Doc recommends spinal fusion from T12 - S1.

That is so sad -- very sorry to learn that your fusion was not successful or worse, made things worse, Deb. This is my fear, thank you for sharing your story.

While, I have great respect for my surgeon and he has not said I should have this surgery, just that he thinks if or when I move forward with surgery, to do less fusion will land me back for additional fusion and it is a difficult recovery.

I have not had the fusion and I am meeting with 2nd and 3rd opinion doctors.

I meet with one at noon today, virtually. I now have a 2nd option of entering the body through the front and placing a cage from I think L4 to S1. This will involve 2 surgeons, but less fusion and somewhat easier recovery.

This assumes that the majority of my pain is from L4/5 or S1 and not from my scoliosis, which I appear to compensate well with and may not need to correct. Time will tell.

Considering as I was not able to maneuver the Atlanta airport and Trade show without significant pain last week. The kicker for me is that I am pain free when I lay down or sit for a while. Your story gives me pause.

I just read about a scrambler for pain. I know nothing about it, but throw it out there to look into. I hope you find some relief soon. Have you consulted another surgeon?
T

Hi-
I'm glad I stumbled across the group! If I can help anyone with sharing what I'm going through, then that's answered prayers!!!

I realize that I forgot to mention the muscle damage in my spine, too.
I'm happy to hear you are going for other opinions, too. A year or so prior to my surgery two other doctors told me they wouldn't touch my spine, as I needed at least a six-vertebrae fusion. I had a MRI of my spine, which showed I had a tumor on my S1 joint, so was sent to a neurosurgeon (my surgeon), who also does brain and spine surgeries for cancer. The doctor did not think my tumor was cancerous, but did state he coukd help me with my scoliosis and my back pain. I was so excited to have found a doctor that could help me, so after he spoke to the Hospital Board about my case, we opted for the surgery.
I'm waiting to hear what the other neurosurgeons had to say to my doctor, and then may go get another opinion.
I hope you can make the right decision for your own health and well-being!!🙏
Thank you for the suggestion on the scrambler too. I'll look into it.

Deb🙂

I have had many warnings over the decades to not do what you had done by several doctors along the way. One said fusions resulted in more pain than they were supposed to prevent. I haven't had steroids but I won't due to serious side effects. I have been to several chiropractors who have helped. Rheumatologist no longer will see me (and others) with fibromyalgia. I hope you are able to improve your circumstances.

I had a second spinal fusion (the first was S1-L4 in 2015) this past June (June 1, 2023) from S1-T11. I was in pain constantly that was severe enough that Oxycodone 5 times a day was no longer helping. The surgery was a success despite having had unrelated complications the day after the fusion.
Now I just feel soreness in the muscles on both sides of the fusion.
I didn't feel this initially and I realized that I felt so good that I wasn't careful how I was bending and I had stopped using my long handled reachers. I'm going to be more careful and hopefully the soreness will subside. Still soreness is better than pain.

@djmeis Hello, Deb. I wanted to welcome you since you are a new member here. What I'm wondering is if your body just doesn't like the materials and metals in your hardware? It's hard to know if that may be a source of your pain, and I do know that I have had pain from titanium plates on my ankle after a fracture. I had those plates removed which solved the problem. That may not be realistic for you to really consider removing spine hardware.

Another option may be looking to the field on environmental medicine for treatment. Immune reactions to surgical implants is a real problem for some patients.

Here is website for the practice that began this medical specialty and you can find some information about treatment.
https://www.ehcd.com/
I have seen an environmental medicine doctor for a number of years. You may be able to find another similar provider. This site has a provider search button in the top right. https://www.aaemonline.org/

Another suggestion would be myofascial release therapy to try to loosen surgical scar tissue which can also be a source of pain. Here is our discussion about MFR.

Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
I hope some of this can bring you some hope.
Jennifer

Thank you for your reply Jennifer, and for the information you provided! I will definitely look into all of this.
I did have allergy testing done to see if I was allergic to any of the metals or cement they would have used in my spine hardware, which all came back normal.
I do believe my body is rejecting all of the hardware. I have continually reported to my doctor doctors and physical therapists t1hat my muscles feel like they're tearing over and over again and every time I move. I had some blood work done which did show there's muscle damage.
Unfortunately, my surgeon and two of his colleagues from California state I should not have the hardware removed.
I'm going next week for a second opinion on this matter.

Thank you again, for your assistance!!! I really appreciate it!!

Deb Meissner

@djmeis Hi Deb, I also had allergy testing for metals before my spine cervical fusion and I was surprised that nothing was reported. I had problems with pierced earrings and everything I tried cause lots of problems. I wore them for years and then it changed. I was able to have a one level C5/C6 fusion without hardware and I stayed in a neck brace until it fused.

When I broke my ankle and got the titanium plates on my ankle, at first it was OK, but 6 months later, I was getting hives all over my body, worsening asthma, pigment forming on the skin over the plates, throbbing pains, and I had to stay on antihistamines all the time. I had the plates removed a year and a half after they had been placed when fixing the fracture. I haven't been retested for metals, and it doesn't matter now. You can develop allergies after exposure to something for a period of time.

The lab that did my metal allergy testing is https://www.orthopedicanalysis.com/

You are kind of in a tough spot. It seems like your doctors think you need the support from the hardware. I can understand their concern as there are patients with failed back surgeries that don't fuse.

I hop you find a good solution for the pain.

Jennifer

Thank you, again, and best-of-healrh wishes being sent your way!!

Deb

Can anyone advise if MFR would possibly be an option for someone with severe scoliosis? I posted about my SIL around here previously. She had one surgery about 18 years ago. Since then her curve has increased dramatically. I can’t find any photo online that depicts a curve like hers.

She is in severe pain and has gotten 2nd, 3rd, 4th, …………many opinions. They all recommended surgery and she’s too scared. I’m not sure if it’s too late for surgery now. They’ve recommended surgery for years.

She just asked me today about a surgery where they cut open the spine from top to bottom and staple it. Is that a fusion? I referred her to Mayo. She’s consulted with all major neurosurgeons in NC. I feel for her. She’s a great person and has really suffered. Her height is substantially reduced due to the curve. She’s extremely small.

Please relocate my post, if I’m not in the right place. Thank you.

@celia16 I have done a lot of myofascial release for several years. It helps problems that are caused by overly tight fascia and scar tissue and I have benefited from it. It doesn't fix scoliosis, but I have known patients with scoliosis who felt better doing this. I am a cervical spine surgery patient.

Usually scoliosis surgery is an instrumented fusion where rods are placed on each side of the spine and screwed to the vertebrae. It can be a big surgery and long recovery time. Some of the issues with severe scoliosis can be pressure on the heart or lungs that interferes with functions. My surgeon at Mayo is a deformity expert and does scoliosis surgeries.

You may find this discussion helpful.

Spine Health - "Severe scoliosis"
https://connect.mayoclinic.org/discussion/severe-scoliosis-1/
I think speaking with a counselor may help in addressing the fear. I know this is a big surgery and it is hard to confront fear. I went through that too even though my surgery was a single level fusion.

Jennifer