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JScoli91
12-18-2019, 01:29 PM
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
12-18-2019, 05:30 PM
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
12-18-2019, 06:25 PM
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
12-18-2019, 07:05 PM
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
12-18-2019, 07:44 PM
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
12-18-2019, 07:57 PM
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
12-18-2019, 07:59 PM
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
12-18-2019, 08:00 PM
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
12-18-2019, 08:17 PM
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
12-18-2019, 08:18 PM
Ed, I donít 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 donít 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, ďfuse 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.Ē

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 arenít weight bearing but the standing x ray I had done (not pictured) measures larger than that of my supine MRI and CT.

JScoli91
12-18-2019, 08:20 PM
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
12-18-2019, 08:26 PM
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
12-18-2019, 09:57 PM
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/Nonsteroidal_anti-inflammatory_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
12-18-2019, 10:26 PM
My second opinion is happening sometime in January.

Iím familiar with the differences between NSAIDs and narcotics. I have been taking prescription strength ibuprofen like candy for almost 6 months now. I havenít been offered any other form of NSAIDS and to be honest I donít 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 donít think I could sleep without it thatís for sure.

LindaRacine
12-18-2019, 10:47 PM
The implants are C-D (CotrelĖDubousset). 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

JScoli91
12-18-2019, 11:03 PM
I have been noticing more and more tightness around my shoulder blades and rib like pain that is centered in the middle of my back but other than that itís mainly my sciatica and the SI joint.

I feel like even though a larger fusion would be limiting in flexibility I would learn to over come especially with so much of my life yet, I just canít keep doing this daily pain while at the same time knowing the problem will continue?

How would SI fixation be more limiting in terms of flexibility compared to the lumbar fusion? From what I understand there isnít much movement of the SI joint in daily life and it is meant to stay pretty stable in and of itself.

When my surgeon said that if we did the smaller fusion I would be back in 5-10 years to do the rest, that didnít seem like a good rate of return for how risky the fusion is in and of itself. Iím normally the type of person where if i know Iím going to be in pain and itís going to suck, I donít want to have to do it over again. Plus I canít imagine that leaving unfused vertebrae in between two separate fusions is a good idea...right?

LindaRacine
12-18-2019, 11:45 PM
Ed, I donít 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 donít 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.


That's a healthy attitude about narcotics. Good pain docs will tell you that narcotics are good for short term traumatic pain, but not a good strategy for structural spine problems, where the pain will be ongoing. What happens is that more and more pills are needed to get even minimal improvement. Eventually, your brain sort of switches and the meds don't really do anything, but at that point, the patients are addicted, and weaning off them is very difficult, because on top of the pain, they feel very ill.

Have you thought about trying injections? They work well for some people, and might help you avoid surgery for awhile.

--Linda

Standup2pain
12-18-2019, 11:54 PM
I have been noticing more and more tightness around my shoulder blades and rib like pain that is centered in the middle of my back but other than that itís mainly my sciatica and the SI joint.

I feel like even though a larger fusion would be limiting in flexibility I would learn to over come especially with so much of my life yet, I just canít keep doing this daily pain while at the same time knowing the problem will continue?

How would SI fixation be more limiting in terms of flexibility compared to the lumbar fusion? From what I understand there isnít much movement of the SI joint in daily life and it is meant to stay pretty stable in and of itself.

When my surgeon said that if we did the smaller fusion I would be back in 5-10 years to do the rest, that didnít seem like a good rate of return for how risky the fusion is in and of itself. Iím normally the type of person where if i know Iím going to be in pain and itís going to suck, I donít want to have to do it over again. Plus I canít imagine that leaving unfused vertebrae in between two separate fusions is a good idea...right?


I am also relatively young (34) facing revision surgery. Be sure your second opinion is a deformity specialist who performs a high volume of deformity surgeries (not a general spine surgeon). If you are looking for one,
look at the part of the forum where people review their surgeons and you can ask there. Feel free to pm me if you want to talk and I can share with you my journey, especially as a young person.

LindaRacine
12-19-2019, 12:06 AM
I have been noticing more and more tightness around my shoulder blades and rib like pain that is centered in the middle of my back but other than that itís mainly my sciatica and the SI joint.

I feel like even though a larger fusion would be limiting in flexibility I would learn to over come especially with so much of my life yet, I just canít keep doing this daily pain while at the same time knowing the problem will continue?

How would SI fixation be more limiting in terms of flexibility compared to the lumbar fusion? From what I understand there isnít much movement of the SI joint in daily life and it is meant to stay pretty stable in and of itself.

When my surgeon said that if we did the smaller fusion I would be back in 5-10 years to do the rest, that didnít seem like a good rate of return for how risky the fusion is in and of itself. Iím normally the type of person where if i know Iím going to be in pain and itís going to suck, I donít want to have to do it over again. Plus I canít imagine that leaving unfused vertebrae in between two separate fusions is a good idea...right?
Since I haven't had my S-I joints fused, I can't tell you from first-hand experience, but I have heard surgeons talk about limiting flexibility. I think that SIJ devices severely limit pelvic thrust. I'd be curious to hear from SIJ fusion patients about the issue of sex after surgery.

Here's a website where patients are discussing SIJ fusion:

https://www.letsrun.com/forum/flat_read.php?thread=4392582

Also, I found a website with some images that might be of interest to you:

http://www.southcoastspine.com.au/sacro-iliac-fusion

The top two radiographic images show pelvic fixation screws, which cross the S-I joints. The vast majority of us who have been fused to the sacrum have one or two such screws.

The bottom image shows S-I joint fusion devices. My advice would be to get a second opinion about whether SIJ fusion is necessary, and to ensure that your chosen surgeon has done more than a handful of these surgeries. I attended a course for an S-I joint device. I didn't try placing the devices myself, as I found them to be way too complex. Even watching the procedures was very confusing.

--Linda

JScoli91
12-19-2019, 12:09 AM
Linda thank you for all the links and the information, I will be sure to look into it tomorrow after some rest (in too much pain now to focus on much of anything). I have had an injection before with very minimal results and an adverse reaction to sedation afterwards.

LindaRacine
12-19-2019, 12:24 AM
Linda thank you for all the links and the information, I will be sure to look into it tomorrow after some rest (in too much pain now to focus on much of anything). I have had an injection before with very minimal results and an adverse reaction to sedation afterwards.

If you ever decide to try injections again, I recommend doing it without sedation. I had injections a bunch of times without sedation. It's relatively pain free with the exception of the pain of having to awkwardly lay on a relatively hard table.

--Linda

JScoli91
12-19-2019, 08:54 AM
What is your gut feeling on leaving unfused vertebrae in between two separate fusions? Bad idea?

Pooka1
12-19-2019, 09:43 AM
My feeling is if they think they can leave those levels unfused and still achieve pain relief then you might be a tethering candidate.

Standup2pain
12-19-2019, 09:53 AM
Linda thank you for all the links and the information, I will be sure to look into it tomorrow after some rest (in too much pain now to focus on much of anything). I have had an injection before with very minimal results and an adverse reaction to sedation afterwards.

The only type of injection that has worked for me after having 10 over the course of 4.5 years was a transforaminal injection. I donít know if this applies to you but may be worth asking your dr about.

JScoli91
12-19-2019, 09:56 AM
That was the injection I tried and I only got maybe 3 months at the most of pain relief from it.

titaniumed
12-19-2019, 11:39 AM
I never did injections since I had too many things wrong. It just didnt make sense to me having multiple pain producers on each lumbar level. I can understand getting the works done (Stacked ALIF) having as much pain as a lumbar trainwreck can produce. I wanted one stop shopping and didnt want to go back in. I got my wish. I was 49. I waited 34 years for my surgeries, pushed the pain threshold to the limits. Crazy me. There were no guarantees....The horse blinders went on and I stared straight ahead with the main goal. Susan and I are the only "stacked" ALIF members on this forum.

I didnt lift more than a dinnerplate for the first 6 months. No BLT's (Bending, lifting, twisting) allowed. Picking up kids will be extremely difficult if not impossible after surgery. Getting down on the floor is a challenge. Once you get down there, its hard to stay down there as we constantly have to keep moving.....

One surgeon who is fully capable of revision surgery in the Seattle area is Dr Hart. He worked on Susans revisions and did her L2-Sacrum ALIF.
https://www.beckersspine.com/spine/item/33153-swedish-neuroscience-institute-appoints-dr-robert-hart-spinal-deformities-director-7-highlights.html

Hi Standup, welcome to the forum....

I didnt think you guys would be posting so late in the evening. You would think I would know better as patients in pain usually post late at night! Duh....

Some great SI links and posts from Linda....I elect post #17, post of the month, a mandatory read.

Spinal's is a member that had her SI's done. She is in England. You could PM her on the SI question. I would want 100% verification before doing the SI joints. One thing that could be done is to delay the SI joint procedure should you persue any surgical options....Its an idea to discuss with your surgeon. She is the only member here to have her SI joints fused unless Linda knows otherwise.

Ed

LindaRacine
12-19-2019, 12:13 PM
What is your gut feeling on leaving unfused vertebrae in between two separate fusions? Bad idea?

