Excruciating chronic left side neck pain plus lumbar issues

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.

@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?

@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/

@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.

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

@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?

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.

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

@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.

@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.