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.

@jenatsky

I reread your reply again and I wanted to point out that you have multiple vertebrae that need to be fused and you have multiple areas that are compressing on nerves in your neck causing you pain. If you also have pain in your legs too you may have damage lower down too. At 66 you’re at the age to begin feeling your body aging and I’m sure the trauma you endured did not help much. I wouldn’t be surprised if they fused 3 or 4 vertebrae in your neck. And I’m only guessing that sitting at a computer makes things worse?

Jump to this post

Hi Jenatsky,

how are you? How are you managing your issues?

I have been under a lot of stress recently and the pain management medicines are making it hard to relax and slow my breathing.

The doctor recommended to take 75mg of Pregabalin, Targin 10/5, Clonidine 50mcg.
At the beginning the Pregabalin help me but yesterday evening I started to feel weird in my mind, I felt disconnected. Early this morning I woke up suddenly after a bad nightmare. I could feel electric currents flowing from my neck downwards. I have been experiencing these electric currents and increased pain for the last 15 days now straight after having had first acupuncture on 22/2/2023 and then osteopathy on 23/2/2023.
I contacted the acupuncturist and the osteopath in regards to this increased pain and electric currents but they denied that their service could cause these. All I know is that before seeing these people I did not have these new issues. I was trying to get some relief and instead I got worse. You can't trust anyone

I have questioned my pain management doctor about all these symptoms but he did not address the answers to my questions?

Are these problems that I have life threatening? My doctor said no, but I am going through hell daily and nightly.

I am always at home unable to do anything due to either being drugged up or pain once I become sober again.

When I am sitting at the computer I am wearing the collar and I am not looking down at he screen because the screen is at eye level. I only spend about 15 to 20 minutes looking at the screen. If it hurts I take a break and then go back to complete my messages.

I apologize asking the following question but I need to get an idea about fusion.

Can my condition be treated successfully by a skilled neurosurgeon?
Will a fusion reduce my pains dramatically?
Will the fusion make me stiff? Will I be able to drive, reverse the car?

I feel 2 sore hard lumps around the left of T1 and on the right of C7 vertebrae.

I wondered if these are bone spurs or disc squirting out.

I asked my GP and pain management doctors but they told me not to worry about them.
I asked them to have them investigated with either a ultrasound or CT scan but they completely ignored me.

I have made an appointment with another pain management doctor here in Melbourne but I have to wait until the 6th of April. The new medical group is called PrecisionHealth (Precision Brain, Spine & Pain ).
The existing appointment that I had on the 22 of March with another neurosurgeon has been postponed to the 17 of May due to the doctors' family issues. Quite disappointing.

Thanks again for your support.

Best regards

Alfred

REPLY

Hello Alfred
Sorry I have been MIA, as been having my own pain problems and could not be online. Once again I am going to suggest that you must limit your typing as it further worsens your situation, no matter what you say.

IMPT! I want to ask everyone reading this to go back and read all the pages and past information given to Alfred before commenting and repeating and repeating and Repeating!! old news.

I am glad to read you finally ! got a new pain Dr, as I told you long ago to get rid of the one you had. Remember to get the 10mg prednisone dose pack and gabapentin from the new Dr.
I am also glad to read you are wearing the neck brace I recommended. Altho probably not as long as you should be. I once had to live in one for 6 weeks all day long.
Please stop worrying about the lumps, probably justinflammation or spasms, which is why the drs ignore you.
I am upset that you only take your meds at night and do not keep a continuous amount going in your bloodstream to break the pain cycle. In have harped on this several times and told you how to deal with the side effects. I know as I have been there and spent weeks in hell several times, so take your meds on a regular basis round the clock. Also trying to lay blame on the osteopath when I told you not to go, doesn t score points. Have you been icing all day on and off, no probably not.....
Let cut to the point, as I said before you will need a 2 -3 level fusion. Stop with the "will I be flexible or be able to drive "comments, it's just your fear and anxiety, which we have tried to help you get under control, but only you can choose to do that. Face the fact that you require a neck fusion and make plans towards that.

After reading your posts, I have read about the horrible hospital situation in Australia online. No wonder your neurosurgeon has stepped off and there is no replacement. You have to get busy finding another asap.
The transport insurance from the accident should cover the surgeon and the surgery.
If they don't suggest you sell your bike and start raising funds. Perhaps you should start a " go fund me " internet page or your biking buddies could do several charity events to raise funds for you.
If you get enough funding possibly, you could fly out of Australia to Japan or Thailand or California to get a decent hospital and surgeon , since Australia is such a mess.
Again lots of tough love from me. . Let's put the anger, blame, fear and anxiety away, stop repeatingand repeating yourself about the pain, it only builds more negative neuroplasticity in your brain and over sensitivity to pain. Yes your pain is structural and needs a fusion to fix it. So let's face it and get going in that direction. Stop questioning and start planning. Dont worry about a neurosurgeon accepting you so long as you demonstrate the proper attitude. Your tough love buddy, jm1

