New To Forum - Revision needed?

[JScoli91]

Hi all, I am new to the forum and I am in need of advice/guidance.

I was diagnosed with scoliosis when I was 13 with curves at the time measuring as follows:
Cervical: 35
Thoracic: 45
Lumbar: 25

I had my original fusion (T2-T12) with Harrington rods and fusion through all vertebrae done in 2003, 16 years ago. This corrected my curves to:
Cervical: 8
Thoracic: 14
Lumbar: 20

I recently discovered a report from the original hospital in 2008 where it was performed from a follow up visit where I had been complaining of low back pain. It mentions an x-ray that was taken that documented the lumbar curve at 28 degrees. After this appointment I hadn't had any documentation or imaging done of my spine since this past year.

After having 2 kids in 2017 and 2019, I have had continued and worsening sciatica and SI joint pain. I have been trying epidural steroid injections and physical therapy to find no alleviation in pain. I have also noticed that my shoulder height difference, waist height difference and rib hump have all gotten worse, darn near where they were before my first fusion 16 years ago.

My orthopedic surgeon had ordered some CTs and MRIs of my thoracic and lumbar spine to find not only growing curvatures but also facet arthritis throughout my lumbar vertebrae, narrowing of the L4-L5 foramen, herniated discs at L4-L5 and L5-S1, bone-on-bone articulation at L5-S1, and degenerative arthritis in my left and right SI joints. My thoracic curve is now measured at 31 degrees from a supine CT even though I have the harrington rods still in, how is this possible?!? My lumbar curve is now measured at 35, still unfused.

My surgeon has presented me with 2 options as follows:

1. The band-aid approach: Fuse only L5-S1, leaving L1-L4 un-fused between the old fusion and the new fusion. This would alleviate a majority of the pain and still leave me with some mobility and flexibility in my lumbar spine BUT would increase the strain/wear and tear on the un-fused segments between the two fusions. He is projecting that if we went with this approach that I would need the full lumbar fusion within 5-10 years after the one level fusion.

2. The permanent solution: An anterior surgery to remove and replace all discs between L1-S1. A posterior surgery to fuse and place rods from the bottom of the old fusion down to S1, and a lateral approach to fuse both SI joints. This would limit mobility/flexibility significantly, but would also be one set of surgeries to more permanently solve the contorting and degeneration of my lumbar spine.

At only 28 years old and with a 2 year old toddler and a 6 month old infant I have no idea what the right choice is! Putting emotions aside (mainly fear) my gut is telling me to do the larger fusion and put this issue behind me and learn my "new normal" post-surgery while I still have youth on my side instead of putting it off for another 5-10 years when I will be older.

My other question would be, even if my lumbar curve is projected not to progress anymore, the degeneration of discs, the arthritis, and structural integrity would not improve correct?
My last question would be, it wouldn't be smart to have un-fused portions of spine in between 2 fusions correct?

Any help/guidance, would be greatly appreciated. My husband and I and our kids live in Washington State.

[Pooka1]

Hi and welcome.

Two thoughts...

1. Those are not Harrington rods. Those are modern segmental instrumentation with what appear to be all hooks and no pedicle screws.

2. Ask if you are a candidate for tethering for your lumbar with or without the L5-S1 fusion. That would preserve some motion.

Good luck.

[JScoli91]

Thank you pooka1 for correcting my terminology for my fusion. My entire life since they were put in I was told they were Harrington rods.

I was told that vertebral body tethering was only for skeletally immature patients and/or patients with no prior fusions

[Pooka1]

Thank you pooka1 for correcting my terminology for my fusion. My entire life since they were put in I was told they were Harrington rods.

As far as I know, the H rods were only attached at the top and bottom. You have several hooks so I think those are not H rods but Linda can correct me if I am wrong.

I was told that vertebral body tethering was only for skeletally immature patients and/or patients with no prior fusions

Who told you that? I certainly am holding out hope that if my one daughter who still has a curve in her lumbar needs further surgery that she can get her lumbar tethered under her fusion but I haven't investigated it.

These guys tether adults and maybe you can get an opinion about tethering under a T fusion...

https://www.spineandscoliosis.com/

[Concerneddad]

Hi and welcome.

Two thoughts...

