T10-pelvis tomorrow morning

[titaniumed]

I think I am pretty well plumb without any lean front/back or side to side. My husband swears i have gained a few inches in height also. Right now now PT has been ordered and the only thing they want me to be doing is rest and walking. I guess PT will be ordered at about 2-3 months once we see successful fusion starting especially at L5/S1.

My next few questions are about pain meds. I was taking 6mg dilauded every 4 hours along with a dose of flexeril every 8 hours. Since being home (almost 2 weeks now) we have started to decrease the dose of dilauded. I am currently down to 3mg dilauded. Is there a certain method used when starting to wean off the narcotics/opiates for pain? My husband seems to think even at 3mg it’s still a high dose of dilauded and he thinks I should be getting off all pain meds except Tylenol within the next week or 2. Thoughts? Comments?

Very good, very good, very good....wait on PT ok.

It's going to be best to call your surgeon on the meds. Your probably due for some x-rays anyway....they do like to look to make sure the implants have not moved, and look at other things, you would be surprised what they can see, x-rays are not just about bones and hardware. I would also bet he will want to look at your scars.

Most doctors or at least specialists can just size a person up in 30-60 seconds. They diagnose just by looking at you. Dr Dean Brooks from the movie One Flew Over the Cuckoos Nest (1975) diagnosed Harding (William Redfield) with leukemia during filming. He gave him 18 months and died pretty much to the day.

The interview scene in the beginning of that film was ad libbed between the Dr Brooks and Jack Nicholson. One take with no script. Cinematic history! That's why Jack makes the big bucks. (smiley face) The Doctor was great also. He was a Psychiatrist....
https://en.wikipedia.org/wiki/Dean_Brooks

Since your only 18 days, I would imagine it's not too much of a problem weaning...this is a good question. People on opioids long term will probably have more of a struggle weaning. Spacing out times on taking meds is probably the easiest way to reduce. That's why we keep notes! It's impossible to remember these things.

One thing that happened with me was upon termination, the pain shot up. It was hard for a day, then it improved quickly after that. I had to do it twice, it took me 2 attempts. I guess it was a "Hollywood" type of pain, not quite "The Exorcist" but close.... I get a kick out of using the term Hollywood in describing pain. ha ha I think Linda Blair got scoliosis from that film. I think many of us did back in those days. (smiley face)

How is the pain? Is your pain lower, or the same? How is the walking pain? Any improvements?

Ed

[JScoli91]

Very good, very good, very good....wait on PT ok.

How is the pain? Is your pain lower, or the same? How is the walking pain? Any improvements?

Ed

The pain so far is much better than when I was in the hospital. The pain feels more like stiffness/soreness instead of sharp shooting hardware on bone pain. When I walk though I definitely feel a large amount of stiffness in my pelvis, not my hips obviously since those weren’t touched, but in that general area.

I have an appointment with my surgeon / PA on Friday. I know for sure they want to take staples and sutures out that day and I hope they shoot some films to take a look at things, I have a genuine curiosity.

So would you say that in weaning off medication spacing out the time between doses is a better way to go compared to using the same spacing but decreasing the amount?

[titaniumed]

One of the things that happens and has been reported here for lumbar stiffness after scoliosis surgery to the pelvis is something that has been called "the planks". It feels like a 2 x 6 in your lumbar and pelvis, very stiff feelings, almost like contracting soft tissues, but not intense like a spasm. It's just best to lay down when that happens and take a load off. I had these a few times, they can be overwhelming I guess. In time, these should drop off as you heal. It seems there is no trigger and hard to figure out why they happen. Simply laying down as scoliosis patients solves a LOT of problems. Before and after surgery. Its why I have owned RV's for 18 years now for traveling purposes. The bed in my rig is set up perfect!

I forgot about the staples....and your due. I probably had at least 150 staples front and back. No biggie on the removal, it just takes a bunch of time. When you go in, ask for the digital copies of your x-rays burned to disc. Get them. These records we have are important, X-rays, MRI's, and CT's as scoliosis patients, we pay for them, they are our property, doctors will throw them out when they retire, and they are very handy down the road if something should happen. Surgeons are usually pretty good at giving us our records. If you shoot a set of x-rays, just ask. It's our artwork.

Doctors can give you a smaller dose of a med, you can cut them (with permission only) or you can space out your times. I don't think it really matters how you accomplish this as its pretty much the same....depends on fast acting meds and so forth. Only your surgeon can decide how to do this. I would have your surgeon do this (weaning schedule) since they know the most about scoliosis. I had taken certain NSAID's through the years (for herniations) and had my surgeon tell me they did help, but they were not the "best" choice. (For an NSAID) Remember, you can't take these for a long time, they can inhibit fusion. You have to wait. Many of us elder scoliosis patients have our stockpile of prescription NSAID's in case of pain emergency. In with the fire extinguisher, break glass when necessary. Celebrex, Diclofenac, Naproxen Etc.

