Frustrated

[Guest guest]

Dear Kay,

I don't get your doc not wanting you to lay down more than an hour or two. I wasn't allowed to sit for more than 30 minutes at a time till my six week check. I layed down a lot, slept a lot, walked the required amount. I think you are overdoing, and that will truly set the pain off, and the soreness. You need to pace yourself, I know I've been a bit worried about you, you did things So fast in the beginning that you would crash down the road. Sure at this point you are going to be sore and still painful, but slow down a bit and see if it eases. Unfortunately the healing just takes time, more than you think, just look at this healing stuff not like a sprint but a marathon. You can give me a call if you need to chat, still have my numbers? I'm thinking about you!

RE: [ ] Frustrated

Carol, I’m feeling somewhat the same. My doctor didn’t want my lying down more than 1-2 hours a day. For the most part, I guess I don’t, but I can’t sit either. Not for more than 10 minutes at a time. So that leaves walking around, standing, or reclining which I can only do from the rented hospital bed we have at home. I’m also hurting more it seems. I wake in the mornings and don’t want to get out of bed; I ache everywhere (shoulders, legs, hips, back, etc). And I get tired easily. Seem to be going “downhill” in just the past few days. Like you, I don’t know what’s typical either and also wonder about that plateau or if something else is wrong or what.

Kay

From: [mailto: ] On Behalf Of CarolSent: Wednesday, April 04, 2007 1:46 PM Subject: [ ] Frustrated

I have been feeling frustrated the past day or so that I can't do more than I can. I have no idea if what I'm doing is typical for someone at my stage or not. It will be 1 month from first surgery this Fri (6th) and right now I can take off my brace by myself, put it on by myself, walk some around the house (not much) and when I walk around the house I can do it without my walker. If I go outside, I take the walker--for sure. What is typical? I feel like I'm at a plateau or something.Carol v.

[Guest guest]

Hi ,

Yes, I still

have your numbers, but if I call, I’ll just get weepy, and I don’t

want to cry. I will be phoning you again, and thank you (!) for being there and

being the wonderful encourager you are.

Seems like

everything was going so well, then BOOM. If I’m honest with myself

though, and think back, I realize that I’ve been ignoring some things. I

have always had a high pain threshold. Added to that is a mindset of

compensating for the pain over the years. Tend to try to ignore it and that’s

not good, really, especially now.

I think I have

been trying to do too much just as you said. Yesterday, after I’d walked

during the morning, I took my shower, got dressed, made salads for supper, got

the coffee ready for this morning, made my husband’s lunch for today, microwaved

what we were going to have for supper, and then did some light dishwashing. By

that time I was exhausted and hurting and tearful. came home later and finished up

what I’d started.

Dr. F did say he

didn’t want me lying around all day (and not moving around at least some

of the time). But now I’m now wondering if the lying down restriction is

something that should have been crossed out on the paper they sent me home

with. You know how they send you home with a list of restrictions, exercises,

etc? The ones they didn’t want me to follow were scratched out. Wonder if

this one got missed.

So today, I

haven’t walked on the treadmill or done anything other than just walk

around and do little things. Lying down when I begin to feel tired or achy or

whatever. I think I may have been pressing on beyond what I should thinking

that’s what I was supposed to do (I guess).

Thanks, .

Kay

From: [mailto: ] On Behalf Of Kirkaldie

Sent: Wednesday, April 04, 2007

3:28 PM

Subject: Re: [ ]

Frustrated

Dear Kay,

I don't get your doc not wanting you to lay down more than

an hour or two. I wasn't allowed to sit for more than 30 minutes at a time till

my six week check. I layed down a lot, slept a lot, walked the required amount.

I think you are overdoing, and that will truly set the pain off, and the

soreness. You need to pace yourself, I know I've been a bit worried about you,

you did things So fast in the beginning that you would crash down the road.

Sure at this point you are going to be sore and still painful, but slow down a

bit and see if it eases. Unfortunately the healing just takes time, more than

you think, just look at this healing stuff not like a sprint but a marathon.

You can give me a call if you need to chat, still have my numbers? I'm thinking

about you!

RE:

[ ] Frustrated

Carol, I’m feeling somewhat the same. My

doctor didn’t want my lying down more than 1-2 hours a day. For the most

part, I guess I don’t, but I can’t sit either. Not for more than 10

minutes at a time. So that leaves walking around, standing, or reclining which

I can only do from the rented hospital bed we have at home. I’m also

hurting more it seems. I wake in the mornings and don’t want to get out

of bed; I ache everywhere (shoulders, legs, hips, back, etc). And I get tired

easily. Seem to be going “downhill” in just the past few days. Like

you, I don’t know what’s typical either and also wonder about that

plateau or if something else is wrong or what.

Kay

[Guest guest]

Dear Kay,

So you are at the " I'll cry at anything stage" well, you are healing, all of us seem to go through this stage. It's a release and a good thing, just let it out. Tell hubby it's completely normal, and not to freak, it only lasts for awhile, you won't be like this forever.

I'm glad you slowed down today, you have to listen to your body, and not your expectations or that of others, and if you truly listen your days will be less sore. Truly taking the slow pace at this point is the best way to go, ramp things up too fast and you will pay for it. Slow and easy, and each week things will get better, it just takes time, wish i could give you a magic pill and it would be easier and faster, but there just isn't one. Call if you need me, and know I'm pulling for you!

RE: [ ] Frustrated

Carol, I’m feeling somewhat the same. My doctor didn’t want my lying down more than 1-2 hours a day. For the most part, I guess I don’t, but I can’t sit either. Not for more than 10 minutes at a time. So that leaves walking around, standing, or reclining which I can only do from the rented hospital bed we have at home. I’m also hurting more it seems. I wake in the mornings and don’t want to get out of bed; I ache everywhere (shoulders, legs, hips, back, etc). And I get tired easily. Seem to be going “downhill” in just the past few days. Like you, I don’t know what’s typical either and also wonder about that plateau or if something else is wrong or what.

Kay

[Guest guest]

Carol and Kay,

I think there can be a tremedous urge to hurry up and do things in an effort to reassure yourself that you are "better". The fact is that this recovery is very long, your fusions will not be solid for 12 to 18 months and there is no changing that fact. You can't wish or hope it any different. It just takes time. I don't mean to say that you are not going to make tons of progress in the coming weeks and months...you most surely will. But for now I wish you would both give yourselves permission to "let go" and let others do for you....or leave it. Someone else can do it all...or it can get done later. Your job is to heal...and to do that you must rest, nourish yourself and be very careful what you do.

I can tell you, the more you take on now, the more you are setting yourself up for other people to expect you to be healed at 6 or 8 weeks. They will stop helping, they will stop visiting, they will stop understanding that you have just begun the very first piece of healing. And you will be complicit in leading them to this expectation. And we have certainly seen that when this happens you may feel very badly indeed.

As I was saying the other day, my recollection of what I did when is fuzzy, so I thought I would go back into my recovery journal and for comparison I will repost my 6 week post-op post (just about 2 years ago!)...a recycle if you will. Of course it was just my experience and everyone is different...but still, I was still taking meds, I had just started to be out and about again and was taking baby steps. I hope it helps. I think a very slow start will lead to a faster finish, if you know what I mean. Take Care~Cam

