Re: Has anyone else experienced this?

June 27, 2003

,

While revision surgery is still done the road I am known as the family Klutz! I can trip over my own 2 feet, a rock, anything actually. My 11 yr old has inheritied the same trait-so I'm not sure the fused back has anything to do with it-but its always a possibility. I am so sorry that the medical field doesn't always recognize our needs beyond merely medical treatments-that sometimes it is our self-image and how others view us that makes all the difference in the world. Sometimes well-meaning people in our lifes can make comments that really hurt- my husband seems to think I should able to keep up with the housework, job, kids, etc.. just as I did years ago only thing is I'd like to but the body just doesn't cooperate! It is frustrating not to be able to do all that you want to do without having to deal with people who just don't understand it. Thats the best part of this group-we're all in the same boat and we are here to listen when you need to vent and we do understand your frustrations and we're all pulling for you. Hang in there!

Dee : )

Harrington Rod 1973

Discetomy/Laminectomy 2003

June 27, 2003

,

So sorry to hear about your fall. Hope you feel better fast. I've always felt klutzy walking since having to re-learn this seemly simple task at age 15. I have noticed in the last few years that I seem to trip over my own feet more often. Shoes play a big part in that so I'm more picky now. Uneven pavement is always a challenge. Just yesterday I almost had a fall like you did. If I hadn't been holding my husband's hand I too would have a bunged up face!

Feel better soon.

Joyce

June 27, 2003

,

I don’t know

what to say….but glad you sent the emails. I have not had an actual fall

myself. My balance is off and I

just keep walking into things. There’s nothing to do about it so I’ve stopped

apologizing for it.

If I was anywhere in your vicinity I’d give you a hug. Every single day we

put up with the unintended consequences of our fusions…pain, limitations

on our daily activities, loss of work, loneliness etc. You know better than most that sometimes

you just need to scream. So go ahead and cry, scream or just eat a bowl of

chocolate ice cream because you’ve earned it.

Wish you a speedy recovery.

Hugs and Smiles,

Lynne

Still more to fret

about

Sheesh. I just had the thought

that maybe you think I am impaired from too much medication.

I really don't think that is

it. I am not a klutz either. I don't have any neuro thing going on.

I don't know what it is. I

don't do this very often. In my defense, I should probably mention

that there is something about being fused to S-1 that impairs your ability to

break a fall. At least this is what I have experienced the two times I

have fallen since my Dec. 2001 revision surgery. What would have been a

nothing little accident in a different stage of my musculoskeletal saga somehow

becomes a big deal now. Perhaps you understand the biomechanics better

than I am able to do at the moment. I think my brain is just a little

fuzzy too for some reason. (I did not have any loss of consciousness, and

this is not from drugs either. I am still battling depression and am

feeling like a jerk at messing up in such a childish-seeming way in terms of

getting myself to a 2 p.m. appointment like a mature and socially adjusted

person with a clue.)

---------------------

Just wondering if anyone else has

had a similar experience. I am feeling pretty down about the whole

thing. I landed on the right side of my face, right shoulder, and right

knee. My right hip is also bugging me quite a bit, but it had been anyway

.. . . .

Thanks,

Support for scoliosis-surgery

veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group

does not control ads or endorse any advertised products.

Your use of

is subject to the

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June 27, 2003

, I'm really sorry to learn of your accident. I know I am more

clumsy just from being fused, so I can imagine the fusion to S1 makes it

even harder to avert a bad fall. I can relate to your reaction to your

doc's seeming lack of concern. Once I told my internist that I hadn't

gotten my mammogram yet because I ran out of money, and she said " That's

ok. " I wanted to say, Have YOU ever run out of money? It's certainly not

ok with me! " , but I realized she just meant it wasn't urgent to get the

mammogram, and she understood. Plus, I actually AM a wimp. At least when

it comes to verbal confrontation of pseudo-authority figures.

As far as letting your practitioner know how her callousness affected you

as a person, YOU GO, GIRL!

Sharon in southern New Hampshire :^)

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 fusion T5 to L4 w/ single Harrington rod

Flatback, congenital thoracolumbar kyphosis, L5-S1 degeneration, etc.

At 03:42 PM 6/27/03 -0500, you wrote:

Dear Spinally Revised Friends,

Last night I tripped on my way to a bus stop and fell on my face. Today, I

ended up missing an appointment with my doc & therapist. Here are two

emails I sent her after we talked on the phone.

(1) Subject: Not keeping it inside

OK, normally I would swalllow this down and " put it away, " but as you know

I end up turning into a latent powder keg and blowing up in every direction

when I swallow down my " little gripes " too hard.

