pitiful Kam

[Guest guest]

Suzie,

You are so sweet and always 'sound' so chipper. Amazing how we can

do that while dealing with chronic pain.

Unfortunately, the last few days have been really tough. I have a

very sharp pain in my low back (around my left iliac crest) and

referred pain about an inch or two above my left (outer) ankle bone.

It's constant and relentless. I called Bernie (Dr. B's nurse) today

and she asked me very specific questions about the pain as well as

how much pain medication I have been taking.

To make matters worse, my dear friend and neighbor told me last

night that I look like I don't feel good and the woman that owns the

house next door (we're thinking about buying it) greeted me today

with " You look like you feel bad. " Nothing perks you up quite like

that! My brother said he could hear my pain in my voice this

afternoon as well.

I am going to go get my TENS unit now and see if that doesn't give

me some relief. I'm so tired of hurting and it doesn't seem that

anything will make it stop. Right now, I just feel depressed. I hate

to even admit that I'm so miserable because I prefer mind over

matter, but right now, my mind is not quite that strong.

Prayers and happy thoughts are appreciated. Recommendations for

hysterical movies would be helpful too. I would love to laugh right

now (even though it makes my incision hurt). This, too, shall pass.

kam

[Guest guest]

Oh Kam - my heart goes out to you. I know where you are coming from. I

know about the feeling of being so tired of hurting and that depressing

feeling. But you sent me an uplifting e-mail when I was depressed and I

believed you that it will get better. It will. Count the days it helps.

Today is day 100 for me. Every minute you get better.

Watch the Ellen show - it helps - so is so funny.

I'm thinking of you.

Lorrie

[ ] pitiful Kam

Suzie,

You are so sweet and always 'sound' so chipper. Amazing how we can

do that while dealing with chronic pain.

Unfortunately, the last few days have been really tough. I have a

very sharp pain in my low back (around my left iliac crest) and

referred pain about an inch or two above my left (outer) ankle bone.

It's constant and relentless. I called Bernie (Dr. B's nurse) today

and she asked me very specific questions about the pain as well as

how much pain medication I have been taking.

To make matters worse, my dear friend and neighbor told me last

night that I look like I don't feel good and the woman that owns the

house next door (we're thinking about buying it) greeted me today

with " You look like you feel bad. " Nothing perks you up quite like

that! My brother said he could hear my pain in my voice this

afternoon as well.

I am going to go get my TENS unit now and see if that doesn't give

me some relief. I'm so tired of hurting and it doesn't seem that

anything will make it stop. Right now, I just feel depressed. I hate

to even admit that I'm so miserable because I prefer mind over

matter, but right now, my mind is not quite that strong.

Prayers and happy thoughts are appreciated. Recommendations for

hysterical movies would be helpful too. I would love to laugh right

now (even though it makes my incision hurt). This, too, shall pass.

kam

scoliosis veterans * flatback sufferers * revision candidates

[Guest guest]

Dear Kam,

I'm so sorry your so painful at the moment, heres my best wish that it will

resolve itself. Not fair to have those pains on top of the surgical pain.

After my first revision I had some quirky pains that resolved themselves,

just took time and me not rushing the healing process. This must be

especially hard since you popped back from the first stage so quickly,

except for that bad screw. You are in my prayers, I'm pulling for you!!!!!

It's so cold here, and we finally have some snow, this - weather with the

wind chill is awful, did you guys get any out your way?

The best funny movie I saw last year was " Diary of a Mad Black Woman " , you

will laugh your @#$% off. They are making a sequel to it this year and I

can't wait! They just don't make many really funny comedies of late, or they

are potty humor or just stupid. Hope you enjoy it!

Pulling for you,

[ ] pitiful Kam

> Suzie,

>

> You are so sweet and always 'sound' so chipper. Amazing how we can

> do that while dealing with chronic pain.

>

> Unfortunately, the last few days have been really tough. I have a

> very sharp pain in my low back (around my left iliac crest) and

> referred pain about an inch or two above my left (outer) ankle bone.