I think there's a high likelihood that you'll eventually have those segments fused. However, there's a possibility that they won't degenerate, or that they won't degenerate enough to cause significant pain. If I were in your shoes, I think I'd probably try the smaller surgery at this point, mostly because you're so young, and you have such young children.

--Linda

JScoli91
12-19-2019, 12:40 PM
I didnt lift more than a dinnerplate for the first 6 months. No BLT's (Bending, lifting, twisting) allowed. Picking up kids will be extremely difficult if not impossible after surgery. Getting down on the floor is a challenge. Once you get down there, its hard to stay down there as we constantly have to keep moving.....

Ed

So are you saying that I wont ever be able to pick up small kids again with that fusion, or just during the very limited activity window during the immediate healing from surgery? I would imagine getting down onto the floor and up off of the floor is a multi-step process forever after a procedure like this is done. Is it just awkward or is it also painful? Being on the floor also for prolonged periods is the same way?

LindaRacine
12-19-2019, 01:00 PM
So are you saying that I wont ever be able to pick up small kids again with that fusion, or just during the very limited activity window during the immediate healing from surgery? I would imagine getting down onto the floor and up off of the floor is a multi-step process forever after a procedure like this is done. Is it just awkward or is it also painful? Being on the floor also for prolonged periods is the same way?

Hi...

You will almost certainly be restricted from doing that for 3-6 months after surgery. Beyond that, it may or may not be possible. I do not have the ability to sit on the floor. I think that's from a combination of a long fusion and muscle tightness. If I end up on the floor (usually by mistake), it is incredibly awkward for me to get back up again. That's also because of multiple issues (for example, I've had small breaks in both of my kneecaps in the past. To get back up to a standing position after a long spinal fusion, I think one has to be able to get onto their knees. For me, that's incredibly painful.).

So, you may be one of those who doesn't really have a problem. Your age is certainly on your side.

--Linda

JScoli91
12-19-2019, 02:54 PM
Although slightly scary I appreciate the transparency in what could or could not be very real consequences of a procedure like that. I was told that whatever flexibility and mobility you have going into a procedure like that, the more likely you are to retain it especially in areas that are not being fused or made rigid. My hips are very flexible and I am pretty ambidextrous with my feet (picking things up off the floor, etc.), a skill I proudly kept as a quirk after my first fusion that may now prove very beneficial. I am hoping that if we go the route of the long fusion and SI fusion I would still retain a lot of my hip flexibility.

This whole time I have been fighting with insurance to let me have a second opinion for this procedure I went ahead and started PT to hopefully get me in the best shape possible for the procedure when I have it done, no matter if its the smaller or larger fusion. I still have maybe 5-10 pounds of pregnancy weight to lose but alot of what I feel I need to do physically for prepping for another fusion would be core strengthening and muscle toning and working on flexibility in order to compensate for post surgical limitations and even longer term limitations.

PT has been SUPER slow in terms of progress and abilities. I don't know quite clearly if it is my SI joint arthritis or if it is the bone-on-bone L5-S1 that hurts so bad but its always when I am doing my assigned exercises or when I am laying flat on my back and I try to get up to a sitting position. This is whenever I am in that position and trying to get out of it. When I try to walk afterwards it hurts so bad to put weight on that leg right in the same spot, by my iliac crest and deep in my butt cheek. For a while there I was thinking, maybe instead of my SI joint its Piriformis syndrome and if I just get that muscle working more like it should it would get better but I doubt thats what it is.

I was told by my original surgeon that he would fuse the SI joints as a means to hopefully prolong the life of my hips. However, I would still more than likely need hip repair or replacement at an earlier age since all of my bending and flexibility will come from that area. Do they do SI fusions pretty regularly with longer lumbar fusions now a days?

Tina_R
12-19-2019, 03:38 PM
I went ahead and started PT to hopefully get me in the best shape possible for the procedure when I have it done, no matter if its the smaller or larger fusion. I still have maybe 5-10 pounds of pregnancy weight to lose but alot of what I feel I need to do physically for prepping for another fusion would be core strengthening and muscle toning and working on flexibility in order to compensate for post surgical limitations and even longer term limitations.

You are smart. I wish I had worked out before my fusion a few months ago. While I'm recovering my surgeon has disallowed any exercise except walking. I do a lot of that but I feel as though my arm and core muscles are atrophying. Wearing a brace to keep from twisting babies the torso even more.

titaniumed
12-19-2019, 09:58 PM
So are you saying that I wont ever be able to pick up small kids again with that fusion, or just during the very limited activity window during the immediate healing from surgery? I would imagine getting down onto the floor and up off of the floor is a multi-step process forever after a procedure like this is done. Is it just awkward or is it also painful? Being on the floor also for prolonged periods is the same way?

I could probably lift you over my head right now, but hold a child waiting in line at the grocery store for more than a few minutes would create soft tissue pain. I have noticed lately that even the slightest of forces, just 1# of tension being held for a few minutes will stimulate the need to move. We are like sharks that have to keep moving. Sitting or standing in one position for more than a few minutes is hard sometimes. Sitting at my desk, I do a lot of moving around, changing positions, and frequest walks. Sitting on airplanes is also fun....I carry 2 down pillows in a carry on and even still I am very fidgety with changing pillow positions and body positions.

The only way to get a soft tissue tension break is to lay down. Sometimes, I have to lay down or I get really exhausted. Lay down flat on my back without a pillow, dead flat. Beds need to be dead flat, I really notice this with full fusion. I could be a furniture or bed tester......I would reject 95% of all furniture made and they would hate me. Sorry. The worst is sitting at one of the wooden booths at an Outback Restaurant. Those booths win the most uncomfortable award for furniture design. I always get a chair at a table.

I dont hang out on the floor.....or on soft confortable living room furniture. I have some really nice furniture I do not use, including a Lazy Boy with heat and vibration. $1800 and I rarely sit there anymore. Getting up from a floor does require getting on at least one knee. Its not the easiest of moves thats for sure.

Ed

titaniumed
12-19-2019, 10:22 PM
Do they do SI fusions pretty regularly with longer lumbar fusions now a days?
I know of 1 SI fusion case testimonial.

Thats 15 years on NSF and around 5 on the SSO British forum. I read and post everyday or try to. Total of probably 25,000 scoliosis and kyphosis members.

I had to lose weight before my surgeries, and did lose a few pounds. After my surgeries, I lost 40# in 40 days on the Percoset weight loss program. Oprah would be cheering! Had lots of problems eating, and recovering from my ileus was a chore that required lots of walking......

Physical Therapy when you have inflamed lumbar nerve roots and spinal stenosis is not easy. Before surgery and after. Walking is super important. Doing short walks multiple times per day, walking until you hit your pain threshold. Walk too much and it will trigger off more pain that sends you back to bed. Its a careful balance.

Ed

JScoli91
12-20-2019, 12:13 AM
Ed, just when I started to be able to take my fear of a full fusion now I am second guessing it. It sounds like just being comfortable in any way after a full fusion is impossible unless you are constantly moving or sitting on uncomfortable furniture. This is such a massive decision that I never thought I would have to make and Iím absolutely terrified.

When I was 13 my parents and I were told that having my entire thoracic fused would resolve almost all of my scoliosis forever and after that fusion scoliosis wouldnít be a part of my future, only a piece of my past. I guess he was wrong. When we found out about my curves progressing back in October and November it took me by surprise and I instantly felt sick. Iím just so scared.

Do I do what is right for me structurally but forever alters my life, my comfort, and how I interact with my children? Or do I sacrifice what is right for me structurally to maintain being able to be there for my kids, sit comfortably in a recliner or on a couch and sleep with a pillow? Why does this have to be so hard...?

susancook
12-20-2019, 12:54 AM
Hi there fellow Washingtonian! I troll the forum occasionally now having had my original surgery in 2013 and a few revisions since then. I am 73 and live in Yacolt, WA about 45 minutes north of Portland Oregon. My revisions were done by Dr. Robert Hart, previously in Portland but now at Swedish Hospital in Seattle. He only does spinal deformity surgery. Sounds like you already have your second opinion set up in Richland, but I wanted to throw Dr. Hart's name out in case you want another opinion.

Best of luck of your decision making. I am fused from T1 to sacrum.

Susan

Pooka1
12-20-2019, 07:17 AM
When I was 13 my parents and I were told that having my entire thoracic fused would resolve almost all of my scoliosis forever and after that fusion scoliosis wouldn’t be a part of my future, only a piece of my past. I guess he was wrong. When we found out about my curves progressing back in October and November it took me by surprise and I instantly felt sick. I’m just so scared.

I was so sorry to read this.

Did the surgeon ever tell you whether your lumbar was structural or just compensatory?

The fact that the T fusion only corrected your lumbar to within the measurement error (+/- 5*) suggests that the L curve might be structural as far as I know. If so then he never should have told you that you definitely weren't looking at more surgery.