I am really hurting like hell. I realize it was dumb to fall over some

uneven pavement onto my face. It makes me feel like one of the 3 stooges.

So maybe this is why you didn't bother to say you were sorry to hear about

my little injury. At the risk of sounding like a total wimp, though, I

sort of expected you to say something, and since you didn't, I really feel

like shit.

I think it is better to have told you this than to try to be cool. At

least I am crying instead of fuming. This way, maybe I will be less likely

to im- or explode some 6 hours, 3 days, or 1.8 weeks down the road and come

at you out of left field with a bunch of bitchy recriminations or whatever

I usually do with my, er, " negativity. " (Was going to write " rage, " but

that seemed a little strong.)

Well, that's it for now. I am very sorry I am having this much pain. I am

a little more worried about my back than my uterus but will be very glad to

have the estrogen. Thanks for calling. I am not going to proof or edit

this for fear of censoring myself. I hope you like [a yoga-article I had

sent her with another email] or find it useful. I am going to sack out and

finish reading Displaced Persons: Growing Up American After the Holocaust

(a fascinating memoir by ph Berger of the NY Times, who is a few years

older than I am and was born to refugee-parents in a DP camp somewhere in

Russia but raised in NYC from age 4 or 5 on).

I do understand you must be wiped out from the EPIC [electronic medical

record-keeping project] thing. It seems pretty ridiculous to be writing

about the Holocaust and, in the same email, bitching that you did not say

you were sorry to hear I got bumped on a sidewalk. But serious mindfulness

includes accepting everything you happen to feel, as I understand it, so

let me refrain from further self-indictment. At least until my poor old

face, shoulder, hip, and knee feel better than they do at the moment.

(2) Subject: Still more to fret about

Sheesh. I just had the thought that maybe you think I am impaired from too

much medication.

I really don't think that is it. I am not a klutz either. I don't have any

neuro thing going on.

I don't know what it is. I don't do this very often. In my defense, I

should probably mention that there is something about being fused to S-1

that impairs your ability to break a fall. At least this is what I have

experienced the two times I have fallen since my Dec. 2001 revision

surgery. What would have been a nothing little accident in a different

stage of my musculoskeletal saga somehow becomes a big deal now. Perhaps

you understand the biomechanics better than I am able to do at the moment.

I think my brain is just a little fuzzy too for some reason. (I did not

have any loss of consciousness, and this is not from drugs either. I am

still battling depression and am feeling like a jerk at messing up in such

a childish-seeming way in terms of getting myself to a 2 p.m. appointment

like a mature and socially adjusted person with a clue.)

---------------------

Just wondering if anyone else has had a similar experience. I am feeling

pretty down about the whole thing. I landed on the right side of my face,

right shoulder, and right knee. My right hip is also bugging me quite a

bit, but it had been anyway . . . .

Thanks,

June 27, 2003

You're not alone, !

Though I'm not fused to S1 and I'm not seeing a therapist, I have had my share of falls to the point where my husband calls me Kluks. Don't worry, he has his share of various other Kluks so I don't take it personally. I find that the more I'm under stress, the more I become a Kluks so I try to relax as much as possible. Petting the cat & /or doing cross-stitch/beadwork are some of the ways I relax. I accept things the way they are and continue with life, while being aware but not being concerned with the unfortunate event/experience. Depression is quite normal and it does help when others can give you sympathy/validation but please don't dwell on it. Expressing your feelings to us is quite welcomed for I think we have all gone through it at one time or another. And making others, especially in your care support unit, is good to make them more aware of what is happening. Holding frustrations in is not good for one's self. Enjoy your book, movie or whatever treat you enjoy to help you relax.

Llweyn in BC

Still more to fret about

Sheesh. I just had the thought that maybe you think I am impaired from too much medication.

I really don't think that is it. I am not a klutz either. I don't have any neuro thing going on.

I don't know what it is. I don't do this very often. In my defense, I should probably mention that there is something about being fused to S-1 that impairs your ability to break a fall. At least this is what I have experienced the two times I have fallen since my Dec. 2001 revision surgery. What would have been a nothing little accident in a different stage of my musculoskeletal saga somehow becomes a big deal now. Perhaps you understand the biomechanics better than I am able to do at the moment. I think my brain is just a little fuzzy too for some reason. (I did not have any loss of consciousness, and this is not from drugs either. I am still battling depression and am feeling like a jerk at messing up in such a childish-seeming way in terms of getting myself to a 2 p.m. appointment like a mature and socially adjusted person with a clue.)

