Where can I go from here?

Posted by aprilbsikes @aprilbsikes, Oct 16, 2023

I'm struggling finding a doctor who will listen to my concerns intently. If you seen me, you wouldn't know how badly I hurt constantly. I'm only 32, but I grew up in a somewhat tragic situation. I have had multiple injuries that were never properly treated, and now I feel so alone. This whole lengthly process is wearing me down mentally and physically. I can't be me anymore. This pain has been a constant struggle since January 2023, which came from no particular rhyme or reason. I have S shaped scoliosis, bone spurs, bulging discs, thoracic radiculopathy, loss of cervical lordosis with kyphosis, straightening of lumbar lordosis, mid-thoracic scoliosis curvature measured at approximately 15 degrees to the right.

My pain is constant, unrelenting, and intense. Bending forward helps for a few seconds, but I cannot stay in this position for long. I have tried pain management without the use of narcotics. I had to two medial branch blocks, several trigger shot (dextrose) injections, chiropractic adjustments, 12 weeks of physical therapy, tens unit, lidocaine patches. Medications that have been prescribed for possible pain relief: Tizanidine, Mobic, Duloxetine, Naproxen, Methocarbamol, Vitamin D.

You name it, i have definitely tried it with my doctor's recommendation of course.

I have not been successful in finding a medical professional willing to dive into the clinical cause of my pain. Most have dismissed my pain, because "scoliosis does not cause pain." My pain is exactly where my thoracic scoliosis starts to curve around T6-T9, which feels warm to the touch, accompanied by visible swelling in the area.

Just recently I had an open MRI, which revealed multiple bone spurs in the same area my pain is coming from.

What is the best possible solution for my spine pain, when all conservative treatments have failed?

Surgery sounds invasive to some, but for me, I disagree.

I don't think living the rest of my life burdened by this excruciating pain is a choice anyone would want....

Interested in more discussions like this? Go to the Spine Health Support Group.

I am just posting sympathy. I have spinal fractures, scoliosis, radiculopathy/myopathy and bone spurs and am in a lot of pain. I have seen a PT for 10 months who is extraordinary with massage, while I sit up. The relief doesn't last but an hour of relief is good. I also do tai chi but as things get worse I have to modify it.

REPLY

There are minimally invasive procedures (surgeries). One would be to have the bone spurs removed. The doctor at this link does a free mri review. You might get several CDs of you MR images to send out.
It is difficult for individuals without pain to understand the intensity and the ramifications. You should not spend the rest of your life burdened by deep pain. Pain is very, very isolating.
If you haven't been seen by a university pain clinic, you might consider doing so.
I have only mild scoliosis. If someone told me scoliosis doesn't cause pain, I'd laugh before running away.
Your list of possible sources of pain is interesting. You need a thorough workup and then may need several minimally invasive procedures. You might choose the pain that is the worst to investigate first.
It sounds like you haven't tried radiofrequency of the medial branch nerves in the thoracic at the curve. Usually they do a lidocaine/steroid test to see if the facets are the source.
I think there will be relief for you, it's just finding it.
Wishing you luck.
https://www.bonati.com/conditions/bone-spurs/treatment/#:~:text=Resection%20of%20osteophytes%20is%20a,widening%20of%20the%20spinal%20canal.

REPLY
@gently

There are minimally invasive procedures (surgeries). One would be to have the bone spurs removed. The doctor at this link does a free mri review. You might get several CDs of you MR images to send out.
It is difficult for individuals without pain to understand the intensity and the ramifications. You should not spend the rest of your life burdened by deep pain. Pain is very, very isolating.
If you haven't been seen by a university pain clinic, you might consider doing so.
I have only mild scoliosis. If someone told me scoliosis doesn't cause pain, I'd laugh before running away.
Your list of possible sources of pain is interesting. You need a thorough workup and then may need several minimally invasive procedures. You might choose the pain that is the worst to investigate first.
It sounds like you haven't tried radiofrequency of the medial branch nerves in the thoracic at the curve. Usually they do a lidocaine/steroid test to see if the facets are the source.
I think there will be relief for you, it's just finding it.
Wishing you luck.
https://www.bonati.com/conditions/bone-spurs/treatment/#:~:text=Resection%20of%20osteophytes%20is%20a,widening%20of%20the%20spinal%20canal.

Jump to this post

Thank you, I made an appointment request with Bonati. I currently reside in Georgia, but I would travel anywhere for just a little relief at this point.

I believe you're right about being able to live pain free, it is so hard finding a doctor willing to investigate.