Here are before and after pictures of my two kids. http://www.scoliosis.org/forum/showthread.php?13180-Before-and-After-Pictures-Xrays&p=135792#post135792

My one daughter (kid 1) had a structural T curve in the high 50's and I think the compensatory L curve was in the low thirties IIRF. When she was hyper-corrected, her lumbar curve practically disappeared. Do you see what I mean?

The other daughter (kid 2) also had a structural T curve and a compensatory L curve. She was left with an L curve because she was not able to be hyper-corrected. She bent her lumbar out almost completely showing that it would have corrected itself had her T curve been hyper-corrected. It reduced itself only enough to match the new smaller fused T curve. She is not out of the woods even though her L curve was compensatory. Years of living with a curve can destroy the lumbar and either structuralize it or just destroy the discs. I am hoping tethering will be an option if she needs more surgery.

So in your case, your T curve was hyper-corrected to 14* but your lumbar did not reduce to match that. It usually does. That's why I think your L curve may have been structural.

So because you were left with a 20* L curve after surgery, it is not shocking that you are having problems though I think them happening this early might be shocking. That's why I think maybe your L curve was structural. We have seen cases on here where a surgeon just won't fuse a structural lumbar in a young person knowing they will need surgery in the future.

You will figure this out. Knowledge is power.

Pooka1
12-20-2019, 07:20 AM
The other thing is your T fusion ended pretty high at T12. I am wondering what rule they used to end it there.

Did they do bending films before your surgery?

JScoli91
12-20-2019, 08:43 AM
Pooka1, I wish I could find out all the information from my first surgery. It was back in 2003 in Portland where I grew up. I put in a records request in the hospital and because it was so long ago they had to go back into the archives. The only thing they were able to find and send my way was a dictation of the surgical report and a lumbar X-ray taken the day of surgery. Other than that the only information I have is from when I visited the office 5 years after concerned that my lumbar was getting worse and the report says an X-ray done then showed my lumbar at 28 degrees. Up 8 degrees from its correction only 5 years earlier! Though from the doctors notes from that visit he was of the mind set that it was inconsequential.... fast forward to today and my original surgeon has long since retired and the surgeon I followed up with in 2008 is no longer at that hospital...the trail has gone cold

Pooka1
12-20-2019, 09:03 AM
I can't fathom a surgeon saying an 8 degree increase in 5 years is inconsequential. This is not my field so I really don't know but that shocks me anyway.

I suspect your lumbar was structural and he just hoped for the best like other surgeons. But if my one kid clearly had a compensatory curve and it was left with about 25 degrees and our surgeon couldn't promise she wouldn't need more surgery, I think your surgeon was not being realistic or that was the state of knowledge then. I have no idea which is true.

Pooka1
12-20-2019, 09:10 AM
And as an update on kid 2 who was left with about 25 degrees in her compensatory lumbar a little over 10 years ago, she has zero problems with her back. We don't have recent radiographs because she has no problems but I am guessing the curve is still stable. She did an internship this last summer that was grueling... several-day hikes into the mountains and wading in streams to do fish shocking/counts. She had to carry very heavy gear over miles and miles into remote areas. Many body parts failed (dislocated a shoulder, foot/ankle gave out from over use, etc), but her back NEVER bothered her. This is why I say the surgeon saved her. She can do truly crazy physical activity and her back holds up.

LindaRacine
12-20-2019, 11:56 AM
Ed, just when I started to be able to take my fear of a full fusion now I am second guessing it. It sounds like just being comfortable in any way after a full fusion is impossible unless you are constantly moving or sitting on uncomfortable furniture. This is such a massive decision that I never thought I would have to make and Iím absolutely terrified.

It's VERY important to remember that we're all very different. This forum has become pretty idle in the last few years. Prior to that we had hundreds of people responding to messages. Among them are some who have abilities like touching their toes after fusion to the sacrum. We don't mean to scare anyone away from doing the right thing, but I think most of us agree that we should be as open and honest as possible, so that people know what CAN happen.

You might want to look at these threads to get opinions from people who are happy they had surgery and people who are unhappy they had surgery.

http://www.scoliosis.org/forum/showthread.php?12823-The-I-m-Happy-I-Had-Surgery-Sticky-Thread
http://www.scoliosis.org/forum/showthread.php?12824-The-quot-I-m-Sorry-I-Made-the-Decision-to-Have-Surgery-quot-Sticky-Thread

--Linda

LindaRacine
12-20-2019, 11:57 AM
Hi there fellow Washingtonian! I troll the forum occasionally now having had my original surgery in 2013 and a few revisions since then. I am 73 and live in Yacolt, WA about 45 minutes north of Portland Oregon. My revisions were done by Dr. Robert Hart, previously in Portland but now at Swedish Hospital in Seattle. He only does spinal deformity surgery. Sounds like you already have your second opinion set up in Richland, but I wanted to throw Dr. Hart's name out in case you want another opinion.

Best of luck of your decision making. I am fused from T1 to sacrum.

Susan

Just so you know, I'm now in Washington as well. I live in Blaine, just south of Vancouver BC.

--Linda

JScoli91
12-20-2019, 12:05 PM
Linda, blaine you say? We live in Sunnyside WA sandwiched right in the middle between yakima and tri-cities in eastern WA. I am probably having my second opinion at UW Spine Clinic with Dr. Bransford soon, are you close enough that we might be able to meet up? I have met only a couple fellow scoliosis brothers and sisters so far and would be interested in meeting another.

titaniumed
12-21-2019, 08:18 AM
Ed, just when I started to be able to take my fear of a full fusion now I am second guessing it. It sounds like just being comfortable in any way after a full fusion is impossible unless you are constantly moving or sitting on uncomfortable furniture. This is such a massive decision that I never thought I would have to make and Iím absolutely terrified.

When I was 13 my parents and I were told that having my entire thoracic fused would resolve almost all of my scoliosis forever and after that fusion scoliosis wouldnít be a part of my future, only a piece of my past. I guess he was wrong. When we found out about my curves progressing back in October and November it took me by surprise and I instantly felt sick. Iím just so scared.

Do I do what is right for me structurally but forever alters my life, my comfort, and how I interact with my children? Or do I sacrifice what is right for me structurally to maintain being able to be there for my kids, sit comfortably in a recliner or on a couch and sleep with a pillow? Why does this have to be so hard...?

This is something that multiple members here have reported happening to them, and is so wrong.... Its going to be a whole lot better if everyone is honest about medical challenges, surgeons and patients need to be honest and state the truth. My surgeon was 100% honest with me and I am thankful. Our bodies are complicated and we have to accept this. You can also have the best surgeon in the world do everything right, and have things go wrong beyond his control. Pseudarthrosis and infections are examples. Pseudarthrosis is a non-union, and we need to fuse or our rods will break at some point. Since you are young, you do have the advantage and probably wont have any of these poblems, but we need to be aware so being misinformed does not happen again.... These are probably the 2 main things we have to worry about most when we do our surgeries. Surgeons will review complications with you, this is done usually right before you go into surgery. You will sign knowledge statement forms on this matter. They cant possibly cover all complications because that's impossible. Most complications are resolvable, but some can take time as some members have experienced here in the past (and present).

I agree with Sharon on leaving that 20 degree Cobb below your fusion mass. Its hard to believe that your pain problems happened so soon at age 26. I am also very sorry this happened. The hook only construct is interesting. You must have been small.

Your situation with those small babies has me worried.....terrible 2's require a lot of chasing, and chasing toddlers is a workout. Some help with your inner circle (Mom, sisters etc) would be hugely beneficial.

Option 1 (L5-S1 solo fusion ALIF) seems as if its just buying time, and you dont know if your pain is coming from your upper lumbar levels or not. You have to assume that it is or will happen at some point. I know I would want to have a surgeon that has done prior stacked ALIF's in the past on scoliosis patients......I dont know if this would be a surgical challenge following with the full ALIF a few years later.

I dont want you to make a pain based decision with the wrong surgeon. I guess thats what I am trying to say. I hope you understand. Timing has to be right.

Hang in there
Ed

JScoli91
12-21-2019, 08:50 AM
Ed thank you for your reply. I was 13 when I had my first fusion and I am 28 now. I was told that pregnancy can increase curves, is there any merit to that?

Anyway, so far the surgeon I have talked to locally in my area has been very up front with the risks and potential challenges, etc. He wanted me to have a second opinion to ease my mind, it wasnít me wanting a second opinion to double check him. I think that speaks to a surgeons merit and character when he can put his personal pride and ego aside thats attached to his opinion and be willing to welcome in the voice of another surgical colleague, donít you think? If I were to do either surgery locally instead of in Seattle at UW I donít have a lack of confidence in my surgeon but rather the rural area that we live in and the hospital it would be at and the resources that it has. Is that grounded in a solid concern or makes sense?

I know the one level fusion leaving unfused vertebrae in between the 2 fusions is just a way to buy time, but I just donít know if in 5-10 years i would want to go through all the risk again of another surgery plus another recovery, all at what would be close to 40 years old. If we did the full fusion now we have a very large support network to help us with the baby and our toddler so we wouldnít be alone in the fight thatís for sure.

