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Doc recommends spinal fusion from T12 - S1.
Spine Health | Last Active: 1 hour ago | Replies (96)Comment receiving replies
Hi-
I hope you are doing well today!!
I'm new to the group, and
not sure if you opted for the surgery or not, but wanted to share my story.
In February of 2023, I underwent a scoliosis straightening and fusion from S1 to T8, with horrible end results!!
The pain is worse than prior to the surgery, and now in a broader area! I feel all my hardware, from my pelvis, all the way up to my thoracic area, and also have stomach and bladder issues, as a result of the surgery. I'm in constant pain, and spend about 90% of my day laying down on a heating pad, as I cannot sit, stand or walk long at all.
My surgeon has exhausted all of his recommended options (PT, chiropractor, steroid injections into the back muscles, rheumatologist), and is now reaching out to two neurosurgeons in California, to see if they have run into any patients with similar symptoms as mine.
At this point, I want all the hardware removed, which my surgeon states he's never done before. I'm only 60 years old and the results from the surgery has drastically reduced my day-to-day routine and quality of life.
If only I could go back to before the surgery, I would not have had the fusion performed!!
Deb
Replies to "Hi- I hope you are doing well today!! I'm new to the group, and not sure..."
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.
@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
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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