1. Those are not Harrington rods. Those are modern segmental instrumentation with what appear to be all hooks and no pedicle screws.

2. Ask if you are a candidate for tethering for your lumbar with or without the L5-S1 fusion. That would preserve some motion.

Good luck.

She certainly should ask about tethering. The American docs tethering adult adults have online consult options -- though I believe one charges for it. I'd guess that they could tell her whether she'd likely be a candidate without needing to see her in person. But I'd just caution that my (thirdhand, and very possibly incorrect) understanding is that one thing that eliminates a lot of adults is degenerative disc disease.

As for the initial question, just as a parent, one thing to think about is that you need a lot more mobility when your kids are small. There's picking them up, chasing them, getting down to their level to talk to/play with them, etc. In ten years they won't need nearly as physically active of a parent. I'm not saying it's dispositive or anything, but I could totally get away with significantly limited mobility right now (kids are early teenagers and preteens). When they were under five would have been much tougher.

[Pooka1]

Concerneddad, are there any patients on the FB tethering group who had their L curve tethered under a T fusion?

Would you be able to ask for JScoli91 please?

[Pooka1]

But I'd just caution that my (thirdhand, and very possibly incorrect) understanding is that one thing that eliminates a lot of adults is degenerative disc disease.

Well if they would tether her then her discs wouldn't degenerate so much, right?? :-)

[titaniumed]

2. The permanent solution: An anterior surgery to remove and replace all discs between L1-S1. A posterior surgery to fuse and place rods from the bottom of the old fusion down to S1, and a lateral approach to fuse both SI joints.

Sounds familar.....Thats what I had done. PEEK spacers from L1-Sacrum Its called an ALIF. They want to fuse your SI joints also?

Can I ask, Who is your surgeon up in Washington? Seattle area?

I do not know what your hardware is. Its not Harrington, but I will look and find out for you at some point.

Have you tried hot water soaks in a hot tub? I found that hot water 106 Degrees F works great for pain. Did that battle for 6-1/2 years....drove me into my surgeries 12 years ago. I also took NSAID's Celebrex, Dicolfenac, Bextra, Naproxen. They do work well for pain.

You have young kids. Do you think you can hang without doing any surgery? I know this is a tough question.

Welcome to the forum

Ed

[Concerneddad]

Concerneddad, are there any patients on the FB tethering group who had their L curve tethered under a T fusion?

Would you be able to ask for JScoli91 please?

Not that I'm aware of. The number of adult patients is tiny -- it's almost all parents (by design). I know that at least a couple of have done fusion-tether hybrid surgeries, but those were all done at the same time.

If I was her, I'd just contact the docs and ask. Even the one who charges for e-consults probably would just say if a prior fusion is disqualifying.

[JScoli91]

Ed, I don’t know if I can do much more of the daily pain. On a normal or good day my pain is at a 4 or 5. On a bad day I am in bed crying at an 8. I am refusing to go religiously on narcotics because I am afraid that it would eventually lead to needing to mask the pain with a cocktail of narcotics while the curve and degeneration progresses further and further. I have heard of cases where once a patient opens the door to using narcotics doctors tend to latch onto that and defer surgery farther and farther into the future until the point where the person is on so many narcotics that they don’t work and surgery is their only option. Plus the idea of being dependent on narcotics at such a young age and with two little ones to care for scares me.

My brain, devoid of fear, keeps saying, “fuse it all, put this problem to bed, and relearn your new normal while you are still young, healthy, and recovery would be quicker than if I waited.”

My question is how reliable are the degree measurements when you are laying down for a CT or MRI? I would think they would be smaller since they aren’t weight bearing but the standing x ray I had done (not pictured) measures larger than that of my supine MRI and CT.

[JScoli91]

I have being seeing DR. Sahota in Richland WA but I have a second opinion scheduled at UW Medicine Spine Center with Dr. Bransford. Dr. Bransford is 3 hours from home, we live in eastern Washington.

[Concerneddad]

My question is how reliable are the degree measurements when you are laying down for a CT or MRI? I would think they would be smaller since they aren’t weight bearing but the standing x ray I had done (not pictured) measures larger than that of my supine MRI and CT.