> It's constant and relentless. I called Bernie (Dr. B's nurse) today

> and she asked me very specific questions about the pain as well as

> how much pain medication I have been taking.

>

> To make matters worse, my dear friend and neighbor told me last

> night that I look like I don't feel good and the woman that owns the

> house next door (we're thinking about buying it) greeted me today

> with " You look like you feel bad. " Nothing perks you up quite like

> that! My brother said he could hear my pain in my voice this

> afternoon as well.

>

> I am going to go get my TENS unit now and see if that doesn't give

> me some relief. I'm so tired of hurting and it doesn't seem that

> anything will make it stop. Right now, I just feel depressed. I hate

> to even admit that I'm so miserable because I prefer mind over

> matter, but right now, my mind is not quite that strong.

>

> Prayers and happy thoughts are appreciated. Recommendations for

> hysterical movies would be helpful too. I would love to laugh right

> now (even though it makes my incision hurt). This, too, shall pass.

>

> kam

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

Kam,

I am so sorry you are having these rough days. It is just wierd how

the trajectory to recovery is just not a straight upward climb. It

seems like your body almost has to go backwards to get well...at

least that is the way it seemed to me at times...and that, coupled

with unexpected new pains has got to be depressing. But still, just

as day follows night and the sun follows the rain, I will bet that

the day will come when you all of a sudden realize " Hey, I am

feeling better! "

I agree that it is possible that having the surgeries the way you

did...spaced farther apart than most of us, you have a unique

circumstance where you may have expected to feel much better....but

for me the second surgery completely bowled me over....and the first

surgery did not...but having them only a week apart I was stunned by

how much more awful I felt.(...in fact a year ago right about now I

was waking up in recovery from #2 wishing someone would just load

the gun....!)

You had a chance to go out and about and actually start to

feel " okay " so it probably is signifigantly harder on you having

these stages so far apart.

Maybe it is a good idea to give " in " to the pain a little and not

expect too much....go ahead and be cranky and tearful. And watch

Ellen and pretend you are dancing aoround the livingroom with

her....and just wait it out.

I have pretty much loved all the Jim Carey movies for sheer

idiocy... " Bruce Almighty " is one of his funniest,I think. I would

recommed Chevy Chase's Christmas Vacation but the season is

wrong...but then again, maybe you deserve a Christmas " re-do " !

Hugs & good wishes, Cam

p.s. You didn't tell us what Bernie said....does she think anything

is amiss?

[Guest guest]

Thank you all for your kind words. I hate to complain, but this has

been so tough (and I know you all can both take it as well as dish

it out when needed). I just talked to Bernie again and Dr. Bridwell

said that what I reported kind of hit like buckshot - not in a

specific area. So, I told her that Adam massaged my ilio-tibial band

last night and we found a knot in my thigh, which reinforces my

theory about tightness. I don't know if it is really a knot, per se,

but there is a bump along the band and it did feel pretty good when

he was working on it. I also used my TENS and it was moderately

helpful, but I found myself changing the setting often to try and

get more relief. Pulling the electrodes off my numb skin was quite

uncomfortable as well.

Bernie used to work for a pain management doctor and said that while

Dr. B might not endorse all of her advice, I should try some kind of

capsaicin cream to see if that would help. AdvoCare makes a cream

for muscle and joint pain (SootheX) and I am going to have Adam

massage that in after I take a hot shower. It hadn't even crossed my

mind, but makes a lot of sense.

I told her I would love to sit in a hot tub with the jets directed

at the area and she poo pooed that idea. But, she said that if it is

muscular(and she agreed it sounds like it is), then warmth applied

to the area while in a comfortable position, along with gentle

massage and muscle relaxers twice a day instead of just at night,

should help. I am supposed to call her on Monday and let her know

how I am doing.

I also asked her if I could go to a physical therapist or massage

therapist and she said that they don't recommend it at this point

because there are very few who understand this surgery. My PT gives

phenomenal massages and always errs on the side of caution because

he knows he doesn't get this surgery and cares about me too much to

hurt me. If I'm not better by Wednesday, I may call him. The biggest

reason I'd prefer to go to a 'professional' is that I think I'm

driving Adam crazy. I feel so neeedy!