In terms of long term comfort and function, that is what had me taken aback by your previous reply. You had said you canít stay in one position comfortably for very long? Getting onto or off the floor is extremely difficult? Being on the floor sitting for example is out of the question? Sleeping without a pillow? If that is realistically what is in store for me then I really need to start re thinking things I think. I guess itís hard to get a good judgement on what basic day to day things will be like after a full fusion. I know everyone is different but if there were a way I could get even some semblance of an idea I think it would help at least a little bit. This might be too personal, but...with a full fusion and without the rotation, how is something as personal as wiping when going to the bathroom? Random question I know but I keep thinking about how I would do everything after a surgery like that and I am fully healed.

LindaRacine
12-21-2019, 01:58 PM
Linda, blaine you say? We live in Sunnyside WA sandwiched right in the middle between yakima and tri-cities in eastern WA. I am probably having my second opinion at UW Spine Clinic with Dr. Bransford soon, are you close enough that we might be able to meet up? I have met only a couple fellow scoliosis brothers and sisters so far and would be interested in meeting another.

Unfortunately, I'm about 100 miles from there. If I'm available on the day/time of your appointment, it's in the middle of the day, and there's little to no snow, I'd be willing to make the drive.

--Linda

LindaRacine
12-21-2019, 02:01 PM
The hook only construct is interesting. You must have been small.

C-D implants involved only hooks. That's what I have from my original surgery.

LindaRacine
12-21-2019, 02:23 PM
I was told that pregnancy can increase curves, is there any merit to that?

The research says that pregnancy has no effect on scoliosis, but I've heard it from enough women that I have my doubts. It's possible that it's a soft tissue issue.


Anyway, so far the surgeon I have talked to locally in my area has been very up front with the risks and potential challenges, etc. He wanted me to have a second opinion to ease my mind, it wasn’t me wanting a second opinion to double check him. I think that speaks to a surgeons merit and character when he can put his personal pride and ego aside thats attached to his opinion and be willing to welcome in the voice of another surgical colleague, don’t you think? If I were to do either surgery locally instead of in Seattle at UW I don’t have a lack of confidence in my surgeon but rather the rural area that we live in and the hospital it would be at and the resources that it has. Is that grounded in a solid concern or makes sense?

Your concern about having a big spine surgery in a rural hospital is valid. When I worked at UCSF, at least half of our revision cases came from outside the SF Bay Area.

While I think your surgeon sounds like s/he knows what they're doing, I think it's a good idea to get a second opinion. (I think this is true in almost all cases.) I think the best tools we have for choosing the best surgeons are 1) referrals from other patients who have had similar surgeries and 2) checking out each surgeon's training. Whenever possible, I recommend choosing a surgeon who is fellowship trained, preferrably with surgeons who are known to be the best. Training centers known to produce great surgeons include Hospital for Special Surgery (NY), Columbia (NY), Washington University (St. Louis), and UCSF. With that said, I'm fairly certain all those centers have also produced surgeons who are less than great.



In terms of long term comfort and function, that is what had me taken aback by your previous reply. You had said you can’t stay in one position comfortably for very long? Getting onto or off the floor is extremely difficult? Being on the floor sitting for example is out of the question? Sleeping without a pillow? If that is realistically what is in store for me then I really need to start re thinking things I think. I guess it’s hard to get a good judgement on what basic day to day things will be like after a full fusion. I know everyone is different but if there were a way I could get even some semblance of an idea I think it would help at least a little bit. This might be too personal, but...with a full fusion and without the rotation, how is something as personal as wiping when going to the bathroom? Random question I know but I keep thinking about how I would do everything after a surgery like that and I am fully healed.

Unfortunately, this is an area that is incredibly variable. As mentioned previously, we've seen people with long fusions who are incredibly flexible. They can do things like touch their toes, play golf, sit on the floor, etc.

With that said, those of us who ended up with less flexibility, suffer from everyday function, including issues with dressing, bathing, wiping, sex, etc. If I knew why there's such a disparity, I'd probably be famous. I suspect that the biggest factors are age and how active and flexible one is before surgery. Unfortunately, as many of us know, this can all be a real Catch 22. Daily pain, especially when it involves nerve pain in the legs, can definitely lead to inactivity. I personally was incredibly active until my early 30's. I hiked, skied, and played competitive sports. As I started having pain, I stopped doing all of those things one-by-one.

--Linda

JScoli91
12-21-2019, 03:25 PM
Is there any idea, in a general sense, at what age range a surgeon wouldnít do a full lumbar fusion for the sake of flexibility and mobility, even if the curve continued to increase while it wasnít fused?

I just canít wrap my head around how my curve started at 25 and corrected to 20. But then 5 years after surgery itís documented back to 28. Then 10 years later itís up to 40.

Pooka1
12-21-2019, 04:11 PM
Is there any idea, in a general sense, at what age range a surgeon wouldnít do a full lumbar fusion for the sake of flexibility and mobility, even if the curve continued to increase while it wasnít fused?

I just canít wrap my head around how my curve started at 25 and corrected to 20. But then 5 years after surgery itís documented back to 28. Then 10 years later itís up to 40.

That's an interesting question. Other than some surgeons not fusing past L3 or L4 and going to great lengths with osteotomies to reduce fused levels in the lumbar in teens, I don't recall any young adults talking about their surgeon trying to avoid lumbar fusion. I would not be surprised if they treated young adults similarly. But kids and young adults are probably only dealing with progression and not pain. You have great pain at a fairly young age so I think you are off the usual spectrum on this and the normal rules such that they are do not apply.

Your progression is not out of the ballpark for a structural curve over time. That is yet another reason i think your lumbar is structural. They are other cases of lumbars collapsing like that in young people. One case was that woman with the small structural T curve and small compensatory L curve wherein her T curve stayed small but her lumbar collapsed into a big structural curve. She is a case that shows some small percentage of people might benefit from lowering the trigger angle for surgery on her T curve. But we will never know who these few people are ahead of time and it is not certain that fusing her T curve in the thirties would have prevented to lumbar collapse but it might have because the T curve was likely able to be hyper corrected driving the lumbar pretty darn straight. Who knows.

JScoli91
12-21-2019, 04:31 PM
Do many people have their curves collapse? I have never heard of that happening. What does it look or present like? Iím assuming since everyoneís case is different itís hard to attribute a general curve angle that that would happen at?

Pooka1
12-21-2019, 05:59 PM
Do many people have their curves collapse? I have never heard of that happening. What does it look or present like? Iím assuming since everyoneís case is different itís hard to attribute a general curve angle that that would happen at?

That is just my word for a small curve progressing quickly absent growth as in an adult. So I don't mean my one daughter whose growth fueled a 5* progression a month for several months.

I think I used it in the context of that one women a I mentioned who had a small compensatory L curve that got very large while her structural T curve stayed pretty much the same. This is easily one of the weirdest cases I have ever read about.

Once I started using that word, some other posters thought their curve qualified as collapsed just on the basis of having a large progression in a young adult.

HOLD THE PHONE!!! Here is a thread I started a while ago with a surgeon talking about "collapsed" curves in people.... that is where i got the term.

http://www.scoliosis.org/forum/showthread.php?13727-Dr-Hey-has-seen-quot-countless-cases-quot-of-progression-in-quot-stable-quot-scoliosis

Pooka1
12-21-2019, 06:28 PM
here is the case I was banging on about so much... talks about pregnancy also. Lots of parallels to your case I think.

https://drlloydhey.blogspot.com/2007/09/29-yo-woman-with-progressive-scoliosis.html


Yesterday Jaclyn and I saw a lovely 29 yo woman at Hey Clinic who was diagnosed with a R thoracic scoliosis as a young teenager. The curve was followed with serial X-Rays, and by the time she turned 17 and had stopped growing, her thoracic curve was 30 degrees, and her lumbar compensatory curve was 18 or so degrees. At that time the patient remembers being told that ďshe did not need to worryĒ since she was ďdone growingĒ and her curve was not that large.


She came in to Clinic today with questions about getting pregnant and having children with her scoliosis.

Her X-Ray shown above shows that her thoracic curve was still around 30 degrees, but her lumbar curve was now approximately 39 degrees, with severe disc collapse especially at L23 level.
She was really surprised to see the degree of progression over the past 12 years.

Why did the curve below collapse? The answer is that the asymmetric disc and facet loading over the past 12-18 years has caused an increased rate of wear of these joint surfaces. Once the discs and facet joints begin to settle and wear out, ongoing collapse can occur, which causes a vicious cycle of asymmetric loading, leading to further collapse, and so on. We use the analogy in clinic that the ďcar is out of alignmentĒ, causing the ďtiresĒ (Disks) to wear out prematurely. In this young ladyís case, her spine may have been quite stable for years, then at some point the disc and facet joint wear progressed to the point that rapid curve progression and posture change occurred.


Could this collapse have been prevented? It is hard to say for sure, but it is possible that if the thoracic curve had been straightened and fixed when she was young, then the lumbar curve would have gone down to near zero degrees. This centering of the load may have prevented the asymmetric disc collapse in that mid-lumbar area. This possible prevention of later lumbar and/or thoracic collapse and degeneration is one of the benefits of early fixation of scoliosis in the adolescent or young adult.

