check my brain and vertebral arteries.

Now I am also getting some numbness going up my back of the head and on top of my scalp which is quite annoying. It come and goes.

I keep praying so that I can get out of this horrible situation. I really need a top neurosurgeon.

Thanks.

Best regards

Alfred

I have MCTD, degenerative issues in neck. I do basic neck moves while lying down, so not weight bearing. I try to keep the muscles/tendons loose, which is a constant effort due to bone pain. Muscles tend to clench in response. I like TMJ stretches. I also use ice/heat to reduce the pain. I have a rice bag I keep in the freezer to use on my neck. Lidocaine patches, magnesium sprays, CBD ointment (together with heat) help. This is all anecdotal, but hope it might give you more to try. Leaning back in recliner is a no go, for me. https://www.youtube.com/watch?v=Vrz25x3qnTY