Doc recommends spinal fusion from T12 - S1.

I had a L4-L5 fusion a year ago and have recovered without much redtrichh to ions other than no excessive bending or lifting. Before surgery I got opinions from three neurosurgeons in different practices. The surgery you are contemplating will be very major and long recovery. I urge you to get multiple opinions before embarking on such a life changing surgery at your age and activity level. Good luck.

Thanks....yes, I am currently working with a neurosurgeon for a 2nd opinion and spoke with someone yesterday that had the surgery I am considering. It was sobering, and gives me pause.

I had a different level of spinal fusion - it is a terrible "recovery" - limited mobility/flexibility, pain persists from the fusion surgery and have inability to lie on back and sleep properly. There does not seem to be increasing healing, rather it just plateaus with ongoing symptoms that make life very unpleasant. Fusion should be considered with trepidation.

Thank you for sharing your experience. Much appreciate you taking the time to respond.

@sassytwo While I admire your determination to continue in your lifestyle and activities, your MRI report seems to be an indicator on what is to come in your future if you avoid surgery. It is telling you how fast things have changed since the last 8 years. Levo roto scoliosis means that your spine is twisting to the left and rotating centered at L2, and this has increased by 12 degrees in the last 8 years to 30 degrees. Looking forward, if this trend continues, the question is how much more will the spine rotate and what internal organs will be affected? Will this contribute to disability? Will it compromise lung function? Are there any other scoliosis curves developing in the thoracic spine to compensate for what is going in the lumbar spine? If the lungs don't move properly, it can trap phlegm and lead to repeated lung infections or pneumonia, and these are concerns that can represent a serious risk in an aging adult. I have had a bit of a problem with proper chest wall movement because I have thoracic outlet syndrome that was restricting one side of my ribcage. I have been working with a physical therapist who is doing myofascial release and getting the muscles around my chest wall to soften and allow my lungs to move better. Over time, we all develop patterns of body tightness. I also have asthma which complicates things, so I worry about lung function and the risks of any type of respiratory infection. I imagine with scoliosis , that can create some unusual tightness patterns.

Have you worked with a physical therapist to try to improve some of the effects of the scoliosis?

From your MRI report, since 2015 after the microdiscectomy, this level has grown bone spurs forming a ridge that is causing stenosis at the nerve roots on the right side. and you also have left nerve root stenosis at L4/5 and L5/S1. The stenosis in the central canal at L3/L4 is also a concern for spinal cord compression and the note says it has progressed.

I presume this progression is in relationship to 2015 when you had the microdiscetomy.

I can imagine how the activities of riding bikes, working as a massage therapist and having to lean over, and twisting to play golf would be activities that would be hard on you physically in this condition. With the spine as a shock absorber to the body, any activity that has a pounding impact like running, hitting bumps on a bike, etc, would be hard on the spine. If you have a multilevel lumbar fusion, I suspect that your doctors would likely advise you not to continue doing activities that jar the spine because it would transfer the forces to the levels above the fused levels. I am a spine surgery patient with a cervical fusion, and I don't want to do anything to jar my spine. I do have a horse that I ride, but he doesn't trot because he is gaited, so that is just a smooth fast walk, and that is all I really do, just walk which is good exercise for core strength to support my spine.

I know this is a hard choice, and getting several different surgical options would be a good idea since this is a very complex problem. A spine deformity expert with experience with scoliosis experience is a good choice for a consult. My spine surgeon, Jeremy Fogelson, at Mayo is a spine deformity expert. There are artificial discs for lumbar spine, but they may be limited to single level replacements. You'll have to ask your surgeons if any are approved for multilevel problems or for a level next to a fusion or scoliosis involvement. This may be why surgeons are recommending a fusion of the entire lumbar area. The scoliosis complicates things too, and perhaps that may indicate a fusion. Surgeons cannot promise to cure pain or that you will be pain free after surgery. Scar tissue can cause pain and lead to body tightness. This can be addressed by myofascial release therapy. One question that comes to my mind is about your prior scar tissue from the microdiscetomy... could that be causing tightness that increases pressure on the spine and influences the scoliosis rotation? It may be worth it to consider if myofascial release could help you. It won't cure the damage that is already there, but it can reduce the extra forces of pressure from tight fascia that are pulling on your body.

Ask the surgeons the difficult questions about what your future abilities may be with their recommended surgery and what would like happen without it. There is a lot to consider. Get as many opinions as you need because you cannot undo a surgery once it is done. Choose your surgeon carefully. Find the very best that you can. They are not all equally skilled and it matters in the outcome from surgery.

Your thoughts?

Jennifer

Hi Jennifer,
Wow...what a thoughtful and thorough reply -- very much appreciated. Interesting, as my 2nd opinion neuro is doing more xrays and wondering, I think, or is trying to determine, if we can do something to help with the scoliosis. I go back on the 20th.

My Dermo PA recommended a doctor, she says is the doctor the surgeons go when they have back issues. So far they have not returned my call.

I live in Washington DC metro area, but very familiar with Mayo Clinic from my time in the midwest. It was Mayo trained doctors that put me back together after a head on collision in 2001 so I will look into your surgeon.

I try and remind myself that I have had the blessing of 20 plus years post accident as I face this new challenge.

Very familiar with myofacial release and my PT's recommended a therapist that worked only in myofacial work, post above mentioned accident. This therapy was very influential in my becoming a massage therapist. Most people do not realize that all PT's are trained in this modality.