As I mentioned before, my gait seems quite a bit different. I did an

indoor walk the other day because it was so windy and part of it

involves widening your gait to work different muscles. This was fine

on the right, but didn't work so well on the left. My left leg

mobility is severely limited and the whole area squawks when I try

to move it beyond a regular step. This feeling is actually very

similar to when my piriformis acted up only it's painful on the

outside more than the inside (if that makes any sense).

If anyone has recommendations on how to relax the muscles around my

left gluteals, I would greatly appreciate it. If not, let's hope

that we have found the CAUSE and that it's not something completely

different.

Happy weekend!

kam

P.S. Diary of a Mad Black Woman is like nothing I've ever seen.

While it is hysterical, the message is beautiful and clear. I would

highly recommend it for good, wholesome viewing. Everyone can get

something out of it. Thanks again, , for the great

recommendation.

[Guest guest]

I agree with Cam - I use the heating pad (the one you warm up in the

microwave) on my upper back. When I sit at the kitchen table or computer I

must be bending my head down, of course to look at what I'm doing.

Therefore, my upper back starts to hurt. The heating pad works great. I do

have to do what the PT told me and bring my work up to my eyes or sit up

straighter (how could I slouch anyway?) - to avoid the pain. But the

heating pad feels wonderful.

Lorrie

[ ] Re: pitiful Kam

Hi Kam,

Complain all you want....this all blows....

I was wondering if it would be possible to use a heating pad on the

spots that seem like would benefit?

You are not dreaming...your gait is different after the fusion to

the sacrum. I remember while contemplating surgery reading a few

studies in PubMed about the differences in stride length after

surgery (in fact I think I remember that Bridwell was one of the

authors(?), but I could be wrong). But if you think of the way your

hips swing in an unfused spine or the way you could kind of tuck yur

pelvis when walking fast...that is gone.

When I got home last year it was way to " iffy " to walk outside so I

would just set the timer on the stove and walk a pattern in the

house...and I really could see that after those years of drifting

into flatback where you kind of shuffle your hip/leg forward instead

of swinging it from the hip....well I didn't feel natural at all.

Now I don't notice so much, but when I am doing lots of walking I

still have to remind myself to " heel to toe " it....strinking with

the heel, rolling along the outside of the foot and pushing off with

the front of the foot. I remeber noticing the difference with

different footwear, so it is worth trying a few different shoes or

slippers on and see which one makes you feel best.

Around 5 months I was frustrated enough to look up and see if there

were practitioners of the Technique nearby....there are

not, but I still keep in mind that there might be some good work to

do with someone that really knows gait....the question is do they

understand our fused bodies? Mostly, being conscientious about my

posture while walking and strengthening everything it seems like

things are coming together....but I figure I still have another year

of recovery...so we shall see.

The other thing that struck me was the left side is your trouble

side on the front, right? My big weakness was left leg...lifting and

swinging...particulary noticable when trying to swing that leg into

the car on the drivers side....but when I first got home, seated on

the bed I could not even lift that leg up to put on my underwear...I

had to use my hand to lift that leg. My belief is that this has to

do with that anterior incision on the left side...they cut through

all those muscles and it takes awhile for them to come back...those

still seem a little weak (but are very much improved). Dr Rand says

they hadn't cut any nerves...but they sure must of cut something!

I wonder if what you are feeling that sort of feels like piriformis

could be your illiac screws? Every now and then I feel a twinge that

is sort of in the same place and it freaks me out, and then when I

put my finger on the spot I realize it is where one of the screws is

(I think) for the most part those don't give me any trouble

now...but I think in the early going they did...and I would notice

it more when I had done my walking.

If it weren't for all the meds, I would say light a candle, put on

some music, do a few shots of tequila and your muscles are bound to

relax!

I do hope you feel better after in the next few days.

