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.

AlfredB | @ab6540183 | Jun 18, 2023

In reply to @pieceofheaven "Thank you for your help. I am going to go through my cervical MRI and look..." + (show)

Hi pieceofheaven,

how are you?

Last night my neck was burning all night and this morning I am feeling pins and needles all over my body on and off.

As of 2 weeks ago my neck pain has entered a new phase. Now it is constantly burning on both sides. It feels like incredible tightness and stabs inside without a pause. Even the strongest drugs are not managing the pain well. On top of this, I started to get burning, numbness of the groin, legs, feet and toes. I get painful pins and needles in the toes that makes it hard for me to walk and drive locally. Not only I have cervical spine issues but also have lumbar issues. The bulging at C5 is contacting my spinal cord. This month last year I was perfectly fine. My doctors are useless and am not getting real help from them. Not managing the pain is a massive challenge. My blood pressure is nearly 160/100 daily due to stress and pain. I don't want a spinal fusion, I just want to go to Florida to get a minimally invasive laser disc repair surgery. There is no one that does this in Australia. I need to get it fixed quickly because I don't want to end up in a wheel chair.
The other challenge is having enough money to cover this. The public hospitals in Melbourne are overworked and under staffed,
I was told that there is a minimum waiting period of 3 years. That is too long.
Alfred

Celestialzone | @pieceofheaven | Jun 18, 2023

In reply to @ab6540183 "Hi pieceofheaven, how are you? Last night my neck was burning all night and this morning..." + (show)

@ab6540183
Alfred, I’ve never heard of a 3 year waiting time here in America, but since I have developed spine issues (my first really painful medical issue) I’ve realized our medical system is working against us. Especially once you hit 60. At 60 and after every spinal issue is “just part of aging”! !! So not true. No one should live like this be they 6 years old or 96. As for expense; I can only afford what insurance allows and insurance overrules the physicians it seems. We are all screwed.

AlfredB | @ab6540183 | Jun 23, 2023

In reply to @pieceofheaven "@ab6540183 Alfred, I’ve never heard of a 3 year waiting time here in America, but since..." + (show)

Hi Celestialzone

Unfortunately Australia is behind the rest of the world.

There are long waiting queues at the emergency department, people waiting for life changing operations.

I am talking about the public hospital system here. Every Australian is entitled to be looked after but because the public hospital system is overloaded, understaffed, we have to wait.

Our Victorian Premier Daniel Andrews has screwed our economy during the lockdowns, refused to fund public hospitals and the ambulance service, therefore you may be waiting up to 1 hour for an ambulance which is not acceptable for an emergency and once you get to emergency you will be waiting for hours before seeing a doctor if your situation is not life threatening. Obviously if a patient has had a serious car accident he/she will be looked after immediately. I have called the ambulance in the past due to extreme neck pain. They took me to the hospital and instead of allocating a bed for me due to my very bad condition, they made me wait in the waiting area for hours. Now when I get a flare up I don't even call them anymore. It is not uncommon for the hospital to put you in a bed in the corridors, because they have run out of rooms. If you have covid you get prioritised but not if you have cervicalgia, neuralgia. Just a few days ago in the state of Victoria (Australia) our politicians gave themselves an abundant pay rise especially our Victorian Premier Dan where is salary went from $198000 per year to $481000 per year. This is ludicrous to say the least and a kick in the guts for all the people like me needing medical procedures.
In the meantime I have started to pay a private medical insurance so that I can get looked after by Jan 2024. Why Jan 2024, because there is a 12 month waiting period for existing medical conditions before I can claim.
Since the 5th of June my neck, lower back conditions have worsened. I am in pain 24/7, I am struggling to walk without pain. The pain from the neck is spreading into the legs, feet and toes. My latest MRI show cord contact around the C5 area. This could be cause more referred pain. When I lie down my legs and feet feel tight, painful and numb. I am also getting pins and needles around different parts of my body even near my genitalia.

I told my pain management doctor about my issues getting worse, but he didn't look overly concerned about it and fixed my next appointment for the 24th of July.
To do another chat session and get paid for it?
Every day it is hard to sleep despite the drugs, get up, walk, do things around the house.
I don't want to end-up in a wheelchair.
I have been praying for 10 months and still can't see the light at the end of the tunnel.

Best regards

Alfred

Celestialzone | @pieceofheaven | Jun 23, 2023

In reply to @ab6540183 "Hi Celestialzone Unfortunately Australia is behind the rest of the world. There are long waiting queues..." + (show)

@ab6540183

Hi Celestialzone

Unfortunately Australia is behind the rest of the world.

There are long waiting queues at the emergency department, people waiting for life changing operations.

I am talking about the public hospital system here. Every Australian is entitled to be looked after but because the public hospital system is overloaded, understaffed, we have to wait.

Best regards

Alfred

Jump to this post

Oh, Alfred!! Our politicians are just as overpaid as yours and many receive same payment for the rest of their lives after leaving the senate, Congress, or presidential/vice presidential positions. It is insane and why do we allow it!! Our healthcare has not degraded to what you are experiencing! This is horrid!! I fear we are headed down the same road, yet those in power will always receive prompt, superior medical attention whether it be a scratch or a brain tumor. They would never be made to endure what you have endured, and probably wouldn’t have the fortitude to get through it. I am praying for you.

