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.

@vlk420

I had a neck fusion and started getting severe tightness and pain that was awful, for years I begged my son to rub me and I went to professional massage, acupuncture, even bought a heated massage water bed, doctors was prescribe pain meds for 10 years, but my new doctor found out that I was allergic to the Statin, after I cut way back on the dose, my neck and shoulders relaxed
and that’s a common side effect of Statins I don’t know but maybe some of your meds could cause your ongoing pain, if it worsens you should be seen 3 months isn’t very long. Are you sure your fully fused? I ask because I also had broken finger fused almost a year ago and it is just now really feeling stronger . Fusions take time, L5_S1 fusion 2005 no back pain but now I’m feeling like I want the hardware out because it seems like it’s putting pressure on my nerves. It does take time to heal.

Jump to this post

Thank you for responding. It gives me hope. I just went to a massage therapist and will try acupuncture next. This is just so frustrating. They told me I would be off work for 3 weeks and now it's been 3 months. Also if I can't get the pain under control I might have to retire which will be early retirement and really reduce my retirement. I only had 3 years left. Had I known I would be in worse pain I would have put off the surgery or not had it at all because I could at least manage before. THank you for the ideas.

REPLY
@vlk420

Hi Jennifer, can you please explain to us why doctors are not always listening to what we are trying to tell them, they are not always right and it’s that very reason why they miss potential life threatening conditions. I would be a lot worse off if I didn’t be more pro bono with the rare conditions I’ve had to help them make the correct choices for me. I have walked out of more than one doctors visit from their unpleasant and unprofessional attitude.

Jump to this post

@vlk420 It sounds like you are a pretty good advocate for yourself. I don't think doctors ignore patients intentionally, but when they don't know the answer, they don't know and probably don't want to admit that. No surgeon wants to fail and have the guilt of making a mistake.

Surgeons are looking for straightforward problems to solve without complications. Many spine surgeons have not been spine patients themselves, and if you haven't lived with a problem that then affects something else, and so on, the water can get muddy and you may not recognize a related symptom. They are under a lot of stress to get it right and have a good outcome, and it's easier to pass on a problem they don't fully understand in favor of an easier case because there are many patients to choose from and a backlog waiting to get in the door. Then there is the numbers game of how many surgeries can you do to earn X number of dollars to support your privately owned spine center and turn a profit? It is so much easier to take easy cases that are quicker to resolve and more profitable. They have to discard irrelevant information from the patient, and sometimes, they only listen to what they have recognized before as related symptoms in the past. Not all patients are alike, and some, like me, have an unusual presentation of symptoms that are misunderstood until there is enough literature about that type of case and it becomes more widely known.

The spine device companies promote their implant products and hardware and train surgeons in the use of their devices, so that influences what a surgeon chooses to solve a problem. Not all patients fit into the same predefined solution.

Then there is the question of personality and the reason the surgeon chose his or her profession, and do they have personal problems in their lives that affect them? Mental health issues can affect anyone including doctors who are stressed by their jobs and overworked. I have come across different personalities and some doctors who thrived on their own importance. Fortunately there are surgeons who are humble and gifted, and who like to take on more difficult problems because they want the challenge of solving them. That is the surgeon I chose after all the others had missed the complete diagnosis.

As a patient, the more you know about your condition, the better and more educated questions you can ask, and that will help you figure out if the surgeon is offering good solutions to you. We have to be careful as patients not to diagnose ourselves, and let the surgeon do that, but if they have missed the problem, it's time to look elsewhere. I had the experience of finding the right diagnosis in medical literature after I was dismissed, and none of the doctors who were my providers would help me address it with the surgeon who missed it. Their advice was get another opinion elsewhere, and I did, but I introduced the medical literature at the start, and asked if my case was like this case in literature which allowed the surgeon the task of answering the question, and the satisfaction of it being the correct diagnosis after a successful surgery. They want to know that they got it right and helped the patient giving them improvement in their lives. Theses cases are also discussed at spine conferences, and they need good successful cases that they can teach others about.

Our discussions here are important because patients have to advocate for themselves. It is a responsibility that we must accept, otherwise, we may not get the help we need.

Is there anything you would like add to this list about how to improve the patient experience?

REPLY
@bearmiller03

I have c5 and c6 fusion on Dec. 13th. I'm at the 3-month date and still have pain in my right arm, tingling in fingers occasionally, and some burning in my neck. I'm actually worse than I was before surgery. They keep saying it just takes time. I am going to PT 2 times a week plus started on Lycia. Lycrica helps some but I want to be better. Just wondering about other things people have tried such as myofascial, etc. I'm open to any ideas.