Since you have kids, keep all your meds up high, out of sight, and out of reach. (In the bathroom) Keep them in a gun safe is best. I would not let them even see the medications at all.... Monkey see, monkey do.

Much of the literature will state that fusion takes a year. 12 months. I think it's best to remember as a "general" rule....some will fuse quickly and some wont fuse, hence broken rods.

You can have your surgeon determine fusion by CT and x-ray at some point.....integrity is another factor. Concrete, or cheese cake? You see, it's not like you get released and join the Olympic weight lifting team.....You know what I am saying here...Keep things moving with a 1# weight restriction. (For now) Dinner plate is the most you can handle. Walking is our thing. Your still extremely early on healing.

Be careful on the COVID thing. It would seem to make sense to call on the phone when you get there, stay in your car in the parking lot, have them call you and only enter the building when necessary. I don't think it's wise to sit or hang out in a waiting room full of people. Let us know how this all works out.

In order to judge what has happened with your surgeries will take at least a year. The healing pains and stiffness will all change in time. It's a multi year process for those over age 50, your testimonials are important since you are 29. I wonder how you will be doing soon, if it's the age, or the XLIF's, or a combination of both. Remember to be patient for now because there will only be improvement ahead.

Ed

[JScoli91]

My first post op appointment is this Friday, in 2 days, so I am keeping my fingers crossed for good news. One question though, when sitting upright or slightly reclined in a recliner, my upper back is flat against the chair but my lumbar is not due to artificial lordosis from the rods. Right now in this position muscularly I feel fatigue pretty quickly, is it safe to assume that as my muscles adjust and everything heals that this feeling will cease?

[titaniumed]

Sounds familiar....Been there, do that. Not been there done that, been there do that. Sounds like a Captain and Tennile song from the 70's. Do what to me one more time? (A little joke for the older members here...Ha ha)

I am good in a recliner for about 20 minutes, then start to get fidgety... After an hour, I can't take it anymore and have to stand up. Modern furniture just doesn't cut it for me and I do not sit in my living room anymore. Its either a good office chair, or bed, or just a regular old school chair.... You could try experimenting with some really soft pillows for lumbar support...after about a year you will toughen up. I don't know what it is, muscular scar tissue fatigue?..there is a need to move and change positions often. We are kind of like sharks that have to keep moving. (With the exception of reef white tips) They lay on the sand and sleep during the daytime. (Don't worry, they don't bite) Many here have mentioned the difficulties of modern furniture that lack lumbar support. (Even after fusion surgery)
https://en.wikipedia.org/wiki/Whitetip_reef_shark

There is nothing like an unfused spine, but we have to do what we have to do....We all are so thankful when we are saved by our surgeons, to be hit and run over by a bulldozer and come through with the complexities and unknowns of medical science is just incredible. Its something I think about every day. A lot of people take their health for granted, its only after you have been saved that you are truly thankful. Even on pain days, there are tears of joy. I am one of the luckiest here on this forum and so will you.

I can't say how you are going to do with the fatigue, and I am quite interested in how you do with this. I am very interested in how your recovery pans out since I was a surgical candidate when I was 16. I always wonder about this since young fusion patients do so well. It's funny, you don't talk about your thoracic fusion at all at age 13, it's as if it never happened. What happened, did you recover in 2 weeks and forgot? Is it age 13, 2 weeks, age 50, 2 years? Incredible.

You are our youngest full fusion "pelvis patient" here at age 29. Linda might know someone, but I don't. Certainly not any members here, or on the old British forum.

I think you are good. You haven't reported anything unusual.....You make it through the first month without any oddball surprises, your almost out of the woods. I use the word almost because I lost my gall bladder at 15 months.(no biggie) Probably from being NPO. We need fat to stimulate the release of bile from our gall bladders, otherwise it stagnates into stones. If your NPO, no food by mouth, there is no fat. Thanks goes to Karen Ocker for explaining this to me years ago.

Your x-rays will probably look similar to mine other than the attachment points to your thoracic rods. If you do post these, post on the NSF server and not a photo program. This way only members can see them here. Your surgeon will probably point out a few things, and of course he will be looking at your spacers...If you need help with the system, I can post instructions. I have done this and its on the server someplace. The problem is finding it. Try "Attachment instructions" for a search.

You will also have the 3 triangular shaped rods on each side of your SI joints. My surgeon contributed to this SI implant design...There is a video of him talking about this.

Let us know...