March 30, 2005

Today marks six weeks since my second stage surgery, like childbirth, the experience already has faded a bit. I always thought that forgetting was "adaptive" so that women would undergo pregnancy and delivery again…turns out maybe it's adaptive so we can undergo more surgery if required!I thought I would keep posting progress updates, as others have, simply so new folks reading this board can have the benefit of sharing my experience. Of course, it is just that, my experience, and I know that other tales of mending have been quite different. I do know that while I was contemplating undertaking this revision surgery I scoured this and other boards trying to see how people got along in the recovery and "post" period so I could try to make decisions for me an my family. It was invaluable to me, understanding the range of problems, pain and ability to function, so, for what its worth, I will keep on posting my recovery progress…unless you all tell me to hush! The usual caveats apply...this is how it goes for me, my body, age & health, my particular surgery, my spine!As I said, it has been six weeks since the two stages, posterior/anterior & posterior surgery...and they have gone pretty quickly. I just returned from a 45 minute stroll on a long dirt road with my dog. The footing is a little uneven, and it makes me a tiny bit nervous to do this walk alone, as I did today for the first time. But long before I was laid up with all the pain of flatback I walked these roads and trails by the hour and I intend to again, so it seemed a fitting goal for an anniversary day with a hint of spring in the air. I brought my cell phone just in case! I am wearing my TLSO brace whenever I leave the house, and often around the house when I am up for awhile...it makes me really stand up.My incisions seem like they are well healed now. The anterior scar has left a numb area on just one side which extends about 2" from the scar. I am guessing some sensation will return...but if it doesn't, no huge loss...I can do without the need to have feeling on my stomach! I honestly can't feel any hardware on my spine with my hand, I doubt I will be able to later…I consider myself to be not particularly thin…probably within 5 lbs of a good body weight right now. I didn't get on a scale until a few weeks after I returned home, but at that point I was about 12lbs under where I was before surgery. About a pound lost a day. Makes senses if you figure that out of a thirteen day hospital stay I didn't eat on either surgery days, was on ice chips on each first post-op day...followed by another two days of jello and broth…yum. Then by the fifth day I was allowed to pick an easy diet and then had to return to that "low residue" diet to prepare for the second stage...so out of thirteen days I really didn't consume much in the way of calories…although between stages and after the second surgery I did use the nutritional supplement twice a day (once authorized)…I probably would have lost even more without it...which probably would have really cut into my needed energy for recovery.If I was going to categorize it, I think I am at a turning point this 6th week...it seems sort of as if I am out of the "recovering from the trauma of surgery" phase and on to the "building stamina and endurance" phase. I cut down on my meds a week ago...I am currently using Endocet and regular strength Tylenol (325mg). I am cutting the endocet in half so I am actually dosing 2.5mg oxycodone + 325 mg Tylenol every 6 hours. I have not experienced the pain or tugging of scar tissue I have heard of, maybe it is too soon? I would really like to think that I can drive by mid April, in another two weeks, so I sort of have a goal of being off the narcotic stuff by then. I will, of course, discuss this with the doctor's staff on my weekly phone call/checkup. For me, up `til today, I would have to say that this has all been a lot less painful than I expected. Who knows what lies ahead?I would say that I am now at least an active participant in parenting my 8 ½ year old child...I can sit and help with homework… read with him, will attend a short swimming awards banquet tomorrow. I certainly can let my child know when it is time to take a shower, get him self dressed and ready for school. As straightforward as my recovery has been, I must say that I could not imagine feeling as good and relaxed as I do now if my husband had not triggered his rights under the Family Medical Leave Act and taken 12 weeks of unpaid leave. I can't imagine doing this surgery with children much under 6 years to care for...It would be very stressful anyway since they are still so "needy" themselves. We were lucky that we were able to afford this option of keeping my husband home…..I know not everyone has that luxury, but for those of you contemplating surgery… if you have the ability to arrange your life and you have little ones…you probably are going to need fairly consistent help for the first few months...not so much with yourself…but literally, with everything else.As to timing...I think, for my child, it probably was a good thing that I had my surgery during the school year, I think it kept his days focused and full. He did suffer a bit of anxiety which has revealed itself with sleep issues and a little tension in his demeanor…but we can really see it subsiding as I get more back to my usual routine. I also think I will hit some decent spring weather now also for the prescribed walking that I should be doing daily. My hope is by July (4-1/2 months post) it won't be too difficult to get from the car to the beach with a bag and a chair and feel like I can get into and out of a low beach chair without assistance. Now that's a goal! I'll let you know how it goes.I expect that I will be back to work during the next 6 weeks…I will probably start with a modified part-time schedule and work up to full time over the ensuing month…at least that is the game plan. I know I've mentioned it before; I will be out of sick leave mid-May so I will have to find a way to work out any issues by then or I am going to have problems with the flight surgeon. I can retire one year from June and I am determined to make that work, come what may. It is a bit of a motivator to get off the narcotic pain relief and get to a point, stamina wise, where I can climb the four flights of stairs at work.I would say I am just beginning to feel a little more natural in this new posture. I continue to feel my body stop in my "stooped over from hip" pose and mentally still telling myself to "stand up"when I get up...I guess that is what you call "muscle memory". The muscles/tendons that I feel the most right now are still the hip flexors trying to stretch and strengthen to re-accommodate an upright torso. It has definitely gotten a lot better. It is wonderful if I have to stand in one spot to just sort of lock my knees straight and feel centered and balanced…none of that bent knee to keep my torso vertical anymore…and boy can you feel that. I do notice whenever I am walking up even a little grade that it feels funny not to be able to make that little accommodation of body tilt by adjusting my lumbar spine…I wonder if that will go away or if I will always have a funny step uphill? I haven't noticed any decrease in any of my upper body mobility...but nothing was touched up there. For now, I am able to get my socks on by lying on the bed and crossing my foot to ankle. I can step into my pants/underwear standing now, although sometimes I may have to support or lift a leg a bit. For some reason my left leg still feels like it is harder to lift in a sittingposition than my right, but it does feel like it is improving.I am able to get into the car fine…we have a small SUV, the Honda CRV. I was worried after reading some posts here about cars, but this vehicle has wide doors and is bit higher than a sedan. Even though I am tall (6') I don't think fusion to the sacrum will mean I am banging my head getting in and out of this car.I don't know what the future holds in terms of abilities, and that still worries me a little. I haven't figured out how I will ever do a weekly grocery shopping if I am weight restricted forever. I expect as I pass through to a time where I am permitted to work on flexibility I will have a lot of work to do…my hamstrings feel short and tight and I am sure everything low back and abdominal needs work to really get working properly….but I know that is all way in the future. Patience.So that is where I am today. Each week brings new challenges. I will certainly let you know how I make out at my 8 week visit with Dr Rand.

[Guest guest]

It's difficult to realise just how slow you may need to take things, right down to even the difference it can make to consciously keep your stride a little shorter. I remember my husband telling me to slow down, and snapping at him that I was walking slowly - he pointed out yes, you are compared to your old standards, but look at you, you're still walking faster than practically anyone else here! At that point I realised that I was busy weaving in and out between people in town and was indeed walking faster than the majority of them.

It irritated (and still does irritate me now I'm slowed down again by the stenosis) me no end to walk along slowly, with shorter stride, but the difference it made was amazing. Just slowing down a bit like that meant that I was able to be that much more conscious of my posture, my gait, etc and so was able to start being more naturally upright - the faster I was going, the more likely I was to slide into the old bent over posture, so walking slowly made all the difference. I also discovered I could go a lot further as long as I was better paced. As I say, terrible frustration - I used to walk incredibly fast, with a very long stride and have never got back to that fully, but the rewards of just taking a little more care over it were more than worth it.

Recovery-wise from last time, I can say it was about 5 weeks from surgery before I had any kind of major outing whatsoever - which was to go down to a friend's place about 30 mins drive away. Typically, the 30 min route was closed and we got trapped on the other route which took over an hour with my poor husband doing his nut over it, but I was actually ok. Up until that point, I'd thought there was no way that I'd ever be able to get to my check up the following week. I was literally housebound until that 5 week post surgery stage, because I just couldn't walk far enough or get in the car. It was still another 2 or 3 weeks after all this before I began to go with 2c to do any shopping and at that it was not to pick up any more than we needed say for the next 2 days, and he'd be dropping me at the door of the supermarket and dashing ahead of me afterward to bring the car to the door again. At the time I had this done, I was all of 29 if that helps any of you feel any better - I read your stories and generally it sounds like you're doing way better in the early stages than I was, regardless that most of you are 10-20 or more years older! Long term recovery takes care of itself, as long as you take care of yourself in the early stages - by 10 months post op, when I turned 30, hubby and I went to London for the day and literally shopped till we dropped. I took a few mild painkillers along the way, and we made a few stops for coffee along the way to take a break and get some stamina back, but by the end of it all he was more tired than I was, and had back ache from all the walking. Me? I had sore feet and contemplated that perhaps I should have worn different sandals ;o) You'll get there in the end, it's definitely a marathon rather than a sprint.

titch-- Eternity is a very long time, especially towards the end. - Hawking

[Guest guest]

I hope I can say that I will be doing HALF as good as you were at

this point in your healing. I can't walk very long at all....maybe 5-

10 minutes at a time. The brace hurts me too much. I'm hoping they

can tweak it at the 6 wk. checkup. Without the brace on, I don't

really have pain, either. From what I've spoken to , sounds

like she was in the same boat. These big " plastic " braces have too

many points where they push in and also rub you wrong.

Carol V.

>

>

> Carol and Kay,

>

> I think there can be a tremedous urge to hurry up and do things in

an

> effort to reassure yourself that you are " better " . The fact is that

this

> recovery is very long, your fusions will not be solid for 12 to 18

> months and there is no changing that fact. You can't wish or hope

it any

> different. It just takes time. I don't mean to say that you are not

> going to make tons of progress in the coming weeks and months...you

most

> surely will. But for now I wish you would both give yourselves

> permission to " let go " and let others do for you....or leave it.

Someone

> else can do it all...or it can get done later. Your job is to

heal...and

> to do that you must rest, nourish yourself and be very careful what

you

> do.

>

> I can tell you, the more you take on now, the more you are setting

> yourself up for other people to expect you to be healed at 6 or 8

weeks.

> They will stop helping, they will stop visiting, they will stop

> understanding that you have just begun the very first piece of

healing.

> And you will be complicit in leading them to this expectation. And

we

> have certainly seen that when this happens you may feel very badly

> indeed.

>

> As I was saying the other day, my recollection of what I did when is

> fuzzy, so I thought I would go back into my recovery journal and for

> comparison I will repost my 6 week post-op post (just about 2 years

> ago!)...a recycle if you will. Of course it was just my experience

and

> everyone is different...but still, I was still taking meds, I had

just

> started to be out and about again and was taking baby steps. I hope

it

> helps. I think a very slow start will lead to a faster finish, if

you

> know what I mean. Take Care~Cam

>

> March 30, 2005

>

>

>

> Today marks six weeks since my second stage surgery, like

childbirth,

> the experience already has faded a bit. I always thought that

forgetting

> was " adaptive " so that women would undergo pregnancy and delivery

> again…turns out maybe it's adaptive so we can undergo more surgery

> if required!