Jump to this post

@bearmiller03 You are still very early in your recovery. I didn't start with PT until about 4 months post op. Have you discussed the pain with your therapist?

What my therapist did that helped me a lot was myofascial release. I have actually done this for about 10 years even before I became a spine patient. MFR helps release the tight tissue and can do that for the surgical scar tissue internally. Periodically mine tightens up around the incision scar, and I stretch to release it; all things I have learned from my PT.

It really takes a longtime to heal, so don't loose hope. They say it takes a year, and nerve healing can go on for that length of time too. There is still inflammation from the surgery too which is part of the healing process.

MFR is Myofascial Release Therapy. There is a discussion on MFR that you might find helpful.

Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

You can find a provider search at http://mfrtherapists.com/

REPLY
@bearmiller03

Thank you for responding. It gives me hope. I just went to a massage therapist and will try acupuncture next. This is just so frustrating. They told me I would be off work for 3 weeks and now it's been 3 months. Also if I can't get the pain under control I might have to retire which will be early retirement and really reduce my retirement. I only had 3 years left. Had I known I would be in worse pain I would have put off the surgery or not had it at all because I could at least manage before. THank you for the ideas.

Jump to this post

@bearmiller03 Don't give up. 3 months is very early in your recovery. I takes a lot longer, and 3 weeks was not an honest answer for a reasonable leave of absence from the workplace after spine surgery. Perhaps that was being influenced by employer expectations. Healing from a fusion takes longer than healing after disc replacement, and the patient's age and condition has a lot to do with that. If you are fused, your surgeon may allow physical therapy. The scar tissue tightens up a lot during healing and may be a source of pain for you.

You might want to look at mypofascial release therapy. It has helped me a lot.

MFR is Myofascial Release Therapy. There is a discussion on MFR that you might find helpful.

Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

You can find a provider search at http://mfrtherapists.com/

Don't second guess yourself. Putting off surgery can also increase nerve damage which can become permanent. It is best to intervene earlier if nerve damage is an urgent concern, and doctors often can't tell you exactly when that will happen and when nerves will start to die. It can get better and it takes time and patience. Do your best to relax and let yourself heal.

REPLY
@jenniferhunter

@bearmiller03 You are still very early in your recovery. I didn't start with PT until about 4 months post op. Have you discussed the pain with your therapist?

What my therapist did that helped me a lot was myofascial release. I have actually done this for about 10 years even before I became a spine patient. MFR helps release the tight tissue and can do that for the surgical scar tissue internally. Periodically mine tightens up around the incision scar, and I stretch to release it; all things I have learned from my PT.

It really takes a longtime to heal, so don't loose hope. They say it takes a year, and nerve healing can go on for that length of time too. There is still inflammation from the surgery too which is part of the healing process.

MFR is Myofascial Release Therapy. There is a discussion on MFR that you might find helpful.

Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

You can find a provider search at http://mfrtherapists.com/

Jump to this post

Thank you so much. I had wondered about myofascial release. No one really seems to know about it or recommend it.

REPLY
@ab6540183

@jenniferhunter

Hi again,

without me thinking about it my blood pressure rose to 140/94.
The increase in pressure corresponds to pain increasing in my neck but I am not thinking about it.

Jump to this post

@ab6540183
Alfred, play a game with yourself.

Start by measuring your blood pressure and write down your numbers. Then put on your headphones and listen to music you LOVE, while you are looking at pictures of your dear grandchildren. Do this for about an hour while you breathe deeply and slowly in time to the music, and keep your mind focused on the children. If your mind wanders, just circle back to the kids. After the hour, measure your blood pressure again and write it down on a chart.

You may do this any time you feel anxious. The more you do this, the better! In time, you will see that you have learned to lower your blood pressure. This was my game when I was anxious, and I could do this in my mind anytime. Believe me it helps! You will learn to gain some control of your situation this way. Try it and let me know if you have success. Don't let your blood pressure stay high and increase your risk of heart disease and stroke when you can do something about it?

Are you on blood pressure medication?

REPLY
@jenniferhunter

@bearmiller03 Don't give up. 3 months is very early in your recovery. I takes a lot longer, and 3 weeks was not an honest answer for a reasonable leave of absence from the workplace after spine surgery. Perhaps that was being influenced by employer expectations. Healing from a fusion takes longer than healing after disc replacement, and the patient's age and condition has a lot to do with that. If you are fused, your surgeon may allow physical therapy. The scar tissue tightens up a lot during healing and may be a source of pain for you.

