I dont know what to do about my pain
This is probably a long one, but I've been having so many issues with my back and neck for literal years. I've done all the things...PT, injections, pain meds, massage, chiropractic care. I had a recent MRI of my entire spine showing:
Osteophytes and neural foraminal narrowing and decrease in diameter of the thecal sac at C3-4
Posterior disc bulge, slight facet arthrosis and neural foraminal narrowing at C4-5
Posterior disc bulge, slight facet arthrosis with osteophytes and annular fissures at C5-6
Posterior disc bulge with osteophytes at C6-7
Posterior osteophyte formation with slight narrowing of the left neural foramen at C7-T1
Posterior disc bulge at T3-4
Posterior disc bulge with small left paramedian disc protrusion (no cord impingement) at T4-5
Osteophyte complex with moderate right-sided anterior extradural defect upon thecal sac at T5-6
Left paramedian disc protrusion with small left paramedian disc protrusion (no cord impingement) at T6-7
Posterior disc bulge with posterior annular tear at L3-4
Posterior disc bulge with moderate facet arthrosis and slight bilateral neural foraminal narrowing at L4-5
I saw a neurosurgeon who at first said I needed surgery but after my EMG of the LE came back normal, he said he can't do anything for me and I should see a Rheumatologist come back to see him in a year. Should I seek a second opinion with an Orthopedic spinal doctor or another neurosurgeon. I can't walk or do basic daily activities without excruciating pain. I keep up with my PT exercises at home and I see my pain doctor every month. I'm just feeling so defeated. I'm only 37 years old and I can't enjoy life.
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@brittanylg Welcome to Connect. It's very easy for a surgeon to be dismissive. When you have a lot of unexplained pain or a long list of spinal structural issues, they may see you as a patient that may not have a good result from surgery, and they don't want to risk their reputation on a procedure that could fail. That doesn't mean that a procedure is risky; it means that they are not confident with their ability, knowledge or experience to know they can handle it well. No surgeon wants to fail. This surgeon does not seem interested in your problems. "Come back in a year" is not a good answer.
I think another opinion is an excellent idea. You will probably get a better opinion from a spine deformity specialist. My spine surgeon at Mayo is a neurosurgeon who also did an orthopedic spine deformity fellowship, the best of both worlds. Some surgeons will not operate on thoracic levels because that involves the lungs. Some will not operate on C3 or above because of risk of spinal cord damage at a high level could be life threatening if they made a mistake. You need a surgeon with a lot of experience with big surgeries. I don't know that you need a big surgery, but with so many levels with spine pathology, you need a surgeon who is not afraid of working there.
You are so young to have this much spine damage. Is this the result of injuries or accidents? Sometimes surgeons use artificial discs in younger people because fusing the spine locks you into a position where you can't move, but those choices are also limited by what other spine levels need fixing. A surgeon who does both artificial discs and fusions would be a good doctor to consult about this. Look at respected medical centers and their upper level surgeons. If there is a possibility of going to Mayo, that would be an excellent place. There are other good surgeons around the country, and there is usually a waiting list of a few months for an appointment, and you would be required to submit imaging before being accepted as a patient. My fusion was simple one level C5/C6.
Think about your future down the road. Will there be a wheelchair? This is why you need some good advice now from an excellent surgeon. Playing a waiting game is just going to waste your time while your spine condition worsens. The best time to fix it is before permanent damage occurs. It is a difficult choice because you are compromising function and movement capabilities that will be permanent changes. There may be a way to fix things in smaller steps, but you need to discuss this with an expert.
Let me know if I can be of further help to you.
Jennifer, does your excellent surgeon review reports sent by mail?
@gently Yes. First, you’ll need to make an appointment request and talk to the intake people who set up an account. Once you have done that, you’ll be able to send records and imaging for review attached to that patient account number. If you are offered an appointment, you would probably get a phone call.
I purchased a device called NeuroMD which is a wireless device similar to a TENS but works on muscles. There is positive research behind the product and a 60 day money back guarantee. I’ve been using it for about a 2 weeks and I’ve found it has decreased my back in general. I sat last evening for Thanksgiving dinner for 2.5 hours straight and my back didn’t hurt and that is amazing. The program that comes with it has exercise to do following your treatment and I’m sold. It’s not expensive and worth a try in my opinion. This is not quack science and their customer service is stellar.
I’m so sorry to hear of your pain. Have you been tested by a Rheumatologist for autoimmune or underlying conditions? I believe it was an excellent idea for your physician to make this request. If this is the case, any type of efforts to rehabilitate your spine will not take properly and negatively impact your healing process. I’ve had a 3 level cervical fusion & also show areas of the spine with severe disc degenerative disease. I’m 2 years post op and am working with a wonderful Rheumatologist in addressing post surgery muscular & joint pain issues. My Neurosurgeon required this prior to surgery. I’m grateful I was tested pre & post op for autoimmune diseases. The biggest culprit for me is osteoarthritis & DDD. Sending hugs and good thoughts to you.
What are you doing/taking for your DDD? Right now I am trying out the Sprint PNS system for severe lumbar pain. I had a double spinal fusion in 2022. My pain surgeon says nothing more can be done if this doesn't work. Because of my hardware, he says he can't do any other treatments. Good luck!
My heart goes out to you - my surgery was in October 2022. Surgery was successful as far as fusion, placement etc., however I am also dealing with pain associated with DDD/Osteoarthritis, myofascial and muscular pain. I’m taking Low Dose Naltrexone (LDN) and have found it to be effective & helpful so far. I’m also back in physical therapy with a specialist that is certified in the Schroth Method (Scoliosis patients) her focus is to provide me with postural alignment and endurance. I only have a mild curve in my thoracic and lumbar regions, but enough to feel a difference. Traditional exercises have been more than a challenge. I’ve always been extremely fit and active & this surgery has impacted my ability to maintain muscle tone to support the weaker bone structures. I’m feeling better and take no other medication. I empathize with your situation; it’s a difficult journey. I also have studied the writings of Dr. Sarno for the Mind/Body Syndrome. Do you suffer from other areas of your spine with DDD or osteoarthritis? My beloved Dad dealt with this - but didn’t seem to be in this type of pain.
Here is a reference regarding the use of LDN.
https://ldnresearchtrust.org/. Fortunately I don’t have any AI issues, however OA & DDD tends to have high levels of inflammation that overtime LDN can help with. Sending you the best of thoughts and healing wishes.
I was diagnosed with polyfibromyalgia rhematica in February. I weaned off prednisone over a month ago. I don't seem to have that pain anymore. I will definitely look into LDN. I googled it and it may work. The usual pain pills don't work for me. I take an occasional Tylenol Arthritis when the pain is really bad. It may take the edge off?? not really sure. Thank you so much for getting back to me!
Yes of course! It’s important we share experiences with one another. I also will not take pain meds & only take an occasional Tylenol Arthritis. However since the LDN I haven’t taken very few. It’s an interesting medication that is truly a commitment for some as it can take up to a year to determine the full effect. It’s only been 6 weeks for me; but like you I was excited after doing the research. She also has me taking turmeric twice daily. Keep me updated on your progress. It’s been a pleasure sharing experiences with you
I really appreciate your input. I only wish it worked faster.