--------------------

Here are some threads discussing collapses, saving lumbar levels, among other things that maybe relevant to your situation.

http://www.scoliosis.org/forum/showthread.php?13791-Hey-Clinic-Another-collapse-case-in-an-adult&highlight=

http://www.scoliosis.org/forum/showthread.php?13475-Another-30*-at-maturity-progressing-quickly-and-at-a-young-age&highlight=

http://www.scoliosis.org/forum/showthread.php?13982-lt-30*-at-maturity-but-surgery-due-to-progression-a-few-years-later&highlight=

http://www.scoliosis.org/forum/showthread.php?12696-Two-more-collapsed-spine-cases-one-starting-at-only-33*-at-maturity&highlight=

titaniumed
12-21-2019, 10:01 PM
Anyway, so far the surgeon I have talked to locally in my area has been very up front with the risks and potential challenges, etc. He wanted me to have a second opinion to ease my mind, it wasnít me wanting a second opinion to double check him. I think that speaks to a surgeons merit and character when he can put his personal pride and ego aside thats attached to his opinion and be willing to welcome in the voice of another surgical colleague, donít you think? If I were to do either surgery locally instead of in Seattle at UW I donít have a lack of confidence in my surgeon but rather the rural area that we live in and the hospital it would be at and the resources that it has. Is that grounded in a solid concern or makes sense?



Yes.......

I think that it does take some guts to take on a serious procedure like a stacked scoliosis ALIF, and he wouldnt offer unless he knew he could do it, and that his team was sound, along with the equipment at the hospital. So I would say yes, he has scored some bonus points.

I had 2 scoliosis surgeons, and a vascular surgeon. They did not perforate the Peritoneum. They use blades to slide everything over and do not get into the intestines. My vascular surgeon started the hole, and my scoliosis surgeons came in later. The vascular surgeon is also the person who closes everything up coming back out. This is meticoulous work..
I would address his team.....who is the vascular surgeon, and who else will be there for the operation.
https://en.wikipedia.org/wiki/Peritoneum

Its also nice to be close to home. I did my surgeries in Reno which is not a scoliosis mecca like some of the big centers in the US. The one thing about larger centers like UCSF is that you have 1000 plus medical experts all located together. There has to be some value in this.

Linda had a "Should I Have Scoliosis Surgery" test years ago on her website. A series of questions relating to scoliosis with a numerical score at the end. I took it a few times and failed miserably. In other words, I needed surgery. I tried searching for it and couldnt find it. It's a good test with pertinent questions. Linda could you post this sticky? Sure would like to see it again.

Ok, so bonus point add 1 (smiley face)

I am in Colombia till Jan 21st. The Christmas parties are going full force down here so having a little trouble keeping up with the forum.

Ed

JScoli91
12-21-2019, 10:15 PM
Thank you all for all of the information, it is so helpful to be talking with everyone and keeping the dialogue open. It is truly appreciated.

My husband and I have met with the vascular surgeon that works with the surgeon I would be using if we were close to home in having it all done. A very matter of fact, straight to the point, sharp shooting kind of guy. We have nothing but confidence with him. We spent over an hour talking with him about what his role in the procedure would be the possible benefits but also a long discussion of the possible risks. I am sure from a legal standpoint he was having that discussion with us to cover his own hiney in terms of liability and wanting us to be fully informed but it was nice to know he was being completely transparent.

When he was talking about all the risks, especially with the aorta and vena cava being right there and what could possibly happen if things would go wrong; all that kept flashing through my mind were the faces of my babies (2 years and the other 6 months) I kept thinking, fear taking over my mind, ďif I were to die my babies would have no first hand memories of me, it would all be photos or videos or storiesĒ. Nothing in regards to the risks of the procedure were earth shattering to me (grew up with my mom as a cardiovascular OR nurse and Iím a dairy farmer so I know my way around anatomy) but it brought the risks much closer to home and cemented the reality of what the situation is and the cards we are shuffling around as we try to figure this all out.

LindaRacine
12-22-2019, 11:47 AM
Is there any idea, in a general sense, at what age range a surgeon wouldnít do a full lumbar fusion for the sake of flexibility and mobility, even if the curve continued to increase while it wasnít fused?

It depends on the surgeon and the patient. One of the surgeons I worked with is a very conservative surgeon. He really tries to get his younger patients to avoid fusion in the lower lumbar area, for as long as possible. If a 50 year old patient is very active, he's most likely to still try to discourage them from lower lumbar surgery. If a 35 year old tells him they can't tolerate another day with their pain, he'll reluctantly agree to lower lumbar surgery.


I just canít wrap my head around how my curve started at 25 and corrected to 20. But then 5 years after surgery itís documented back to 28. Then 10 years later itís up to 40.

As you know, I'm not a surgeon, but I think it's likely that you have a fractional curve. That's a curve below your L1-L4 lumbar curve that is clearly seen in your most recent radiograph. While your lumbar curve is tilted to the left on the radiograph, the L5 vertebra is tilted to the right. Your curve probably increased as a reaction to the fractional curve.

--Linda

LindaRacine
12-22-2019, 11:51 AM
Thank you all for all of the information, it is so helpful to be talking with everyone and keeping the dialogue open. It is truly appreciated.

My husband and I have met with the vascular surgeon that works with the surgeon I would be using if we were close to home in having it all done. A very matter of fact, straight to the point, sharp shooting kind of guy. We have nothing but confidence with him. We spent over an hour talking with him about what his role in the procedure would be the possible benefits but also a long discussion of the possible risks. I am sure from a legal standpoint he was having that discussion with us to cover his own hiney in terms of liability and wanting us to be fully informed but it was nice to know he was being completely transparent.

When he was talking about all the risks, especially with the aorta and vena cava being right there and what could possibly happen if things would go wrong; all that kept flashing through my mind were the faces of my babies (2 years and the other 6 months) I kept thinking, fear taking over my mind, ďif I were to die my babies would have no first hand memories of me, it would all be photos or videos or storiesĒ. Nothing in regards to the risks of the procedure were earth shattering to me (grew up with my mom as a cardiovascular OR nurse and Iím a dairy farmer so I know my way around anatomy) but it brought the risks much closer to home and cemented the reality of what the situation is and the cards we are shuffling around as we try to figure this all out.

While I applaud your desire to know all the answers, I caution wanting to know too much. I've known more than a few people who thought they wanted to know it all, but who eventually had to pull away because all the details ended up freaking them out. It's good to have a healthy, realistic expectation that complications can and do occur, but be careful about obsessing too much. :-)


--Linda

LindaRacine
12-22-2019, 12:05 PM
Yes.......

I think that it does take some guts to take on a serious procedure like a stacked scoliosis ALIF, and he wouldnt offer unless he knew he could do it, and that his team was sound, along with the equipment at the hospital. So I would say yes, he has scored some bonus points.

I had 2 scoliosis surgeons, and a vascular surgeon. They did not perforate the Peritoneum. They use blades to slide everything over and do not get into the intestines. My vascular surgeon started the hole, and my scoliosis surgeons came in later. The vascular surgeon is also the person who closes everything up coming back out. This is meticoulous work..
I would address his team.....who is the vascular surgeon, and who else will be there for the operation.
https://en.wikipedia.org/wiki/Peritoneum

Its also nice to be close to home. I did my surgeries in Reno which is not a scoliosis mecca like some of the big centers in the US. The one thing about larger centers like UCSF is that you have 1000 plus medical experts all located together. There has to be some value in this.

Linda had a "Should I Have Scoliosis Surgery" test years ago on her website. A series of questions relating to scoliosis with a numerical score at the end. I took it a few times and failed miserably. In other words, I needed surgery. I tried searching for it and couldnt find it. It's a good test with pertinent questions. Linda could you post this sticky? Sure would like to see it again.

Ok, so bonus point add 1 (smiley face)

I am in Colombia till Jan 21st. The Christmas parties are going full force down here so having a little trouble keeping up with the forum.

Ed

Unfortunately, that was a document that I put up on my ScoliosisLinks website that I abandoned several years ago. I apparently didn't save a copy of the questionnaire. Sorry.

Tina_R
12-22-2019, 04:07 PM
One of the surgeons I worked with is a very conservative surgeon. He really tries to get his younger patients to avoid fusion in the lower lumbar area, for as long as possible. If a 50 year old patient is very active, he's most likely to still try to discourage them from lower lumbar surgery.
--Linda

Why is this, Linda?

LindaRacine
12-22-2019, 05:36 PM
Why is this, Linda?

I think mostly because he does everything he can to secure a good outcome. He knows that many patients are unhappy with their inflexibility.

When I talk about my own inflexibility, I always say I'm unhappy with my restrictions. It's really important to understand that doesn't mean I made the wrong decision. Because of really bad leg pain, I could only stand for a minute or two before my revision surgery. So, although I hate that inflexibility, I'd actually still make the same decision to have surgery. While I have several functional issues, I can at least stand, and I no longer have lower back pain. For many of us, it's all a tradeoff. The best advice I can give you is to not expect perfect. It rarely happens.

