Rough Timetable estimates for how you feel postop....66 YO with probable T3 to Sacrum

[Irina]

You are so right that everyone is different! I was one that took longer to get back to feeling ok. I was in the hospital for 11 days, and other than my husband, my daughter and her husband, there is no way I would have wanted anyone there... After I came home a few people came to visit, but it was very tiring to have them come, although a nice gesture. They need to limit their time.

I had been told that for the first 6 weeks you would/could regret the surgery. I probably didn't want to go out, other than to walk, for about a month-- but we live in the country and it's a good half an hour to a store. At 5 months I traveled by plane to see my daughter in New Hampshire (from Indiana). The trip was a little difficult, but I did it. (smile) Long trips in a car were difficult, but by one year we were able to take a road trip to New Hampshire, stopping every few hours to stretch and rest. I was still a bit tired and sore, but ok.

At one year, I thought I was "all healed" and would live with how I was. Then I was surprised at how much better I was at two years post-op. Again at 3 years. I continue to get stronger and better with each year. Some of us take longer to get better. I spent most of my first year intensely doing all I could to work at gaining back my strength because I had become very weakened by the surgery and wasn't able to return to my active job at school. I would spend (after 6 months, when I got the "all clear" from my doctor) 2-3 hours a day walking and doing PT exercises to build up my arm and leg muscle strength. At 11 months he let me work on core muscle strength, sending me again to a P. therapist for 8 weeks and I continued doing those exercises after my time there was over. Some people don't seem to get weak like that, but I did. It may be because of the osteotomies and my general condition, although I always thought I was fairly strong. Oh well-- it's beside the point. I ended up taking a year off from my job and it was ok. I am doing well now and just have some general limitations-- no bending, twisting, or lifting things a little over 20 lbs., but that's because my lower 2 vertebrae weren't fused and we are trying to save them from having problems.

I used my shower seat for at least 3-4 months, with one of those shower wands. Same time span with the raised toilet seat with handles. The handles were great in helping me get up. My legs just were too weak on their own. I never needed a "buddy" although it was a bit difficult... I actually didn't celebrate-- was kind of sad to see them go, but knew it was time. The doctor had nothing to do with it. I still use a sock aid because my legs are long in proportion to my torso and it's such a stretch for me and second nature to use the aid. No big deal.

Best wishes. As time goes by you will get better and better. (smile)

Susie,

This is a very helpful and detailed response. I hear different things about whether to use or not to use a shower seat, but it seems like it could be good idea to buy it just in case. Thank you!

[Susie*Bee]

Glad to be of help. Regarding the shower seat-- it used to just wipe me out to take a shower and I would need to rest afterward. Having the seat to sit on was so helpful, plus, just in case you got dizzy or weak-- there you were, fairly safely seated. (smile...) I really can't imagine trying to shower standing up at the beginning, although I know some people have no problem.

[golfnut]

I had no problems standing up in the shower, however, in hindsight, I would advice the seat. I blacked out briefly at 3 weeks post-op, but not in the shower. I think it would be wise to use the seat until you are off the heavy meds.

[leahdragonfly]

Just my 2 cents worth---I used the shower seat for about two showers, but found it made the shower actually more difficult and less pleasing. I had no trouble at all standing in the shower, and it was just heavenly (but definitely exhausting the first couple of weeks).

I never needed a wiping aid. I did appreciate the raised toilet seat for maybe 6 weeks (?) after my first surgery (T8-sacrum/pelvis). I used a grabber stick, but that was the only aid I used.

I could not put on my own socks for awhile, until I devised another way to do it. I never did use a sock or shoe aid.

My husband visited the hospital every day of course, and one other close friend who had scoli surgery last year came by for a brief visit. I was happy to see her but probably only able to visit for about 10 minutes tops. I did not feel up to any other friends while hospitalized. I would have LOVED to see my kids, but they were at home 2 hours away. This motivated me to leave the hospital one day early, because I missed them just so much.

