Adapting to limited mobility

[Susie*Bee]

I also did not meet anyone with a successful surgery before or after my surgery. Life is just that way sometimes. Irina-- I still use a sock aid six years after-- it's second nature. Part of my problem is that one of my hips doesn't bend quite enough-- don't know if it's because of my arthritis or what. But, what the heck, it's ok. I'm totally used to it.

[leahdragonfly]

take it slow and easy, Susan

Hi Susan,

you mentioned up thread that you have tested out a little bending and a little twisting...my strong advice to you is DON'T right now!!!!!

I understand how impatient you feel...I was very impatient with myself in recovery too, but it is simply not worth it to push your mobility limits now and find out later you compromised a solid fusion. I have posted before that I was hazy in my understanding of some of my restrictions, as I did not get clear instructions about my limitations that I recall (probably due to the post-op drugs). As you know I ended up with broken rods at L3 and L4 at 15 months post-op, and I will always wonder in the back of my mind if I did something to prevent a solid fusion. I will of course never know, but let me tell you, it REALLY sucked having to go through a major, 8 hour A/P revision. I am now about 16 months post the revision, doing very well, although I still feel sometimes like I'm waiting for the other shoe to drop. I think in time if all continues well I will be able to move beyond that.

And finally, to answer your question, I was able to wipe the normal way without any tools or help from day 1. I have flexible shoulders which helps. We are all so different!!

Take care, and please don't over do it.

[jrnyc]

i am a very visual person...always have been....
i can hear something and not get it...
but if i see it, it is done...i got it...
even better is movement....muscle memory works for me, too....
if i see and do something, it will stick with me always.

so i need to see things...
not just hear about them on the phone...
i need to see them happening in front of me...
it would make a permanent lasting impression on my brain and
psyche....probably an emotional impact as well.
that is the reason i want to meet a "post op to sacrum" person...
for others, i am sure there are other good reasons as well...
i have heard it from almost every "no op yet" person i speak or
write to....
SEEING...watching... the mobility level would be most helpful.

jess....and Sparky

[Irina]

Jess, if you are ever in Northern California, I'd be more than happy to meet with you. I understand how you feel - I met a woman my age fused to sacrum before the surgery, and it was the most convincing experience.

[twistedRN]

limited mobility scale

Hi Everyone,
It has been a long time since I visited the forum but it is great to see how much support you all continue to give to fellow scolis out there!

As far as the answers to your questions, I was fused T2 to the sacrum with pelvic fixation and am now almost 15 months postop. I would rate my adaptation to my decreased mobility at about a 7-8 right now. I never did wear a brace, either preop or postop, although I often feel like I am wearing one now! I have adapted to getting things off the floor by doing deep knee lunges keeping my back straight. I am now able to tie my shoes either by putting my foot on something high (like a bed) or putting one foot on the opposite knee, although that is still very tight for me. I can shave my legs normally except I am unable to reach the outside of my left lower leg for some reason. I haven't used any of the assistive devices since about month 6 or so, although I do still use my grabbers because it is so much easier than doing those deep lunges! I have been doing PT for a few months now (3x a week) for decreased shoulder ROM related to my shoulder blades not moving well on my torso / fused thoracic spine. It is definitely helping with the ROM in both shoulder joints and also the tightness I feel across my mid back.

One of my biggest issues is driving for two reasons : 1. my head is pushed forward/down when it hits the headrest if I try to sit in the seat with no pillow behind me....anyone else have this happen?? It is quite frustrating! 2. When I try to merge into a lane, coming from the right, it is very difficult to turn enough to see the cars coming at me from the left (especially since I am trying to preserve what few neck vertebrae that I have that are still unfused!). I usually try to not pull up as far into the intersection so that I can see the cars on the left easier before I reach it.
Anyhow, hope that answered your question! I hope to be a good solid 9 on your scale this time next year!