AlfredB | @ab6540183 | Jun 25, 2023

In reply to @pieceofheaven "Oh, Alfred!! Our politicians are just as overpaid as yours and many receive same payment for..." + (show)

Hi,

For several days I have strange sensations when I lie down on the bed. I feel severe pain, burning at the base of my neck, tingling that spreads to my legs, feet and toes. I feel all tense and sore. There is an intermittent sensation of pins and needles in various parts of the body and also the skin. I notice this every time I take nortriptyline which is a medicine for neuropathic pain. I wonder if I'm allergic. I'm worried. My doctors remain indifferent when I contact them. I suppose my nerves are deteriorating.
I can't get relief.

Celestialzone | @pieceofheaven | Jun 25, 2023

If you google nortriptyline there is a very long list of meds with which it can have a negative interaction. I wonder if this is happening to you. I don’t know what all you take but maybe it is a drug interaction problem.

AlfredB | @ab6540183 | Jun 28, 2023

In reply to @pieceofheaven "If you google nortriptyline there is a very long list of meds with which it can..." + (show)

Hi Celestialzone,

Thank you for the tip.

In the last day I am unable to sleep to to the burning from neck to toe and numbness despite pain tablets.

My pain management doctor is coming back on the 4 of July, US Independence Day.

In the meantime I have to manage somehow.

Today I went to my GP and got my Lumbar Spine MRI report.
I doesn't look good at all. So I am suffering neck and lumbar pain at the same time.
It is a disaster at the moment with the pain.

I am attaching my MRI lumbar report.

Best regards

Alfred

@jenniferhunter

Shared files

Alfred's Lumbar MRI report 22/6/2023 (lumbar-mri.pdf)

AlfredB | @ab6540183 | Jul 2, 2023

@jenniferhunter

Hi Jennifer

How are you?

I am not getting better.

Can you please help me with this if you can?

I have noticed that it has been at least 3 weeks or more that when I go to sleep and place the right side of my head on the pillow, I get these intense deep pains in my left side of the neck which is excruciating. Then my right side is also getting extremely painful. This happens despite me taking pain medication.

The extreme pain is at the base of the neck, numbness, burning, pins and needles.

From my neck the pain travels to the legs and feet. They feel extremely tight, painful and numb. The toes hurt too. I also get shoulder pain in both sides, arms, fingers multiple pins and needles around the body. It feels as if I am getting stung by bees.

If you look at my latest MRI report on the previous message I also have lumbar issues.

Can multiple nerve compression in the neck cause cramps in the various muscles of the neck and head? MY neck is so stiff that I struggle to turn my head.
It feels like having cramps.

Tomorrow I have an appointment with the pain management doctor who made me wait nearly a month despite my unmanageable pain. I feel that my doctors do not seem concerned about how hard it is to live life.

Maybe it is time to choose another doctor? I feel that if something is not done soon I may lose the ability to move around.

Thank you

Best regards

Alfred

Parker | @parkerr | Jul 14, 2023

In reply to @vward1969 "This has been so helpful to read all of your comments. I had gone to Mayo..." + (show)

Our stories are extremely similar, I highly recommend The Mayo Clinic neurosurgeon. I had last injury in 2017, finally got answers and surgeries in 2021 for neck ACDF C3-C7 and L1-L3 a few months ago May 23rd 2023. So much better!!

Christine | @thisoldewe | Aug 6, 2023

Hi Alfred,
I am concerned about you and your present situation. I am in Canada, but I do understand parts of the health care system in Commonwealth nations.
The ER is good but they will only treat the "Presenting Problem":. so if pain is the biggest problem of that moment, then that's the treatment you will receive. They will not engage in any diagnostics.
Since I do not know about the facilities in your area in Australia, I did look online for any helpful contacts.
There is a lot of spinal cord injuries sites --- not quite your place, but they may be a source of 'where to suggest'.
On one site the ''Spinal Life Association", they state that they are 'advocates' and state, "see how we can help you". Sounds good! They will certainly be able to understand what benefits/clinics/doctors/specialists are available in your 'neck of the woods', and steer you to the right place and persons.
In the meantime, have you tried talking to the "Mental Health line"? The more professionals you have in your corner the better, and with your permission, they can talk to each other to formulate a plan of action for you. There appears to be a different number for contact in each different state. You will have to call the one that is in your area. Please don't be put off in reaching out to these folk... you can bet that every person with a spinal pain and condition will have done so already!! Please don't allow yourself to stay in a dark place --- it can become a black hole. No, they don't have the cure, but it is so good to talk with someone who understands your life. That's my personal recommendation and my professional one!
You are the Captain of your ship --- so far, there have been too many rocks to navigate around! You are the one who can change course,
Please let us know how you are doing as you start afresh in your journey. I have faith in you !!
All the best Alfred!
christine