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ksmom0611
05-28-2015, 10:45 AM
I am 18 weeks post-op with fusion from T3-sacrum with pelvic fixation. My Dr is Dr. Lonner. I just started back at work part time 2 weeks ago. Unfortunately, the commute is about an hour in the car at its worst. It's been a rough couple of weeks, but there's a lot of financial pressure to work.

I find that the reality and permanence of the fusion is hitting me now. I still move awkwardly, have quite a bit of pain, and have a lot of fatigue (1 day at work= 1 day spent in bed.) I feel like I can't bend my back....duh! I didn't realize how awkward my movements would be. I'm scared it's not going to get better. I really don't want to be moving like this the rest of my life. It's a little visible to others, but mostly to me. I feell like I live with the limitations every minute of the day and night. I still wake myself up at night when I scream out in pain (about twice a week). That upsets me so much. It just feels like I can't escape from this for even a moment. It's all-consuming. I can't imagine the rest of my life like this.

It also feels like nobody understands what this is like. People expect me to do "normal" things, to be able to do all the things I did before surgery, and not to need recuperation time. They're not doing it to be mean, it's just automatic because I can do more things and I look like I'm back to myself. But every time I struggle to do something it points out that I can't do it, and it brings back the awareness, to me, that I still have limitations. It makes me angry and so sad. I keep telling myself this will get better, it can't possibly be like this in a few years. I just can't convince myself of it. I'm really scared it won't get better and that I'll always be aware of my limitations.

tae_tap
05-28-2015, 12:30 PM
Hello there! I completely understand where you are coming from. I am 18 months post-op from T2-Sacrum with pelvic fixation and work in the medical field. I drive 45 minutes to work and then back home five days a week. The car ride will get easier as well as the exhaustion. The new limitations drove me crazy at first because I take my job seriously with love and pride and not being able to go 100% made me crazy. My advice is to take things slow and be patient. It does get better and the energy will return.

Tamena

scooter950
05-28-2015, 12:35 PM
Hi. Thank you for sharing these feelings. I have not scheduled surgery yet, one friend said to me "you've been planning that surgery forever". and it's true, yet... I fear I will wake up in a foreign body- and know it is permanent. Like the feelings you are describing. I am fairly sure you will improve with time- most post-op members do report improvements with time; but there are certain restrictions that will remain forever. It's a trade-off. But right now, it is so early you don't feel the full benefit of being fused = less pain. I am hopeful that it will improve each day, each week and month... I also have severe chronic depression, have tried to live without meds but I need the meds. Even now, I get stuck in apathy/ inertia and just don't have energy to call and schedule an appointment. I have no idea how I will function post-op. but I do gain insight from everyone sharing on this forum, and I hope & pray you will get adjusted to your limitations soon. Good luck with the commute- I have the same one hour drive now, and it wears me out now. God bless xxx Jamie in Texas

LindaRacine
05-28-2015, 01:37 PM
I am 18 weeks post-op with fusion from T3-sacrum with pelvic fixation. My Dr is Dr. Lonner. I just started back at work part time 2 weeks ago. Unfortunately, the commute is about an hour in the car at its worst. It's been a rough couple of weeks, but there's a lot of financial pressure to work.

I find that the reality and permanence of the fusion is hitting me now. I still move awkwardly, have quite a bit of pain, and have a lot of fatigue (1 day at work= 1 day spent in bed.) I feel like I can't bend my back....duh! I didn't realize how awkward my movements would be. I'm scared it's not going to get better. I really don't want to be moving like this the rest of my life. It's a little visible to others, but mostly to me. I feell like I live with the limitations every minute of the day and night. I still wake myself up at night when I scream out in pain (about twice a week). That upsets me so much. It just feels like I can't escape from this for even a moment. It's all-consuming. I can't imagine the rest of my life like this.

It also feels like nobody understands what this is like. People expect me to do "normal" things, to be able to do all the things I did before surgery, and not to need recuperation time. They're not doing it to be mean, it's just automatic because I can do more things and I look like I'm back to myself. But every time I struggle to do something it points out that I can't do it, and it brings back the awareness, to me, that I still have limitations. It makes me angry and so sad. I keep telling myself this will get better, it can't possibly be like this in a few years. I just can't convince myself of it. I'm really scared it won't get better and that I'll always be aware of my limitations.