I am happy you are finding some relief from this work and after reading your comments I am placing a call to a talented massage therapist that has his PHD and specializes in mobility and nerve flossing etc. in Oklahoma.

I too worry about additional scar tissue after the fusion. I cannot self massage my back very easily and the less time that transpires post surgery, the better the results for reducing this. Too bad insurance does not cover this unless you see a PT.

If you don't mind I would like to follow up with at a future date -- you seem to have a great understanding of the spine etc. Thank you again for your time to provide support as I figure this out for myself!!
Tamra

@sassytwo Tamra, if you type the @ symbol in front of my name, I'll get notified of your response. I'm glad you know about myofascial release therapy. It has helped me a lot. Yes, please do follow up and I would be happy to discuss with you after you consult your doctors. I spent a lot of time watching surgeons in videos from spine conferences and reading medical literature before I had my spine surgery. I have a biology degree, so I could understand a lot, and I looked up what I didn't know, and that is how I found my own correct diagnosis that 5 local surgeons missed. That is how I came to Mayo, because I found a surgeon who understood my symptoms there. The medical literature described this as a rare presentation and surgeons still miss the connection to cases similar to mine. Basically, the spinal cord compression in my neck was generating pain all over my body that would change location when my body position changed, pain and weakness in my arms and legs, uneven gait and difficulty emptying my bladder. It didn't follow the predictable maps of compression at nerve roots. My surgeon was excellent and he gave me back the coordination in my arms. I am an artist, and to express my gratitude, I painted his portrait. He is a spinal deformity expert who is often an invited instructor at spine scoliosis conferences and teaches in the Mayo neurosurgery program. Here are a couple links.
My story:
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/

@sassytwo and @jenniferhunter I am in an almost identical situation as you. I was amazed at the similarity. I am 73, male, had L5 S1 fusion 18 months ago, successful, and I resumed normal activity after. Now I am facing L5-T11 multi level fusion. Can't remain standing more than 15 minutes, at most. Like you, pain goes away when sitting. My surgeon is said to be among the best in the area, but will seek out 2nd opinion. Since surgery will not be until February, I am returning to my pain management doctor for epidural injection which has helped me in the past, to get some relief in the interim. Insurance co also wants me to do 6 wks PT, which I think is a waste of time. If I could just get epidurals every few months, I could live with it, but insurance companies limit to no more than 3 per year, and it's always an unknown how long relief will last after each shot. My wife says all this would do is delay the inevitable (surgery), making recovery more difficult as I age further. For other professionals viewing this post, here are some extractions from top of my most recent MRI:
1. Left paracentral disc extrusion at L1-2 demonstrating superior migration severely effacing the left lateral recess.
2. Right paracentral disc extrusion at L1-2 demonstrating inferior migration contributing to moderate spinal canal stenosis. Concomitant disc bulge, facet arthropathy and thickening of the ligamentum flavum. Moderate left neural foraminal narrowing is present as well.
3. Right foraminal disc extrusion at L3-4 superimposed on a posterior disc osteophyte complex resulting in severe right foraminal narrowing. Moderate left neural foraminal narrowing present.
4. Severe bilateral neural foraminal narrowing at L4-5.
5. Moderate right neural foraminal narrowing at L5-S1.'
6. Severe left and moderate right Neural foraminal narrowing at L2-3.
Although I am not a doctor, I can at least glean from this top summary that there appears to be issues at each of the L levels. I feel like if I I knew about the potential for further deterioration after my first surgery, I would not have reengaged in "all back to normal activity" in the absence of pain.

My friend finds relief from epidurals and gabapentin. Unfortunately, I could not tolerate the gabapentin and the epidurals didn't give me much relief and the side effect of significant hair shedding and loss. I would try both as they work for some, but yes, your wife is correct. The best we can do is delay the inevitable I fear. Aging certainly is something to consider in the timing. I am tempted to adjust my lifestyle and kick the can down the road a bit longer, but months not years. I learn from everyone I talk with. Thanks for reaching out and sharing your story. Tamra

@sassytwo @jenniferhunter
Earlier in this thread I discussed my similarity to the @sassytwo case. I have had a significant change in my condition, and have seen two surgeons since then. My spine surgeon who did my L5-S1 19 months ago, now recommends an L5-T11 decompression and fusion to replace the original surgery. I sought out a second opinion from a well known and respected spine surgeon in our area, whom I shared my MRI with. He said "you don't want that surgery." He himself is 50 yrs old and has already had two back surgeries. He suggested I get back to my prior exercise and stretching routine, and lose some weight (I am slightly overweight but by no means obese). How could two surgeons have completely opposite recommendations? Are there approaches to surgery in the spine medical community that are that divergent? I could have been left in a quandary with these opposite recommendations, EXCEPT that, at about the same time, my pain was receding, and within the span of about 48 hours was easily down to a pain level of zero to 1. This was after about 8 weeks of pain (levels up to about a 7), with relief only when sitting down. I came to the conclusion that I would be a fool to subject myself to surgery with all its risks and possible complications at this point. Of course I know it could return at any time, and there is no guarantee on how long my relief will last. Had I not gotten the unexpected relief, no doubt I'd be going for a THIRD opinion. For all I know, maybe there is regular debate in neurological medical circles on when to pull the trigger on surgery.