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.

@jm1

I am so very very sorry you cancelled your transforaminal injection for C6. The transforaminal is a much more effective injection for me,
( and more difficult, your current pain mgmt dr may not be skilled enough to do it, hence he declined it, that happened to me, he just kept doing worthless intralaminar epidurals that gave me zero relief) I really hoped it would bring you releif. My Dr gives me 1 Zanax to take 45 mins b4 the procedure so I can relax. Someone drives me. Glad the acupuncture helped you and didnt cause a bad reaction. Hope you see the new surgeon soon, I know you fear a surgery, but perhaps he can also change your meds to something that works better for you, since your pain dr isnt listening to you. I know you don't like the meds and many times it sounds like you skip them, and 2 days later you are back in very bad pain. I must stress consistently taking them is very important, they build stronger effectiveness over time. And like I stressed before please Stop bending forward, it only adds unnecessary stress to the problem.
Said a rosary for you yesterday. It's always darkest before the dawn.🙏

Jump to this post

Currently is 4:37 am in Melbourne Australia and I can't sleep despite the meds. I feel something trying to rip out the left side of my neck. It is extremely painful and accompanied by sharp needles and going down the first few centimetres of left thoracic where I had nerve blocks last week. Feels that is coming from the bottom of the neck. Yesterday morning I woke up OK but during the day got worse. I also feeling my left groin tight and painful, shooting in the leftleg then the foot. Not sure what is going on.

REPLY
@jm1

I am so very very sorry you cancelled your transforaminal injection for C6. The transforaminal is a much more effective injection for me,
( and more difficult, your current pain mgmt dr may not be skilled enough to do it, hence he declined it, that happened to me, he just kept doing worthless intralaminar epidurals that gave me zero relief) I really hoped it would bring you releif. My Dr gives me 1 Zanax to take 45 mins b4 the procedure so I can relax. Someone drives me. Glad the acupuncture helped you and didnt cause a bad reaction. Hope you see the new surgeon soon, I know you fear a surgery, but perhaps he can also change your meds to something that works better for you, since your pain dr isnt listening to you. I know you don't like the meds and many times it sounds like you skip them, and 2 days later you are back in very bad pain. I must stress consistently taking them is very important, they build stronger effectiveness over time. And like I stressed before please Stop bending forward, it only adds unnecessary stress to the problem.
Said a rosary for you yesterday. It's always darkest before the dawn.🙏

Jump to this post

Hi jm1,

My pain management doctor has never done a single injection on me.
All the injections were off loaded to a third party radiology place called "Olympic Park Imaging" in Melbourne Australia, https://iop.net.au.

I couldn't attend these appointments because I had so much pain that I couldn't even sit in a taxy to get there and back.

Last night I took Pregabalin and Diclofenac, but they didn't help at all.
If I take all the other meds, I feel confused, nausea and unbalanced.
There is got to be a combination which is effective without too many side effects.

Currently the left of my neck is inflamed, slightly numb, same with part of my upper thoracic, left groin, leg and foot.

The tissue near the left of my cervical and upper part of thoracic spine feels harder than the tissue on the right hand side.

If I slide my left index finger gently from half way of the left of my neck and move downward I feel referred pain, sensations in my left lower back and further. What does it mean? I don't know.

Now I can't get any relief at all whether standing, sitting or lying down. I get go for the opioids but then I can't attend any doctors appointments today because I have anyone else to take me there. My wife has her own back issues, no way as serious, but has appointments herself to get some relief from her back pain.

At 10:30AM today my Pain Management Doctor will call me for a phone appointment. I will convey all my issues to him. I am dissatisfied with the doctor's slow progress. In the mean time I am getting worse. Perhaps you guys have better doctors in the USA than Australia.

"Thank you for praying for me and I really like your statement: It's always darkest before the dawn.🙏"

I hope that will come true. At the moment I mentally stressed out, I have anxiety and having feeling of doom judging by the pain and numbness, I don't want to get paralysed.

