Second fusion coming up...

[JScoli91]

Hi all, I have my second fusion coming up in one month. 17 years ago I was fused from T2-T12 when I was 13. Since then my lumbar has continued to curve and twist and now I am scheduled to have T10-S1 fused with both SI joints fixated as well. I have a husband as well as a 3 year old son and a 1 year old daughter at home.

I am terrified. All the surgeons I have seen have said this surgery is not a matter of if but a matter of when and it’s better to do it now while I’m young (29) and healthy and strong instead of waiting until I’m older, in a lot more pain, and the problem continues to worsen.

I’m scared of the pain

I’m scared of the limitations after fusion and complete healing. I don’t want to end up on disability or anything like that.

I’m trying not to let my fear override the logic behind why this surgery makes sense but I’m still really really scared.

[titaniumed]

I will never forget when I set my dates, and I sure turned into a zombie with my mind constantly fixated on surgery, justifying the decision.

When pain is bad and getting worse, and you know surgery is inevitable, you have to forge ahead. There is no backing out. It's crazy. It was the hardest decision of my life. As the date creeped up the last few days I had a release, sort of like when you reel in a fish, for the last 10 feet, they give up. I walked in, wrote my co-pay check, and it's funny how the people in the hospital knew. They all knew. My vascular surgeon even asked me if I was scared, and my response was "Am I supposed to be scared?" In other words in my mind, I had complete and total confidence in my surgeons and the team. You have to have this. You have to trust your surgeons. You also have to be ready for anything and be brave. Remember that the majority of complications are temporary. It's a mental mindset I adopted, if I am going to play football, I WILL GET TACKLED. and then get up. If I am going into a boxing match, I will get beat up, its expected, and I will recover.

I now think back and all that stress was unnecessary. It was. And all my assumptions were wrong. I got home, and thought I would never be able to reach my feet ever again. That was wrong. You have to have powerful determination and will power to heal. You think way ahead, never back thinking I shouldn't have done this, never second guess your decision after you are done. I always thought that the pain of recovery was temporary. It's this healing process that we have to do, so thoughts are always on the goal which is total and complete recovery.

On the subject of pain, I learned the most from Dr Joshi. I did a thread and some notes on one of the videos, but understanding pain and why it happens is extremely important as a scoliosis patient. This video might be boring, but give it a shot.
https://www.youtube.com/watch?v=8QcwlE-tw1o

Heck, your 29. You have your age on your side.....and you will get through this.

BTW, nice to see you posting again...

Ed

[JScoli91]

Thank you Ed, it brings my heart a little more peace to hear from you again.

After fighting with insurance, who wanted me on a cocktail of 3-4 narcotics for 2+ years before they would approve surgery, we finally got it authorized...then Covid hit. I have confidence in my surgeons, no fear or worry there, just fear of the pain in the immediate sense and then long term, I don’t want to end up regretting a surgery I can’t ever have undone. I know any and all limitations I will either adapt to or find a way around or accept but it’s just so hard to not have any predictability in what life will look like concretely after surgery since everyone is so different.

I have run into a majority of people with this surgery saying, “god I regret it” or “I went straight onto disability”. At almost 30 that’s not what I want for the rest of my life! I dairy farm and I am very independent, I don’t want to lose that! The whole idea of this surgery is to preserve my physical integrity before it continues to diminish further, not to take it away in one full swoop! Right?

[JScoli91]

I guess in terms of limitations, after healing of course, what should I expect to either be able to still do but in a different way, or not be able to do at all?

Gardening
Reclining on a couch or in a recliner
Getting onto and off of the floor (playing with my kids)
Getting laundry out of a top load washer
Making the bed
Running
Riding a bike
Swimming
Jumping
Putting my own socks and shoes on
Vacuuming
Sweeping/mopping
Unloading the bottom half of the dishwasher
Shaving my legs
Sex

[Tina_R]

Thank you Ed, it brings my heart a little more peace to hear from you again.

After fighting with insurance, who wanted me on a cocktail of 3-4 narcotics for 2+ years before they would approve surgery, we finally got it authorized...then Covid hit. I have confidence in my surgeons, no fear or worry there, just fear of the pain in the immediate sense and then long term, I don’t want to end up regretting a surgery I can’t ever have undone. I know any and all limitations I will either adapt to or find a way around or accept but it’s just so hard to not have any predictability in what life will look like concretely after surgery since everyone is so different.

I have run into a majority of people with this surgery saying, “god I regret it” or “I went straight onto disability”. At almost 30 that’s not what I want for the rest of my life! I dairy farm and I am very independent, I don’t want to lose that! The whole idea of this surgery is to preserve my physical integrity before it continues to diminish further, not to take it away in one full swoop! Right?

Is that what you hear, that a majority of people who have had it are negative about the surgery? Have you told your doctors this, and what do they say?