[jrnyc]

hi Irina
THANK YOU so much for the offer....
i would definitely take you up on it if i am ever out
there...
sending you PM

jess...and Sparky

[Doodles]

OK, I guess I will respond. Ed did a lot of encouraging to get us on here! Plus, after reading Twisted RN I can say ditto to almost her whole post & save a lot of time. I'm 4 years out now. I have all of those same issues except 2-- I don't use my grabber anymore although there are times I could. Also not a real problem with shoulder muscles. However, I have a lot of pain/burning sensation in left shoulder and neck. That seems to be getting worse all the time. Her driving issues and headrest issues are mine also. I see we are both T2 to pelvis so perhaps that's why we are similar. Getting in and out of cars (except my Prius which works perfectly for me) is still a problem. Especially when they sit low. It's very hard to close the door once you are in also. I would love to go back to yoga, etc. but getting down on the floor and doing any of those moves are virtually impossible so I am fine with doing zumba--I really like that.
I guess just considering mobility I'd say 7-8 too. Over the last few days I'd been reading the responses and those were the numbers I kept coming up with. Then I saw Twisted had the same and we were very close in our difficulties. Oh, I also don't lunge so much as just go down on one knee to get to the floor. And I did not wear a brace. Janet

[jrnyc]

Janet....question...
can you use a cane to grab the car door and get the door closer
to you, then slam the door closed...that way you would not be
reaching or stretching out your arm...

just a thought....
jess...and Sparky

[Irina]

Janet and twistedRN,

I have the same issue driving - headrest pushing my head forward. It's even more annoying when I am a passenger in a car. I am fused T6 to sacrum. I remember reading somewhere that some people reversed the head rest - have not tried that yet.

[jackieg412]

That Is an interesting Idea--to change the headrest. I have all of the same issues--but I have a Pt criuser for a car. I am short and this is the car that is easiest to get in or out of. I grab the seatbelt and the door on the way in,that makes it a little easier. Also seeing over my left shoulder is impossible.I am fused t2-pelvis and have c5,6,7 fused as well. I don't know if it is the neck or spine that is the problem.I limit were I drive--I need to avoid any fast traffic from the left. I also hold the car straight as I can at stops to help with the over the left side. I spent a long time trying to convince a PT about this problem--I am happy that someone else understands

[titaniumed]

Head rest adjustment

Guys

It just isn’t worth it taking a ride in any car if the seat isn’t set right....I refuse to do this. The headrest should not be touching the back of your head. It should be slightly behind but not touching or certainly not pushing your head forward. Asking someone for help is easy, not asking can be painful.

The headrest is there for whiplash protection. If someone slams into the rear of the car, the headrest saves your neck from major damage. Turning it around or removing it is not a good idea since its technically a safety device.

If the headrest cannot be set, take the car to the dealer, and have them address it. They should not charge you for this.

Ed

[Doodles]

Jess--Thanks that is an idea. It is only a problem when I'm in other people's cars! Mine is great. My husband's isn't bad but can't get the door shut from passenger side. I'll have to try that.
Ed--I wonder if they could fix that. Once again it's other cars mostly. I can put my own seat back but it's not as comfortable. In the backseat of cars is the worst. You can't adjust the seat. Janet

[Susie*Bee]

I guess some things others have listed I just consider part of life-- I use grabbers sometimes, but no biggie, I use sock aides, no biggie either. Part of it is arthritis in hips, part that I have a short torso and long legs-- making it a long reach down to my feet. Again, not a big deal. You move on and adjust. And I am a wimp and get slip-on shoes... even my New Balance ones. Regarding headrests. Most interesting! Our Chrysler van is fine with me, but both my kids' Hyundai vehicles (one sedan and one SUV) do that "push your head forward" business. I have found that I take a sweater or something similar and wad it up and put it behind the small of my back enough so that I stick out more and that helps immensely. I also have had that problem on some airlines. I also am fused to T2.

[Doodles]

I guess I'm just wimpy! I am just so amazed when I hear about some of the things people can do AFTER surgery. Yoga for instance. Just can't imagine. I even tried it once. I might as well have been a flipped over turtle! Not that I need to do that--it just makes me wonder about the everyday stuff. I can get along fine though.
I was trying to just respond to the mobility issue and not other ones, but I'm afraid the cosmetic and general-come-and go pain issues cloud my 7/8 number. And...I'd still have to do it all over again because I couldn't have gone on the way I was. Yes, I always have a pillow in both cars and try to find the right spot to make it feel better but still pretty tricky. But it does help. I would love to say 10! Janet

[Susie*Bee]

Janet-- I think Ed wanted us to say how well we have ADAPTED, not if we have gotten back to doing everything we once did or once wished we could do. At least that's how I took it. I have "adapted" well, and am quite content, but I can't do a lot of things some of these others can do. We are probably in the same boat. I've accepted where I am, and it sounds like you have too. Stabilized, no pain almost all of the time, but definitely have a lot of things I can no longer do. How does Robert Frost's poem go? Anyway, I took the other path and am glad of it, even with limitations. Oh, right-- those aren't quite his words. (smile)