Lumbar fusion: Another reprieve or am I just delaying the inevitable.

@dadcue I know this is a tough decision, and if you are totally onboard and ready to do surgery, that will help you get through it emotionally in your post op recovery. I believe that patients can influence their own healing and outcome at least partly if they believe in the value of the procedure and understand how it will help. Of course having an excellent surgeon is also paramount.

Some things you may want to discuss with the surgeon would be about how your symptoms of pain, now less over the years are different from your symptoms of weakness and numbness in your legs. If that were me, I would be asking how will I know if permanent nerve damage is happening and if that will affect the ability to walk or balance in the future. That is hard to predict when the window of opportunity for nerve decompression closes, and after which when you do the surgery, you don't get improvement in muscle strength and coordination. Muscles atrophy when the nerves serving them start to die, and it's hard to know when this is gong to happen. Some patients who wait too long have permanent damage and nerve pain after spine surgery.

This is your time to find out everything you need to know to make an informed choice. You don't know if you will go back to severe pain again. The pain nerves and motor function nerves are different.

This site may be a benefit to you. I have the book Dr. Handscom wrote by the same title and it's very good.
https://backincontrol.com/
It was created by a spine surgeon who himself became a spine surgery patient. Fear and the fear of pain, can be a huge part of back problems, and he can talk you through some ways to think about it. You have to come to terms with that in order to make an informed decision. In the end it is your decision, and I am glad that your surgeon is not pressuring you. That would be a huge red flag to me, and I would run away very fast if a surgeon was pressuring me (and I did).

My surgery was for my neck, and I knew from my experience that it would help me because I paid attention as those symptoms materialized and I knew how to turn them on and off with the position on my neck at least in the beginning before the bones spurs pressing harder into my spinal cord got bigger. I also had a great physical therapist who taught me a lot. She was working to keep my muscles supple and kept working out the kinks, and that actually made it better for the surgeon when he did his job. She did myofascial release, and I think that Dr. Handscom mentions that in his book.

MFR is Myofascial Release Therapy. Here is a discussion on MFR that you might find helpful.

Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

If you do decide on surgery, you need the best surgeon you can find. With lumbar surgery, often there are rods screwed into the spine called pedicle screws, and those need to be placed at exactly the right angle and depth. If they are not, they can pull out because of the pressure from most of your body weight that is bearing down on your spinal column. You can always ask for the personal success rates for your particular surgeon for a specific procedure. That does give you something to compare when you are looking for the right one.

If you don't do surgery, discs can collapse and cause the bone to fuse around them. That may not be in a desirable or best alignment, so that is also something to discuss about what if you don't do surgery? Your next MRI may not be a big change from prior tests, but it also may be, so be prepared for that news when you do the tests. Surgery is always a compromise, and you're right, it can't be undone. You may want to explore other options such as artificial disc replacement. Fusion and ADR both have risks and not doing surgery also has risks too. It is a tough decision.

You don’t mention your age and from your description it sounds like this has been going on for a while. The longer you deal with chronic debilitating pain the greater the negative effect on your body, in my opinion. I’m 70 and has fusion L4-S2 in 1988 with stainless steel plates so no MRI for me. I was having increased issues in 2016 and saw a neurosurgeon who told me to either lose weight and take up yoga or I’d need to replace my bars with titanium cages. After having suffered for 5 years on SSD after my surgery I said no thanks and lost the weight and took up yoga. I’d only have that surgery again if it was absolutely necessary and my joy in life was heading south. You’ve got a tough decision and it’s harder to heal when older.

@jenatsky I appreciate your thoughts on this.

@jenniferhunter I appreciate your comments too!

Having "extensive" surgery on my lumbar spine has been hanging over me for 6 years. I was 62 years old at the time and I was still recovering from bilateral knee replacements and microvascular decompression surgery (MVD) for trigeminal neuralgia. Things were going reasonably well when I suddenly developed radicular leg pain with acute onset foot drop. I was dragging my right leg and I was in extreme pain.

An emergency MRI was done. The MRI showed severe spinal stenosis along with multi level disc bulging, facet hypertrophy and other problems.

Due to 12 years of moderately high dose prednisone to treat PMR and inflammatory arthritis, I wasn't the best candidate for a multi level lumbar fusion. Fortunately, a large dose of prednisone relieved the pain but all the damage remained. I got two opinions about going ahead with surgery but the consensus was that pain should be the determining factor about whether or not to actually do the surgery.

I'm probably a better surgical candidate than I was 6 years ago. I'm being treated with a biologic that works and I have been off prednisone for the past 3 years. My pain level is still tolerable but I still have considerable nerve damage. My present neurosurgeon thinks I'm downplaying the pain. I have chronic foot drop and some other muscle groups in my legs have no innervation. My paraspinal muscles have atrophied so that is the latest concern.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8479522/#:~:text=The%20muscles%20surrounding%20and%20attaching,the%20spine%20and%20whole%20body.
I admit to being fearful about doing surgery but mostly I think surgery won't do any good. My knee replacement surgeries were complicated by extensive heterotopic ossification and I was told that I should never have another surgery.