Best, Cam

scoliosis veterans * flatback sufferers * revision candidates

[Guest guest]

Hi . I'm doint OK. Today is a good day. Sometimes the Fentanyl patch

works really good and sometimes it doesn't work as well as I like it to. I

still have a lot of leg pain and I'm not too sure it is because I have to

bend up and down a bunch of times during the day or is it because of the

surgery. My hip is feeling better though.

Jilly is fine. I just feel bad that she and I have to stay in the house all

day during the week. I'd like to take her out for a walk but sometimes when

she is tired she will just lie down in the road and not get up. I can't

take that chance! I wouldn't be able to pick her up! She's almost 2 and

we've had some tantrums already.

All in all for about 15 weeks post-op - I'm doing OK. I can't wait to say

I'm doing " great " - but not yet.

Lorrie

[ ] Re: pitiful Kam

>

> Hi Kam,

>

> Complain all you want....this all blows....

>

> I was wondering if it would be possible to use a heating pad on the

> spots that seem like would benefit?

>

> You are not dreaming...your gait is different after the fusion to

> the sacrum. I remember while contemplating surgery reading a few

> studies in PubMed about the differences in stride length after

> surgery (in fact I think I remember that Bridwell was one of the

> authors(?), but I could be wrong). But if you think of the way your

> hips swing in an unfused spine or the way you could kind of tuck

yur

> pelvis when walking fast...that is gone.

>

> When I got home last year it was way to " iffy " to walk outside so I

> would just set the timer on the stove and walk a pattern in the

> house...and I really could see that after those years of drifting

> into flatback where you kind of shuffle your hip/leg forward

instead

> of swinging it from the hip....well I didn't feel natural at all.

> Now I don't notice so much, but when I am doing lots of walking I

> still have to remind myself to " heel to toe " it....strinking with

> the heel, rolling along the outside of the foot and pushing off

with

> the front of the foot. I remeber noticing the difference with

> different footwear, so it is worth trying a few different shoes or

> slippers on and see which one makes you feel best.

>

> Around 5 months I was frustrated enough to look up and see if there

> were practitioners of the Technique nearby....there are

> not, but I still keep in mind that there might be some good work to

> do with someone that really knows gait....the question is do they

> understand our fused bodies? Mostly, being conscientious about my

> posture while walking and strengthening everything it seems like

> things are coming together....but I figure I still have another

year

> of recovery...so we shall see.

>

> The other thing that struck me was the left side is your trouble

> side on the front, right? My big weakness was left leg...lifting

and

> swinging...particulary noticable when trying to swing that leg into

> the car on the drivers side....but when I first got home, seated on

> the bed I could not even lift that leg up to put on my

underwear...I

> had to use my hand to lift that leg. My belief is that this has to

> do with that anterior incision on the left side...they cut through

> all those muscles and it takes awhile for them to come back...those

> still seem a little weak (but are very much improved). Dr Rand says

> they hadn't cut any nerves...but they sure must of cut something!

>

> I wonder if what you are feeling that sort of feels like piriformis

> could be your illiac screws? Every now and then I feel a twinge

that

> is sort of in the same place and it freaks me out, and then when I

> put my finger on the spot I realize it is where one of the screws

is

> (I think) for the most part those don't give me any trouble

> now...but I think in the early going they did...and I would notice

> it more when I had done my walking.

>

> If it weren't for all the meds, I would say light a candle, put on

> some music, do a few shots of tequila and your muscles are bound to

> relax!

>

> I do hope you feel better after in the next few days.

>

> Best, Cam

>

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

---Dear Lorrie,

I would imagine,from experience alone, that a 2 year old could

have a tantrum and then you would be left unable to pick her up off

the ground, been there!!But is was before surgery.

Sounds like that patch works for folks, I never had one. I am using

vicodone as needed for pain. It works ok. I started taking ambien CR

for sleep, the regular ambien just did not keep me asleep long enough.