What you're going through is familiar to a lot of us. While you may never get to a place where you're comfortable in terms of both pain and function, I think you'll still see slow improvement for the next year or two. Hang in there. As you've probably heard before... it's a marathon and not a sprint.

I know that you're working part-time. Does that mean you're working a limited number of days per week or a limited number of hours per day. If at all possible, I highly recommend the limited number of days per week. First, that gives you at least a whole day to recover from each work day. And, most importantly, it gives you a lot fewer hours in the car. If it's not impossible, you might actually want to consider changing your hours a bit. For example, if you can come in later and work later, you might find that you're sitting in traffic a lot less. The car is your enemy at this point. Do whatever you can to limit the time that you need to be in the car, and do whatever you can to make sitting in the car less painful. If you haven't tried it, consider a sitting wedge. (e.g., sitting wedge (http://www.dealgenius.com/catalog/product/view/id/4726?utm_source=google&utm_medium=cse&utm_campaign=google_shopping&utm_term=c241q1&CAGPSPN=pla&gclid=CPTmo_uJ5cUCFQKTfgodo1MALQ)). If you can get your butt a little higher (so that you're seated similarly to the woman in the picture), you may find it's not quite as uncomfortable.

--Linda

Lizardacres
05-28-2015, 02:56 PM
Going back to work is a bumpy transition. I think you are just a few weeks behind me recovery-wise. When I did my four weeks of PT, I was the same as you- I spent my days off in bed resting. I was really motivated to return to work so I just made it work, but I was definitely sore by the end of the day when I worked. Laying down really seems to still be needed at this stage of recovery to feel decent. I'm back FT but still spend a lot of time in bed on my days off and don't push myself at all. I don't cook, clean or do laundry. My husband more or less waits on me. He says he wants me to only have to do this once because he doesn't want to go through it again.

I give myself permission to take frequent breaks from my desk and do a lot of walking outside. It seems to help reset the position of my spine after sitting a while. My surgeon even wrote it into my return to work letter. But I am still usually pretty sore at the end of the day. When I go home I lay down and watch TV or read. Nothing else. I always feel a lot better when I wake up the next day.

I had a follow up visit with the surgeon yesterday and mentioned these problems and he said that you really can't judge until after a year and it is normal to feel like this now. I really don't notice a lack of mobility, probably because I was so rotated and having so much pain before that I didn't bend much anyway. I mostly notice that I have to hold myself up in a lot of chairs and it is tiring. I try and figure out what position my spine is supposed to be in and hold it there and not fight the rods.

Week by week it gets a little better at work. The first few weeks were the hardest. Hang in there!

Rise
05-28-2015, 03:23 PM
I am 18 weeks post-op with fusion from T3-sacrum with pelvic fixation. My Dr is Dr. Lonner. I just started back at work part time 2 weeks ago. Unfortunately, the commute is about an hour in the car at its worst. It's been a rough couple of weeks, but there's a lot of financial pressure to work.

I find that the reality and permanence of the fusion is hitting me now. I still move awkwardly, have quite a bit of pain, and have a lot of fatigue (1 day at work= 1 day spent in bed.) I feel like I can't bend my back....duh! I didn't realize how awkward my movements would be. I'm scared it's not going to get better. I really don't want to be moving like this the rest of my life. It's a little visible to others, but mostly to me. I feell like I live with the limitations every minute of the day and night. I still wake myself up at night when I scream out in pain (about twice a week). That upsets me so much. It just feels like I can't escape from this for even a moment. It's all-consuming. I can't imagine the rest of my life like this.

It also feels like nobody understands what this is like. People expect me to do "normal" things, to be able to do all the things I did before surgery, and not to need recuperation time. They're not doing it to be mean, it's just automatic because I can do more things and I look like I'm back to myself. But every time I struggle to do something it points out that I can't do it, and it brings back the awareness, to me, that I still have limitations. It makes me angry and so sad. I keep telling myself this will get better, it can't possibly be like this in a few years. I just can't convince myself of it. I'm really scared it won't get better and that I'll always be aware of my limitations.