You might want to look at mypofascial release therapy. It has helped me a lot.

MFR is Myofascial Release Therapy. There is a discussion on MFR that you might find helpful.

Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

You can find a provider search at http://mfrtherapists.com/

Don't second guess yourself. Putting off surgery can also increase nerve damage which can become permanent. It is best to intervene earlier if nerve damage is an urgent concern, and doctors often can't tell you exactly when that will happen and when nerves will start to die. It can get better and it takes time and patience. Do your best to relax and let yourself heal.

Jump to this post

I checked the website for the myofasical and the closest one is an hour away. Not bad but worried about that drive right now. Do you know anything about Fasical Counerstrain? I looked that up and only one person is here in Kentucky. Just didn't know the difference.

REPLY
@jenniferhunter

@vlk420 It sounds like you are a pretty good advocate for yourself. I don't think doctors ignore patients intentionally, but when they don't know the answer, they don't know and probably don't want to admit that. No surgeon wants to fail and have the guilt of making a mistake.

Surgeons are looking for straightforward problems to solve without complications. Many spine surgeons have not been spine patients themselves, and if you haven't lived with a problem that then affects something else, and so on, the water can get muddy and you may not recognize a related symptom. They are under a lot of stress to get it right and have a good outcome, and it's easier to pass on a problem they don't fully understand in favor of an easier case because there are many patients to choose from and a backlog waiting to get in the door. Then there is the numbers game of how many surgeries can you do to earn X number of dollars to support your privately owned spine center and turn a profit? It is so much easier to take easy cases that are quicker to resolve and more profitable. They have to discard irrelevant information from the patient, and sometimes, they only listen to what they have recognized before as related symptoms in the past. Not all patients are alike, and some, like me, have an unusual presentation of symptoms that are misunderstood until there is enough literature about that type of case and it becomes more widely known.

The spine device companies promote their implant products and hardware and train surgeons in the use of their devices, so that influences what a surgeon chooses to solve a problem. Not all patients fit into the same predefined solution.

Then there is the question of personality and the reason the surgeon chose his or her profession, and do they have personal problems in their lives that affect them? Mental health issues can affect anyone including doctors who are stressed by their jobs and overworked. I have come across different personalities and some doctors who thrived on their own importance. Fortunately there are surgeons who are humble and gifted, and who like to take on more difficult problems because they want the challenge of solving them. That is the surgeon I chose after all the others had missed the complete diagnosis.

As a patient, the more you know about your condition, the better and more educated questions you can ask, and that will help you figure out if the surgeon is offering good solutions to you. We have to be careful as patients not to diagnose ourselves, and let the surgeon do that, but if they have missed the problem, it's time to look elsewhere. I had the experience of finding the right diagnosis in medical literature after I was dismissed, and none of the doctors who were my providers would help me address it with the surgeon who missed it. Their advice was get another opinion elsewhere, and I did, but I introduced the medical literature at the start, and asked if my case was like this case in literature which allowed the surgeon the task of answering the question, and the satisfaction of it being the correct diagnosis after a successful surgery. They want to know that they got it right and helped the patient giving them improvement in their lives. Theses cases are also discussed at spine conferences, and they need good successful cases that they can teach others about.

Our discussions here are important because patients have to advocate for themselves. It is a responsibility that we must accept, otherwise, we may not get the help we need.

Is there anything you would like add to this list about how to improve the patient experience?

Jump to this post

Hi Jennifer,

how are you?

I need some advice from you because I am going through a tougher phase now.

Since I went to the osteopath I have been into a much higher level of pain now.

I feel chronic stabbing in the base of my neck to the left and 2cm below to the left.

Despite taking my pain management tablet I am not able to control it whether I am standing, sitting or lying down. Now lying down is impossible. I feel that something is pressing inside deeply. My left trap, shoulder, arm, fingers are in really bad pain, my blood pressure is high, getting strong headaches.
I am doing deep breathing, ice packs, listening to relaxing music but it is not cutting it.

Last night I took 5mg (half tablet) baclofen with 10mg targin. I got a bad reaction from it like very dry mouth, felt very drowsy but it wasn't taming the pain.

I contacted the doctor's reception to ask for another appointment with the doctor.

What can you advise me in the mean time? What did you take when you were in pain?

Should I avoid any physiotherapy considering the inflammation? If it is nerve pain will it improve with time?