Bye for now

Alfred

REPLY

I would beg the Dr to switch to 600mg gabapentin 3x day , and stop the pregabalin. And switch to prednisone 4mg dose pack and stop diclofenac. Up the amitryptyline to 25mg. Take the Amitryptline at nite. Tradeoff is confused ,nausea ( try ginger beer or tea) and unbalanced, I will take that ,instead of the pain. All meds that are going to help you at this point have side effects, it just how it is. You need to sleep, sleep heals.
Nerve pain is the worse like I said, it travels or refers, especially with multiple nerves involved and the it can go down you legs etc from your neck. There is tons of info online about this and Jennifer also mentioned how she had refer pain like that. Good Luck with this Dr or get another . 🙏

REPLY

Pretty close to all of this as far pain & areas it's in , I am going through now too . Ugggg

REPLY
@jm1

I would beg the Dr to switch to 600mg gabapentin 3x day , and stop the pregabalin. And switch to prednisone 4mg dose pack and stop diclofenac. Up the amitryptyline to 25mg. Take the Amitryptline at nite. Tradeoff is confused ,nausea ( try ginger beer or tea) and unbalanced, I will take that ,instead of the pain. All meds that are going to help you at this point have side effects, it just how it is. You need to sleep, sleep heals.
Nerve pain is the worse like I said, it travels or refers, especially with multiple nerves involved and the it can go down you legs etc from your neck. There is tons of info online about this and Jennifer also mentioned how she had refer pain like that. Good Luck with this Dr or get another . 🙏

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Hi jm1,

how are you? Thank you for the advice.

Last night my pain has reached the worse of the worst levels since all this started back in Aug 2022.

Despite taking all my medication I couldn't manage the pain which was extremely disabling.

There were tonnes of deep, extreme pain/numbness/tightness/pins and needles in the left of my neck, lower back, groin, leg, foot as well as shoulders, arms, hands and fingers.

Earlier yesterday afternoon I have visited an osteopath for some manipulation to get rid of muscle knots in my neck/upper thoracic. I though that I felt better, but last night my pain had reached new peaks of pain that I had not experienced before.

There is something inside that is pressing very hard against me nerves.

I also had a phone appointment with my pain management doctor yesterday morning. He reiterated that I had to keep taking the medication but told him that it wasn't working anymore.

In the end my wife had to call the ambulance later in the night. The ambulance officers checked my blood pressure which was over 180/100 for a while. Then it was recommended that I would not go to hospital because I would be waiting for hours with no resolutions. This is how bad the Australian hospital system is currently, under staffed and resourced.

The ambulance officers told me that the current medication would not help my pain and needed something stronger. Luckily I had Tapentadol 50m and Baclofen 10mg.

I have let my current doctors know.

Best regards

Alfred

REPLY
@ab6540183

Hi jm1,

how are you? Thank you for the advice.

Last night my pain has reached the worse of the worst levels since all this started back in Aug 2022.

Despite taking all my medication I couldn't manage the pain which was extremely disabling.

There were tonnes of deep, extreme pain/numbness/tightness/pins and needles in the left of my neck, lower back, groin, leg, foot as well as shoulders, arms, hands and fingers.

Earlier yesterday afternoon I have visited an osteopath for some manipulation to get rid of muscle knots in my neck/upper thoracic. I though that I felt better, but last night my pain had reached new peaks of pain that I had not experienced before.

There is something inside that is pressing very hard against me nerves.

I also had a phone appointment with my pain management doctor yesterday morning. He reiterated that I had to keep taking the medication but told him that it wasn't working anymore.

In the end my wife had to call the ambulance later in the night. The ambulance officers checked my blood pressure which was over 180/100 for a while. Then it was recommended that I would not go to hospital because I would be waiting for hours with no resolutions. This is how bad the Australian hospital system is currently, under staffed and resourced.

The ambulance officers told me that the current medication would not help my pain and needed something stronger. Luckily I had Tapentadol 50m and Baclofen 10mg.

I have let my current doctors know.