My current neurosurgeon thinks just a L4-5 fusion will do the most good. I'm tempted to do a single level fusion but not my whole lumbar spine. I will be getting another bone scan, x-rays, EMG and MRI in preparation for a L4-5 fusion. If things are progressively worse, I will probably do the L4-5 fusion sometime this year or next.

Just joined this board and am interested in the responses you get because I am in the same boat. I see a local neurosurgeon tomorrow for his opinion and have paid for a second opinion from Barrows in Phoenix and they will respond in a few weeks.

Thank you for sharing. Would you please elaborate on the biologic pain treatment you've received?

My neurosurgeon phrased it this way:

"His L1-2 disc is not normal and I can certainly see how some surgeons might want to "treat it all" except that would be a much much bigger operation and I truly believe it is L4-5 that is the symptomatic level. A more limited procedure may do as much good as a very big one. I think L1-2 is far enough away from L4-5 so as not to be immediately impacted by a fusion below (that is, it is not a directly transitional level above or below L4-5). I'm sure if you polled several surgeons, you might get many answers."

My entire lumbar spine isn't that "normal." I have had inflammation problems for many years. I think my autoimmune disorder was regularly attacking my lumbar spine. Prednisone relieved the pain but didn't prevent the damage that was done. Treating inflammation after the fact didn't do much good.

I now take a biologic call Actemra (tocilizumab). It was offered to me because it might actually put a stop the autoimmune inflammation and the recurrent flares.

I think Actemra worked because I don't seem to have the flares that I used to. Also, I don't seem to have the back pain like I used to. See the link below which is a theoretical explanation for how Actemra works for RA. I was given Actemra mostly for PMR but I also have a type of inflammatory arthritis.
https://www.researchgate.net/figure/Mechanism-of-action-of-tocilizumab-in-RA-bathtub-theory-Notes-The-mechanism-of_fig2_221967570
My rheumatologist thinks I'm better being off prednisone and on Actemra for many reasons.

I don't think my back problem is solved. I'm just hoping the deterioration of my spine won't happen as quickly. The wear and tear of aging will still happen but I'm hoping the abnormal inflammation has stopped.

Six years ago, I told the neurosurgeon that I didn't know that I had a bad back. I thought prednisone was working just fine.

My primary care doctor made an interesting comment to me the last time I saw her. She wanted to know what I was taking for back pain. When I told her that I was just taking Actemra she said that it wasn't a pain medication. I guess she meant it was an anti-inflammation biologic. I just said no more inflammation ... no more pain.

@razmus Welcome! Connect is a great place to compare notes with other patients and share valuable information. I'm glad you're here! I am a Mayo cervical spine surgery patient.

Barrow Neurological is a well respected spine center. If you need other opinions, you also have the Mayo Phoenix campus nearby as well.

Are you seeking care for a lumbar spine issue?

Thanks for the welcome, Jennifer. I have successfully navigated the Barrows system and easily uploaded all of my records including images. However, the Mayo system is not quite as streamlined ; after speaking with Holly in Central appts I think I have now supplied the needed information. To put in mildly, yes, I have multiple lumbar spinal issues that are the result of 2 pregnancies and decades of lifting, backpacking, mountaineering, skiing, running, etc. Those hobbies have allowed me to be very healthy except I have severe degenerative arthritis-good old wear and tear. I have 2 knee replacements as well as a hip replacement: all doing well. Wouldn't it be great if we could get a spine replacement? At 77 years of age I'm trying to avoid spinal surgery and my spine orthopedist in Yuma indicated that I might be able to delay surgery by continuing to do water aerobics, yoga, walking and continue to work on my core. I'm looking for some other opinions on conservative treatment and a minimalist approach. I'm looking forward (or not) from hearing from Mayo. Fran

Is a DEXA scan an indicator for a successful lumbar fusion?

I recall several years ago a surgeon was concerned about how much "good bone" I had left in my lumbar spine. The concern was about having osteoporosis caused by long term prednisone use. I had a repeat DEXA scan with the following results. I know a T-score in the range of +1 to -1 is considered "normal."

FINDINGS:
L1 not included in the analysis due >1.0 difference in T-score numerical value with the adjacent vertebra.

Measurements of the lumbar spine at L2-L4 vertebral bodies reveal density measurements of 1.581 g/cm2, representing 142% of the young adult population group, corresponding to a young adult T-score of 4.2.

In the hips, lowest density in the left femoral neck. Density measurements in the Left Femoral Neck: 1.003 g/cm2, representing 108% of the young adult population group, and corresponding to a young adult T-score of Left Femoral Neck: 0.5.

Impression:
1. Normal bone density on the bilateral hips. 2. Due to extensive degenerative changes in the lumbar spine, the spine is invalid for assessment for osteopenia. On the follow-up DEXA scan, consider including the forearm.