I'm just shy of 11 months post op (fused T9-sacrum w/ pelvic fixation) and I am amazed at how far I've come so relatively quickly. I went back to work slowly - didn't really go back in a true capacity for 6 months. I was definitely wiped out after a full or close to full day and now at 11 months have chosen to go to a 4 day work week. The extra day to recharge my new body is a tremendous benefit and one you might want to consider even if it means 4 longer days. While I am very happy with my progress you hit on two points that for me at least are/were huge.

First, I have looked fine since day 3 or so. When you look good everyone can't seem to get that you're different than you were and that you don't feel the same or are capable of doing what you once did. It seems everyone knows someone who either has had or knows someone that had a fusion consisting of just a few levels. You simply can't compare that and people don't seem to get it. Frankly, it doesn't matter because I've always been a big believer in not complaining because I think people tire of hearing about it real quick. Sometimes though having a picture of the "after" x-ray speaks volumes. It can be quite effective in helping keep things in context.

Second, range of motion and improved feeling/diminution of pain and discomfort takes time but definitely happens. Nerves were cut and they are not happy. Nerves heal over a long period of time but they do generally heal and that poltergeist feeling does go away. There were times I didn't think that I would reach a point where I wouldn't be cognizant of my new hardware. Now at 10 months I forget about it often and I expect that to only improve. At this stage, make sure you get up to walk regularly. Sitting for extended periods of time will not benefit you. Also, keep up with your walking. It continues to be very important.

Just know that to a large extent "this too shall pass." The fatigue and discomfort are normal but both will improve over time. Best of luck and happy healing!

Rise

titaniumed
05-28-2015, 10:31 PM
Some great posts here so I will try to add....

The reality of it all is a shocker and some of the immediate thoughts I had were all wrong. I thought I would never be able to reach my feet ever again and figured I would wear slip on shoes for the rest of my life. Now, I put ski boots on.....which isn’t an easy thing, takes a few really deep breaths but I get them on.....It was something I had to figure out on my own, and some of our challenges we come across we do figure out in time. Patience is learned doing these surgeries, there is no doubt about that. I can sit and watch the grass grow now which is a good thing when you think about it. Having this kind of patience molds us into better people. Its not a spine recovery, its patience training, with pain. It’s a hell of a combo.

Your 4-1/2 months along and have a ways to go......and you made it through the hardest part. I think the best way to approach all of this is to think ahead, think about how well you will be doing in the future.....this is what I did, and rode the bumps of pain through my long recovery......Nothing that’s any good happens quickly, and many of the good things in life we have to work at. Occupy your mind on pleasant things other than your spine....Non-stressful types of things....

Breather deep,. Inhale slow and DEEP, count to 10.
Control emotions. You do have a choice.
Slow down......move slowly. (I know its hard in NY, but do it anyway)

I don’t like saying “Have surgery done” because if something does go wrong, I don’t want the guilt. But, I think that we actually DO need to hear this at least once, which happened to me since a neighbor ran into a full fusion male scoli who was doing great, and she relayed the “Do it” message to me, from him. I thought that if he could do it so could I. I also thought if Juma Genda could do it on the “Surgery Saved My Life” program with Dr Boachi, so could I. I guess we need to see others do well in order to build our confidence....I could do it, but I knew by the way Juma looked, that it hurt, and he was beat from such an invasive operation. I knew right then that this was going to take serious time. It took me 2 years......I did it, and so can you.


Now, I don’t think about my spine much anymore. It was a mental process that took a few years, just a little at a time......Transferring thoughts. Calm blue ocean.......

I tried not to “worry” about what I could do, or not do..... This is key. Your in recovery period. Time out! Also, don’t worry about what others think. They don’t have a clue anyway, why worry about their ignorance. Believe me, its not worth it. You can always teach them, and if they are not interested, keep it short. Throw up your x-ray on your desktop as a reminder.....they will look and think.


Laying down should be our first choice in case of pain. I have done this for decades.......before and after surgery.

Sitting is hard......use soft pillows. I had mine in the car for a year, but not anymore.....

For us, things do get better because we heal, and we have clear minds.

