Familiar with "TOPS" spine surgery?

Posted by libertyusa @libertyusa, Apr 18, 2025

It focuses on Stenosis and Spondylolesthesis which I have. I also have Scoliosis. I have a new Dr., well educated, who I do not think has
much surgery experience. But I am anxious to get going to fix
my problems. Have spent over a year on working on fixing my spine.
I am in the highest age category they will do (80). Am in good shape and basically very healthy.

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Profile picture for ou14mejc @ou14mejc

@sallylang I am in the process of scheduling the TOPS procedure. I'm struggling to find a surgeon that will accept Medicare, even though it is Medicare approved. Most surgeons are wanting cash. I have a patient advocate from Premia Spine, who makes the device, and she is equally frustrated.

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@ou14mejc
I am having a consultation about getting the TOPS but I have read, albeit on AI that it cannot work if you have osteoporosis. Which I do. I called premia spine to ask what they say but it's really hard to get an answer. They were supposed to call me back twice and they never have. I'll try again today.

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Profile picture for johnfm @johnfm

I had the L4-5 TOPS procedure done last March 31, 2025; here in Milwaukee. I woke up from the surgery pain free. It was very successful. Completely off Gabapentin immediately after weaning off of it. No rehab needed. 3 months to full recovery. I think it might be FDA approved since it is done with the clinical trials stage in the US.
****HOWEVER; it is not covered by Medicare at this time so I had to pay out of pocket for the hardware that was installed. Most private insurances follow Medicare guidelines, so I assume most other insurances are not covering it. The denial by Medicare has been appealed many times without success.
The only problem following surgery was that I developed significant burning pain in the buttocks, bilaterally 2 months post surgery. The burning pain only occurs when sitting on softer surfaces such as the recliner, car seat, and reading in bed. MRI showed a severe stenosis at the level above the surgery. The surgeon has offered to do a laminectomy but I prefer to not go under the knife again so soon. There has been little improvement after 2 injections; 2 rounds of PT, acupressure, and using a low dosage of Gabapentin. I am scheduled to see a different spine pain specialist next week for any ideas and discussion on any further approaches to resolve this issue, without surgery, if possible.

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@johnfm
That's too bad that you developed a new pain after the surgery but I hear that's common especially with fusion. Since your name is John I'm assuming you are male and therefore most likely you don't have osteoporosis. I have read that the tops device might not be safe if you have osteoporosis which I do. Of course it's not that safe to do fusion either with osteoporosis. But any information you have on that I would like to know and I hope you find someone who can help you with the burning pain.

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Profile picture for loriesco @loriesco

@brennankb55 I was in the same condition that you are and I had lumbar fusion and all the bells and whistles and it was 100% successful. Unfortunately, by the time I found my dream orthopedic surgeon. I had permanent damage on my flattened nerve root. As long as you have your Prince charming of an orthopedic surgeon I’d suggest going for what they recommend. My surgeon did all the revisions on the other surgeons bad work. I knew I was in good hands.

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@loriesco
How do you know when you have permanent nerve damage? I'm worried about that because I've had stenosis for 7 years and I did have a decompression surgery that only worked for 2 months literally. Now they say I need fusion there's one surgeon who is saying he thinks I could have the tops procedure. Where did you have your surgery done if I might ask since you feel very positive about your surgeon? Thank you and I definitely would like to know how the doctors can tell if you have permanent nerve damage. But your surgery helped I'm assuming?

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Profile picture for gravity3 @gravity3

Yes I do Annie. I was diagnosed about 9 years ago. Like so many others I was given fosomax/alendronate for the maximum of 5 years. Then forteo for 2 years. After that 1 year of Evenity . I have had 1 shot of Prolia and will do 1 more. I July I am seeing another endocrinologist to see if he will recommend a short/light infusion of reclast then another bone builder like tymlos, forteo or evenity. I don't feel ready at 77 to stay on Prolia for the rest of my life. I'd like to see if he thinks this might work for me. My sequence of drugs is not something I would repeat if I had had more knowledge. In retrospect I would have started with a a bone builder rather than a bisphosphonate which can impede the work of bone builders. I also started bhrt about 8 months ago but not because I thought it would have much positive impact on my bones. If it helps great but I do not believe that it will mean I don't have to continue with osteoporosis meds. I have not really had side effects with any med. Any aches I consider to be the medication doing its job. Good luck to you.