>

> I thought I would keep posting progress updates, as others have,

simply

> so new folks reading this board can have the benefit of sharing my

> experience. Of course, it is just that, my experience,

> and I know that other tales of mending have been quite different. I

do

> know that while I was contemplating undertaking this revision

surgery I

> scoured this and other boards trying to see how people got along in

the

> recovery and " post " period so I could try to make decisions for me

an my

> family. It was invaluable to me, understanding the range of

problems,

> pain and ability to function, so, for what its worth, I will keep on

> posting my recovery progress…unless you all tell me to hush! The

> usual caveats apply...this is how it goes for me, my body, age &

health,

> my particular surgery, my spine!

>

> As I said, it has been six weeks since the two stages,

> posterior/anterior & posterior surgery...and they have gone pretty

> quickly. I just returned from a 45 minute stroll on a long dirt road

> with my dog. The footing is a little uneven, and it makes me a tiny

bit

> nervous to do this walk alone, as I did today for the first time.

But

> long before I was laid up with all the pain of flatback I walked

these

> roads and trails by the hour and I intend to again, so it seemed a

> fitting goal for an anniversary day with a hint of spring in the

air. I

> brought my cell phone just in case! I am wearing my TLSO brace

whenever

> I leave the house, and often around the house when I am up for

> awhile...it makes me really stand up.

>

> My incisions seem like they are well healed now. The anterior scar

has

> left a numb area on just one side which extends about 2 " from the

scar.

> I am guessing some sensation will return...but if it doesn't, no

huge

> loss...I can do without the need to have feeling on my stomach! I

> honestly can't feel any hardware on my spine with my hand, I doubt I

> will be able to later…I consider myself to be not particularly

> thin…probably within 5 lbs of a good body weight right now. I didn't

> get on a scale until a few weeks after I returned home, but at that

> point I was about 12lbs under where I was before surgery. About a

pound

> lost a day. Makes senses if you figure that out of a thirteen day

> hospital stay I didn't eat on either surgery days, was on ice chips

on

> each first post-op day...followed by another two days of jello and

> broth…yum. Then by the fifth day I was allowed to pick an easy diet

> and then had to return to that " low residue " diet to prepare for the

> second stage...so out of thirteen days I really didn't consume much

in

> the way of calories…although between stages and after the second

> surgery I did use the nutritional supplement twice a day (once

> authorized)…I probably would have lost even more without it...which

> probably would have really cut into my needed energy for recovery.

>

> If I was going to categorize it, I think I am at a turning point

this

> 6th week...it seems sort of as if I am out of the " recovering from

the

> trauma of surgery " phase and on to the " building stamina and

endurance "

> phase. I cut down on my meds a week ago...I am currently using

Endocet

> and regular strength Tylenol (325mg). I am cutting the endocet in

half

> so I am actually dosing 2.5mg oxycodone + 325 mg Tylenol every 6

hours.

> I have not experienced the pain or tugging of scar tissue I have

heard

> of, maybe it is too soon? I would really like to think that I can

drive

> by mid April, in another two weeks, so I sort of have a goal of

being

> off the narcotic stuff by then. I will, of course, discuss this

with the

> doctor's staff on my weekly phone call/checkup. For me, up `til

today, I

> would have to say that this has all been a lot less painful than I

> expected. Who knows what lies ahead?

>

> I would say that I am now at least an active participant in

parenting my

> 8 ½ year old child...I can sit and help with homework… read with

> him, will attend a short swimming awards banquet tomorrow. I

certainly

> can let my child know when it is time to take a shower, get him

self

> dressed and ready for school. As straightforward as my recovery has

> been, I must say that I could not imagine feeling as good and

relaxed as

> I do now if my husband had not triggered his rights under the Family

> Medical Leave Act and taken 12 weeks of unpaid leave. I can't

imagine

> doing this surgery with children much under 6 years to care for...It

> would be very stressful anyway since they are still so " needy "

> themselves. We were lucky that we were able to afford this option of

> keeping my husband home…..I know not everyone has that luxury, but

> for those of you contemplating surgery… if you have the ability to

> arrange your life and you have little ones…you probably are going to

> need fairly consistent help for the first few months...not so much

with

> yourself…but literally, with everything else.

>

> As to timing...I think, for my child, it probably was a good thing

that

> I had my surgery during the school year, I think it kept his days

> focused and full. He did suffer a bit of anxiety which has revealed

> itself with sleep issues and a little tension in his demeanor…but we

> can really see it subsiding as I get more back to my usual routine.

I

> also think I will hit some decent spring weather now also for the

> prescribed walking that I should be doing daily. My hope is by July

> (4-1/2 months post) it won't be too difficult to get from the car

to the

> beach with a bag and a chair and feel like I can get into and out

of a

> low beach chair without assistance. Now that's a goal! I'll let you

know

> how it goes.

>

> I expect that I will be back to work during the next 6 weeks…I will

> probably start with a modified part-time schedule and work up to

full

> time over the ensuing month…at least that is the game plan. I know

> I've mentioned it before; I will be out of sick leave mid-May so I

will

> have to find a way to work out any issues by then or I am going to

have

> problems with the flight surgeon. I can retire one year from June

and I

> am determined to make that work, come what may. It is a bit of a

> motivator to get off the narcotic pain relief and get to a point,

> stamina wise, where I can climb the four flights of stairs at work.

>

> I would say I am just beginning to feel a little more natural in

this

> new posture. I continue to feel my body stop in my " stooped over

from

> hip " pose and mentally still telling myself to " stand up " when I get

> up...I guess that is what you call " muscle memory " . The

muscles/tendons

> that I feel the most right now are still the hip flexors trying to

> stretch and strengthen to re-accommodate an upright torso. It has

> definitely gotten a lot better. It is wonderful if I have to stand

in

> one spot to just sort of lock my knees straight and feel centered

and

> balanced…none of that bent knee to keep my torso vertical

> anymore…and boy can you feel that. I do notice whenever I am walking

> up even a little grade that it feels funny not to be able to make

that

> little accommodation of body tilt by adjusting my lumbar spine…I

> wonder if that will go away or if I will always have a funny step

> uphill? I haven't noticed any decrease in any of my upper body

> mobility...but nothing was touched up there. For now, I am able to

get

> my socks on by lying on the bed and crossing my foot to ankle. I can

> step into my pants/underwear standing now, although sometimes I may

have

> to support or lift a leg a bit. For some reason my left leg still

feels

> like it is harder to lift in a sitting

> position than my right, but it does feel like it is improving.

>

> I am able to get into the car fine…we have a small SUV, the Honda

> CRV. I was worried after reading some posts here about cars, but

this

> vehicle has wide doors and is bit higher than a sedan. Even though

I am

> tall (6') I don't think fusion to the sacrum will mean I am banging

my

> head getting in and out of this car.

>

> I don't know what the future holds in terms of abilities, and that

still

> worries me a little. I haven't figured out how I will ever do a

weekly

> grocery shopping if I am weight restricted forever. I expect as I

pass

> through to a time where I am permitted to work on flexibility I will

> have a lot of work to do…my hamstrings feel short and tight and I am

> sure everything low back and abdominal needs work to really get

working

> properly….but I know that is all way in the future. Patience.

>

> So that is where I am today. Each week brings new challenges. I will

> certainly let you know how I make out at my 8 week visit with Dr

Rand.

>

[Guest guest]

Carol,

That brace must be frustrating. I hope they can do something with it

when you are there in a few weeks. It's tricky...to gain stamina, you

have to walk...you can't walk long becasue you don't have

stamina...sigh.

I just walked a path in my house...set the timer on the kitchern stove

and did 15 mins. at a crack, twice, then 3 times a day, looping around

each room on the main floor....but I wasn't fighting an brace that was

rubbing me.

You will get there!

Cam

[Guest guest]

Dear Carol,

Unfortunately my brace had to be tweeked more than once as I was in the buggar the last time for six months. I went through three recoveries in the same brace, and even though I had worn it before, it still had to be tweeked since my body changed after each surgery, and different points on it made me sore. I lost weight all through my last recovery, and then new points where it would rub would come up. Sure would help if there was an orthotics place closer to you than SF, have you looked into it? As you have a place that rubs, write it down and the location, so when you are talking to the brace guy you'll remember, especially if you have to travel to get it fixed.

The thing is a neccessary evil unfortunately!

When I first got mine after my decompression surgery, we were in the car going home and mine hurt me something awful. The ride home was only twenty miles and it was sure hell. We called Lee at Kumar's office and she got me an appointment with the brace guy two days later. I walked into his office and he started laughing, he explained that the back piece to my brace was on upside down, that the top was down by my ass, and the bottom was up by my shoulders( the brace was a two piece thing, with a front shell, and a back shell, strapped together with velcro on the sides). I was furious since the PT people had put it on me that way. He actually had stickers that said top and bottom that he put on it so it wouldn't happen again( I never fully took it apart anyway, just opened one side to get in and out of it). On the ride home from the hospital I should have known something was wrong because the plastic was so low around my bottom that I couldn't sit down properly, but I didn't know they had put it together wrong. It's kinda funny now, but I sure was mad at the PT people for that painful trip home, and I'll always remember that.