REPLY
@windyshores

I am just posting sympathy. I have spinal fractures, scoliosis, radiculopathy/myopathy and bone spurs and am in a lot of pain. I have seen a PT for 10 months who is extraordinary with massage, while I sit up. The relief doesn't last but an hour of relief is good. I also do tai chi but as things get worse I have to modify it.

Jump to this post

I am sorry you are hurting so badly too. I feel like I am a prisoner in my own body. I have not tried tai chi, but I will!

REPLY
@aprilbsikes

Thank you, I made an appointment request with Bonati. I currently reside in Georgia, but I would travel anywhere for just a little relief at this point.

I believe you're right about being able to live pain free, it is so hard finding a doctor willing to investigate.

Jump to this post

Bonati might give you an idea of what procedures would be helpful. He is really just part of the search. He's an easy, free beginning. I'm pretty sure he's not the one. But there are lots of them. I met a doctor at Stanford https://www.atlantafunctionalmedicine.com/about-us/meet-dr-board/ I mention her because she is in Georgia and because she was wonderful. I'd just been to a pain specialist with my Mom who said--I don't know what you expect me to do. I can't give you a new spine. Days later Dr Board looked at the same MRI and said--there is so much that we can do.
You have a 15 degree curvature, but with scoliosis we always have some torque. In the thoracic it can displace the ribs. It is more uncomfortable than painful. I could see a chiropractor every day. The adjustments don't last, but they do provide relief for me and they keep the curve from advancing which it does as we age. The chiropractors I see aren't scoliosis experts. But check out Clear Scoliosis.
You don't mention massage, but it can be helpful if you get someone to work the muscles close to the spine on the inside of the curve. The muscles on the outside are stretched and weak.
Orthopedists aren't so interested because the curve would have to be 50 degrees in an adult to consider scoliosis surgery. But they can remove bone spurs https://www.atlanticspinecenter.com/blog/v/spinal-bone-spur-removal-and-recovery-time-what-you-should-know/#:~:text=If%20after%206%20to%208,Liu%20says. I don't know anything about this physician but thought his webpage had a good description of the bone spur surgery.

REPLY

These are two websites you might wish to check out, as I believe both could help you...
erchonia.com for laser treatments reducing pain and inflammation
globalao.com to address issues in the upper cervical region of your spine. There are many of these doctors in Georgia. The entire spine is affected by this type of care.
So sorry to hear of your pain, and I do hope things will improve for you.

REPLY

Did you try Emory University in Georgia? Maybe look into them. Your pain sounds like nerve pain. Only thing that helps my nerve pain is Gabapentin. Wish you the best of luck in your search for a good neurologist.

REPLY

@aprilbsikes, welcome. Please note that I removed the imaging study from your post since it included personal identifying information. To protect your privacy, we recommend removing information such as your name, date of birth and patient number, etc before posting to a public site.

Have you considered getting a consultation with experts at Mayo Clinic in Jacksonville, Florida? If Mayo Clinic is an option for you, here is how to get started http://mayocl.in/1mtmR63

REPLY
@colleenyoung

@aprilbsikes, welcome. Please note that I removed the imaging study from your post since it included personal identifying information. To protect your privacy, we recommend removing information such as your name, date of birth and patient number, etc before posting to a public site.

Have you considered getting a consultation with experts at Mayo Clinic in Jacksonville, Florida? If Mayo Clinic is an option for you, here is how to get started http://mayocl.in/1mtmR63

Jump to this post

Thank you, I didn't realize my name was on the image. I do have a consult at the Mayo Clinic as of today. I'm hoping to get back to normal soon.

REPLY

I have had nerve pain since my spinal surgery earlier this year. I had 10 weeks of post-op physical therapy after which I continued to exercise on my own. I was making good progress until I strained my back causing me to have a setback. Within 24 hrs I my pain returned to where I had been months before. I got another script for pt but this time I thought I would try something different. Approximately 10 years earlier, my wife had gone to a physical therapist who practiced myofascial release. She had gotten wonderful results from it; a story she shares with anyone who she thinks can benefit. I decided that I was so frustrated from being in constant pain for over a year that I would seek out someone who practiced this therapy. (My wife's therapist not being available any longer.) I located a pt in my area who practices what is now called FCS (fascial counterstrain). Today I had my second visit and I can say that the results are nothing short of dramatic. At the end of the session my therapist told me that 1 or 2 more sessions should do it. I was flabbergasted. I've been to pt numerous times in my life over the last 40 years for different problems. Each time it was for anywhere from 6 weeks to 6 months.
I cannot say if this could be an answer for you but I certainly would research it and try to find a physical therapist in your locality who is trained in this therapy. Based upon my experience now, I might have tried this before I had surgery.

REPLY
Please sign in or register to post a reply.