Once at home I had a couple of visits from my Mom and Dad, but I tired very quickly. My Mom wasn't super helpful unfortunately so it was kind of draining to have her. She really didn't understand how quickly I tired and needed to lay down to rest. Friends that come by and just sit with you during some TV, or who bring you a light meal and don't overstay, those would be welcome visitors. But everyone is different in the level of social stimulation they desire when not feeling well.

I definitely regretted the surgery deeply the first two weeks. The first 2 weeks are just so rough, and you will not feel well. I have to admit I absolutely hated my new posture and my newly lost mobility. Over time I improved, and grew to accept (but never love) how my new back felt. There is not a day goes by that I wish I didn't HAVE to be fused, but I did have to, and I now appreciate having a back that is getting closer and closer to pain-free. I will never love the feeling of being fused though. The loss of mobility does really bother me. Many others here don't seem to mind.

I experienced significant improvements around the 12 day mark, 4 weeks, 4 months, 6 months, 9 months, and one year. I broke my rods and had my big revision at 15 months post-op, at a time that my back had been feeling really good, so of course that was a very significant set-back. Now I am 9 months post-op revision, and definitely I'm still improving. I take tylenol usually once a day now and that is it.

Your other questions: going outside for short walks, the day after getting home. Make sure you aren't alone, and don't fall! Going out for short outings (like to Market of Choice for a sandwich), 3-4 weeks. Riding in the car for one hour in reasonable comfort, ~6-8 weeks. I drove our family 6 hours for camping at 6 months post-op (both surgeries), and it wasn't great, but tolerable with meds.

Best of luck with your upcoming visit to Dr H.

[susancook]

You are so right that everyone is different! I was one that took longer to get back to feeling ok. I was in the hospital for 11 days, and other than my husband, my daughter and her husband, there is no way I would have wanted anyone there... After I came home a few people came to visit, but it was very tiring to have them come, although a nice gesture. They need to limit their time.

I had been told that for the first 6 weeks you would/could regret the surgery. I probably didn't want to go out, other than to walk, for about a month-- but we live in the country and it's a good half an hour to a store. At 5 months I traveled by plane to see my daughter in New Hampshire (from Indiana). The trip was a little difficult, but I did it. (smile) Long trips in a car were difficult, but by one year we were able to take a road trip to New Hampshire, stopping every few hours to stretch and rest. I was still a bit tired and sore, but ok.

At one year, I thought I was "all healed" and would live with how I was. Then I was surprised at how much better I was at two years post-op. Again at 3 years. I continue to get stronger and better with each year. Some of us take longer to get better. I spent most of my first year intensely doing all I could to work at gaining back my strength because I had become very weakened by the surgery and wasn't able to return to my active job at school. I would spend (after 6 months, when I got the "all clear" from my doctor) 2-3 hours a day walking and doing PT exercises to build up my arm and leg muscle strength. At 11 months he let me work on core muscle strength, sending me again to a P. therapist for 8 weeks and I continued doing those exercises after my time there was over. Some people don't seem to get weak like that, but I did. It may be because of the osteotomies and my general condition, although I always thought I was fairly strong. Oh well-- it's beside the point. I ended up taking a year off from my job and it was ok. I am doing well now and just have some general limitations-- no bending, twisting, or lifting things a little over 20 lbs., but that's because my lower 2 vertebrae weren't fused and we are trying to save them from having problems.

I used my shower seat for at least 3-4 months, with one of those shower wands. Same time span with the raised toilet seat with handles. The handles were great in helping me get up. My legs just were too weak on their own. I never needed a "buddy" although it was a bit difficult... I actually didn't celebrate-- was kind of sad to see them go, but knew it was time. The doctor had nothing to do with it. I still use a sock aid because my legs are long in proportion to my torso and it's such a stretch for me and second nature to use the aid. No big deal.

