Miscellany questions about mobility limitations

[doodie]

Julie, doesn't Dr. Kabeish use minimally invasive?

How was it at JHU?

And is he as hunky as he looks in photos?

Amanda - I've sent you a PM

[foofer]

Pain or Discomfort

Backout/A (didn't know if you are using your name at present),

I am enjoying your attention to detail. You are asking lots of questions that I think of as I proceed with the day's events and then forget about as I am doing my "research" at night.

One of the details I am wondering about is everyone's pain BEFORE surgery. Something about your pain vs. discomfort discussion triggered some thoughts. I am always telling people I am not in severe pain but am never comfortable. Don't like the word "discomfort" probably for the euphemism reason, which borders on distruth . Some days I wonder if I am just so used to being disuncomfortable, really just dragging my carcass around, or if I really do have less ~~pain~~ than most. There is no question that some on this forum are just sidelined.

I thought of starting a thread "Describe Your Pain". Maybe I will (or you can if you want). When I first started going to scoli doctors on a regular basis, 10 years ago, I would rate my pain a 5-6. Then I lost balance once and fell backwards onto my butt and "sprained" my back. That was a 10. [Never really understood what "sprained" means. Maybe some of our nurses here can explain in lay terms for me]. After that, I understood what severe pain was and since then I am prone to describing general daily disuncomfortableness as a 3-4. If I were to be asked: rate your achiness/stiffness, that would be an 8- most of the time.

Today it's a 9, but it is snowing to beat the band here- more than a foot of snow- can't get out of the driveway. Ahhhh, springtime in the Rockies. Yesterday I was raking the yard...so maybe I am only a 3-4 and should not entertain the idea of surgery. Maybe that's why today, achiness is a 9. [I'm tempted to say it's a 12, but I don't agree with that tendency people (we) have to go past the pain scale to emphasize the depth of pain. It ends at 10, and don't use 10 unless it's as bad as it gets]

Anyway, with raking, I was careful though to hold my abdominals in position and switch sides. When I rake from the left side, I probably look like a 4 year old. All my work is now undercover in a world of white, but I will not be shovelling. I'm extremely happy today because work has ended until Memorial Day weekend- I made it through another winter dragging my carcass around the store, have a lunch date with my son who is not worried about driving in the snow in the least, and I can take naps and watch Oprah for the rest of the day.

My happiness today is a 12.

Another A

[foofer]

[QUOTE=Back-out;97677]

But I'M allowed to say it! Believing? Well, I'd like to know more about what this "discomfort" feels like! Wish someone were really good at describing it (Ouch Ouch Ouch Ouch)

This ouch sentence reminded me of something funny. I was talking on the phone to my college daughter once, and we were watching a gymnastics national championship on TV simultaneously. My daughter was a college gymnast and as we were watching a young woman running as hard as she could towards the vault, I said, "I wonder what she is thinking as she's running that hard towards a 'horse' that is almost as tall as she is." My daughter's answer was, "She's thinking,' Ouch Ouch Ouch Ouch Ouch Ouch.

[jrnyc]

Hi Amy
when i worked in NYC...i had 2 stressful jobs...i loved both of them...but the pain got to be too much...by the end of the day of my first job, before i went to my 2nd part time job, i couldnt stand up it hurt so bad...i got so busy at work with the kids that i forgot to take my pain meds on time...by the time i remembered, the pain was too great....

the beginning of this week, it rained in CT for 3 days straight...the pain was relentless...even with strong pain meds, taking extra pills, i couldnt get out from under the pain...til i finally gave up, gave in and took a hot shower til i turned into a prune!

even now, retired, on a good day the pain is a 7, on a bad day it is an 11!

hope you can get some relief from pain management or from something else.....

jess

[JenniferG]

a) turning head to drive?

Difficult, I tend to move round in my seat. Trying to use mirrors, but can't judge distance in them yet.

b) dressing - bras? any other problem articles of clothing? (I hear socks are a biggie and I assume one can't fasten dresses in back Tying shoes? Lord, I got SO tired of wearing rubber soled slippers everywhere after hand surgery!)