Best regards

Alfred

Jump to this post

Alfred, so sad to read your latest. Did you mean the ambulance officers gave you those meds???? Seems a bit is lost in translation of "luckily I had" , dont understand how you had such a strong drug as Tapentadol, in your possession.???? The combination with amiltryptiline and other drugs you have can be very very dangerous.
And sorry but I already told you no more manipulation, osteos, chiros, physios ,acupunture , all will only aggravate you more at this point, as so sadly, you found out last nite.
I am glad your wife is there to help you. Hoping you see the surgeon very soon. 🙏

REPLY
@ab6540183

@jm1 @vlk420

Hi jm1 and vlk420,

Thanks for all the help and the heart breaking stories about your health. I really feel for you guys, because I am going through physical and mental health issues myself.

Just a little bit over 7 months ago I hardly had any issues, I was capable of doing things, do my sports etc.

How can 7 months change your life, from hero to zero? 😢

I feel very depressed daily, the pain is not abating, the brain is under attack 24/7, your thoughts are centred around the pain because you can't shake it off. Nearly constant headaches and bilateral tinnitus.

I haven't been driving the car for 2 months due to the fact that is painful to seat. Attending my appointments by taxi is a challenge. Some of my appointments are located near the Melbourne AUS central district, 30km each way. I can't find a sitting position that is suitable, worsened by taxi drivers that go hard on the brakes, take off too quickly or go over speed humps too fast.

Yesterday I had to cancel my CT/Bone scan appointment because I was too sore to lie down in those scan machines. I also cancelled the C6 nerve root injection planned for next Friday. I won't be attending my wife's birthday (70) party on Friday at the local pub with her brothers and sisters unfortunately, because I just have too much pain when I sit down. She is not happy about this, but I find it hard to pretend that I am happy while I am in this extremely negative state of mind.

Sorry jm1 yesterday I did go to see an acupuncturist before I read your message afterwards.

I was there for 2 hours. The acupuncturist told me that my body is dry inside and I need to hydrate it more.
I told her that I have a massive burning pain in the left side of my neck. After she put the needles in my neck and back gently, she got me to walk around the office for 10 minutes. I did buy some Chinese herbs that would help me stay hydrated once mixed with water. When I got home, I noticed that my left neck pain had gone down quite a bit, but now the pain had shifted to the right hand side, weird. I am hoping that it will improve.

If I touch gently around C6, C7 on both sides I can feel pain in the neck connecting with pain in my lumbar spine, strange.

I have 2mm retrolisthesis of C4, C5 and 1.5mm spondylolisthesis of C6. I am wondering whether the vertebrae with the 2mm retrolisthesis are pushing against my spinal cord when I slightly bend over causing all those other pains. I asked my doctors but received no answers yet. The doctors' attitude is frustrating me, because I am the one in pain and should be getting answers. Their are wasting my time while I am getting worse.
All I received is meds and more meds, but no real solutions while they are getting paid. I have read that a lot of people around the world with this issues get worse because of mis-diagnosis and lengthy delays in assessments.

I have noticed that I have a hard painful lump on the right between C4/C5 roughly. What is it?
Better check it out shortly.

I do have fear of surgery because I may need a 3 level fusion (maybe C4-C5-C6 I don't) which may restrict my movements and prevent me from driving a car.

My Italian friend from Italy advised me that he got over his issues with physio, ozone therapy and exercises for 12 months. Obviously his condition wasn't as bad as mine.

Recently I struggle to get up from bed, it takes my a couple of minutes to slowly get up, then wash my face and make cappuccino for me and my wife in the morning. I also feel pain in my hip joints.

My social life does not exist anymore. People that called themselves "my friends" never call or visit me to find out how I am going. I only receive calls from some so called "friends" when they have a computer/network problem because I have had 30 years experience in Information Technology. I am not earning any money at the moment and am relying on government's assistance to get by. In May I will start getting my old age pension which won't be a lot of money. To make things worse we have 2 adult sons on mental disability that need to be cared for. With the current cost of living rising weekly it is going to be difficult to manage bills, etc.