Ed

[jackieg412]

Yes the sitting problem. It seems to be common. Sitting is always the hardest. I usually remain standing almost every where.
I am not find it being in a car. It can be difficult so long rides or long air flights are cause for concern.
Sometimes I just stand to eat as all I will do is the up and down thing. No long lounging over a good meal.
Or as Ed said, you just have to move.

[LindaRacine]

You will also have the 3 triangular shaped rods on each side of your SI joints. My surgeon contributed to this SI implant design...There is a video of him talking about this. et us know...

There are a lot of different SIJ implant systems. Not all are triangular shaped rods. For example: https://orthospinenews.com/2020/07/2...ase-treatment/

[titaniumed]

There are a lot of different SIJ implant systems. Not all are triangular shaped rods. For example: https://orthospinenews.com/2020/07/2...ase-treatment/

Your right Linda, I see that system is new. No patent, or "pending", no FDA approval, prototype shaft and handle from aluminum in photo.....(protos are usually done from soft materials)

The amounts of hardware in the orthopedic world is mindboggling these days! The associated tooling used for some of the systems is also incredible, especially on the Synthes system I have. They have to charge for all of that through each screw. The engineering work and the whole process involved is brutally expensive. Many times they will proto through to failure which is a complete disaster especially if they have to re-invent the wheel. Make mistakes with the FDA during an audit, and they can make you purge and destroy all stock. I saw this happen here locally and we were saying wow for days. I was a supplier to this company back then. Knee related tooling, not implants. Years and years of work. That company also sold at that stage.

If Jessica posts, this will be the first SI x-ray fusion I have seen here. I can't remember if Spinals posted hers. ???

Searching is difficult unless you use a "logical" search title, have a tag, or a hint. I have searched here for things only to give up after my eyes started bleeding.

Ed

[titaniumed]

Yes the sitting problem. It seems to be common. Sitting is always the hardest. I usually remain standing almost every where.
I am not find it being in a car. It can be difficult so long rides or long air flights are cause for concern.
Sometimes I just stand to eat as all I will do is the up and down thing. No long lounging over a good meal.
Or as Ed said, you just have to move.

I have to say that in my case, as far as sitting goes, scoliosis surgery did help. I had no choice. Many of us have no choice on scoliosis surgery.

I think back to my unfused days and have trouble remembering exactly what happened. I do remember some things like standing up on all my flights (back by the bathrooms) before it wasn't so critical back in the old days. Now, you get 6 peanuts, and they don't have pillows on the plane.

I also had a LOT of trouble sitting in the car with the brutal brutal sciatica. That one is hard to forget regardless of memory failure. (smiley face)

I became pretty good at forgetting specific scoliosis pain events. This is probably a good thing.

I hope you are hanging in there Jackie

Ed

[Tina_R]

The pain so far is much better than when I was in the hospital. The pain feels more like stiffness/soreness instead of sharp shooting hardware on bone pain. When I walk though I definitely feel a large amount of stiffness in my pelvis, not my hips obviously since those weren’t touched, but in that general area.

I have an appointment with my surgeon / PA on Friday. I know for sure they want to take staples and sutures out that day and I hope they shoot some films to take a look at things, I have a genuine curiosity.

So would you say that in weaning off medication spacing out the time between doses is a better way to go compared to using the same spacing but decreasing the amount?

You're seeing your surgeon 3 weeks after your surgery? I'm jealous.

Mine didn't want to see me until 2 months after my second surgery. And it's been many months since that visit and no word from them. Covid-19 is the reason given for putting things off.

[JScoli91]

Alright everyone, first post-op appointment today went well. Started by taking out 75 staples combined between 4 incisions. I still have sutures in until next week on my posterior incision just to make sure it closes as it should. All wounds are free of irritation and infection and healing seems to be going right on track.

We shot a few x rays today and all hardware looks good! No signs of moving around at all or any failure! YAY! Still too early to tell how the actual fusions are shaping up so that will be analyzed at an appointment in September. My weight lifting restriction has been increased from 5# to 20# with the caveat of “listen to your body” of course. I am free to roam about at home brace free but if I go outside or anywhere else to still wear it religiously as well as keep wearing the bone growth stimulator as prescribed (2 hours per day every day). The PA who was involved with my surgeries said everything looks good. We got a good amount of correction even though there will always be rotational deformity. I told him, “I am totally fine with outstanding rotational deformity as long as we are certain that it or the curves will not continue to increase.”

Overall good news and things look good. They said to not worry about tapering off the narcotics or at least don’t feel like I need to rush it. They did say to supplement with Tylenol as needed.

I have attached X-ray photos for interest.

[titaniumed]

Jessica, Congratulations! You have had quite a smorgasbord of spine procedures, including desert!

Just looking at the pre revision x-rays once again, you had the train wreck happening for sure which was only going to get worse and I don't think you had a choice. There are always thoughts of justification when we do our surgeries. We always think, was it worth it?

