Adapting to limited mobility

[titaniumed]

Ahhh.....the bed discussion. Adapting to dealing with the bed and sleeping is a major issue after scoliosis surgery, but it does get better.....

Getting in and setting your hips down in the right spot before laying down is critical. I don’t know how many times I would do this, then lay down to find out that I was too far up on the bed and my head would hit the headboard. Wow! Then I would have to log roll on an angle to get my head off the headboard.....and eventually try to log roll completely out of bed to make another attempt. This was a major painful event and it happened quite a few times and with a broken shoulder! If you logroll out with your head near the edge of the bed and your feet in the center of the bed, it’s a disaster. This is where it gets tricky. Man-o-man!

I then would set my hips half way down the bed before laying down again and my head would be 2 feet from the headboard with my feet hanging off the end of the bed.....What are you going to do? I would be lucky to get an hour of sleep.

Things did improve, and now can move up and down the bed.....it took me around a year to get this perfected.

For those that do tough surgeries, its almost better to sleep alone.....Any disturbances are just dreadful, and sleep is so needed......

Don’t forget the foam! Latex foam topper for the bed, 2-4 inches thick.

The broomstick feeling does go away. It takes a while, and mind diversion helps. Transfer your thoughts! Dream about things other than your back.

Walk, walk, walk, talk, talk, talk but not about your back or your surgery.....people also get tired of hearing about it.

Ed

[Irina]

About the broomstick feeling... I like that feeling. I would not describe it as a broomstick though. Before the surgery, I felt that my torso was pulled to the right, left hip to left, ribs rubbing against the pelvic bone - the works. The feeling that I have today is that some internal strength is keeping me straight and tall. I don't feel the hardware, just feel STRAIGHT. I would never trade today's feeling for that old feeling of tearing my bones apart, and loss of flexibility is a reasonable tradeoff.

[the_baroness]

Hugging and kissing (sock tool be damned)

I think the limitation I am feeling most keenly right now one month post-op, is how to hug or kiss my friends who come to visit me. Particularly friends who are shorter than me! I can't lean down to kiss them hello or goodbye! I'm starved for human interaction right now here at home. I love my cats, but I think I'm spending a bit too much time with them!

Has anyone else experienced this? (Not the part about the cats, the part about having trouble hugging or kissing!) My husband is bald, and for the almost 20 years we've been together, I've loved leaning down to kiss his bald head when he is sitting down. And now I can't do that. We're trying to revise the procedure so he leans towards me when I'm going in for the kiss. I'm glad I have a husband that will work with me on this. But now I just need to get all my friends to help me come up with a revised procedure so I can hug and kiss them. I guess this is sort of a trivial issue. The other limitations of T10-pelvis fusion are just now beginning to reveal themselves to me. (E.g., loading and unloading the dishwasher, etc.) And I don't care if I have to use the sock tool for the rest of my life. But I want to be able to hug people properly again some day.

[Irina]

I think the limitation I am feeling most keenly right now one month post-op, is how to hug or kiss my friends who come to visit me. Particularly friends who are shorter than me! I can't lean down to kiss them hello or goodbye! I'm starved for human interaction right now here at home. I love my cats, but I think I'm spending a bit too much time with them!

Has anyone else experienced this? (Not the part about the cats, the part about having trouble hugging or kissing!) My husband is bald, and for the almost 20 years we've been together, I've loved leaning down to kiss his bald head when he is sitting down. And now I can't do that. We're trying to revise the procedure so he leans towards me when I'm going in for the kiss. I'm glad I have a husband that will work with me on this. But now I just need to get all my friends to help me come up with a revised procedure so I can hug and kiss them. I guess this is sort of a trivial issue. The other limitations of T10-pelvis fusion are just now beginning to reveal themselves to me. (E.g., loading and unloading the dishwasher, etc.) And I don't care if I have to use the sock tool for the rest of my life. But I want to be able to hug people properly again some day.

I tell my friends to jump. Seriously. I squat a little and have them stay on their toes :-) I am 5'9"

[golfnut]

Just keep in mind that many of these restrictions and limitations are temporary. I think that is why I never got down at all about anything I wasn't allowed to do (no golfing for a year comes to mind-imagine that)

[lray]

Wow, I have not been on this forum for a long time, I guess that is a good thing?!

It's been 2 years and 9 months since my surgery, fused T2-L3, and I would give myself a 7/10 as far as mobility goes. Swimming is not as easy (can't swim breast stroke well, must do back stroke or side stroke). I still bang my head ocassionally. We have a boat now but I've been advised to NOT water ski. I tried riding on an inflatable tube but the bouncing hurt my neck so I just enjoy myself INSIDE the boat! I feel like a robot sometimes in the way I walk and with the stiffness. I also have that turtle on the back in bed syndrome too...have to roll to my side and I have to wake up in order to roll over. Oh well.

My scoliosis related pain is GONE! Now it's just my neck and lumbar.

I did not wear a brace after surgery.

[titaniumed]

Hi Laurie, Glad to see your doing ok.

Be careful in the boats......

I waterskied once before my surgeries in 1998 and had no problem with skiing, but hanging onto that rope just completely trashed my back, and it only took about 4 minutes. I was also on an island in Canada and had to hunt out a Chiro in Ontario who essentially was afraid to touch me. He did help me, but I have to say I never waterskied again.

I have herniated cervical discs now....so protecting my neck is now a priority.

Ed

[Doreen1]

I squat to hug and kiss everyone, I'm 5'10".