I haven't been getting enough exercise, because I fear that the pain may get worse. Anyway yesterday evening I forced myself despite the pain to go for a short slow walk, I nearly covered 2kms. It wasn't too bad.

Best regards to all.

Alfred

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@ab6540183

Alfred, Have you discussed your feelings and fears with your wife? Does she drive? If she does, why isn't she helping and taking you to your appointments? Is she busy taking care of your sons or working, and can't leave them alone to help take you to an appointment? She can't help you if she isn't fully aware of what you are experiencing. Please talk to her and figure out a plan, and you'll feel better about a lot of this. Do you have other relatives who can help get you to appointments? In order to get help, you will need to get to appointments and figure out how you can commit to that to be a good patient. How long will it be until you see the surgeon?

If you do have surgery, there will be follow up appointments and probably some rehab too. Surgeons can back out of helping for any number of reasons, so if you want their help, please do your best. I heard a surgeon at a spine conference telling other surgeons he doesn't advise taking cases of patients with mental or emotional issues because no matter how well the surgery is done, they will not be satisfied and may blame the surgeon. I am not making any judgements here, but the surgeon will when he sees you, and you want him to see you as a good patient who wants to fix the problem and heal, and return to their normal life.

Surgery is always a compromise, and hopefully you'll improve your spine function. I am able to drive with my spinal fusion, so don't worry about that for yourself right now. It might be a good idea to talk to a counselor on how you can think about this differently and not be so stressed out about your symptoms. Remember to breathe, slow and deep and try to stay relaxed. Music is your friend, so listen and relax. I have been there too and started out being terrified, and I worked out a plan so I could relax. It took me 2 years to find a surgeon who would help me. Your plan will help you feel in control of your choices.

Please talk to your wife about all of this and how together you can both face your challenges. Good for you for going for a walk. That is a great way to lower your stress and help your blood pressure and it will help your spine. You can do this and get your mind off of your worries. Take it one day at a time. Don't push hard on exercise, just walk leisurely to enjoy it. Enjoy the sunshine and listen to the birds.

Jennifer

REPLY
@jm1

Alfred, so sad to read your latest. Did you mean the ambulance officers gave you those meds???? Seems a bit is lost in translation of "luckily I had" , dont understand how you had such a strong drug as Tapentadol, in your possession.???? The combination with amiltryptiline and other drugs you have can be very very dangerous.
And sorry but I already told you no more manipulation, osteos, chiros, physios ,acupunture , all will only aggravate you more at this point, as so sadly, you found out last nite.
I am glad your wife is there to help you. Hoping you see the surgeon very soon. 🙏

Jump to this post

Hi jm1,

You were right about aggravation of symptoms after seeing the osteopath but I was so desperate to get some relief.

The drugs weren't supplied by the ambulance officers.

They asked me if I had other drugs and I actually did but didn't use, namely tapentadol and Baclofen.
I took them last night and had a good night sleep. I was able to handle the extra drugs without any issues

Current medication: Endep 10, Lyrica 25, Clonidine 50 mcg, Diclofenac 50mg, Targin 10/5
Last night the above plus Tapentadol 50mg, Baclofen 5mg

REPLY
@jenniferhunter

@ab6540183

Alfred, Have you discussed your feelings and fears with your wife? Does she drive? If she does, why isn't she helping and taking you to your appointments? Is she busy taking care of your sons or working, and can't leave them alone to help take you to an appointment? She can't help you if she isn't fully aware of what you are experiencing. Please talk to her and figure out a plan, and you'll feel better about a lot of this. Do you have other relatives who can help get you to appointments? In order to get help, you will need to get to appointments and figure out how you can commit to that to be a good patient. How long will it be until you see the surgeon?

If you do have surgery, there will be follow up appointments and probably some rehab too. Surgeons can back out of helping for any number of reasons, so if you want their help, please do your best. I heard a surgeon at a spine conference telling other surgeons he doesn't advise taking cases of patients with mental or emotional issues because no matter how well the surgery is done, they will not be satisfied and may blame the surgeon. I am not making any judgements here, but the surgeon will when he sees you, and you want him to see you as a good patient who wants to fix the problem and heal, and return to their normal life.