I am guessing they explained about the radiopaque markers on your PEEK spacers which are radiolucent. Those are the 3 or 4 vertical white lines that show up so they can see the position of each spacer. The L5-S1 spacer is not made of PEEK since it is clearly visible, chances are it's probably a titanium spacer. I wonder if they used BMP on you? These would be Medtronic Infuse Kits. BMP acts as a catalyst in growing bone. Its indicated when we have DDD. I don't see the SI hardware but the images are cropped and I am going blind these days.

One way to find out if you are interested is to go to hospital Admin or the records division and get a copy of your hospital reports. You will probably have to pay a small amount for them, (ink and time is expensive) mine are about 50 pages written by approx 10 doctors. I have been through them about 10 times. These also are important surgical records for the future. (If the hospital goes bankrupt, surgeon retires, or if you move) This happens more than you think.

I have to comment about "listening" to your body. Bill Engvall, "It's your sign" Oh God, not again...Sometimes our signs or pains can be quite alarming. When pain hits, think of Bill and try to laugh some...it does help.

Every single time you go to the doctor in pain they ask "What happened?". Usually, you will know what you did, but there are times when you don't know. I have had this happen multiple times....When I destroyed my lumbar discs in Jan 2002, it was on a really hard landing skiing down some large pillows. (30 foot drops) I know, dumb. We all do dumb things. Anyway, no pain resulted, I thought I was good until 2 weeks later, the pain hit with a vengeance. It seems that the discs upon injury needed time to inflame, extrude, or protrude, onto the spinal cord. I had 4 lumbar herniations diagnosed by CT at age 43. Sigh...This produces high pain levels.

And it probably doesn't matter too much "when" pain hits, or a rod break happens weeks or months later, but the thing is that until we heal, the acid test of fusion occurs only after certain events have passed. At 10 months in the Redwoods, I tripped over a 30" tall sharp rock (At night, no flashlight) (again, dumb) and faceplanted hard and bloodied my shins on that rock. I thought I destroyed my spine.....(STRESS).... but, it was ok. I knew I was fused 2 weeks later.....Again, the lifting question comes into play, when and how much should I lift? After time passes, you lift increasing weights and know what you can get away with. I guess these are all tests of fusion. A progressive process.

I have dead lifted a 75# box off the floor, (at work with people flipping out) I guess as a test. I wanted to know. That was probably 2 years after my surgeries. I now know I can lift 75#, but with our ever changing bodies (bone remodeling), and pseudarthrosis rates being discovered up to around 8 or 9 years post, (Dr Lenke) I have stopped this. It's not worth finding out. (As a senior) Biomechanically speaking, lifting a box off the floor with arms extended produces the highest amounts of force on the lumbar spine. I guess we can assume that lifting is destructive to the back. You would have to look at professional weight lifters and see how their spines are holding up. It can't be good.

It brings up the question, do the no BLT's have a time limit? and if so, what is a safe weight and timeline? It's a tough question to answer. I don't know if this has been studied, but if there is ANY remote possibility of accelerating or promoting damage to a fusion, it's something to consider. I personally did not want to take any chances, my surgeries were too painful.

Just some thoughts.....Take it easy on the lifting. Keep the weights down on the low side for now. No surprises, ok. We have seen this around here with the rod breakers. I have met with members a year out doing great, only to find out a year or so later. "I broke my rods and did another revision, but I'm great now". Wow!

We are going to have to tip a beer or a coffee at some point.

Keep in touch on the med reduction and of course the pain report.

Ed

[Tina_R]

We shot a few x rays today and all hardware looks good! No signs of moving around at all or any failure! YAY! Still too early to tell how the actual fusions are shaping up so that will be analyzed at an appointment in September. My weight lifting restriction has been increased from 5# to 20# with the caveat of “listen to your body” of course.

Why did they raise your lifting limit to 20 pounds from 5? That sounds extreme. My limit was 5 lbs and my healing back hurt when I lifted even 2 lbs, a signal to not overdo it.

[JScoli91]

BMP was used. I remember my surgeon mentioning it specifically. Thank you for bringing my attention to the markers. That will be helpful in navigating x rays when they are taken. Definitely taking it slow and easy as far as what I am lifting and doing. Still sticking mainly around the house for now, going on walks, and getting somewhat good at crosswords haha. An appointment to get all the sutures our this week and then another appointment in a month. It does feel nice to not need to wear my brace when I’m at and inside home. Starting to feel like I am getting my gait back, walking is starting to feel less robotic thank god.

[JScoli91]

As I am starting to trust my body and do more things I notice a very localized tightness at each SI fixation location. Has anyone else experienced this and if so did it ever go away? It’s not painful just more tight feeling than anything else.