[ ] Re: Frustrated

I hope I can say that I will be doing HALF as good as you were at this point in your healing. I can't walk very long at all....maybe 5-10 minutes at a time. The brace hurts me too much. I'm hoping they can tweak it at the 6 wk. checkup. Without the brace on, I don't really have pain, either. From what I've spoken to , sounds like she was in the same boat. These big "plastic" braces have too many points where they push in and also rub you wrong.Carol V. >> > Carol and Kay,> > I think there can be a tremedous urge to hurry up and do things in an> effort to reassure yourself that you are "better". The fact is that this> recovery is very long, your fusions will not be solid for 12 to 18> months and there is no changing that fact. You can't wish or hope it any> different. It just takes time. I don't mean to say that you are not> going to make tons of progress in the coming weeks and months...you most> surely will. But for now I wish you would both give yourselves> permission to "let go" and let others do for you....or leave it. Someone> else can do it all...or it can get done later. Your job is to heal...and> to do that you must rest, nourish yourself and be very careful what you> do.> > I can tell you, the more you take on now, the more you are setting> yourself up for other people to expect you to be healed at 6 or 8 weeks.> They will stop helping, they will stop visiting, they will stop> understanding that you have just begun the very first piece of healing.> And you will be complicit in leading them to this expectation. And we> have certainly seen that when this happens you may feel very badly> indeed.> > As I was saying the other day, my recollection of what I did when is> fuzzy, so I thought I would go back into my recovery journal and for> comparison I will repost my 6 week post-op post (just about 2 years> ago!)...a recycle if you will. Of course it was just my experience and> everyone is different...but still, I was still taking meds, I had just> started to be out and about again and was taking baby steps. I hope it> helps. I think a very slow start will lead to a faster finish, if you> know what I mean. Take Care~Cam> > March 30, 2005> > > > Today marks six weeks since my second stage surgery, like childbirth,> the experience already has faded a bit. I always thought that forgetting> was "adaptive" so that women would undergo pregnancy and delivery> again…turns out maybe it's adaptive so we can undergo more surgery> if required!> > I thought I would keep posting progress updates, as others have, simply> so new folks reading this board can have the benefit of sharing my> experience. Of course, it is just that, my experience,> and I know that other tales of mending have been quite different. I do> know that while I was contemplating undertaking this revision surgery I> scoured this and other boards trying to see how people got along in the> recovery and "post" period so I could try to make decisions for me an my> family. It was invaluable to me, understanding the range of problems,> pain and ability to function, so, for what its worth, I will keep on> posting my recovery progress…unless you all tell me to hush! The> usual caveats apply...this is how it goes for me, my body, age & health,> my particular surgery, my spine!> > As I said, it has been six weeks since the two stages,> posterior/anterior & posterior surgery...and they have gone pretty> quickly. I just returned from a 45 minute stroll on a long dirt road> with my dog. The footing is a little uneven, and it makes me a tiny bit> nervous to do this walk alone, as I did today for the first time. But> long before I was laid up with all the pain of flatback I walked these> roads and trails by the hour and I intend to again, so it seemed a> fitting goal for an anniversary day with a hint of spring in the air. I> brought my cell phone just in case! I am wearing my TLSO brace whenever> I leave the house, and often around the house when I am up for> awhile...it makes me really stand up.> > My incisions seem like they are well healed now. The anterior scar has> left a numb area on just one side which extends about 2" from the scar.> I am guessing some sensation will return...but if it doesn't, no huge> loss...I can do without the need to have feeling on my stomach! I> honestly can't feel any hardware on my spine with my hand, I doubt I> will be able to later…I consider myself to be not particularly> thin…probably within 5 lbs of a good body weight right now. I didn't> get on a scale until a few weeks after I returned home, but at that> point I was about 12lbs under where I was before surgery. About a pound> lost a day. Makes senses if you figure that out of a thirteen day> hospital stay I didn't eat on either surgery days, was on ice chips on> each first post-op day...followed by another two days of jello and> broth…yum. Then by the fifth day I was allowed to pick an easy diet> and then had to return to that "low residue" diet to prepare for the> second stage...so out of thirteen days I really didn't consume much in> the way of calories…although between stages and after the second> surgery I did use the nutritional supplement twice a day (once> authorized)…I probably would have lost even more without it...which> probably would have really cut into my needed energy for recovery.> > If I was going to categorize it, I think I am at a turning point this> 6th week...it seems sort of as if I am out of the "recovering from the> trauma of surgery" phase and on to the "building stamina and endurance"> phase. I cut down on my meds a week ago...I am currently using Endocet> and regular strength Tylenol (325mg). I am cutting the endocet in half> so I am actually dosing 2.5mg oxycodone + 325 mg Tylenol every 6 hours.> I have not experienced the pain or tugging of scar tissue I have heard> of, maybe it is too soon? I would really like to think that I can drive> by mid April, in another two weeks, so I sort of have a goal of being> off the narcotic stuff by then. I will, of course, discuss this with the> doctor's staff on my weekly phone call/checkup. For me, up `til today, I> would have to say that this has all been a lot less painful than I> expected. Who knows what lies ahead?> > I would say that I am now at least an active participant in parenting my> 8 ½ year old child...I can sit and help with homework… read with> him, will attend a short swimming awards banquet tomorrow. I certainly> can let my child know when it is time to take a shower, get him self> dressed and ready for school. As straightforward as my recovery has> been, I must say that I could not imagine feeling as good and relaxed as> I do now if my husband had not triggered his rights under the Family> Medical Leave Act and taken 12 weeks of unpaid leave. I can't imagine> doing this surgery with children much under 6 years to care for...It> would be very stressful anyway since they are still so "needy"> themselves. We were lucky that we were able to afford this option of> keeping my husband home…..I know not everyone has that luxury, but> for those of you contemplating surgery… if you have the ability to> arrange your life and you have little ones…you probably are going to> need fairly consistent help for the first few months...not so much with> yourself…but literally, with everything else.> > As to timing...I think, for my child, it probably was a good thing that> I had my surgery during the school year, I think it kept his days> focused and full. He did suffer a bit of anxiety which has revealed> itself with sleep issues and a little tension in his demeanor…but we> can really see it subsiding as I get more back to my usual routine. I> also think I will hit some decent spring weather now also for the> prescribed walking that I should be doing daily. My hope is by July> (4-1/2 months post) it won't be too difficult to get from the car to the> beach with a bag and a chair and feel like I can get into and out of a> low beach chair without assistance. Now that's a goal! I'll let you know> how it goes.> > I expect that I will be back to work during the next 6 weeks…I will> probably start with a modified part-time schedule and work up to full> time over the ensuing month…at least that is the game plan. I know> I've mentioned it before; I will be out of sick leave mid-May so I will> have to find a way to work out any issues by then or I am going to have> problems with the flight surgeon. I can retire one year from June and I> am determined to make that work, come what may. It is a bit of a> motivator to get off the narcotic pain relief and get to a point,> stamina wise, where I can climb the four flights of stairs at work.> > I would say I am just beginning to feel a little more natural in this> new posture. I continue to feel my body stop in my "stooped over from> hip" pose and mentally still telling myself to "stand up"when I get> up...I guess that is what you call "muscle memory". The muscles/tendons> that I feel the most right now are still the hip flexors trying to> stretch and strengthen to re-accommodate an upright torso. It has> definitely gotten a lot better. It is wonderful if I have to stand in> one spot to just sort of lock my knees straight and feel centered and> balanced…none of that bent knee to keep my torso vertical> anymore…and boy can you feel that. I do notice whenever I am walking> up even a little grade that it feels funny not to be able to make that> little accommodation of body tilt by adjusting my lumbar spine…I> wonder if that will go away or if I will always have a funny step> uphill? I haven't noticed any decrease in any of my upper body> mobility...but nothing was touched up there. For now, I am able to get> my socks on by lying on the bed and crossing my foot to ankle. I can> step into my pants/underwear standing now, although sometimes I may have> to support or lift a leg a bit. For some reason my left leg still feels> like it is harder to lift in a sitting> position than my right, but it does feel like it is improving.> > I am able to get into the car fine…we have a small SUV, the Honda> CRV. I was worried after reading some posts here about cars, but this> vehicle has wide doors and is bit higher than a sedan. Even though I am> tall (6') I don't think fusion to the sacrum will mean I am banging my> head getting in and out of this car.> > I don't know what the future holds in terms of abilities, and that still> worries me a little. I haven't figured out how I will ever do a weekly> grocery shopping if I am weight restricted forever. I expect as I pass> through to a time where I am permitted to work on flexibility I will> have a lot of work to do…my hamstrings feel short and tight and I am> sure everything low back and abdominal needs work to really get working> properly….but I know that is all way in the future. Patience.> > So that is where I am today. Each week brings new challenges. I will> certainly let you know how I make out at my 8 week visit with Dr Rand.>

[Guest guest]

OUCH , That must have been a very, very long ride home. You

would think they would know better.