I was too naive to question my doctors. I saw one surgeon for a diagnosis but the surgery was beyond what he would do (it required two surgeons and he didn't work that way, he said) and he referred me to my present surgeon. Neither one said much about how iffy this surgery is.

I'm pretty sure even young and strong as you are that you will be unable to do farm chores for quite some time post surgery. I hope you have backup planned for that. It takes time to heal. The initial healing is tough but that's temporary. Really it's the results that matter, of course. That is hard to predict. We can only tell you our own results.

[JScoli91]

I haven’t literally counted the number of responses on either side of it but I guess when I go to Facebook support groups and the like it is filled with more people saying how miserable their lives are now (even after they are fully healed) compared to before. I don’t know if that’s because all the people who are good and healed and happy are busy leading their lives or what but that’s the trend I seem to see at least.

What were your results like Tina? Fused to your pelvis?

We milk 800 cows and we have 25 employees. The vast majority of my job is behind my desk (even though I would LOVE to be out doing hands on chores with the cows more than I currently am). I am currently slated to not return to work until 3 months post-op but we will see.

I know in the immediate recovery it’s going to suck major A$! and over the first year or so after there will still be hurdles to jump through, my concerns will be with what limitations I will be faced with for the rest of my life because of this surgery that won’t be able to be overcome and I will instead have to adapt to.

[Pooka1]

The issue is would these people who are miserable with their fusions be MORE miserable if they weren't fused? Would they be alive?

Hard to know. Only a surgeon who has some number of patients who refused surgery might be able to say.

I do not believe my one daughter would even be alive absent fusion. I KNOW neither girl would have lived the lives they lived in the last 10 years absent fusion. They would have done NOTHING even if they were alive... not finished high school, not gone to college, not gone to grad school, not worked in a zoo, not hiked miles into the wilderness to electrofish in remote mountain streams, etc, etc., etc.

[LindaRacine]

The issue is would these people who are miserable with their fusions be MORE miserable if they weren't fused? Would they be alive?

Hard to know. Only a surgeon who has some number of patients who refused surgery might be able to say.

I do not believe my one daughter would even be alive absent fusion. I KNOW neither girl would have lived the lives they lived in the last 10 years absent fusion. They would have done NOTHING even if they were alive... not finished high school, not gone to college, not gone to grad school, not worked in a zoo, not hiked miles into the wilderness to electrofish in remote mountain streams, etc, etc., etc.

Scoliosis only rarely causes death. As I've said before, I've known people with very large curves who live productive lives, even into their 7th, 8th, and 9th decades. Most probably have some back pain, but then again, something like 85% of adults have some back pain.

[JScoli91]

Can anyone please speak to restrictions with things and tasks of every day life? I know everyone is different but can I hear some examples especially for things such as...

Gardening
Reclining on a couch or in a recliner
Getting onto and off of the floor (playing with my kids)
Getting laundry out of a top load washer
Making the bed
Running
Riding a bike
Swimming
Jumping
Putting my own socks and shoes on
Vacuuming
Sweeping/mopping
Unloading the bottom half of the dishwasher
Shaving my legs
Sex

These are all things that concern me about either if I will be able to do them afterwards or how I will be able to do them afterwards

[titaniumed]

Gardening or better yet, pulling weeds is popular with the members here with THE most expensive spines.....Ha ha Use an old bathroom mat to kneel on.

Reclining or typical modern type living room furniture is not my favored way of getting comfortable. I can last 30-40 minutes and then I have to get up. I can't watch a whole movie and I am quite fidgety. I find the best furniture is the right office chair, a standard chair, laying in bed, or a Rolls Royce in a swimming pool. (Scoliosis forum humor)

Getting down on the floor, or getting lower started with my dishwasher. You can throw them in, drop them in, but you cant remove them unless you squat down.
This is how I started doing squats. One hand on kitchen counter, the other hand grabbing dishes and setting them up on the counter. If you squat, keep your spine vertical, head up, like a model on a runway. Bending is not allowed. No BLT s No bending lifting or twisting. For a long time. If you read 10 books,8 of them will state that it takes 12 months to fuse. Just remember that as a general rule. You will fuse sooner, your surgeon can tell you all about this.

Laundry out of top washer is not a problem. Pulling dry clothes out of a low dryer requires a squat, a grabber, once again, no bending. The big toe method works well for picking up clothes. Grab sock with big toe, bend knee, grab from behind.

Making the bed will take some recovery time.....Bending and pulling on sheets is not easy. I will say 3 months on this.

Running. I can run on my toes. Heel contact is not good and you will feel this. I would not plan any distance running. Bike riding or motorcycle is not a problem. If fact, its better to be fused for riding motorcycles. It was an improvement. Same with my golf. The fusion adds stability.

No jumping. No pogo stick. No pogo stick competitions....I had my wings clipped by my surgeon with skiing, and velocity was lowered. I have done a few jumps.