I am sure you would agree that this entire ordeal has been something

else!!I just want to feel like a real person and I am not there yet,

I just feel like I am in someone elses body...,PA

In , " Lorrie Snyder "

<Lorriesnyder@...> wrote:

>

> Hi . I'm doint OK. Today is a good day. Sometimes the

Fentanyl patch

> works really good and sometimes it doesn't work as well as I like

it to. I

> still have a lot of leg pain and I'm not too sure it is because I

have to

> bend up and down a bunch of times during the day or is it because

of the

> surgery. My hip is feeling better though.

>

> Jilly is fine. I just feel bad that she and I have to stay in the

house all

> day during the week. I'd like to take her out for a walk but

sometimes when

> she is tired she will just lie down in the road and not get up. I

can't

> take that chance! I wouldn't be able to pick her up! She's almost

2 and

> we've had some tantrums already.

>

> All in all for about 15 weeks post-op - I'm doing OK. I can't wait

to say

> I'm doing " great " - but not yet.

>

> Lorrie

>

> [ ] Re: pitiful Kam

> >

> > Hi Kam,

> >

> > Complain all you want....this all blows....

> >

> > I was wondering if it would be possible to use a heating pad on

the

> > spots that seem like would benefit?

> >

> > You are not dreaming...your gait is different after the fusion to

> > the sacrum. I remember while contemplating surgery reading a few

> > studies in PubMed about the differences in stride length after

> > surgery (in fact I think I remember that Bridwell was one of the

> > authors(?), but I could be wrong). But if you think of the way

your

> > hips swing in an unfused spine or the way you could kind of tuck

> yur

> > pelvis when walking fast...that is gone.

> >

> > When I got home last year it was way to " iffy " to walk outside so

I

> > would just set the timer on the stove and walk a pattern in the

> > house...and I really could see that after those years of drifting

> > into flatback where you kind of shuffle your hip/leg forward

> instead

> > of swinging it from the hip....well I didn't feel natural at all.

> > Now I don't notice so much, but when I am doing lots of walking I

> > still have to remind myself to " heel to toe " it....strinking with

> > the heel, rolling along the outside of the foot and pushing off

> with

> > the front of the foot. I remeber noticing the difference with

> > different footwear, so it is worth trying a few different shoes

or

> > slippers on and see which one makes you feel best.

> >

> > Around 5 months I was frustrated enough to look up and see if

there

> > were practitioners of the Technique nearby....there are

> > not, but I still keep in mind that there might be some good work

to

> > do with someone that really knows gait....the question is do they

> > understand our fused bodies? Mostly, being conscientious about my

> > posture while walking and strengthening everything it seems like

> > things are coming together....but I figure I still have another

> year

> > of recovery...so we shall see.

> >

> > The other thing that struck me was the left side is your trouble

> > side on the front, right? My big weakness was left leg...lifting

> and

> > swinging...particulary noticable when trying to swing that leg

into

> > the car on the drivers side....but when I first got home, seated

on

> > the bed I could not even lift that leg up to put on my

> underwear...I

> > had to use my hand to lift that leg. My belief is that this has

to

> > do with that anterior incision on the left side...they cut

through

> > all those muscles and it takes awhile for them to come

back...those

> > still seem a little weak (but are very much improved). Dr Rand

says

> > they hadn't cut any nerves...but they sure must of cut something!

> >

> > I wonder if what you are feeling that sort of feels like

piriformis

> > could be your illiac screws? Every now and then I feel a twinge

> that

> > is sort of in the same place and it freaks me out, and then when

I

> > put my finger on the spot I realize it is where one of the screws

> is

> > (I think) for the most part those don't give me any trouble

> > now...but I think in the early going they did...and I would

notice

> > it more when I had done my walking.

> >

> > If it weren't for all the meds, I would say light a candle, put

on

> > some music, do a few shots of tequila and your muscles are bound

to

> > relax!

> >

> > I do hope you feel better after in the next few days.

> >

> > Best, Cam

> >

> >

> >

> >

> >

> >

> >

> > scoliosis veterans * flatback sufferers * revision candidates

> >