Diane

> >

> >

> > Carol and Kay,

> >

> > I think there can be a tremedous urge to hurry up and do things

in

> an

> > effort to reassure yourself that you are " better " . The fact is

that

> this

> > recovery is very long, your fusions will not be solid for 12 to

18

> > months and there is no changing that fact. You can't wish or

hope

> it any

> > different. It just takes time. I don't mean to say that you are

not

> > going to make tons of progress in the coming weeks and

months...you

> most

> > surely will. But for now I wish you would both give yourselves

> > permission to " let go " and let others do for you....or leave

it.

> Someone

> > else can do it all...or it can get done later. Your job is to

> heal...and

> > to do that you must rest, nourish yourself and be very careful

what

> you

> > do.

> >

> > I can tell you, the more you take on now, the more you are

setting

> > yourself up for other people to expect you to be healed at 6 or

8

> weeks.

> > They will stop helping, they will stop visiting, they will stop

> > understanding that you have just begun the very first piece of

> healing.

> > And you will be complicit in leading them to this expectation.

And

> we

> > have certainly seen that when this happens you may feel very

badly

> > indeed.

> >

> > As I was saying the other day, my recollection of what I did

when is

> > fuzzy, so I thought I would go back into my recovery journal

and for

> > comparison I will repost my 6 week post-op post (just about 2

years

> > ago!)...a recycle if you will. Of course it was just my

experience

> and

> > everyone is different...but still, I was still taking meds, I

had

> just

> > started to be out and about again and was taking baby steps. I

hope

> it

> > helps. I think a very slow start will lead to a faster finish,

if

> you

> > know what I mean. Take Care~Cam

> >

> > March 30, 2005

> >

> >

> >

> > Today marks six weeks since my second stage surgery, like

> childbirth,

> > the experience already has faded a bit. I always thought that

> forgetting

> > was " adaptive " so that women would undergo pregnancy and

delivery

> > again.turns out maybe it's adaptive so we can undergo more

surgery

> > if required!

> >

> > I thought I would keep posting progress updates, as others

have,

> simply

> > so new folks reading this board can have the benefit of sharing

my

> > experience. Of course, it is just that, my experience,

> > and I know that other tales of mending have been quite

different. I

> do

> > know that while I was contemplating undertaking this revision

> surgery I

> > scoured this and other boards trying to see how people got

along in

> the

> > recovery and " post " period so I could try to make decisions for

me

> an my

> > family. It was invaluable to me, understanding the range of

> problems,

> > pain and ability to function, so, for what its worth, I will

keep on

> > posting my recovery progress.unless you all tell me to hush! The

> > usual caveats apply...this is how it goes for me, my body, age

&

> health,

> > my particular surgery, my spine!

> >

> > As I said, it has been six weeks since the two stages,

> > posterior/anterior & posterior surgery...and they have gone pretty

> > quickly. I just returned from a 45 minute stroll on a long dirt

road

> > with my dog. The footing is a little uneven, and it makes me a

tiny

> bit

> > nervous to do this walk alone, as I did today for the first

time.

> But

> > long before I was laid up with all the pain of flatback I

walked

> these

> > roads and trails by the hour and I intend to again, so it

seemed a

> > fitting goal for an anniversary day with a hint of spring in

the

> air. I

> > brought my cell phone just in case! I am wearing my TLSO brace

> whenever

> > I leave the house, and often around the house when I am up for

> > awhile...it makes me really stand up.

> >

> > My incisions seem like they are well healed now. The anterior

scar

> has

> > left a numb area on just one side which extends about 2 " from

the

> scar.

> > I am guessing some sensation will return...but if it doesn't,

no

> huge

> > loss...I can do without the need to have feeling on my stomach!

I

> > honestly can't feel any hardware on my spine with my hand, I

doubt I

> > will be able to later.I consider myself to be not particularly

> > thin.probably within 5 lbs of a good body weight right now. I

didn't

> > get on a scale until a few weeks after I returned home, but at

that

> > point I was about 12lbs under where I was before surgery. About

a

> pound

> > lost a day. Makes senses if you figure that out of a thirteen

day

> > hospital stay I didn't eat on either surgery days, was on ice

chips

> on

> > each first post-op day...followed by another two days of jello

and

> > broth.yum. Then by the fifth day I was allowed to pick an easy

diet

> > and then had to return to that " low residue " diet to prepare

for the

> > second stage...so out of thirteen days I really didn't consume

much

> in

> > the way of calories.although between stages and after the second

> > surgery I did use the nutritional supplement twice a day (once

> > authorized).I probably would have lost even more without

it...which

> > probably would have really cut into my needed energy for

recovery.

> >

> > If I was going to categorize it, I think I am at a turning

point

> this

> > 6th week...it seems sort of as if I am out of the " recovering

from

> the

> > trauma of surgery " phase and on to the " building stamina and

> endurance "

> > phase. I cut down on my meds a week ago...I am currently using

> Endocet

> > and regular strength Tylenol (325mg). I am cutting the endocet

in

> half

> > so I am actually dosing 2.5mg oxycodone + 325 mg Tylenol every

6

> hours.

> > I have not experienced the pain or tugging of scar tissue I

have

> heard

> > of, maybe it is too soon? I would really like to think that I

can

> drive

> > by mid April, in another two weeks, so I sort of have a goal of

> being

> > off the narcotic stuff by then. I will, of course, discuss this

> with the

> > doctor's staff on my weekly phone call/checkup. For me, up `til

> today, I

> > would have to say that this has all been a lot less painful

than I

> > expected. Who knows what lies ahead?

> >

> > I would say that I am now at least an active participant in

> parenting my

> > 8 ½ year old child...I can sit and help with homework. read with

> > him, will attend a short swimming awards banquet tomorrow. I

> certainly

> > can let my child know when it is time to take a shower, get him

> self

> > dressed and ready for school. As straightforward as my recovery

has

> > been, I must say that I could not imagine feeling as good and

> relaxed as

> > I do now if my husband had not triggered his rights under the

Family

> > Medical Leave Act and taken 12 weeks of unpaid leave. I can't

> imagine

> > doing this surgery with children much under 6 years to care

for...It

> > would be very stressful anyway since they are still so " needy "

> > themselves. We were lucky that we were able to afford this

option of

> > keeping my husband home...I know not everyone has that luxury,

but

> > for those of you contemplating surgery. if you have the ability

to

> > arrange your life and you have little ones.you probably are

going to

> > need fairly consistent help for the first few months...not so

much

> with

> > yourself.but literally, with everything else.

> >

> > As to timing...I think, for my child, it probably was a good

thing

> that

> > I had my surgery during the school year, I think it kept his

days

> > focused and full. He did suffer a bit of anxiety which has

revealed

> > itself with sleep issues and a little tension in his

demeanor.but we

> > can really see it subsiding as I get more back to my usual

routine.

> I

> > also think I will hit some decent spring weather now also for

the

> > prescribed walking that I should be doing daily. My hope is by

July

> > (4-1/2 months post) it won't be too difficult to get from the

car

> to the

> > beach with a bag and a chair and feel like I can get into and

out

> of a

> > low beach chair without assistance. Now that's a goal! I'll let

you

> know

> > how it goes.

> >

> > I expect that I will be back to work during the next 6 weeks.I

will

> > probably start with a modified part-time schedule and work up

to

> full

> > time over the ensuing month.at least that is the game plan. I

know

> > I've mentioned it before; I will be out of sick leave mid-May

so I

> will

> > have to find a way to work out any issues by then or I am going

to

> have

> > problems with the flight surgeon. I can retire one year from

June

> and I

> > am determined to make that work, come what may. It is a bit of a

> > motivator to get off the narcotic pain relief and get to a

point,

> > stamina wise, where I can climb the four flights of stairs at

work.

> >

> > I would say I am just beginning to feel a little more natural

in

> this

> > new posture. I continue to feel my body stop in my " stooped

over

> from

> > hip " pose and mentally still telling myself to " stand up " when I

get

> > up...I guess that is what you call " muscle memory " . The

> muscles/tendons

> > that I feel the most right now are still the hip flexors trying

to

> > stretch and strengthen to re-accommodate an upright torso. It

has

> > definitely gotten a lot better. It is wonderful if I have to

stand

> in

> > one spot to just sort of lock my knees straight and feel

centered

> and

> > balanced.none of that bent knee to keep my torso vertical

> > anymore.and boy can you feel that. I do notice whenever I am

walking

> > up even a little grade that it feels funny not to be able to

make

> that

> > little accommodation of body tilt by adjusting my lumbar spine.I

> > wonder if that will go away or if I will always have a funny

step

> > uphill? I haven't noticed any decrease in any of my upper body

> > mobility...but nothing was touched up there. For now, I am able

to

> get

> > my socks on by lying on the bed and crossing my foot to ankle.