Socks are done with a sock installer. They work ok, and take a little time. I started stool stretching at 8 months slowly.....and I can put socks and shoes on without a problem. There are photos here someplace. Probably in my signature.

Vacuuming....Your asking Oscar Madison but you might not know. Yes, you will be able to use a vacuum. Sweeping and mopping ok. Not too much.

Shaving legs should be ok. Some ladies use long handled setups.

Sex....Yes!

Ed

[JScoli91]

Thank you ed for your thorough reply. Do you think my young age will give me an advantage in terms of the flexibility and range of motion I have in my hips pre surgery (a lot) will be retained and of use after surgery and healing? Is it also correct to think that although my pain isn’t 9/10 and my curve isn’t 80 degrees or so that doing this surgery now at my age and current state is more pre-emptive as opposed to reactionary when facing a progressing curve? I just want it all to be worth it and not regret it.

[titaniumed]

My hips did not change at all......

With all the things you have going on, there is no doubt that surgery is the only answer. You will be the youngest ALIF here that I know of, usually ALIF is for serious cases, and your surgeon wouldn't be doing this if he wasn't comfortable with the procedures. He wouldn't be doing it if he didn't think it would help. He is not your regular orthopedic doing this, he is highly trained.

I went through all the lumbar pain, let me tell you, it was a BATTLE. And it cost a fortune.

What date will this happen? Will they do it in one day? One operation, or staged dates?

Is he using BMP?

Ed

[JScoli91]

June 29 - anterior

July 1 - posterior

Yes, using BMP

Does sitting get easier as healing progresses and finishes? Was laying down more comfortable? On your back or on your side? During the healing process do you think the lumbar fusion hurts worse than the SI portion or vice versa?

[titaniumed]

Ok, I see...

Sitting was hard for me before my surgeries. I would stand up in the back of the plane rides all the way to Hawaii. Pretty much the whole flight. Sciatica was intense at times. I had a lot of trouble sitting "before" my surgeries.

Sitting "after" my surgeries was 5 minutes maximum then would get really uncomfortable and then I would have to stand. Standing was my most comfortable position. Standing and floating in hot water. After a month, I could sit for 15 minutes, but would have to move or stand up and take another short walk. Your going to be walking often that's for sure....Walking promotes healing by moving blood and its nutrients into healing zones. Get a pair of ski poles to walk with. Use the poles to ward off friendly large dogs that can potentially knock you down. Dont go outside without the poles. We have a lot of big dogs around my house, they are scary when you are in recovery. Keep them away with the poles.

Lying down was on my left side only for a year since my shoulder and arm were broken in a ski crash. I had a bandage on my back, on my front, and the shoulder was delicate. The foam topper doubled my sleep time. You will need a latex foam topper. 2-4 inches thick. My medium Tempurpedic was not soft enough. Sleeping for short periods like a cat grows old fast, and you will be sleep deprived. It took a long time for me to get up to 7 hours of sleep. It took 1 year or more. After the shoulder was repaired, I could sleep on the right side and that helped quite a bit. In immediate recovery I would sleep halfway between my backside and side on a 45 degree angle so the bandage on my back would not exert so much pressure on the incision. After it heals up, it also toughens up.

My Pelvic anchors are the largest I have seen and I have looked at a LOT of x-rays. And yes, they ached. The hot water soaks removed that ache. I would soak for 30 minutes, be pain free and then go back to bed to try to get some more sleep. When I woke up in pain, I would then walk and prep the tub again. This cycle of soak, sleep walk, went on for exactly 90 days. I have not used my tub since May 2008. I improved about 10% per month. Improvements would come in steps with no improvement for 2 weeks then suddenly feel that much better. Like one of the surgical inflamed areas healed. You have to get all the raw inflamed zones to heal.

The anterior incision did not hurt much. Most of the pain was not an acute thing, it was all over. The eventual termination of my meds resulted in a HUGE improvement, yes, weaning was extremely painful, 36 hrs of hell, but boy was that worth it. I replaced my meds with nutrients. Whey protein powder smoothies.

I did not have my SI joints fused.

I have so much to type, its sloppy and cant cover all the material I want to convey.

I am sorry but I do not know your name. It's really nice to know these things....(smiley face)

Ed

[Pooka1]

Scoliosis only rarely causes death. As I've said before, I've known people with very large curves who live productive lives, even into their 7th, 8th, and 9th decades. Most probably have some back pain, but then again, something like 85% of adults have some back pain.

That's true. But my one daughter's curve moved 5 degrees a month for several months. To the extent I have been able to calculate progression rate for other kids here, there is nobody whose curve progressed quicker at least in that small set. Not even close. I think it is likely she would be north of 90 degrees which is where you start seeing medical issues. And we can't ignore suicide when a person loses hope for any kind of life.