--Linda

LindaRacine
12-22-2019, 05:50 PM
Linda had a "Should I Have Scoliosis Surgery" test years ago on her website.

I remembered that I had an old hard drive with my ScoliosisLinks files on it, and I managed to find the drive. I have no way of putting it up on the web now, but I'm happy to send it to anyone who'd like it. It's a bit dated, but it still serves the purpose of making people think about many of the important elements of making the surgery decision.

If you'd like a PDF of the file, send me a PM with your email address.

--Linda

Tina_R
12-22-2019, 06:53 PM
I think mostly because he does everything he can to secure a good outcome. He knows that many patients are unhappy with their inflexibility.

When I talk about my own inflexibility, I always say I'm unhappy with my restrictions. It's really important to understand that doesn't mean I made the wrong decision. Because of really bad leg pain, I could only stand for a minute or two before my revision surgery. So, although I hate that inflexibility, I'd actually still make the same decision to have surgery. While I have several functional issues, I can at least stand, and I no longer have lower back pain. For many of us, it's all a tradeoff. The best advice I can give you is to not expect perfect. It rarely happens.

--Linda

But why the lumbar? Is the inflexibility of the lumbar harder to deal with than that of the thorax? Or is that a matter of personal preference -- which activities would you or I miss the most that are now compromised?

jackieg412
12-22-2019, 07:17 PM
It is the area of the lumber that we have most of our movement. The thoracic spine doesn't by nature move that much. The ribs kind of keep it still.
The one thing I find hardest is picking something small off of the floor . If I don't get all the way down, My arms aren't long enough to reach the floor.

LindaRacine
12-22-2019, 07:43 PM
But why the lumbar? Is the inflexibility of the lumbar harder to deal with than that of the thorax? Or is that a matter of personal preference -- which activities would you or I miss the most that are now compromised?

Yup, what Jackie said.

LindaRacine
12-22-2019, 07:47 PM
It is the area of the lumber that we have most of our movement. The thoracic spine doesn't by nature move that much. The ribs kind of keep it still.
The one thing I find hardest is picking something small off of the floor . If I don't get all the way down, My arms aren't long enough to reach the floor.

I have very long fingers, so I have a tiny advantage. Every time I think of that, Iím reminded of all the times I dropped a pen or a piece of paper in meetings with a bunch of spine surgeons. They were typically very interested in seeing if I was successful picking the object up. For the most part, if they were close enough to me, they would usually jump up to help me out.

Tina_R
12-22-2019, 08:16 PM
Yup, what Jackie said.

Even if it doesn't include fusing the sacrum?

LindaRacine
12-22-2019, 10:01 PM
Even if it doesn't include fusing the sacrum?

Yes. Unless you're a contortionist, there is relatively little motion in the thoracic spine. Here's an xray that demonstrates where reverse bending comes from:
Spine Bent Backward (https://www.google.com/search?q=bending+spine+xray&rlz=1C5CHFA_enUS506US507&source=lnms&tbm=isch&sa=X&ved=2ahUKEwi4rY7A8MrmAhVzFjQIHdfCAOkQ_AUoAXoECA0QA w&biw=1576&bih=833#imgrc=ve2KYPUieE274M:)
And, here's an illustration of a spine bending forward:
Spine Bent Forward

JScoli91
12-22-2019, 10:22 PM
Is it then inappropriate for someone as young as myself (28) to have their entire lumbar fused irrigardless of pain even if we knew the curve and/or deterioration would increase? If this type of procedure is in my future eventually anyway is it better to accept the resulting limitations now for the rest of my life to avoid increasing pain in the future, increasing deterioration, etc.?

LindaRacine
12-22-2019, 10:38 PM
Is it then inappropriate for someone as young as myself (28) to have their entire lumbar fused irrigardless of pain even if we knew the curve and/or deterioration would increase? If this type of procedure is in my future eventually anyway is it better to accept the resulting limitations now for the rest of my life to avoid increasing pain in the future, increasing deterioration, etc.?

Sorry, no one can make that decision for you. You now have all the info regarding pros and cons, and only you know how debilitating your pain is, and whether you can delay the bigger surgery.

--Linda

JScoli91
12-22-2019, 11:01 PM
Iím sorry Linda if I have been a pest or annoying. I know nobody can make the decision for me, I guess I just wish there was either validation or rejection of the part of me that feels ďno the vast majority of my pain isnít truly debilitating, but if the larger fusion is going to happen no matter what, I would rather get all the hurting and pain and risks of surgery done with all in one go instead of taking the piecemeal approach.Ē

Pooka1
12-23-2019, 05:54 AM
If the surgeon has some reason to believe just fusing L5-S1 can buy you time then I think you should consult the tethering surgeons about whether you are a candidate in order to buy more time until the rest of your lumbar needs fusing by creating a better alignment.

The problem though is the unknown unknowns given only a handful of adults in your age category have been tethered and almost certainly none of them are patients with a T fusion plus an L5-S1 fusion. But it wouldn't hurt to ask them to speculate.

The other problem is I don't know whether the adults being tethered are being tethered for progression or pain. If just for progression, it may not address pain.

titaniumed
12-23-2019, 11:31 AM
I guess I just wish there was either validation or rejection of the part of me that feels ďno the vast majority of my pain isnít truly debilitating, but if the larger fusion is going to happen no matter what, I would rather get all the hurting and pain and risks of surgery done with all in one go instead of taking the piecemeal approach.Ē

I can understand this.... Actually, there was no doubt that the works had to be fused in my case. I was also age 49 and I knew I had to get things done....The thing is that you are 28. I dont think there are many stacked ALIF patients that young.... The stacked ALIF addresses the front, and the back, gives room to get in from the front and clear out all the disc material around the cord, partial corpectomy, bone spurs, etc. Its the full engine re-build. Its also a strong fusion as it fuses front and back. There has to be some sort of advantage over TLIF even if Dr Lenke doesnt do them. Thats the big question I would have for Dr Lenke. In my case it solved all the problems. I do not think I will ever have any more lumbar problems ever.

The pain can be fought. I did that, it was a 6-1/2 year battle and it was also expensive. Very expensive. You boil in a hot tub, do a 2 hour massage, get out of pain, pay the bill, get in your car and 4 seconds later its BACK like a light switch. On or off. And then you have to drive home. I drove fast in those days.......This didnt happen much, but these kinds of events solidify the pain decision. At the end of my 6-1/2 years battle, my efforts at pain control were not too effective. I had less and less success with non-surgical methods. I was also about 10 years too late on my surgeries.

I "do" have the comedic answer for your wiping question....Sometimes the comedic answer is truly called for. I was going to say I have long arms, and that "long reach" is needed, but Linda has long fingers so now I have to re-think the joke. Ha ha If we took a long 3 hour walk, 1 hour of the walk would be jokes. Learn to joke, it keeps you sane.

With all these questions, there are answers, but if you are going to walk in, you cant be worrying about too many specifics. I do not keep looking up at the sky looking for asteriods to destroy the planet. I also did not worry about aorta and vena cava ruptures. All the Male related ALIF complications did not happen to me.....The plumbing works fine. Fine and dandy. Well.....maybe not overly dandy. Fine on Monday, Dandy on Tuesday. What the heck is dandy? (smiley face)

Peripheral nerves heal....
https://en.wikipedia.org/wiki/Peripheral_nervous_system

Linda, my e-mail is my username using a hotmail account. That test is great. We should post it with the description in the title for future searches. Searching around here can take a whole bunch of time, for sure. The search words or keywords have to be right.

It would be nice to have an answer on the lumbar tethering question. The one thing about tethering the lumbar is the forces. They are MUCH higher in the lumbar. I dont know if a double tether would work, or if its feasable with degenerative conditions...??? Or multiple degenerative condition on multiple levels? The articulation figures in the Moe handbook state the highest values for lumbar. Roughly 25 dergees per lumbar level. Hard to believe but true. Look at contortionist's and what they do and you can see.

Ed

LindaRacine
12-23-2019, 11:56 AM
Iím sorry Linda if I have been a pest or annoying. I know nobody can make the decision for me, I guess I just wish there was either validation or rejection of the part of me that feels ďno the vast majority of my pain isnít truly debilitating, but if the larger fusion is going to happen no matter what, I would rather get all the hurting and pain and risks of surgery done with all in one go instead of taking the piecemeal approach.Ē

Sorry, I didn't mean to imply you were a pest or annoying. I tend to be short and honest, at least at times.

Whatever you decide, there's no rush. If I were you, I'd take a little time to ruminate on all I'd learned. It really is your decision. I would try not to let others opinions have any effect on what you decide. Even your family. Perhaps it would be good to start a list of pros and cons, to see if one decision makes a lot more sense than the other.

--Linda

JScoli91
12-23-2019, 10:25 PM
Linda, I have been meaning to do a pros/cons list for both options but with running around after a 2 year old, making sure he doesnít accidentally maim the 6 month old, AND run a dairy farm, a pros/cons list ends up on the back burner pretty quick especially when Iím exhausted and in pain at the end of the day. I really need to do it though, get it all down on paper and add to it as I continue to think about things. That way when i revisit the topic I donít have to rehash what I already have listed out on either side.