I can

> > step into my pants/underwear standing now, although sometimes I

may

> have

> > to support or lift a leg a bit. For some reason my left leg

still

> feels

> > like it is harder to lift in a sitting

> > position than my right, but it does feel like it is improving.

> >

> > I am able to get into the car fine.we have a small SUV, the

Honda

> > CRV. I was worried after reading some posts here about cars,

but

> this

> > vehicle has wide doors and is bit higher than a sedan. Even

though

> I am

> > tall (6') I don't think fusion to the sacrum will mean I am

banging

> my

> > head getting in and out of this car.

> >

> > I don't know what the future holds in terms of abilities, and

that

> still

> > worries me a little. I haven't figured out how I will ever do a

> weekly

> > grocery shopping if I am weight restricted forever. I expect as

I

> pass

> > through to a time where I am permitted to work on flexibility I

will

> > have a lot of work to do.my hamstrings feel short and tight and

I am

> > sure everything low back and abdominal needs work to really get

> working

> > properly..but I know that is all way in the future. Patience.

> >

> > So that is where I am today. Each week brings new challenges. I

will

> > certainly let you know how I make out at my 8 week visit with

Dr

> Rand.

> >

>

[Guest guest]

Thanks for the sympathy, Cam and , but I don't think there's

anyone around here that could help me with it. If you saw the picture

of 's brace here in the photos section, that's exactly what

mine looks like. had trouble too with getting hers to fit

right. They tried to tweak hers at her 3 month checkup, and she said

it actually made it worse, so she quit wearing it. Dr. Hu said

to " wean " herself off of it, so after a few days of torture, she just

quit wearing it! I'm going to see if they can do something at my 6

week checkup on Apr. 23. Otherwise, until 3 months, I'm stuck with it!

Carol V.

> >

> >

> > Carol and Kay,

> >

> > I think there can be a tremedous urge to hurry up and do things

in

> an

> > effort to reassure yourself that you are " better " . The fact is

that

> this

> > recovery is very long, your fusions will not be solid for 12 to

18

> > months and there is no changing that fact. You can't wish or

hope

> it any

> > different. It just takes time. I don't mean to say that you are

not

> > going to make tons of progress in the coming weeks and

months...you

> most

> > surely will. But for now I wish you would both give yourselves

> > permission to " let go " and let others do for you....or leave

it.

> Someone

> > else can do it all...or it can get done later. Your job is to

> heal...and

> > to do that you must rest, nourish yourself and be very careful

what

> you

> > do.

> >

> > I can tell you, the more you take on now, the more you are

setting

> > yourself up for other people to expect you to be healed at 6 or

8

> weeks.

> > They will stop helping, they will stop visiting, they will stop

> > understanding that you have just begun the very first piece of

> healing.

> > And you will be complicit in leading them to this expectation.

And

> we

> > have certainly seen that when this happens you may feel very

badly

> > indeed.

> >

> > As I was saying the other day, my recollection of what I did

when is

> > fuzzy, so I thought I would go back into my recovery journal

and for

> > comparison I will repost my 6 week post-op post (just about 2

years

> > ago!)...a recycle if you will. Of course it was just my

experience

> and

> > everyone is different...but still, I was still taking meds, I

had

> just

> > started to be out and about again and was taking baby steps. I

hope

> it

> > helps. I think a very slow start will lead to a faster finish,

if

> you

> > know what I mean. Take Care~Cam

> >

> > March 30, 2005

> >

> >

> >

> > Today marks six weeks since my second stage surgery, like

> childbirth,

> > the experience already has faded a bit. I always thought that

> forgetting

> > was " adaptive " so that women would undergo pregnancy and

delivery

> > again.turns out maybe it's adaptive so we can undergo more

surgery

> > if required!

> >

> > I thought I would keep posting progress updates, as others

have,

> simply

> > so new folks reading this board can have the benefit of sharing

my

> > experience. Of course, it is just that, my experience,

> > and I know that other tales of mending have been quite

different. I

> do

> > know that while I was contemplating undertaking this revision

> surgery I

> > scoured this and other boards trying to see how people got

along in

> the

> > recovery and " post " period so I could try to make decisions for

me

> an my

> > family. It was invaluable to me, understanding the range of

> problems,

> > pain and ability to function, so, for what its worth, I will

keep on

> > posting my recovery progress.unless you all tell me to hush! The

> > usual caveats apply...this is how it goes for me, my body, age

&

> health,

> > my particular surgery, my spine!

> >

> > As I said, it has been six weeks since the two stages,

> > posterior/anterior & posterior surgery...and they have gone pretty

> > quickly. I just returned from a 45 minute stroll on a long dirt

road

> > with my dog. The footing is a little uneven, and it makes me a

tiny

> bit

> > nervous to do this walk alone, as I did today for the first

time.

> But

> > long before I was laid up with all the pain of flatback I

walked

> these

> > roads and trails by the hour and I intend to again, so it

seemed a

> > fitting goal for an anniversary day with a hint of spring in

the

> air. I

> > brought my cell phone just in case! I am wearing my TLSO brace

> whenever

> > I leave the house, and often around the house when I am up for

> > awhile...it makes me really stand up.

> >

> > My incisions seem like they are well healed now. The anterior

scar

> has

> > left a numb area on just one side which extends about 2 " from

the

> scar.

> > I am guessing some sensation will return...but if it doesn't,

no

> huge

> > loss...I can do without the need to have feeling on my stomach!

I

> > honestly can't feel any hardware on my spine with my hand, I

doubt I

> > will be able to later.I consider myself to be not particularly

> > thin.probably within 5 lbs of a good body weight right now. I

didn't

> > get on a scale until a few weeks after I returned home, but at

that

> > point I was about 12lbs under where I was before surgery. About

a

> pound

> > lost a day. Makes senses if you figure that out of a thirteen

day

> > hospital stay I didn't eat on either surgery days, was on ice

chips

> on

> > each first post-op day...followed by another two days of jello

and

> > broth.yum. Then by the fifth day I was allowed to pick an easy

diet

> > and then had to return to that " low residue " diet to prepare

for the

> > second stage...so out of thirteen days I really didn't consume

much

> in

> > the way of calories.although between stages and after the second

> > surgery I did use the nutritional supplement twice a day (once

> > authorized).I probably would have lost even more without

it...which

> > probably would have really cut into my needed energy for

recovery.

> >

> > If I was going to categorize it, I think I am at a turning

point

> this

> > 6th week...it seems sort of as if I am out of the " recovering

from

> the

> > trauma of surgery " phase and on to the " building stamina and

> endurance "

> > phase. I cut down on my meds a week ago...I am currently using

> Endocet

> > and regular strength Tylenol (325mg). I am cutting the endocet

in

> half

> > so I am actually dosing 2.5mg oxycodone + 325 mg Tylenol every

6

> hours.

> > I have not experienced the pain or tugging of scar tissue I

have

> heard

> > of, maybe it is too soon? I would really like to think that I

can

> drive

> > by mid April, in another two weeks, so I sort of have a goal of

> being

> > off the narcotic stuff by then. I will, of course, discuss this

> with the

> > doctor's staff on my weekly phone call/checkup. For me, up `til

> today, I

> > would have to say that this has all been a lot less painful

than I

> > expected. Who knows what lies ahead?

> >

> > I would say that I am now at least an active participant in

> parenting my

> > 8 ½ year old child...I can sit and help with homework. read with

> > him, will attend a short swimming awards banquet tomorrow. I

> certainly

> > can let my child know when it is time to take a shower, get him

> self

> > dressed and ready for school. As straightforward as my recovery

has

> > been, I must say that I could not imagine feeling as good and

> relaxed as

> > I do now if my husband had not triggered his rights under the

Family

> > Medical Leave Act and taken 12 weeks of unpaid leave. I can't

> imagine

> > doing this surgery with children much under 6 years to care

for...It

> > would be very stressful anyway since they are still so " needy "

> > themselves. We were lucky that we were able to afford this

option of

> > keeping my husband home...I know not everyone has that luxury,

but

> > for those of you contemplating surgery. if you have the ability

to

> > arrange your life and you have little ones.you probably are

going to

> > need fairly consistent help for the first few months...not so

much

> with

> > yourself.but literally, with everything else.

> >

> > As to timing...I think, for my child, it probably was a good

thing

> that

> > I had my surgery during the school year, I think it kept his

days

> > focused and full. He did suffer a bit of anxiety which has

revealed

> > itself with sleep issues and a little tension in his

demeanor.but we

> > can really see it subsiding as I get more back to my usual

routine.

> I

> > also think I will hit some decent spring weather now also for

the

> > prescribed walking that I should be doing daily. My hope is by

July

> > (4-1/2 months post) it won't be too difficult to get from the

car

> to the

> > beach with a bag and a chair and feel like I can get into and

out

> of a

> > low beach chair without assistance. Now that's a goal! I'll let

you

> know

> > how it goes.