For kids I've heard the general rule is that supine x-rays measure about 60% as big as standing (so a 20 degree standing would be 12 on the table). I don't know if that's the same for adults.

[titaniumed]

The second opinion is a good idea.....You can ask about tethering at that meeting. When is that happening?

NSAID's are NOT narcotics. They are anti-inflammatories or a non-narcotic analgesic used to reduce swelling in inflamed soft tissues. In our case, around our spines. No doctor has offered these to you? They do not affect the mind, and you can think on these....For example Celebrex or Diclofenac. I would ask your doctor. I would not have made it without them....
https://en.wikipedia.org/wiki/Nonste...lammatory_drug

I have done heavy narcotics during my surgeries, and for recovery, Oxy and Percoset. Been there done that.... Also have done Ketamine during my spine surgeries. A maximum medication program per my hospital.....

I want you to know that I did do the #2 permanent solution (Minus the SI fusions) and it worked. It worked so well, I couldnt believe it. I have almost no issues at all with my lumbar spine and major degeneration, DDD with 4 herniations. I have the common bear traps or tightening in the thoracic, and a roasted neck, but other than that, it was the ticket. I cant believe that I did those 6 years with the sciatica pain. Horse kick in the hip, and flame thrower on the top of my ankle. If you want to know about open ALIF, I can fill you in with what I know on the subject matter.

Massage after a 30 minute 106 degree hot soak in a deep tub works well for pain. I did a LOT of massages back then. I also did 3 months of hot soaks after my spine surgeries. 5 soaks per day.

How long has this pain been happening?

Did you ever brace? Was it a hard brace?

I would get a foam topper for your bed. Its a HUGE HELP Latex foam, 2-4 inches thick.

Nice 3D CT by the way.....We dont see those often.

Linda, our moderator should chime in.....You have some serious decisions to make.

Ed

[JScoli91]

My second opinion is happening sometime in January.

I’m familiar with the differences between NSAIDs and narcotics. I have been taking prescription strength ibuprofen like candy for almost 6 months now. I haven’t been offered any other form of NSAIDS and to be honest I don’t know if I would do them. If I have the option to solve the problem now, even though it would mean a limit in mobility especially if the problem would keep getting worse while I am on them.

My pain first started 2 years ago after our son was born but then it was intermittent depending on how active I was. After our daughter was born 6 months ago it has been constant ever since and I have recently started experiencing weakness in my right side compared to my left and a growing feeling of numbness and tingling in my toes on that side.

I did do a hard brace as an attempt to avoid surgery the first time around but the curves continued to progress.

We already have a foam topper on our bed, have had it for years and I don’t think I could sleep without it that’s for sure.

[LindaRacine]

The implants are C-D (Cotrel–Dubousset). I wouldn't get too hung up on measurements. Measurements are actually relatively unimportant in adults, with a few possible exceptions. Also, supine radiographs are inappropriate for measurement purposes.

It seems like your thoracic spine is not really a problem. Do you have any upper or mid-back pain? Your lumbar spine is a bit of a mess, especially for your age. I think your current surgeon is giving you the best options for surgery. I think you need to figure out whether you're willing to have a small surgery now with the significant risk of needing to fuse the remainder of the lumbar spine at a later date. Or, if you want to do the bigger, probably definitive surgery now, and know that you're going to spend the rest of your life with a lot less flexibility. Many people are unfazed by the flexibility issue, but I personally hate it. And, if you decide to have your S-I joints fused, that will probably have even more impact on your flexibility. I'd like to encourage you to discuss the flexibility issue with your surgeon, asking them to be honest about what it means in terms of function.

While it's OK to research tethering as an option, I'd like to encourage adults considering this treatment to be very circumspect. A relatively high percentage of kids have had their tethers break. That's not a big deal for many, as the tethers may be of little use if the patients have become skeletally mature. But, it seems to me, and to a few other doctors with whom I've discussed this, that tethers in adults are at a fairly high risk of breaking. If a tether breaks in an adult, it means more surgery to either fix the tether and hope it doesn't break again, or to fuse. Also, because the tether allows some amount of movement, it's probable that if one has pain now, the pain will continue after surgery. If it were me, I'd wait awhile and see what happens with the small number of brave adults who have undergone tethering.

--Linda