I didn't wear a bra for months. Luckily I am not big so I could get away with it. Even now, I still occasionally find myself stuffing my tshirt under my bra where it touches my scar. But it's no biggie.

c) reaching things on kitchen or other shelves?

No problem.

d) routine things like hanging clothes in closets

No problem.

e) scrubbing burnt pots (don't ask! )

No problem.

f) how far does one have to squat to compensate with knees (thinking of having knee joint replacement first, to salvage a little more of my independence!

The knees were a problem, they didn't like all this squatting, getting up again was also a problem at first. At 3 months I caved and bought a grabber. Two weeks later, my knees adjusted and I never used it again. Getting up is easy now, it just takes time to get used to these new exercises.

g) opening and closing sticky garage doors

Not for a couple of months.

h) sitting at computer (my lifeblood)

Sitting is hard for the first few weeks, but it gets easier all the time.

i) will I be allowed to climb on stools to reach higher things?

Not while on drugs!

j) (most of all) sleeping! How is one to lie after a back incision or a front AND back incision? Can I ever lie on my back again (like for MRIs or - more - social - activities?)

I was a stomach-sleeper but quickly got used to sleeping on my back. The drugs helped. Now I sleep on either side or my back. I can lie on my stomach now but not sleep on it - there's still a little pressure in my back when I'm on my tummy. It took a few months for me to be interested in anything more than sleeping, in bed.

Regarding pain, I think using the scale of 1-10 is a good one. Pre-op, my pain actually decreased in the last few months because, I think, I got very fit. I only had intermittent aching, around 2 or 3. Prior to getting fit, I would ache most afternoons or when I had to stand or lift, up to about a 6 or 7. Now, it's a zero, every day.

[JenniferG]

Forgot the getting dressed bit. It gets easier. It would make great footage for Candid Camera. Hold the wall, dangle the pants in front of you with the other hand, raise foot and put it in the hanging pant-leg. Swap sides. Lycra swimmers - expect to spend a little more time than ususal getting into them!

Everything is doable, but don't expect to look elegant.

We scolis need to keep a sense of humour.

[jrnyc]

Hey Jen
thanks for all that info...

i look pretty inelegant now when i get dressed! but i do alot of it sitting down, like the pants, which i assume i couldnt do after fusion to pelvis...

jess

[Nitram]

I guess we all learn different ways to cope...I'm fused to my pelvis and dress fine standing up...my only difficulty it still gt my socks on. I can do it, I just look like a fool doing it!

Rich

[foofer]

Hi Amy
when i worked in NYC...i had 2 stressful jobs...i loved both of them...but the pain got to be too much...by the end of the day of my first job, before i went to my 2nd part time job, i couldnt stand up it hurt so bad...i got so busy at work with the kids that i forgot to take my pain meds on time...by the time i remembered, the pain was too great....

the beginning of this week, it rained in CT for 3 days straight...the pain was relentless...even with strong pain meds, taking extra pills, i couldnt get out from under the pain...til i finally gave up, gave in and took a hot shower til i turned into a prune!

even now, retired, on a good day the pain is a 7, on a bad day it is an 11!

hope you can get some relief from pain management or from something else.....

jess

Jess,

Well hello, I think this is the first time we have "talked". Nice to meet you!

My thinking these days is that I will go on as I have been doing all these years, and if I get to the point of pain such that I want to see a pain management doc, I will make the call to schedule surgery.

My goal is to be able to continue the life I am leading now. I know I may have to interrupt this if I end up in big pain, or if my curves progress. Probably one or both will happen, or are happening.....In a perfect world, I would stay exactly the same, or improve, but if I were a betting girl, I would bet on pain and/or progression. I'm kind of an optimistic realist. I'm preparing for the worst and hoping for the best- spending considerable time working on working out..in hopes of avoiding surgery, but knowing I am probably just getting in shape for a better surgical outcome. Make any sense at all?

I am also silently cheering you on in your quest to manage your pain, increase you weight, and head into surgical territory with all your ducks in a row. I am really praying for that for you. Wouldn't it be nice if we could all meet up 5-10 years from now and all we could talk about is what we are doing and what we are excited about doing next!?