Thank you.

Alfred

REPLY
@ab6540183

Hi Jennifer,

how are you?

I need some advice from you because I am going through a tougher phase now.

Since I went to the osteopath I have been into a much higher level of pain now.

I feel chronic stabbing in the base of my neck to the left and 2cm below to the left.

Despite taking my pain management tablet I am not able to control it whether I am standing, sitting or lying down. Now lying down is impossible. I feel that something is pressing inside deeply. My left trap, shoulder, arm, fingers are in really bad pain, my blood pressure is high, getting strong headaches.
I am doing deep breathing, ice packs, listening to relaxing music but it is not cutting it.

Last night I took 5mg (half tablet) baclofen with 10mg targin. I got a bad reaction from it like very dry mouth, felt very drowsy but it wasn't taming the pain.

I contacted the doctor's reception to ask for another appointment with the doctor.

What can you advise me in the mean time? What did you take when you were in pain?

Should I avoid any physiotherapy considering the inflammation? If it is nerve pain will it improve with time?

Thank you.

Alfred

Jump to this post

@ab6540183 Alfred, I did not take pain medications either before or after my spine surgery. I had some basic ibuprofen after a very painful epidural spine injection, and nothing took that pain away or touched it (not even a steroid dose pack), and every time I moved it flared up. The best I could do was prop myself up on pillows and lie down and relax and try not to move. There was no point in getting upset over something I could not control. Gradually over time, as the steroid injection dissipated it got better, but that took a couple months with stabbing electrical burning pain right into my dominant hand.

To manage my fear and pain, I did exactly what I recommended to you with the music and breathing therapy. The spine injection was the most pain I had ever endured in my life, far greater than my broken ankle and ankle fixation surgery or spine surgery. At the time of the spine injection, I was convulsing with pain and close to passing out when they reminded me to breathe because the first thing you do in severe pain is hold your breath. It was my breathing & music technique that I had practiced so much that saved me from passing out and I was able to stay in control of my emotions in spite of being in pain. When anger and fear come into play, it escalates pain a lot. I also knew that my emotional visceral reaction to pain was learned in my past experiences, and that it was up to me to "unlearn" that response.

The day I had spine surgery, they gave me some pain pills afterward in the hospital and it just nauseated me, and didn't take all the pain away anyway. I didn't think the pain was that bad, so I didn't take any more and I found I could manage just fine even though I had some pain. It wasn't horrible, and I knew that it was healing pain or "Good pain" and that I was on the mend.

It would be good if you could get a counselor involved with helping you.... someone you can talk to in person to help re-frame how you are thinking about all of this. I would not let anyone do any physical manipulations or exercises with you. At this point, you need to wait to see the surgeon and to follow advice until then. I'm sorry, I don't have any answers other than telling you what worked for me, and believe me, I had to come a very long way to unravel my fears of pain that had been life long, but I did, and it changed my life.

If you really want this, keep working at it. You may not notice huge changes at first because you are focusing on the pain and not the pleasant things to distract yourself. You have to address whatever belief you have about this pain and your injuries to get past this, and that is where a counselor can help. I had to do that too because my spine problem was caused by someone else in a traffic accident. If I had carried a lot of anger around about that, it would affect me too. You have to forgive to get past the anger and that is something to do because it will help you feel better.

Yes, I agree with you to avoid physiotherapy now. I do not know the source of your pain and what your outcome will be. I didn't know what my outcome would be either, and I just did the best I could to follow advice from the surgeon and physical therapist, and I believed that I would get better. There is real power in that.

REPLY
@bearmiller03

I checked the website for the myofasical and the closest one is an hour away. Not bad but worried about that drive right now. Do you know anything about Fasical Counerstrain? I looked that up and only one person is here in Kentucky. Just didn't know the difference.

Jump to this post

@bearmiller03 I had not heard of fascial counterstrain. There may be some overlap in technique, but I don't know how aggressive this is. If you do want to look for a John Barne's certified myofascial release practitioner, you can call Therapy on the Rocks and ask if there is anyone in your area. This is the practice where the therapists are trained, and not all pay for a listing on the MFR website.

https://therapyontherocks.net/

The good thong about MFR is it is gentle, and like kneading bread dough in slow motion. You apply a slight shearing push and just hold it and wait for the tissue to release which may take a few minutes. You don't want to be too aggressive because if the fascia gets torn with too much force, it just introduces more scar tissue and that causes more tightness and pressure.

REPLY
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