I guess itís the finality of fusion that is the scariest for me. The thought that I could potentially make the decision of a full fusion which makes sense to me before having it done and the fear that I would come out of it on the other side wishing I hadnít done it but not able to go back...would there be an easier or less-difficult way to take a poll of some kind as to how old or young people have been when they have had a full fusion? Could I also get your questionnaire?

JScoli91
01-13-2020, 10:09 PM
We just got done with a second opinion by Dr. Bransford at UW Medicine Harborview Spine Center in Seattle. After talking with him it doesnít sound like itís the progression of the lumbar curve that concerns him as much as the rotation of the individual vertebrae. He does not see this ceasing in the absence of fusion.

He said that if we are to go down the road of revision surgery it would have to be for the entire lumbar and that fusion of just L5-S1 is not sustainable and would not bode well for other vertebrae. I asked him if he were to perform the surgery what his method would be and he said he would do everything in one table session providing minimal blood loss etc. (the first surgeon said 2 separate procedures), he would only replace L4-L5 disc and L5-S1 disc anteriorly (first surgeon said all lumbar discs) and the fuse with rods from T10-S1 posterior (first surgeon said T12-S1) and then SI fixation.

I guess now itís a matter of the mathematical equation of when itís good for me, our kids (2 and 7 months), work (family dairy farm), etc. I know for sure I want to be through the meat of recovery by the time our kids have their birthdays (May and June) and if I were to press the go pedal on surgery now the second surgeon said he would have me in by the end of February.

titaniumed
01-14-2020, 09:20 PM
I had severe rotation in my curves.....I also have a CT that shows the rotational correction after my surgeries, let me know and I will post it.

What do you think now? Keep it local and do the full ALIF?

Ed

JScoli91
01-14-2020, 11:03 PM
Itís hard to explain but both my husband and I feel more comfortable with the surgeon in Seattle. We made the phone call earlier today to commit to the surgery with the surgeon in Seattle. 1 he is a spine only surgeon 2 he does way more fusion and scoliosis cases than the more locally located surgeon. I am still terrified about surgery but when I subtract all the fear and anxiety out of the decision making process, all roads seem to me to lead to doing it now instead of later is the more logical decision.

I would rather be limited in flexibility and range of motion by this surgery and after recovery be limited and pain free as opposed to not doing the surgery and being limited BY the pain, especially with a 2 year old terror and a 7 month old who will be toddling around before we know it.

What do you think? Itís looking like it would be either end of February or early March which means the meat of the painful recovery by the time the kids birthdays roll around (middle of May and middle of June).

Long term after a fusion down to the pelvis can most people wipe themselves still? I think that is one of the limitations I am most concerned about potentially having long term.

titaniumed
01-15-2020, 07:47 AM
I see....The surgeon in Seattle will probably TLIF the T10-L4 Levels. And ALIF the bottom 2 levels....This spares the large anterior incision. Did you ask about BMP and or auto graft? What will he use?

Establish communication with your surgeons nurse or PA. Do this by e-mail for questions. When asking questions do only 2 or 3 questions at a time, since some answers are hard. You will get simple short answers since these people are extremely busy. Let us know when you get a date.

All of us go through the fears....we walk in like zombies and get it done. After the experience, it seems that revision patients have all the bravery in the world. Learn to breathe!

The first 6 weeks can be tough. (For adults age 50) You will probably do much better since you are 28....I wouldn't plan on doing too much at all for the first 3 months. Unless you are calling the cows with an accordion. Remember, no BLT's No Bending, lifting or twisting for a LONG TIME. Most books will average out and say fusion takes 12 months. babies heal in 2 minutes and seniors take forever to heal. You are younger so you should heal up in a few months. Age plays a part in the healing process.
https://www.youtube.com/watch?v=CMCIEtC-tJk

The immediate recovery includes the weaning process. Weaning off Oxy or Percoset. This is probably the hardest part. You will get constipated and opioid constipation hurts like heck. It overrides the spine pain. I would ask about controlling pain in general. Try not to plan on a long term opioid process....The faster you get off, the happier you and your surgeon will be. You will have pain, and push past pain in your recovery.

Wiping takes the "long" reach. I was also warned, but it wasnt a concern since my pain was mind blowing. You will adapt. If you cant reach, they have wiping aids. They have devices for everything these days. I dont use any devices at all anymore except pillows when I fly on airplanes. I put 2 soft down pillows in a carry on bag.

My comical answer on wiping included going down to the car wash and hanging on the hood. You know that large brush that does the top of the car? It doesnt miss. (smiley face) (Full fusion humor)
Learn to laugh more. Comedy helps alot. When you laugh hard for some reason there is no pain. Amazing how that works.

Your surgery is about you...I know its hard to have kids and do these things, but you cant be worrying about anything else doing a recovery. No cleaning, no shopping, no farm, no nothing. Concentrate on healing yourself 100% since we only have one chance to do these things.

This time is for you.

Ed

JScoli91
01-15-2020, 09:41 AM
Thank you Ed for your thoughtful reply. I appreciate it so very much. I guess the big hurdle right now is making sure insurance approves the procedure through this surgeon in Seattle even though we have another surgeon closer to home that is willing to do the procedure. Does insurance usually get picky like that?

JScoli91
01-15-2020, 09:49 AM
As a follow up Ed, he hasnít mentioned specifically yet whether it which bone sources it will be. I was so overwhelmed and nervous in the office that I had a hard time remembering all the questions I had. However, he is really good about calling and emailing back whenever you have questions. All in all, a top notch surgeon it seems so far. I know that once the ball gets rolling he also wants me to have a CT Myelogram, apparently I have hyperreflexia on top of all the scoli issues, any thoughts there?

titaniumed
01-15-2020, 12:36 PM
Thank you Ed for your thoughtful reply. I appreciate it so very much. I guess the big hurdle right now is making sure insurance approves the procedure through this surgeon in Seattle even though we have another surgeon closer to home that is willing to do the procedure. Does insurance usually get picky like that?

Surgeons usually have pretty good insurance people working for them as they want to know about getting paid.... This really comes first. Direct your questions through them. I dont know what kind of policy you have but they will know.

I changed my primary care physician to my scoliosis surgeon. That way I had him directing all my medical moves and skipped all the visits through my GP. Seems kind of crazy to go visit your scoliosis surgeon only to have them tell you you dont have permission from your GP.

You will want to be sure about all your co-pays. My last MRI co-pay was a shocker. That will NEVER happen to me ever again. Always be clear about this before hopping on any diagnostic tables.

Ed

titaniumed
01-15-2020, 12:42 PM
I have hyperreflexia on top of all the scoli issues, any thoughts there?

Who diagnosed you with this?
https://en.wikipedia.org/wiki/Hyperreflexia

Did you have a spinal cord injury at some point?

Ed

JScoli91
01-15-2020, 01:02 PM
For as long as I can remember I have always gotten the comment that my leg reflexes are really abnormally strong but it wasnít until I saw this surgeon in Seattle that I saw it specifically stated in his report. I got a message from his office that before he develops a formal surgical plan to submit to insurance he wants me to have a CT myelogram. Pretty standard before a fusion procedure or is that because of my reflexes?

JScoli91
01-15-2020, 01:02 PM
No spinal cord injury in my past from what I my husband or my parents can remember.

JScoli91
01-15-2020, 01:06 PM
Besides my leg reflexes the only other response that I have been told is odd is my response to cold. When I feel cold I donít just shiver like normal, my whole body jerks and has a spasm pretty much. This started about a year or so after my first fusion. I have had plenty of imaging done of my whole spine over the years in all kinds of modalities so I would assume that if it is something with my spinal cord someone would have seen something by now right?

titaniumed
01-15-2020, 07:13 PM
he wants me to have a CT myelogram. Pretty standard before a fusion procedure or is that because of my reflexes?

He is suspicious of something and wants to take a look....he might look up high into the neck.

I didnt have a CT done for my scoliosis surgeries, but I had one done 7 months before looking for stones which was at the radiology dept at the same hospital. I cant answer your question but Linda would know. I have had 2 CT's looking for stones, kidney and gall. I lost my gall bladder after my scoliosis surgeries. Its a rare complication of scoliosis surgery.

I have had Iohexol and Invisiplaque used as contrast agents in the past.

Ed

JScoli91
01-15-2020, 07:24 PM
If he found something on the CT possibly related to my spinal cord would that necessarily delay fusion or change the game plan do you think? Itís not like scoliosis can cause hyperreflexia right?

titaniumed
01-15-2020, 07:46 PM
Besides my leg reflexes the only other response that I have been told is odd is my response to cold. When I feel cold I donít just shiver like normal, my whole body jerks and has a spasm pretty much. This started about a year or so after my first fusion. I have had plenty of imaging done of my whole spine over the years in all kinds of modalities so I would assume that if it is something with my spinal cord someone would have seen something by now right?