Best wishes. As time goes by you will get better and better. (smile)

Susie, thanks for your response. It was very encouraging for me and I need encouragement right now. I am both looking forward to seeing my surgeon in 2 weeks and dread what I fear will be his recommendation.
Susan

[susancook]

Just my 2 cents worth---I used the shower seat for about two showers, but found it made the shower actually more difficult and less pleasing. I had no trouble at all standing in the shower, and it was just heavenly (but definitely exhausting the first couple of weeks).

I never needed a wiping aid. I did appreciate the raised toilet seat for maybe 6 weeks (?) after my first surgery (T8-sacrum/pelvis). I used a grabber stick, but that was the only aid I used.

I could not put on my own socks for awhile, until I devised another way to do it. I never did use a sock or shoe aid.

My husband visited the hospital every day of course, and one other close friend who had scoli surgery last year came by for a brief visit. I was happy to see her but probably only able to visit for about 10 minutes tops. I did not feel up to any other friends while hospitalized. I would have LOVED to see my kids, but they were at home 2 hours away. This motivated me to leave the hospital one day early, because I missed them just so much.

Once at home I had a couple of visits from my Mom and Dad, but I tired very quickly. My Mom wasn't super helpful unfortunately so it was kind of draining to have her. She really didn't understand how quickly I tired and needed to lay down to rest. Friends that come by and just sit with you during some TV, or who bring you a light meal and don't overstay, those would be welcome visitors. But everyone is different in the level of social stimulation they desire when not feeling well.

I definitely regretted the surgery deeply the first two weeks. The first 2 weeks are just so rough, and you will not feel well. I have to admit I absolutely hated my new posture and my newly lost mobility. Over time I improved, and grew to accept (but never love) how my new back felt. There is not a day goes by that I wish I didn't HAVE to be fused, but I did have to, and I now appreciate having a back that is getting closer and closer to pain-free. I will never love the feeling of being fused though. The loss of mobility does really bother me. Many others here don't seem to mind.

I experienced significant improvements around the 12 day mark, 4 weeks, 4 months, 6 months, 9 months, and one year. I broke my rods and had my big revision at 15 months post-op, at a time that my back had been feeling really good, so of course that was a very significant set-back. Now I am 9 months post-op revision, and definitely I'm still improving. I take tylenol usually once a day now and that is it.

Your other questions: going outside for short walks, the day after getting home. Make sure you aren't alone, and don't fall! Going out for short outings (like to Market of Choice for a sandwich), 3-4 weeks. Riding in the car for one hour in reasonable comfort, ~6-8 weeks. I drove our family 6 hours for camping at 6 months post-op (both surgeries), and it wasn't great, but tolerable with meds.

Best of luck with your upcoming visit to Dr H.

Thanks so much for your honesty. Your response brought tears to my eyes. I realize that I am angry that my back has betrayed me and at 65, when I thought that retirement and traveling and being active were in my future. This scoliosis thing never entered my mind. I think that I am setting myself up to be disappointed by the surgery no matter the outcome as I am angry that I am in this situation. You have given me permission to be angry and I thank you for sharing your honest feelings. I need to get on with my visit with Dr. H and regain trust in him and his communication.
Again, I appreciate your honesty
Susan....still in Fiji and coming home at the end of the week

[leahdragonfly]

Hi Susan,

I hope my post wasn't too raw...they are my true feeling about my fusion. I know so many on here say they can't notice much difference in flexibility etc and I just don't see how that could be true. I think because I have had two go-arounds with this surgery now I've had a lot of extra time to ponder it.

In time I accepted my new back (but always hated the loss of flexibility-how could you not?). But, my first surgery involved the rebuilding of lumbar lordosis, something which I had entirely lost, and so having a new, huge amount of lordosis felt really weird. I always felt like it was too much, from the minute I woke up in the ICU. I became accustomed to it by one year, to the point where I did not think about my back at all times. But, when I broke my rods, it was a welcome opportunity for Dr Hart to adjust my saggital balance with an osteotomy and reduce the amount of lordosis. I think my struggle with lordosis complicated my recovery by making me constantly aware that my back felt overly arched. Now my posture feels much more natural, and Dr Hart is very happy with my alignment.