Surgery is always a compromise, and hopefully you'll improve your spine function. I am able to drive with my spinal fusion, so don't worry about that for yourself right now. It might be a good idea to talk to a counselor on how you can think about this differently and not be so stressed out about your symptoms. Remember to breathe, slow and deep and try to stay relaxed. Music is your friend, so listen and relax. I have been there too and started out being terrified, and I worked out a plan so I could relax. It took me 2 years to find a surgeon who would help me. Your plan will help you feel in control of your choices.

Please talk to your wife about all of this and how together you can both face your challenges. Good for you for going for a walk. That is a great way to lower your stress and help your blood pressure and it will help your spine. You can do this and get your mind off of your worries. Take it one day at a time. Don't push hard on exercise, just walk leisurely to enjoy it. Enjoy the sunshine and listen to the birds.

Jennifer

Jump to this post

Hi Jennifer
Thanks for your support.

I did speak to my wife about how bad my symptoms are but sometimes she gets fed up with me taking about it all day.

It is hard keeping it inside and when you talk about it it distracts you a bit but makes the person listening to you more anxious.

Sometimes I say things like I don't want to live like this anymore and this stresses my sons and wife.

But she is rather busy during the week going shopping, talking to other carers, going for walks etc.

Many times I am given an appointment date that clashes with my wife's calendar, but I have to accept otherwise I have to wait another 2 or 3 weeks.

I managed to reschedule the C6 injection for next Monday.

I also rescheduled my CT aspect bone scan that I had cancelled this week due to extreme pain, for 20/3/2023.
I know this is not what I expected and asked them to put me on a cancellation list.

I did speak to my pain management doctor yesterday morning who just reiterated to keep the current medication plan (which is not working)) and take an extra targin on the days of the scans.

Today I told him again that I am not happy with the current plan because it is not working anymore.

The neurosurgeon that I saw back in November 2022 told me 'no surgery for these issues' because surgery will not get rid of the pain. This leaves me with the option to keep suffering forever. Anyway I will be getting seeing the new specialist on 23/3/2023 for a second opinion.

Unfortunately I don't have relatives or friends that can take me to these appointments when my wife is busy. I can't drive myself due to pain and drugs in my system.

When I go to procedures I request a taxi code from the transport accident insurer but they take a long time to approve these taxi code and I have to keep ringing them in order to remind them. This actually frustrates me and had a negative impact on my pain.
For cortisone injections I am required to have a next of kin with me to take me home otherwise they can't go ahead with the procedure because it breaks their safety policy as far as the patient is concerned. They won't accept the taxi driver as a next of kin.
Last night I slept well after the ambulances officers advised me to take tapentadol and Baclofen on top of my medication.

Current medication: Endep 10, Lyrica 25, Clonidine 50 mcg, Diclofenac 50mg, Targin 10/5
Last night the above plus Tapentadol 50mg, Baclofen 5mg

Best regards

Alfred

REPLY

@jm1 @jenniferhunter
In the last 2 days I have been feeling more neck pain, tingling in the right rather than the left side.

It probably originates from right C6 then C7 and further down.

The right shoulder and back of the right shoulder are hurting quite a bit, then I get some pain in my wrist and fingers. Not a pleasant feeling at all. I also feel some mild whooshing tension moving downwards towards my right shoulder. It looks like that the whole thing is going on both sides affecting neck, groin, legs and feet as well as shoulders, arms, hands and fingers.

When I sit my right foot gets rather numb, I get pins and needles occasionally in the right foot big toe.

I am taking my meds but are my symptoms getting slightly worse?

I haven't done any bad movements recently, I have been very careful.

Could the osteopath and acupuncture treatments that I have had in the last week have caused this?

My doctor is clueless about the cause, therefore I would like to ask people on this discussion board if they have experienced these symptoms ?

What safe, gentle exercises and stretches can I do to help with this?

Thank you.

REPLY
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