Adapting to limited mobility

[golfnut]

Susan,
I know it's hard to be patient, but when you look at the big picture of a fused, straight spine for the rest of your life, it's so worth it. I would advise not bending or twisting at all for many more months. This is a crucial time for your vertebrae to fuse, so be very careful. I used the extender for wiping for probably 6 months or more and the razor with the long handle for a year. Look at the video in my signature if you want to see my mobility at 15 months. I couldn't imagine being able to do that during my first year. Now at over two years post-op, I know my swing shows more speed and a bigger turn. I don't have any pain during or after golf. You will be amazed at the improvements even after two years.

[jrnyc]

TiEd.....your PM box is full...

Karen...i just watched your golf video again...and again...

and what i immediately thought was...

i SO wish there could be a buddy system...
.....just for one day...
for a post op fused to sacrum person to spend a day with
a pre op person who needs the same fusion...
just to see daily activities...
maybe with golf, maybe not...
but mainly to watch a person who is fused to the sacrum and two or more
years away from surgery....
because some of us....or i will speak for me...
i... am amazed at what some post op sacrum folks can do,
and i do not believe it...til i see it...
it would be so nice to be able to see it up close!

hope you can golf today...
it is hot and sunny and beautiful out today in northeast
jess...and Sparky

[golfnut]

I know exactly what you mean, Jess. I just could not in my wildest imagination figure out how it would be possible to play golf again, even at a much lower level than I was used to playing. I had played in competitive golf tournaments before my surgery and I am doing it again and even won one last year (1st picture on Photo Bucket) Before I was allowed to golf again, I corresponded with Rich, from the forum, who had returned to golf and was very pleased but his golf game, however, his fusion started at T9. I even begged Ed to try to hit a ball to see if it was possible for someone fused T4-sacrum to actually make a full swing. I couldn't be any happier with my surgery and I'm living life to the fullest doing absolutely everything physically that I want to do with minor adaptations. I don't lift heavy objects or jog. I work out at the Y, tap dance, play golf, ride my bike, work in the yard, vacuum, wash windows, etc.

I keep my fingers crossed that I have no complications down the road.

Give Sparky a hug from me. I hope he does well with his surgery.

[Irina]

Thank you for starting this thread, Ed. It's very reassuring to hear from people one year plus. My doctor allows me now to put on socks without sock aid and I thought I would have no problems doing it. Boy, was I surprised that after several days of attempts I could barely manage to put a sock on my left foot, but can't even get close to my right foot. Did other people also have problems putting their socks on initially (I mean without sock aid)? I am fused T6 to sacrum.

[rockycarm]

Hi All,

So glad to respond to this thread. I have just passed my 1 year anniversary and so thankful I am where I am today. Surgery was T9-S1 and despite a numb right toe I can still give myself at least a 7 as I can walk, do everything for myself except for picking up very heavy items, I work f/t, drive, bend at the waist, can pick up things off of the floor. i am 2.5 inches taller, have a waist again and am not in pain. Do I do things different? Absolutely. I am still very cautious and look forward to my visit with the doctor on 7/1 hoping that he is going to tell me I am fused. Sitting for long periods is still a problem at times as I get tight in my legs and coccyx aches. This goes away with walking. I am so happy the warm weather is here and I can get out and walk more. Stay positive everyone - remember what it felt like before. I am hoping you are all better off now than before even though things may be different. I love to come on here and see how everyone is doing and it has truly helped me over the past 18 months before and after surgery. So best to all!!

[jackieg412]

Hi debbei,
I see you are fused to L-3---I think the people fused to s-1 and pelvis have less range of motion. It reallt impacts bending. Since my spine was built in stages with the t-10-pelvis first,then cervical and then thorasic. On the last one I noticed how much harder it was to reach for anything. I am short and always reaching for something. It is harder to tie shoes--mine are always tied on the side!
All of this being said--I lost mobilty piece by piece. Also since my rods are joined{because of revision} I try not to stress them too much.
I am always addapting somehow and trying to do most things. Right now I need some painting done---I just do not know how I will be able to keep looking up. Maybe because of the fusion in the cervical. I am not as fused as Melissa, but very close. I can look up--but not use my arms at the same time. I can reach up--but not look. It is rather hard to paint like that,, Any Ideas?
Thanks to all!

[Confusedmom]

To answer a couple of specific questions, Irina, I used the sock aid for almost a year. I didn't even try to put socks on without the aid until recently. When I finally tried, it took a few days to get more flexible. Now it is relatively easy. I still don't tie shoes, though. I use elastic laces in anything that needs tying, so I can just slip them on. To be clear, I COULD tie them; it's just easier not to.

Susan, were you the one who asked about the tongs? I really hated them, so I found a way to work it out with just the slightest squat (not breaking 90 degrees). Try wiping from front and back; see what works for you. I did stopped using them early--I'd say within the first couple of weeks, possibly.

Whoever was saying that people don't understand because they can't see our metal is totally right. Even my closest friends are surprised when I tell them I still can't walk quickly. Even my husband forgets that certain things are difficult. I don't know how many times I have had to remind him it hurts when he pats my butt!!

On an unrelated note, I am at a beach vacation this week and very proud of myself for being able to swim with my kids, walk in the sand, lie around on floats, and even get down in the sand and help build a sand castle! Also, no problems with the flight or sitting at restaurants!! (Hint from my physical therapist: always wear a jacket or sweater on planes; then you can fold them and put them behind you for lumbar support.) :-) Also, my scar is really fading, and I haven't had a single person ask about it!

Hey, has anyone else noticed they float more easily post-fusion?