REPLY

Alfred, I watched the video by Dr. Sue and was very impressed. Here is some info from the web but it is based on U.S. medical guidelines and yours may differ.
What are the indications for cervical laminoplasty?
Current indications for laminoplasty include cervical myelopathy or myeloradiculopathy secondary to OPLL, cervical spondylosis, congenital stenosis, multilevel disk herniation, and traumatic central cord syndrome.
You certainly have multi-level issues with myelopathy, disk herniation, nerve root compression. How is your overall health otherwise? What is your BMI? Jules

REPLY
@jenatsky

Alfred, I watched the video by Dr. Sue and was very impressed. Here is some info from the web but it is based on U.S. medical guidelines and yours may differ.
What are the indications for cervical laminoplasty?
Current indications for laminoplasty include cervical myelopathy or myeloradiculopathy secondary to OPLL, cervical spondylosis, congenital stenosis, multilevel disk herniation, and traumatic central cord syndrome.
You certainly have multi-level issues with myelopathy, disk herniation, nerve root compression. How is your overall health otherwise? What is your BMI? Jules

Jump to this post

@jm1

Hi

I am not sure about the myelopathy because I asked the pain doctor and he said no that I didn't.

I don't about my BMI but I weigh 76.4 kg and I am 170 cm high. I used to be 173 cm when I was younger. Last year before the bad pain started I was 69 kg.

As far as laminoplasty goes there isn't much in Australia. The US is much more advanced than us in the world down under.

My health is good as far as my liver, kidneys, heart and lungs go. I used to be a long distance road bike rider for 20 years. I use to cover anything from 50, 70, 80, 100, 140, 160 to 200 km in a day depending on the occasion. My average ride would have been 90 km. My heart beat is anything between 41 and 50 beats per minute due 20 years of physical activity that also included working out at the gym. I am not a smoker and I probably used to drink half a glass of red wine at dinner time.

Anyway I the last 2 weeks thing got worse and hope that these will improve somehow of the next few weeks.

Today I managed to drive with my collar on to see my friend who lives 20 minutes away.
Seeing again made me feel good.

Thank you.

Best regards

Alfred

REPLY
@jm1

Hello Alfred
Sorry I have been MIA, as been having my own pain problems and could not be online. Once again I am going to suggest that you must limit your typing as it further worsens your situation, no matter what you say.

IMPT! I want to ask everyone reading this to go back and read all the pages and past information given to Alfred before commenting and repeating and repeating and Repeating!! old news.

I am glad to read you finally ! got a new pain Dr, as I told you long ago to get rid of the one you had. Remember to get the 10mg prednisone dose pack and gabapentin from the new Dr.
I am also glad to read you are wearing the neck brace I recommended. Altho probably not as long as you should be. I once had to live in one for 6 weeks all day long.
Please stop worrying about the lumps, probably justinflammation or spasms, which is why the drs ignore you.
I am upset that you only take your meds at night and do not keep a continuous amount going in your bloodstream to break the pain cycle. In have harped on this several times and told you how to deal with the side effects. I know as I have been there and spent weeks in hell several times, so take your meds on a regular basis round the clock. Also trying to lay blame on the osteopath when I told you not to go, doesn t score points. Have you been icing all day on and off, no probably not.....
Let cut to the point, as I said before you will need a 2 -3 level fusion. Stop with the "will I be flexible or be able to drive "comments, it's just your fear and anxiety, which we have tried to help you get under control, but only you can choose to do that. Face the fact that you require a neck fusion and make plans towards that.

After reading your posts, I have read about the horrible hospital situation in Australia online. No wonder your neurosurgeon has stepped off and there is no replacement. You have to get busy finding another asap.
The transport insurance from the accident should cover the surgeon and the surgery.
If they don't suggest you sell your bike and start raising funds. Perhaps you should start a " go fund me " internet page or your biking buddies could do several charity events to raise funds for you.
If you get enough funding possibly, you could fly out of Australia to Japan or Thailand or California to get a decent hospital and surgeon , since Australia is such a mess.
Again lots of tough love from me. . Let's put the anger, blame, fear and anxiety away, stop repeatingand repeating yourself about the pain, it only builds more negative neuroplasticity in your brain and over sensitivity to pain. Yes your pain is structural and needs a fusion to fix it. So let's face it and get going in that direction. Stop questioning and start planning. Dont worry about a neurosurgeon accepting you so long as you demonstrate the proper attitude. Your tough love buddy, jm1

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Hi jm1,

how are you?

Thank you for your support.

Yes I am repetitive by default, I can be somehow annoying at times.

I won't be able to see the second pain management doctor until the 6th of April.