> >

> > I expect that I will be back to work during the next 6 weeks.I

will

> > probably start with a modified part-time schedule and work up

to

> full

> > time over the ensuing month.at least that is the game plan. I

know

> > I've mentioned it before; I will be out of sick leave mid-May

so I

> will

> > have to find a way to work out any issues by then or I am going

to

> have

> > problems with the flight surgeon. I can retire one year from

June

> and I

> > am determined to make that work, come what may. It is a bit of a

> > motivator to get off the narcotic pain relief and get to a

point,

> > stamina wise, where I can climb the four flights of stairs at

work.

> >

> > I would say I am just beginning to feel a little more natural

in

> this

> > new posture. I continue to feel my body stop in my " stooped

over

> from

> > hip " pose and mentally still telling myself to " stand up " when I

get

> > up...I guess that is what you call " muscle memory " . The

> muscles/tendons

> > that I feel the most right now are still the hip flexors trying

to

> > stretch and strengthen to re-accommodate an upright torso. It

has

> > definitely gotten a lot better. It is wonderful if I have to

stand

> in

> > one spot to just sort of lock my knees straight and feel

centered

> and

> > balanced.none of that bent knee to keep my torso vertical

> > anymore.and boy can you feel that. I do notice whenever I am

walking

> > up even a little grade that it feels funny not to be able to

make

> that

> > little accommodation of body tilt by adjusting my lumbar spine.I

> > wonder if that will go away or if I will always have a funny

step

> > uphill? I haven't noticed any decrease in any of my upper body

> > mobility...but nothing was touched up there. For now, I am able

to

> get

> > my socks on by lying on the bed and crossing my foot to ankle.

I can

> > step into my pants/underwear standing now, although sometimes I

may

> have

> > to support or lift a leg a bit. For some reason my left leg

still

> feels

> > like it is harder to lift in a sitting

> > position than my right, but it does feel like it is improving.

> >

> > I am able to get into the car fine.we have a small SUV, the

Honda

> > CRV. I was worried after reading some posts here about cars,

but

> this

> > vehicle has wide doors and is bit higher than a sedan. Even

though

> I am

> > tall (6') I don't think fusion to the sacrum will mean I am

banging

> my

> > head getting in and out of this car.

> >

> > I don't know what the future holds in terms of abilities, and

that

> still

> > worries me a little. I haven't figured out how I will ever do a

> weekly

> > grocery shopping if I am weight restricted forever. I expect as

I

> pass

> > through to a time where I am permitted to work on flexibility I

will

> > have a lot of work to do.my hamstrings feel short and tight and

I am

> > sure everything low back and abdominal needs work to really get

> working

> > properly..but I know that is all way in the future. Patience.

> >

> > So that is where I am today. Each week brings new challenges. I

will

> > certainly let you know how I make out at my 8 week visit with

Dr

> Rand.

> >

>

[Guest guest]

Hi Kay, Carol,

Well, easy for your doctor to say he doesn't want you lying down more than 1 -2 hours per day. I am convinced that everyone recuperates at their own, individual rate. That being said, my experience is that most docs underestimate the time it takes to recover from surgery. Not that you asked my opinion, but I say listen to your body as well as to your doc. I think if you need to lie down, you should. It's very early in the recovery period for both of you.

Bonnie

RE: [ ] Frustrated

Carol, I’m feeling somewhat the same. My doctor didn’t want my lying down more than 1-2 hours a day. For the most part, I guess I don’t, but I can’t sit either. Not for more than 10 minutes at a time. So that leaves walking around, standing, or reclining which I can only do from the rented hospital bed we have at home. I’m also hurting more it seems. I wake in the mornings and don’t want to get out of bed; I ache everywhere (shoulders, legs, hips, back, etc). And I get tired easily. Seem to be going “downhill” in just the past few days. Like you, I don’t know what’s typical either and also wonder about that plateau or if something else is wrong or what.

Kay

From: [mailto: ] On Behalf Of CarolSent: Wednesday, April 04, 2007 1:46 PM Subject: [ ] Frustrated

I have been feeling frustrated the past day or so that I can't do more than I can. I have no idea if what I'm doing is typical for someone at my stage or not. It will be 1 month from first surgery this Fri (6th) and right now I can take off my brace by myself, put it on by myself, walk some around the house (not much) and when I walk around the house I can do it without my walker. If I go outside, I take the walker--for sure. What is typical? I feel like I'm at a plateau or something.Carol v.

[Guest guest]

I am also frustrated that limited sitting and walking doesn't leave

much else but to go back to bed. I have read 10 books in the last 4

weeks, and I am starting to get a little tired of reading!

I was told not to use a recliner or a rocker or my desk chairs. I

only have one chair in the house that is ok, and that is a wooden

dining chair with arms. It does have a cushion

At the moment, I have another dining chair at my desk, and my legs

have fallen asleep

I might as well go back to bed and start another book.

>

> Hi Kay, Carol,

>

> Well, easy for your doctor to say he doesn't want you lying down

more than 1 -2 hours per day. I am convinced that everyone

recuperates at their own, individual rate. That being said, my

experience is that most docs underestimate the time it takes to

recover from surgery. Not that you asked my opinion, but I say

listen to your body as well as to your doc. I think if you need to

lie down, you should. It's very early in the recovery period for

both of you.

>

> Bonnie

>

>

> [ ] Frustrated

>

>

>

> I have been feeling frustrated the past day or so that I can't do

more

> than I can. I have no idea if what I'm doing is typical for

someone at

> my stage or not. It will be 1 month from first surgery this Fri

(6th)

> and right now I can take off my brace by myself, put it on by

myself,

> walk some around the house (not much) and when I walk around the

house

> I can do it without my walker. If I go outside, I take the walker-

-for

> sure. What is typical? I feel like I'm at a plateau or something.

>

> Carol v.

>

[Guest guest]

I’m with

you, Bonnie. I now lie down often during the day—whenever my spirits

begin to flag or whenever I’m beginning to hurt or feel fatigued. I also

walk a lot around the house and on my treadmill (just not fast at all). But I’m

not shortchanging myself on the lying down anymore. It sure has helped.

From: [mailto: ] On Behalf Of Bonnie

Sent: Saturday, April 07, 2007

4:41 PM

Subject: Re: [ ]

Frustrated

Hi Kay, Carol,

Well, easy for your doctor to say he doesn't want you lying down more

than 1 -2 hours per day. I am convinced that everyone recuperates at

their own, individual rate. That being said, my experience is that most

docs underestimate the time it takes to recover from surgery. Not that

you asked my opinion, but I say listen to your body as well as to your

doc. I think if you need to lie down, you should. It's very early

in the recovery period for both of you.

Bonnie

[ ]

Frustrated

I have

been feeling frustrated the past day or so that I can't do more

than I can. I have no idea if what I'm doing is typical for someone at

my stage or not. It will be 1 month from first surgery this Fri (6th)

and right now I can take off my brace by myself, put it on by myself,

walk some around the house (not much) and when I walk around the house

I can do it without my walker. If I go outside, I take the walker--for

sure. What is typical? I feel like I'm at a plateau or something.

Carol v.

[Guest guest]

Oh Carol, my thoughts

exactly. I mean, if I can’t sit for very long (less than 10 minutes, if

that), and am not supposed to lie down more than two hours, and I can’t

stand in one place for long, what the ( & ^#$*))^$#@ am I supposed to do the

other hours of the day? I was told, however, that I could recline (thank

goodness) for an indefinite time. So I’ve done a LOT

of reclining (;-D).

Like I said in

an earlier post though, I really think the 2-hour minimum doesn’t apply

to patients with my kind of surgery and was, in fact, an item that should have

been scratched off the list they sent home with me. Really, it’s just not

an option following this surgery to only have two hours, at most, down time.

You need more. I just keep forgetting to ask Georganne about that when I phone

the office. Now it’s not an issue with me because I’ve decided to

do what my body wants. And if it wants sleep or rest (for however long), it’s

gonna get it.

From: [mailto: ] On Behalf Of SB

Sent: Saturday, April 07, 2007

5:38 PM

Subject: [ ] Re: Frustrated

I am also frustrated that limited sitting and walking

doesn't leave

much else but to go back to bed. I have read 10 books in the last 4

weeks, and I am starting to get a little tired of reading!

I was told not to use a recliner or a rocker or my desk chairs. I

only have one chair in the house that is ok, and that is a wooden

dining chair with arms. It does have a cushion

At the moment, I have another dining chair at my desk, and my legs

have fallen asleep

I might as well go back to bed and start another book.

>

> Hi Kay, Carol,

>

> Well, easy for your doctor to say he doesn't want you lying down

more than 1 -2 hours per day. I am convinced that everyone

recuperates at their own, individual rate. That being said, my

experience is that most docs underestimate the time it takes to

recover from surgery. Not that you asked my opinion, but I say

listen to your body as well as to your doc. I think if you need to

lie down, you should. It's very early in the recovery period for

both of you.

>

> Bonnie

>

>

> [ ] Frustrated

>

>

>

> I have been feeling frustrated the past day or so that I can't do

more

> than I can. I have no idea if what I'm doing is typical for

someone at

> my stage or not. It will be 1 month from first surgery this Fri

(6th)

> and right now I can take off my brace by myself, put it on by

myself,

> walk some around the house (not much) and when I walk around the

house

> I can do it without my walker. If I go outside, I take the walker-

-for

> sure. What is typical? I feel like I'm at a plateau or something.