---------------------

Just wondering if anyone else has had a similar experience. I am feeling pretty down about the whole thing. I landed on the right side of my face, right shoulder, and right knee. My right hip is also bugging me quite a bit, but it had been anyway . . . .

Thanks,

Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products.

June 27, 2003

Hello -

We haven't yet communicated, but I wanted to respond to your

memo since about four months ago (while still wearing my brace), I

tripped on the sidewalk. I don't know why this happened, but I

experienced it in slow motion (as if I was Poppins flying

through the air) and landed on my right knee and right elbow. Other

than a stiff and bloodied knee, nothing else untoward happened.

Fortunately, my brother was with me and helped me up, since I

couldn't get up by myself.

Ever since then, I have been very nervous when walking outside.

I walk like a gimp, am somewhat off balance, and am fearful of

walking faster for fear I will fall again.

I had my revision surgery nearly six months ago when I was fused

to S1, and I haven't been the same since. (My first surgery was 1

1/2 years ago when I was fused to L5 and walked much better.) I try

not to get angry at the cards I have been dealt; I experience

depression more often as I don't feel I have progressed very much.

My bloated abdomen further complicates my flexibility.

I don't know if the above is helpful to you. If you have

specific questions, let me know. a

> Dear Spinally Revised Friends,

>

> Last night I tripped on my way to a bus stop and fell on my face.

Today, I ended up missing an appointment with my doc & therapist.

Here are two emails I sent her after we talked on the phone.

>

> (1) Subject: Not keeping it inside

>

> OK, normally I would swalllow this down and " put it away, " but as

you know I end up turning into a latent powder keg and blowing up in

every direction when I swallow down my " little gripes " too hard.

>

> I am really hurting like hell. I realize it was dumb to fall over

some uneven pavement onto my face. It makes me feel like one of the

3 stooges. So maybe this is why you didn't bother to say you were

sorry to hear about my little injury. At the risk of sounding like a

total wimp, though, I sort of expected you to say something, and

since you didn't, I really feel like shit.

>

> I think it is better to have told you this than to try to be cool.

At least I am crying instead of fuming. This way, maybe I will be

less likely to im- or explode some 6 hours, 3 days, or 1.8 weeks down

the road and come at you out of left field with a bunch of bitchy

recriminations or whatever I usually do with my, er, " negativity. "

(Was going to write " rage, " but that seemed a little strong.)

>

> Well, that's it for now. I am very sorry I am having this much

pain. I am a little more worried about my back than my uterus but

will be very glad to have the estrogen. Thanks for calling. I am

not going to proof or edit this for fear of censoring myself. I hope

you like [a yoga-article I had sent her with another email] or find

it useful. I am going to sack out and finish reading Displaced

Persons: Growing Up American After the Holocaust (a fascinating

memoir by ph Berger of the NY Times, who is a few years older

than I am and was born to refugee-parents in a DP camp somewhere in

Russia but raised in NYC from age 4 or 5 on).

>

> I do understand you must be wiped out from the EPIC [electronic

medical record-keeping project] thing. It seems pretty ridiculous to

be writing about the Holocaust and, in the same email, bitching that

you did not say you were sorry to hear I got bumped on a sidewalk.

But serious mindfulness includes accepting everything you happen to

feel, as I understand it, so let me refrain from further self-

indictment. At least until my poor old face, shoulder, hip, and knee

feel better than they do at the moment.

>

> (2) Subject: Still more to fret about

>

> Sheesh. I just had the thought that maybe you think I am impaired

from too much medication.

>

> I really don't think that is it. I am not a klutz either. I don't

have any neuro thing going on.

>

> I don't know what it is. I don't do this very often. In my

defense, I should probably mention that there is something about

being fused to S-1 that impairs your ability to break a fall. At

least this is what I have experienced the two times I have fallen

since my Dec. 2001 revision surgery. What would have been a nothing

little accident in a different stage of my musculoskeletal saga

somehow becomes a big deal now. Perhaps you understand the

biomechanics better than I am able to do at the moment. I think my

brain is just a little fuzzy too for some reason. (I did not have

any loss of consciousness, and this is not from drugs either. I am

still battling depression and am feeling like a jerk at messing up in

such a childish-seeming way in terms of getting myself to a 2 p.m.

appointment like a mature and socially adjusted person with a clue.)

> ---------------------

> Just wondering if anyone else has had a similar experience. I am

feeling pretty down about the whole thing. I landed on the right

side of my face, right shoulder, and right knee. My right hip is

also bugging me quite a bit, but it had been anyway . . . .