Thanks for your concern.

[jrnyc]

Hey Amy
nice to meet you too! and thank you so very much for the prayers and good wishes! i need them and am grateful for them!

i am amazed that you are not in greater pain with the size of your thoracic and lumbar curves...they are larger than mine are! but maybe you dont have the additional disc disease, spinal stenosis, arthritis and listhesis...???

my surgeon says that my discs are much worse than a year ago, even though my curves are essentially unchanged...so the increase in my pain is coming from my discs....


it was news to me that i will need 2 osteotomies and 2 lamenectomies in addition to the fusion....another surgeon i consulted with a year ago told me that i would not need any "otomies," which is how i asked him...his answer kind of puzzles me...but i have decided to go with my original surgeon choice...so no problem there...

i hope you can find some relief without surgery...i know how hard that is!

take care..feel better...
jess

[Back-out]

Amy

I thought of starting a thread "Describe Your Pain".

This is a GREAT idea! Not just describe but maybe also comment on how they deal with pain. How do they feel about the rating system (I have a problem - late explanation) How about you start it? I have so many questions I'm about to ask, it will make my name into an allergen otherwise.

So many people are writing in on my weight loss thread, it's almost turned into a poll - and for me, a very helpful one. (I see weight loss is not a given, for anyone. Whew! Never thought I'd be relieved at such a thing) Knowing more about the pain, would be a help to me too, as variable as it is.

I'd especially like to know how people would describe and compare their pre and post surgical pain. Sounds like that's what you want too. I think many of us fence sitters or even those who’re just waiting for their “date with destiny” , waffle a bit depending on their present level of pain.

Depending on the day and position, we wonder if it's really THAT bad (and whether their relief will be worth the risks). I guess we’re all doing a constant cost: benefit analysis. Relative pain is the chief variable on both sides of the equation - what we feel now and what we may be exchanging it for. (“Out of the frying pain into the fire”?) . Sometimes, I even doubt what I feel.

Anyhow, learning what others feel , before and after, could be very valuable, especially if they’re good “describers”. There’s also that human need to know what something feels like, whether it’s giving birth or undergoing serious surgery. WHAT DO YOU MEAN BY “IT HURTS”?

[titaniumed]

Hi Backout,

Mobility? Check out this picture. Yes, that is me. Its just in case you want to start skiing. LOL Im getting a little too heavy for tip stands lately, I haven't done that in years!
Ed

[titaniumed]

Look at this thead.
http://www.scoliosis.org/forum/showthread.php?t=10303
Ed

[Back-out]

Jess, did your "pelvic people" get lost?

I can't find it.

Where did you post it?

Hope you're OK. You seem to be almost as much of a night owl as me lately. (This MUST change for me, as I have so much to do to get ready - if not for surgery, just for a non-chaotic physical environment. I must hire someone, however broke I am. I can't have everything hanging on a possible event, however immense!)

Something tells me your sleeplessness reflects your anxiety about the whole process. I know that's the main thing going on with me. Maybe not having the structure of a job, for both us, makes us obsess a bit more too - as if it weren't a thoroughly obsess-worthy issue!

Instead of counting sheep, I feel like counting vertebrae jumping through a surgical theater.

[jrnyc]

Amanda...the thread "pelvic people" is in surgical first time section....just go thru the pages...it is not on first page of those threads anymore...it is probably on page 2 3 or 4 by now...

Titaniumed...great photo..as a non ski-er (and cold weather hater) i never heard of "tip stands" before! very cool!

question to Titaniumed about the gym...back before the pain was too much, i used to love the lower body machines...the ones where you push the weight...there is one where you are semi laying down...could you please tell me, with fusion to pelvis, can one do any of those semi laying down machines anymore...how bout the sitting up doing weight machine for thighs......where you straighten out your legs with the weight just above your ankles.........is any of that stuff possible after a long fusion...figured i'd ask you since you have the longest fusion!

thanks for any info you can give me!


jess