I haven't been taking the meds during the day because the pain management doctor told me to take them at night. It was me that decided to take the extra pregabalin in the last 3 days because I wasn't coping. After taking them I started feeling nausea and feeling extra hot inside my body.

The biggest problem that I have at the moment on top of my existing issues, is managing the anxiety. I find it truly hard to do meditation, doing slow breathing especially after taking the meds, I am feeling short of breath most of the times.

I mentioned the lumps because the pain, the burning start from these lumps and spread downwards. If I hardly touch the right trap muscle I feel very deep pain there.

Best regards

Alfred

REPLY

Glad you’re protecting your neck but how was driving for your neck and mobility? You’re about where I am BMI wise 26.4 so you’re a little over weight for your height. Good for you to have kept in shape over the years except we aren’t made to withstand trauma by automobile. I guess we all end up with something in the end. I’ve not heard of the laminoplasty previously and it looks like an option maybe. Here is a report from U.S. comparing the two procedures. I hope you find some real relief soon. Keeping your social contacts is important for your mental health but try not to place your neck in jeopardy by auto travel. Having an accident or especially being rear ended can potentially be a killer for your neck. Be safe
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6456105/

REPLY
@jenatsky

Glad you’re protecting your neck but how was driving for your neck and mobility? You’re about where I am BMI wise 26.4 so you’re a little over weight for your height. Good for you to have kept in shape over the years except we aren’t made to withstand trauma by automobile. I guess we all end up with something in the end. I’ve not heard of the laminoplasty previously and it looks like an option maybe. Here is a report from U.S. comparing the two procedures. I hope you find some real relief soon. Keeping your social contacts is important for your mental health but try not to place your neck in jeopardy by auto travel. Having an accident or especially being rear ended can potentially be a killer for your neck. Be safe
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6456105/

Jump to this post

Hi Jenatsky

Today when I drove I had to turn my torso to look properly.

I am normally a very cautious and safe driver, but obviously you can't control what others do.

Earlier today I was OK to drive and had reasonable time seeing my friend Danny and his family after a long time.

Tonight my right side of the neck has been getting progressively worse with the burning. The left is painful but not as bad.
How do I know if it is nerve pain, muscles, ligament or tendon pain?

I also feel cracks in my neck as I move my head.

This stressing me out. I took my meds but they are not helping. I am feeling rather drowsy with extreme pain. Also my right lumbar impingement is causing pain in my calf, Achilles tendon and foot. It is burning all the way down the right side of my trapezius muscle

Looks like it is going to be a sleepless and painful night.

I can't find any position that will reduce the pain, it is full on.

So you think that my out of alignment vertebrae could be touching the spinal cord?

My pain doctor told me that there was still some space before touching the dura.

Thank you for the link and your contributions.

Best regards

Alfred

REPLY
@jenatsky

Glad you’re protecting your neck but how was driving for your neck and mobility? You’re about where I am BMI wise 26.4 so you’re a little over weight for your height. Good for you to have kept in shape over the years except we aren’t made to withstand trauma by automobile. I guess we all end up with something in the end. I’ve not heard of the laminoplasty previously and it looks like an option maybe. Here is a report from U.S. comparing the two procedures. I hope you find some real relief soon. Keeping your social contacts is important for your mental health but try not to place your neck in jeopardy by auto travel. Having an accident or especially being rear ended can potentially be a killer for your neck. Be safe
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6456105/

Jump to this post

Thank you @jenatsky for the meta analysis. Sadly only 14 cases. Didnt read that LP covered multi level lithesis. In this situation fusion is most likely more appropriate. Alfred you may want to search Pub Med and NIH websites for further info, JUST DONT OVERDO, you always pay for it with more pain later. Hopefully your new pain Dr tells you to take your meds more regularly. At least dont wait til night, Take them earlier so by nitetime they are working better. Yes you will be drowsy and dizzy during the day, and take with crackers or some bland food to prevent nausea. Tradeoff is less pain! Btw, once again, It's the nerves Alfred! Nerves inflame all the other tissues, causes muscle spasm , causes build up around ligaments. One time the ligaments around both my SI joints were like golf balls! Its is all from the spinal nerve impingement and compression. Driving will really, really aggravate your lumbar issues, so be advised......

REPLY

Your MRI report shows you have nerves being pinched where they exit your spine running to your various body parts. This is why you are having so much discomfort and moving your neck most likely elicited pain. It’s a double ended sword in that moving your head and neck causes discomfort but keeping your head in one stationary position for a set period also can cause discomfort too when you do go to move it. This is what I’m currently going thru but mine is minor compared to you. Can you face time or zoom your friends instead of Clancy car travel? Clarify one thing for me, you said you went to a chiropractor and many of these symptoms started following that visit? Have you shown the chiropractor your MRI report or the films? I’m surprised anyone even adjusted your neck with an MRI such as yours.

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