>

> Thanks,

>

June 28, 2003

Sharon, you are so helpful and uplifting! And I am so grateful.

And, by the way, I can definitely relate to your comments re your internist's "That's o.k." I have gotten the same placid response several times in the past few years when I could not afford the co-pay, deductible, or whatever on an important procedure. In fact, I am way overdue for a follow-up endometrial biopsy myself at this point, or at least for a Pap smear (as well as for a repeat bone density scan, as well as for mammography, as well as for . . . . ); and, sadly, while one or more docs in unrelated specialties have felt overburdened by prescribing meds (e.g., hormone replacement) outside their own areas of expertise, they have been pretty passive in terms of finding some way to refer me to a gyne, given my fiscal constraints. (This despite the fact that I am insured under my former spouse's group policy AND under Medicare as my secondary payer! You'd think a few more MDs would settle for 20 bucks less than optimum rather than let the patient nurture a possible undiagnosed tumor or two indefinitely. . . oh, don't get me started!)

All of this has fortunately gotten me off my apathy long enough to dig deep into my minuscule resources and schedule my first appointment (next week) with an actual primary care guy my ex- signed me up for many moons ago. I plan to be politely assertive about my gyne needs with this PCP, as well about my need for a spinal checkup.

As for the bone density worry, I haven't been taking my Fosamax like a good girl. Soon after starting it, I began vomiting, probably from a med-med interaction. So I feel very blessed indeed that my misstep/mishap the other night did NOT do any apparent damage to my osteoporotic old bones. Do I owe this to a treasure-trove of intervening surgical steel hardware in the environs of my pelvis?!

Thanks again for your kindliness and empathy, Sharon.

Still more to fret about Sheesh. I just had the thought that maybe you think I am impaired from toomuch medication. I really don't think that is it. I am not a klutz either. I don't have anyneuro thing going on. I don't know what it is. I don't do this very often. In my defense, Ishould probably mention that there is something about being fused to S-1that impairs your ability to break a fall. At least this is what I haveexperienced the two times I have fallen since my Dec. 2001 revisionsurgery. What would have been a nothing little accident in a differentstage of my musculoskeletal saga somehow becomes a big deal now. Perhapsyou understand the biomechanics better than I am able to do at the moment.I think my brain is just a little fuzzy too for some reason. (I did nothave any loss of consciousness, and this is not from drugs either. I amstill battling depression and am feeling like a jerk at messing up in sucha childish-seeming way in terms of getting myself to a 2 p.m. appointmentlike a mature and socially adjusted person with a clue.)---------------------Just wondering if anyone else has had a similar experience. I am feelingpretty down about the whole thing. I landed on the right side of my face,right shoulder, and right knee. My right hip is also bugging me quite abit, but it had been anyway . . . . Thanks,

June 28, 2003

Lynne,

Deepest thanks for your understanding and concern. I especially appreciate your encouragement to scream and eat chocolate ice cream!

I don't get too weepy-whiney, too often, with this group (or at least I hope I do not!), but it is always so good to realize that people are here for us when we do need to sniffle or kvetch a little. Or, as the case may be, to to shriek, bellow, or "curse like a stevedore" (the last allegation, from my outspoken youthful years, is a quote from my mother).

This is an all-round great group of feisty individuals, and I am so glad you are one of them, Lynne.

Still more to fret about

Sheesh. I just had the thought that maybe you think I am impaired from too much medication.

I really don't think that is it. I am not a klutz either. I don't have any neuro thing going on.

I don't know what it is. I don't do this very often. In my defense, I should probably mention that there is something about being fused to S-1 that impairs your ability to break a fall. At least this is what I have experienced the two times I have fallen since my Dec. 2001 revision surgery. What would have been a nothing little accident in a different stage of my musculoskeletal saga somehow becomes a big deal now. Perhaps you understand the biomechanics better than I am able to do at the moment. I think my brain is just a little fuzzy too for some reason. (I did not have any loss of consciousness, and this is not from drugs either. I am still battling depression and am feeling like a jerk at messing up in such a childish-seeming way in terms of getting myself to a 2 p.m. appointment like a mature and socially adjusted person with a clue.)

---------------------

Just wondering if anyone else has had a similar experience. I am feeling pretty down about the whole thing. I landed on the right side of my face, right shoulder, and right knee. My right hip is also bugging me quite a bit, but it had been anyway . . . .

Thanks,

Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products.

June 28, 2003

Joyce,

Wow, this is SO helpful. It seems as if you and at least one other group member have experienced the sense of being unbalanced. I also found a reference to this in some of the scientific literature, although I believe it referred to loss of balance pre-revision-surgery.