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@gravity3
I had severe osteoporosis and had 18 months of Tymlos. My scan showed I was at osteopenia.
My endocrinologist now has me on Evenity for a year. Prior to Tymlos, the surgeons would not touch me due to the osteoporosis. Now I am looking at extensive spinal surgery,

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Profile picture for annie1 @annie1

@ou14mejc
I am having a consultation about getting the TOPS but I have read, albeit on AI that it cannot work if you have osteoporosis. Which I do. I called premia spine to ask what they say but it's really hard to get an answer. They were supposed to call me back twice and they never have. I'll try again today.

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@annie1 I have an advocate from Premia that has helped me. From what I have read, the procedure is likely to fail with osteoporosis due to the screws not holding....at least that is my understanding. I did have osteoporosis, but I have been on Forteo for two years and my spine has greatly improved. Hope you get some answers soon.

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Profile picture for day0718 @day0718

@gravity3
I had severe osteoporosis and had 18 months of Tymlos. My scan showed I was at osteopenia.
My endocrinologist now has me on Evenity for a year. Prior to Tymlos, the surgeons would not touch me due to the osteoporosis. Now I am looking at extensive spinal surgery,

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@day0718 Same here....I've been on Forteo for two years and moved from osteoporosis to osteopenia. I am now trying to get approved for a year of Evenity to improve my hips. I put off the medications for years due to the side effects. I'm glad I finally gave in or I could not get my back fixed. I have a consultation in June for the TOPS and have my fingers crossed!! Good luck with your surgery.

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Profile picture for annie1 @annie1

@loriesco
How do you know when you have permanent nerve damage? I'm worried about that because I've had stenosis for 7 years and I did have a decompression surgery that only worked for 2 months literally. Now they say I need fusion there's one surgeon who is saying he thinks I could have the tops procedure. Where did you have your surgery done if I might ask since you feel very positive about your surgeon? Thank you and I definitely would like to know how the doctors can tell if you have permanent nerve damage. But your surgery helped I'm assuming?

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@annie1 One of the ways you can tell if you have permanent damage in lumbar spine is when you lose control of your bowels and bladder. I'm sure there are other signs as well, but my doctors always ask me if it's a problem when I have appointments. I understand if that happens, you should get medical help immediately.

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Hey,

I am a former principal and special education teacher that works with students that can become violent/aggressive. Over the 22 years of working with this population I have had 7 surgeries with 2 of them being fusions. 15 months ago a student attached my secretary and I threw her our of the way and took the full force of the attach from a large 18 year old. He has trashed the last 3 of my L vertebrae. I have had about 30+ injections in 12 months with little relief. I don’t take pain meds because they don't help and they make me sick. I heard about the TOPS procedure and would love anyone's feedback. This has affected my day to day life. It makes it difficult to take care of my wife who is in heart/kidney failure.

Bussel

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Profile picture for bussel @bussel

Hey,

I am a former principal and special education teacher that works with students that can become violent/aggressive. Over the 22 years of working with this population I have had 7 surgeries with 2 of them being fusions. 15 months ago a student attached my secretary and I threw her our of the way and took the full force of the attach from a large 18 year old. He has trashed the last 3 of my L vertebrae. I have had about 30+ injections in 12 months with little relief. I don’t take pain meds because they don't help and they make me sick. I heard about the TOPS procedure and would love anyone's feedback. This has affected my day to day life. It makes it difficult to take care of my wife who is in heart/kidney failure.

Bussel

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Sorry you are having such a rough time. I have an appointment scheduled tomorrow with a TOPS surgeon, so I'm anxious to hear what he says. The TOPS surgery is very specific as to who actually qualifies. Have you researched the qualifications to see if you are a candidate? I hope that you are because the recovery seems to be much easier. Good luck in finding a procedure that works for you.

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Profile picture for bussel @bussel

Hey,

I am a former principal and special education teacher that works with students that can become violent/aggressive. Over the 22 years of working with this population I have had 7 surgeries with 2 of them being fusions. 15 months ago a student attached my secretary and I threw her our of the way and took the full force of the attach from a large 18 year old. He has trashed the last 3 of my L vertebrae. I have had about 30+ injections in 12 months with little relief. I don’t take pain meds because they don't help and they make me sick. I heard about the TOPS procedure and would love anyone's feedback. This has affected my day to day life. It makes it difficult to take care of my wife who is in heart/kidney failure.

Bussel

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Hi @bussel - welcome to Mayo Clinic Connect. The job you've had sounds extremely admirable. I'm terribly sorry to hear you've also gotten injured working with this population over time.

I'm also sorry to hear about your wife's health.

I wanted to let you know I moved your post here so that you could chat with others already talking about TOPS surgery and get their input on this procedure. Please meet @ou14mejc @day0718 @annie1 libertyusa @libertyusa and others here.

You mentioned your vertebrae injury has affected your day to day life and taking care of your wife. What motions or positions are you finding especially difficult?

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