And we are so fortunate......I think about this all the time now......I always have that knowing smile, and you will too.

Ed

golfnut
05-29-2015, 08:08 AM
There are many good posts in this thread so I don't know that I can add much. I know that my flexibility continued to improve even after year 2. I have a video attached of my first golf swing in my "signature". I should update it, because my swing is much more fluid now. You may not be a golfer, but you can at least see in the video that those of us with long fusions are not like the tin man. For about the first 6 months, I was stiff as a board because I was extremely careful not to bend or twist. I feel for you with the long drive to work as that has to be tough so early in your recovery. Take as many walking breaks as you can. Dr. Lenke, with his modesty, has me convinced that my diligence with walking was the main key to my smooth recovery although I have to give him all of the credit. Don't get discouraged. It gets so much better with time!

leahdragonfly
05-30-2015, 10:15 AM
Hi,

you have gotten so much great advice above, I don't know what else to add. However, I do clearly remember being right where you are. I had to go back to work on seated duty in a busy hospital setting at 14 weeks post-op. I was still in pain and tired very easily. My brain was still kind of foggy and it was total sensory overload at first. I do clearly recall thinking "if this is the outcome of my surgery then this really sucks" at the 4 month mark. I definitely set my recovery back by at least a full month by going back to work, but like you, I had extreme financial pressure, and an employer that wasn't wanting to be flexible about my job. I made it through (twice), but it was bumpy, exhausting, and no fun.

One thing I recall about the discomfort at the 4-6 month mark…I had lots of stiffness and very significant "aches and pains." I took Tylenol three times a day, every day, for at least a year, which helped some. The discomfort by that point wasn't anything that would be helped by pain pills. Getting up for lots of short walks and moving around was what helped the most. And I definitely went home and immediately laid down every day.

People who haven't gone through this can't possibly understand…My mom even said to me at 5 weeks post-op, oh honey, is your back still bothering you? OMG!!! So insensitive, but they don't realize. What can you do other than ignore them, and don't feel judged by them.

Take it as easy as you can right now, eat nourishing food, drink lots of water, enjoy the outdoors, try to laugh a lot, and don't be hard on yourself mentally. You will still be recovering for some time, so just tuck in for the long haul, and after a while you will realize you are much better than you were right now. I had huge improvements at one year and two years, and now at several years out I am still having gradual improvements in flexibility.

PeggyS
05-30-2015, 06:56 PM
Keep your X-ray photo handy! You've received some great advice - I can't add more. Praying the drive gets easier for you.

ksmom0611
05-31-2015, 05:21 PM
Thank you everyone for your words of encouragement, suggestions, and reassurance. You can't imagine how much it helped (and continues to when I re-read them)! It also helped to show my family what others replied. They really are very supportive, it's just hard to understand when you haven't been through it. I think one of the most helpful things you said here is about the resting. I do rest, but feel guilty every time. There's just so much to do and I have to force myself not to! I don't do very much and I feel bad that I can't do more. Hearing others say they were also wiped out at this stage helps me feel like it's "normal." It's such in internal tug-of-war between "I have to do this - I can't do this" and then thinking...."can I /should I do this?" I really needed to hear that it gets better! I'm usually a very patient person and have always been with medical stuff in the past. This time, though, it's getting to me. Thank you for reminding me this is part of the process.

This is a wonderful community of helpful and kind people!

jackieg412
05-31-2015, 05:37 PM
Yes rest is key. And others will not understand. Even my surgeon told me it would take 6 months. Oh right. Now that I am 6 years out, I told him that was a major understatement. For me, I though I would make it at around one and a half years. At 2 years I had revision surgery but that wasn't as hard. Moving gets easier but somethings remain difficult. One member said that she couldn't cut the grass but for me it is not a problem. However I have a small electric mower. I am sure that I could not pull start a gas mower. But we addapt and do our best. I was forced back to work at 7 weeks. I thought I just might die then. It was only part time but next to impossible to do. But I mAde it!
Now I have to find a way to make this next phase. My scapula problem has led me to the university of Chicago medical center. They are in the process of coming up with a solution. Sometimes it is fix the scoliosis and then come up with another problem.
Take your time and rest!!!