[Tableone]

I'm sure everyone is different, and people's body's have different levels of mobility after surgery, but here's how it is for me today:

I was fused T2 to L3 twenty-five years ago. I have never gotten used to the limited mobility/flexibility. I still have to sit up in bed in order to turn over. I still can't back my car up more than a few feet because I can't twist enough. Many times, I have to get a stranger to do it for me as I'm afraid I will crash into something. Every time I change lanes on the freeway, I realize how much I have to turn my head because my spine can't twist properly. Cutting my toenails is painful, especially as I get older. Getting in and out of other people's cars is still painful and difficult.

Things I used to do which I can no longer do:

Swim. I was an avid swimmer. After surgery, I could not twist my body enough to get my head up for air in the forward crawl. Since my spine wouldn't arch, I couldn't do the breast stroke, either.
Dance. I feel awkward on the dance floor as I can't move my hips side to side. I look stiff, and I am stiff! Also, since I can't arch my back many ballroom moves don't look right.
Look at the sky or the stars. When I stand up, I can't really look at the sky in the same way as everyone else because my spine does not bend, and my head/neck only goes back so far. If I really want to look at the sky, I have to lie flat on the ground.
Sea or River Kayak: A few years back, I wanted to take it up. I took several lessons, but as I couldn't move my hips as instructed to steer and paddle the boat, it was almost impossible. Doing a kayak "roll," was also impossible. The hardest thing was trying to explain to all the other kayakers. People just don't understand when you say you have a completely fused spine. They kept saying, "You're not moving your hips!" In the end, I had to give it up.
Do sit-ups.
Lie on my stomach and read a book.
Use any kind of stomach or ab cruncher machine at the gym; it require your spine to bend.
Climb trees or climb over a fence. I can't get my legs up high enough.
Run. Can't do it because of the impact.

I can't lie on my stomach on a narrow table, like an operating room table. Had an epidural recently and the OR staff just didn't get it. The table was not wide enough for me to log roll over onto my stomach.

I attempted to be very active over the years because it made me spine feel "looser," when I was active. Finally, I took up hiking which I loved, and which I could do. I enjoyed that for several years, but then I developed arthritis in both knees, so I can't do it anymore. I also had success with weight-lifting using machines with proper back support and did that until my lower, un-fused spine collapsed from the long fusion.

I am now thinking of taking up sailing in a sailing club, as that involves mostly standing, I think. If it weren't for my knees, I'd still be hiking and walking, too.

Thanks. Best wishes to all.

[Confusedmom]

Tableone,

Thank you for posting. I really appreciate hearing from people who have been fused a long time, as it seems like there is so little information about what happens over time with a fused spine.

I have many, but not all, of the same limitations you have, since I'm fused T4-S1. A few thoughts. Dance if you want to. Who cares what it looks like if you're having fun? I still dance and have literally no movement in my hips.

Two, I am so impressed at all the different activities you have tried. And I agree, activity does make my back feel looser. If I skip exercise for a few days, bam. The muscle spasms are back.

Last, I wonder if you would be a candidate to have your fusion extended? It could possible deal with what I am assuming is pain that made you stop lifting weights. Just a thought.

I have enjoyed floating on my back in the pool, and also back stroke. I like walking on a treadmill, but I am also frustrated by not being able to walk as fast as pre-op.

Thanks again for all of you insight and honesty.

Evelyn

[jrnyc]

Ev...i thought the same...

Tableone...i read your other forum posts...
i am so sorry for the pain you are in...and for how upset you are about
the things you can no longer do...
you mention on one of your other posts that your lower spine has "collapsed" so i am wondering, as Ev mentioned,
whether any surgeon has talked to you about extending your fusion
to sacrum...Linda Racine had that done...over a year ago, going on two
years...i think she is pleased with her results, if you wanted someone
to write to about it...many others on forum have also had their fusions
extended...i do not know if that is something you would consider.

i have not had surgery...and cannot do many of the things you mentioned...i could do many things before my pain got bad.

i met with Ev on Labor Day, and i was so happy to see how well she
looks at 18 months post op...she said she feels good, too.

jess...and Sparky

[mkatz]

One thing I have had problems with is the motorcycle thing......I used to ride supermoto years ago and realize that its nuts and have quit and sort of adapted.....I don’t know if I will ever get over this....Here is a sample. I sold my “hot” bikes during my recovery.

200MPH in the rain. Isle of Man TT.
http://www.youtube.com/watch?v=LU-ynRoqDEs

Another example of adapting....mental and physical adaptation.

“Conditions very iffy, but they are going anyway”

Sound familiar?

Ed

One thing i miss is riding (at a much lower, noncompetitive level than you have done). I expect to be fixed T4-S1 with pelvic fixation. Given that, is returning to MC riding "realistic"?

[susancook]

Mkatz, whatever Ed says, probably water it down for a normal "thrill seeker". Did you see his skiing video? I rest my case ;+]
Susan

[titaniumed]

I never actually competed in supermoto which is different than the TT race, but still you get the idea. I should have posted a supermoto race video instead. That’s pavement and dirt with jumps combined.

Riding supermoto exerts high “G” forces and I did have problems "before”my surgeries with back pain. It all depends on how hard you ride.

Normal motorcycling is fine, its actually better because I can sit for longer periods now riding street. I have a KLR-250 that I hang off the back of my RV for transportation purposes while camping. Big difference between a KTM MXC-525 and a KLR-250, like the rabbit and the tortoise. This was done on purpose to slow me down. My neighbors got concerned when I was out in the garage revving the KTM when I was 6 weeks post. I sold it and cried for months.

Crashing is always something that we try to avoid, crashing after scoliosis surgery increases the fear factor since it wouldn’t entail just road rash or a broken limb, cracking a fusion would probably require more spine surgery....

I see your getting ready.....

There are not many male members so if you want to chat on the phone, PM me.

Ed