One thing that I was expecting but didn't get was a more cosmetic improvement in stretching out my trunk and waistline. This was very disappointing. I found out from Dr Hart that usually correction is achieved by distraction (stretching the two ends of the curve apart to straighten). However, he found my spine to be unusually flexible and extremely unstable during surgery, which made it very challenging, so he ended up compressing the curve to stabilize it. All very technical but my waist still looks squished and my ribs are very close to my iliac crests.

Overall, at nine months post-op, I am happy, and I know that I still will make a lot of improvement in how my back feels. Right now it feels solid and my pre-op pain is all but gone. I am happy with my outcome overall. But there is no denying it is a very rough ride to get to this point.

I can understand you're feeling angry about your back letting you down. It is such a tough realization that this surgery is going to be unavoidable. It is such a daunting prospect. I am confident you will be in the best of hands with Dr Hart. His clinic days are so busy sometimes, so take a prioritized list of question you need answered. My experience has been he will always answer my questions.

Take care,

[loves to skate]

Susie,

This is a very helpful and detailed response. I hear different things about whether to use or not to use a shower seat, but it seems like it could be good idea to buy it just in case. Thank you!

Irena, I would hold off on the shower seat or any other personal equipment except maybe a grabber. After your surgery, you will be seen by an OT and she or he will be able to advise you on what you will need. I except the grabber because the one I was sold at the hospital was very flimsy and I know a much stronger one can be purchased at a medical equipment store or even a drug store. Good luck.
Sally

[susancook]

Hi Susan,

I hope my post wasn't too raw...they are my true feeling about my fusion. I know so many on here say they can't notice much difference in flexibility etc and I just don't see how that could be true. I think because I have had two go-arounds with this surgery now I've had a lot of extra time to ponder it.

In time I accepted my new back (but always hated the loss of flexibility-how could you not?). But, my first surgery involved the rebuilding of lumbar lordosis, something which I had entirely lost, and so having a new, huge amount of lordosis felt really weird. I always felt like it was too much, from the minute I woke up in the ICU. I became accustomed to it by one year, to the point where I did not think about my back at all times. But, when I broke my rods, it was a welcome opportunity for Dr Hart to adjust my saggital balance with an osteotomy and reduce the amount of lordosis. I think my struggle with lordosis complicated my recovery by making me constantly aware that my back felt overly arched. Now my posture feels much more natural, and Dr Hart is very happy with my alignment.

One thing that I was expecting but didn't get was a more cosmetic improvement in stretching out my trunk and waistline. This was very disappointing. I found out from Dr Hart that usually correction is achieved by distraction (stretching the two ends of the curve apart to straighten). However, he found my spine to be unusually flexible and extremely unstable during surgery, which made it very challenging, so he ended up compressing the curve to stabilize it. All very technical but my waist still looks squished and my ribs are very close to my iliac crests.

Overall, at nine months post-op, I am happy, and I know that I still will make a lot of improvement in how my back feels. Right now it feels solid and my pre-op pain is all but gone. I am happy with my outcome overall. But there is no denying it is a very rough ride to get to this point.

I can understand you're feeling angry about your back letting you down. It is such a tough realization that this surgery is going to be unavoidable. It is such a daunting prospect. I am confident you will be in the best of hands with Dr Hart. His clinic days are so busy sometimes, so take a prioritized list of question you need answered. My experience has been he will always answer my questions.

Take care,

I need to find confidence in Dr. H or move on. I sent him questions and he never answered. His PA responded after a while, but just gave me vague answers, not answers to my situation specifically. When I sent back an email asking her to ask Dr. H, she responded weeks later and said to make an appointment to ask my question. By that time, which was 2 months later, I was on my way to Fiji and he did not have any appointments available in the 2 weeks until I left.
I am so confused and frustrated. Susan
Thanks for sharing your honesty. I am beyond fluff and need a wake up call.