Evelyn

[Confusedmom]

Jess,

Surely there's someone from the forum in your area you could meet? I met three people from the forum who were fused to S1 before I took the plunge. They all looked very normal and just like they had good posture. It reassured me quite a bit. One was Karen!

Evelyn

[titaniumed]

Wow! We have a bunch of posts here and everyone seems to be doing just fine with things.....adapting as we go, I guess.

Once again, I really hate to bring this up, but there are scolis that are out there with low numbers or scores that have not posted....I know a few and it really sucks, but the whole purpose of this thread was or is to cover ALL scenarios for those making their decisions. Accepting the fact that complications can happen, and even though it’s a small amount, they don’t matter unless it happens to you.
I learned that one from Linda.....and it really stuck......These posts are here, there not many but they are here on NSF and the SOS forums.

For those considering surgery, please remember that its irreversible, once its done, its done. The list of complications on spinal surgery is a long long list and even though we have to install our blinders walking into these surgeries, there is that element of risk....

Some of the people that have had a bad run of luck don’t post....Maybe the pain is too bad for them, or maybe they feel that they might have been cheated, but your also are part of the scoliosis community and your posts are always welcome.

For those revision patients that have done battle, you are examples of what I’m talking about, and are in our hearts as you continue on trying to get things right.....

Attending your local scoliosis meetings is a great way to “meet and greet” with all scolis, young and old, unfused and fused....I never thought of attending one before my surgeries, but have gone to a few and they are valuable resources in your decision making process.

Karen, I remember driving those golf balls while you were recovering....remember I felt as if full fusion was an advantage due to the stability? I’m so glad that your happy with the way things worked out. If we ever play, I want to warn you, I like to use exploding golf balls for entertainment value. (smiley face)

Irina, I wasn’t even close to putting on socks at 3 months without the sock installer. If you have permission, do your stretches slowly because it can trigger soft tissue injuries that can really be painful. I used a stool with one leg up, and leaned and hung my arms for the stretch. Pulling down reaching for toenails can trigger an injury.

Ed

[mabeckoff]

Ed,

I am sure that I am one of whom you speak that have not posted.

I am afraid of scaring people

Melissa

[jrnyc]

Ev...if anyone who is fused to sacrum lives in CT, i have not heard
of them....???????????????

jess

[JenniferG]

Irina, I'm another who couldn't easily put socks on at 3 months. It was more like a year before it became much easier.

Jess, I wish I could hop on a plane and come spend a week in Ct. You could throw whatever you could think of at me to do. I'm sure you would have so much more confidence if you were to see what is possible for me now. Seeing is believing.

And that's not to say everyone has a perfect outcome. After reading these forums for years, I know that sadly, that's not the case. The good thing is, skills, experience and techniques are improving all the time.

[Confusedmom]

Jess, Can't you meet someone in NYC? Surely some of Dr. Boachie's patients must live around there. There is a possibility I'll be there in the fall. I will let you know if I will be, and you can come meet me! I used to live in Bronxville, NY, btw. Can't be too far from you!

Yes Ed & Jennifer, I also have met two people who had major complications. One developed flat back syndrome and couldn't stand up straight easily. She had to have a revision surgery. Unfortunately, that resulted in a pseudarthrosis, and surgery number three. I think she's doing well now, finally. The other person doesn't have mobility problems per se, but her nerve pain, which did not exist before the surgery, is so bad that she cannot be out of bed (upright) for very long at all. She has had to quit her job and finds it difficult to do activities with her kids or travel. I think people in these situations sometimes don't post because it depresses them to read posts about everyone moving on and getting better when they are having such a difficult time. I wish they would post more so people considering surgery could get the full picture.

[jrnyc]

Ev, of course i would be willing to meet anyone
in NYC who had fusion to sacrum....
i would go into the city just for that, if need be...

surgeons put me in touch with post op patients on the phone...
Dr Lonner and Dr Anand both did that...
but there was no one i met with personally and close up...
at the time i was in waiting rooms at surgeons offices, no one was
waiting who was post op that i could have met with...
i think a buddy system of names of post surgery patients who
are fully recovered and willing to meet with pre op patients would be
a great thing....i have heard and read other people considering fusion
say the same thing....how much it could help them with decision making.
in my case, i would want it to be someone fused to sacrum...

jess...and Sparky

[susancook]

Ev, of course i would be willing to meet anyone
in NYC who had fusion to sacrum....
i would go into the city just for that, if need be...

surgeons put me in touch with post op patients on the phone...
Dr Lonner and Dr Anand both did that...
but there was no one i met with personally and close up...
at the time i was in waiting rooms at surgeons offices, no one was
waiting who was post op that i could have met with...
i think a buddy system of names of post surgery patients who
are fully recovered and willing to meet with pre op patients would be
a great thing....i have heard and read other people considering fusion
say the same thing....how much it could help them with decision making.
in my case, i would want it to be someone fused to sacrum...

jess...and Sparky

I did not meet anyone before surgery. except I talked w/ Gayle briefly in a waiting room. I should have asked her to get up and move, but did not think about it at the time. Irina told me about a woman that she met and her ability to move with a full fusion. For me, it was the progressive disability that I had and the fact that I was so greatly limited in my ability to have a normal life, that and the pain. I am 2.5 months postop and thrilled with my lack of pain. Sure, my right leg is a little bit weak and my L buttocks hurts sometimes....but hey, it beats lying on a couch all day. There are SO MANY outcomes that could have happened to me that did not. Yes, I wanted a lot of mobility and I think that I have it although I have not tried most movements. If you are going for perfection, it probably isn't there or will not be there with surgery.
Susan