I also have the occasional jerks, stings, and pain yelps. Not like tourettes, but I guess I could have some fun with that....Ha ha

CNS patients can be sensitive to hot and cold. I cant handle the cold anymore and proving this out by hanging out in Colombia as the weather here is perfect. Its better than Hawaii. Its so ironic that a lifelong skier ends up this way. Its ok, I have had enough powder skiing. I also do not like hot weather anymore, I melt instantly.

I cant say if anyone has seen anything wrong with your spinal cord or not. If its not conclusive, a doc might not say anything afraid of scaring you....

Its all about our brain and our spinal cords. Our CNS system....Encased in our skulls and in our crooked spines, it runs things. Mess with it and you have problems.

Let us know what they see. If you request your CT's burned to disc, please be aware that radiologists report EVERYTHING THEY SEE. So dont be alarmed if they see things that dont matter. I have all sorts of things in my reports and its nice to know. Who is perfect? Not many of us.

We do the best we can with what we have....

Ed

LindaRacine
01-15-2020, 10:09 PM
He is suspicious of something and wants to take a look....he might look up high into the neck.

I didnt have a CT done for my scoliosis surgeries, but I had one done 7 months before looking for stones which was at the radiology dept at the same hospital. I cant answer your question but Linda would know. I have had 2 CT's looking for stones, kidney and gall. I lost my gall bladder after my scoliosis surgeries. Its a rare complication of scoliosis surgery.

I have had Iohexol and Invisiplaque used as contrast agents in the past.

Ed
I'm sure it varies by surgeon. At UCSF, I think it's protocol to get a CT scan if the patient has any radiculopathy (arm or leg pain).

titaniumed
01-16-2020, 08:01 AM
If he found something on the CT possibly related to my spinal cord would that necessarily delay fusion or change the game plan do you think? Itís not like scoliosis can cause hyperreflexia right?

Its up to your surgeon....

Tough question.... Some of us can have our game plans changed in different ways.....maybe not so much scoliosis patients but anyone that has any sort of neurological or CNS issues. There are so many different things that can happen that its hard to answer a general question like this. If I were a doctor, I would probably go into overload thinking about the multitude of things that can happen to the human body. Ask Dr Beven or any specialist and you can watch the smoke come out of his or her ears....Questions are easy, and answers can be difficult or impossible to answer. My Goddaughter is a doctor and will be a ped trauma "lead" surgeon some day if she ever stops going to school. (never happen) (Its been 16 years now) Anyway, she hates questions (from untrained laymen) (meaning myself) and I can see how it throws her mind into overload. She will be a 4 minute doctor, 4 minutes to save a childs life. Intense focus. Some day, I will get to see her work in an ER room.....and I will stay out of the way.

For example, if you get a virus, it can change things overnight. Which virus? Hopefully its one they know about, and if they have identified it, they dont have an answer....

They thought I had cancer, they did exploration, and guess what? No cancer. Im still here. (BTW, FYI, they have cancer detection pens now) Did you get all the cancer? Yup. Good answer.

Our bodies are complicated. Really complicated. We go in and do these surgeries with no guarantees. Most of us come out good otherwise they wouldnt be fusing us. Remember the Hippocratic oath, Do no harm. (and no cutting for stones unless you are trained) Trained in 400BC? Wow! Stones have been killing people since the beginning of time. Drink your water, it dilutes. Thats been proven.

I made my decision only after my surgeon told me "It will help"

I had to take that chance. Many of us have to take that chance. Its what we all have in common.

And we are trusting brave souls......

If you trust your surgeon, tell him you trust him. It helps.

Ed

JScoli91
01-16-2020, 11:07 AM
I trust him very much, especially the hospital and the experience it has and the accreditation for being one of the best if not THE best in our area. I guess after making the decision to commit to having this done I am still confident I am making the right decision but I am also very terrified. I guess my biggest fear is that I would have this fusion done only to find out afterwards at some point that the pain that I am feeling now, before surgery, still persist after surgery and I am left asking, "What did I do that for?" and not have the ability to take it all back. I guess its nerves and anxiety now that make me keep thinking, "Man I sure hope the costs and what I am giving up in terms of flexibility and range of motion, sure are worth it after its all said and done."

Does any of that make sense?

titaniumed
01-16-2020, 09:52 PM
Of course.... We are all terrified, its the hardest thing we ever have to do in our lives especially with the possible complications that can happen.

If your going to go in and do this, you just cant think about complications. There are a whole host of things that can go wrong, which ones do you worry about? You have to put the horse blinders on, stare straight ahead, and concentrate on the goal which is healing and being pain free. Neuropathic pain is devastating and disruptive. Sometimes there is no alternative but invasive surgery. I didnt have a choice, and I dont think you do either, so that leaves timing. Now or later. You cant be lifting anything for a long time. I walked on eggshells for around 9 months taking it real easy because I didnt want to disrupt the healing process. If you disturb your fusion, its like having a cut on your finger and hitting it with a hammer. It will eventually heal, but will take longer. We only have one chance to do these surgeries so you want to make sure everything goes right. No lifting, no falls, no car accidents, just a slow smooth perfect recovery. You wont speed your recovery up by trying to walk a mile, all you so is inflame your soft tissues. These surgeries teach patience. You will do a lot of walks. Short walks, multiple times per day to distribute blood and its nutrients into healing zones. Triggering pain send us back to bed, and on meds we sleep like cats. Undisturbed sleep becomes extremely valuable......and you need 8 hours of sleep, so your going to be battling pain and be really tired all the time.

I dont have any problems with lack of flexibility. Its adaptable. It makes no sense fighting this as we dont have a choice. You will figure everything out. I started my shoe tying stretches at around 8 months using a stool. It took about a month of hanging my arms down. Not pulling because you can trigger a soft tissue injury. NSAID's are a must to have on standby for this, but only after your surgeon gives you permission "after" you are fused. NSAID's can inhibit the fusion process, but are wonderful and necessary as a fused scoliosis patient.

Your young so you do have the advantage when it comes to healing.....I used hot water soaks for pain. I would not have made it without my hot soaks. 106 degrees F. Measure it with a pool thermometer. The tub needs to be large enough to stretch out and float. A regular old school bathtub will not work. It has to be an oversized tub.

I cant type anymore....too tired. Tomorrow is another day...

What did your surgeon say about your SI joints?

Ed

JScoli91
01-16-2020, 10:25 PM
Ed your replies are truly invaluable and are a real confidence boost, truly. Thank you so much. This surgeon mentioned fusing my SI joints as part of the procedure but didnít say anything more about them besides that, unlike the first surgeon we spoke to who said he sees degenerative arthritis in both sides but more so in the right side. The SI screws canít ever come loose can they?

Your right Ed, I donít have a choice itís only a matter of time. I thought in the beginning I was insane considering this revision at only 29, almost 30 but then I realized that even though I am young in comparison to the average age of a patient having this done, I have my age on my side and will hopefully heal faster and get back to ďnormalĒ faster, whatever that looks like.

What I did find interesting is that this surgeon said that this revision and immobilization of the lumbar will not have negative/degenerative impacts on my hips or my shoulders or neck necessarily. Do you think this is correct? To me it seems once you start immobilizing areas from movement and flexibility the pressures and forces to those areas are not absorbed but instead differed and relayed to the next joint or area. Right? I guess what Iím getting at is, is it logical to surmise that the younger you have this revision done the younger you will be to possibly need hip or other joint repair/replacement?

jackieg412
01-17-2020, 06:41 AM
Good morning. I'm just going to address one of your concerns and that is about your other joints and fusion. I have been told many times that the full spinal fusion leads to other joints being impacted. In my case that has proved to be true. But so far the areas are managed with exercise heat and injections. I don't know how to compare between fused patients and non fused patients as far as impact on joints.
As Ed said you can just do your best.

titaniumed
01-17-2020, 07:40 AM
Before I forget, UW has videos. Scoliosis videos. You might find these interesting since you will be operated on there.
https://www.youtube.com/user/UWTV/search?query=scoliosis

Funny, in one of the videos, the camerman pans around and my surgeon is sitting in the audience.

Glad you appreciate the posts. I do this because many years ago when I was a kid, there was nothing. No internet. Just 2 cans and a wire. Ha ha I thought I was the only one with scoliosis 45 years ago. To face major deformity surgery is alone is daunting.

I do try to blow out a lot of information as fast as possible and its usually when I am tired. In the mornings I trade online so pretty busy when things are running. Like right now the markets are on fire.

When it comes to wearing out joints, I think I have made a good attempt in skiing and doing hundreds of thousands of jumps off high cliffs. But I still have my hips and knees and ankles. They can hurt pretty bad sometimes, but I have not required any replacements. (Yet)

There is ASD Adjacent level disease or Adjacement segment disease which can happen....do a google search for info. Having trouble with translating to English from Spanish and all tecnical literature is mostly done in English. I have to translate just about everything down here.

Full fusion can affect ones gate. Sometimes, when I have a soft tissue problem and in pain, I can walk like a bulldozer on large rocks. In other words, not smooth. When things are good, you cant tell I am fused. If your gate is affected severly on a permanent basis, I would imagine that other joints will take a beating.

But this doesnt necessarily mean replacement.....As usual, there is no specific answer.

Ed