>

> Carol v.

>

[Guest guest]

I agree--that's why I lie down as much as a feel that I need to. (I

believe it was actually Kay's doctor that said not more than 1-2 hrs.

a day)

I had a nurse while I was in the hospital saying we (revisees) should

lie on our backs! If that's the only comfortable position, that's too

bad. was surprised when I told her that--no one had ever said

anything to her about that.

Carol V.

>

> Hi Kay, Carol,

>

> Well, easy for your doctor to say he doesn't want you lying down

more than 1 -2 hours per day. I am convinced that everyone

recuperates at their own, individual rate. That being said, my

experience is that most docs underestimate the time it takes to

recover from surgery. Not that you asked my opinion, but I say

listen to your body as well as to your doc. I think if you need to

lie down, you should. It's very early in the recovery period for

both of you.

>

> Bonnie

>

>

> [ ] Frustrated

>

>

>

> I have been feeling frustrated the past day or so that I can't do

more

> than I can. I have no idea if what I'm doing is typical for

someone at

> my stage or not. It will be 1 month from first surgery this Fri

(6th)

> and right now I can take off my brace by myself, put it on by

myself,

> walk some around the house (not much) and when I walk around the

house

> I can do it without my walker. If I go outside, I take the walker-

-for

> sure. What is typical? I feel like I'm at a plateau or something.

>

> Carol v.

>

[Guest guest]

Hi Carol V,

Actually, In the hospital after revision, I thought, and still think, that lying on my back is the most comfortable position.

Lying on my sides is second best. Stomach, no way!

Bonnie

[ ] Frustrated> > > > I have been feeling frustrated the past day or so that I can't do more > than I can. I have no idea if what I'm doing is typical for someone at > my stage or not. It will be 1 month from first surgery this Fri (6th) > and right now I can take off my brace by myself, put it on by myself, > walk some around the house (not much) and when I walk around the house > I can do it without my walker. If I go outside, I take the walker--for > sure. What is typical? I feel like I'm at a plateau or something.> > Carol v.>

[Guest guest]

since I don't have staples, I actually like laying flat on my back.

The only thing is that it is much more comfortable to hold my book

while on my side. I worry if I am staying straight enough when I am

on my side. I tend to change positions pretty often while I am

reading.

> >

> > Hi Kay, Carol,

> >

> > Well, easy for your doctor to say he doesn't want you lying down

> more than 1 -2 hours per day. I am convinced that everyone

> recuperates at their own, individual rate. That being said, my

> experience is that most docs underestimate the time it takes to

> recover from surgery. Not that you asked my opinion, but I say

> listen to your body as well as to your doc. I think if you need to

> lie down, you should. It's very early in the recovery period for

> both of you.

> >

> > Bonnie

> >

> >

> > [ ] Frustrated

> >

> >

> >

> > I have been feeling frustrated the past day or so that I can't

do

> more

> > than I can. I have no idea if what I'm doing is typical for

> someone at

> > my stage or not. It will be 1 month from first surgery this Fri

> (6th)

> > and right now I can take off my brace by myself, put it on by

> myself,

> > walk some around the house (not much) and when I walk around

the

> house

> > I can do it without my walker. If I go outside, I take the

walker-

> -for

> > sure. What is typical? I feel like I'm at a plateau or

something.

> >

> > Carol v.

> >

>

[Guest guest]

Hi Suzanne,

How about resting the book on a pillow on your tummy while lying flat?

Bonnie

[ ] Frustrated> > > > > > > > I have been feeling frustrated the past day or so that I can't do > more > > than I can. I have no idea if what I'm doing is typical for > someone at > > my stage or not. It will be 1 month from first surgery this Fri > (6th) > > and right now I can take off my brace by myself, put it on by > myself, > > walk some around the house (not much) and when I walk around the > house > > I can do it without my walker. If I go outside, I take the walker-> -for > > sure. What is typical? I feel like I'm at a plateau or something.> > > > Carol v.> >>

[Guest guest]

where do you live? have you looked for docs on

http://www.stopthethyroidmadness.com?

I think you should investigate iodine which makes cells more sensitive to

thyroid hormone.

http://www.helpmythyroid.com

and you might need adrenal meds.

you can do lots of things to help yourself, you do not have to suffer b/c of

docs. I have a source list to order meds too.

Gracia

circe@...

Dear Group,

I am very frustrated, 3 weeks ago my tsh was 99, and so they increased my

synthroid to 400 mcg daily, and rechecked it in 3 weeks, and i took it every day

same time with nothing else, and now it is 0.28. i asked the dr to check into it

why it changed so much, she said no. it just fluctuates in some people, and i

have already been in hospital with complications of fast heart rate once, and

again my heart rate is at 130. any body have any suggestions, she wont prescribe

armour, no other specialist around here either. mary

__________________________________________________________

Take the Internet to Go: Go puts the Internet in your pocket: mail,

news, photos & more.

http://mobile./go?refer=1GNXIC

[Guest guest]

Get a new doctor ASAP!!!!!!!!!!!!!!!!!!!!! Some of us have been in the same

situation before. We have all had more than one doc!!! I had to fire a few

myself!

-- frustrated

Dear Group,

I am very frustrated, 3 weeks ago my tsh was 99, and so they increased my

synthroid to 400 mcg daily, and rechecked it in 3 weeks, and i took it every

day same time with nothing else, and now it is 0.28. i asked the dr to check

into it why it changed so much, she said no. it just fluctuates in some

people, and i have already been in hospital with complications of fast heart

rate once, and again my heart rate is at 130. any body have any suggestions,

she wont prescribe armour, no other specialist around here either. mary

__________________________________________________________

Take the Internet to Go: Go puts the Internet in your pocket: mail,

news, photos & more.

http://mobile./go?refer=1GNXIC

[Guest guest]

ok thanks for the info. mary

frustrated

Dear Group,

I am very frustrated, 3 weeks ago my tsh was 99, and so they increased my

synthroid to 400 mcg daily, and rechecked it in 3 weeks, and i took it every

day same time with nothing else, and now it is 0.28. i asked the dr to check

into it why it changed so much, she said no. it just fluctuates in some

people, and i have already been in hospital with complications of fast heart

rate once, and again my heart rate is at 130. any body have any suggestions,

she wont prescribe armour, no other specialist around here either. mary

____________ _________ _________ _________ _________ _________ _

Take the Internet to Go: Go puts the Internet in your pocket: mail,

news, photos & more.

http://mobile. / go?refer= 1GNXIC

[Guest guest]

p.S. You don't need a specialist. I have an endo I found on the top docs

list and so far so good, but not many on here have had luck with them or

needed one. An MD is fine.

-- Re: frustrated

ok thanks for the info. mary

frustrated

Dear Group,

I am very frustrated, 3 weeks ago my tsh was 99, and so they increased my

synthroid to 400 mcg daily, and rechecked it in 3 weeks, and i took it every

day same time with nothing else, and now it is 0.28. i asked the dr to check

into it why it changed so much, she said no. it just fluctuates in some

people, and i have already been in hospital with complications of fast heart

rate once, and again my heart rate is at 130. any body have any suggestions,

she wont prescribe armour, no other specialist around here either. mary

____________ _________ _________ _________ _________ _________ _

Take the Internet to Go: Go puts the Internet in your pocket: mail,

news, photos & more.

http://mobile. / go?refer= 1GNXIC

[Guest guest]

,

You wrote:

> ... 3 weeks ago my tsh was 99, and so they increased

> my synthroid to 400 mcg daily, and rechecked it in 3 weeks, and i took

> it every day same time with nothing else, and now it is 0.28. ...

Since the manufacturer's recommended absolute maximum dose is 200 mcg

per day, either your physician is unaware of that limit, or she has a

well considered reason for ignoring it and ordering DOUBLE the limit.

Are you sure about those numbers??? Given the fact that your TSH

immediately dropped below ITS recommended limit, and you started

experiencing serious hyperT symptoms, the latter does not seem to be

likely.

Instead of feeling frustrated, you should feel threatened. Find a new

doctor.

Chuck

[Guest guest]

ly I'm at a loss. I didn't think TSH could possibly change that

fast, but maybe I'm wrong. I don't know what to suggest other than

getting the tests done again [TSH, free T3, free T4, I think] but you've

already been turned down for that.

Luck,

>

> frustrated

>

<hypothyroidism/message/31329;_ylc=X3oDMTJxcHE0OW1\

wBF9TAzk3MzU5NzE1BGdycElkAzE0NTY2NARncnBzcElkAzE3MDkyNTEwODIEbXNnSWQDMzEzMjkEc2V\

jA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTE5MDE1NTM0MA-->

>

>

>

> Posted by: " Marshik " dollmarybeth2000@...

> <mailto:dollmarybeth2000@...?Subject=%20Re%3Afrustrated>

> dollmarybeth2000 <dollmarybeth2000>

>

>

> Tue Sep 18, 2007 7:54 am (PST)

>

> Dear Group,

> I am very frustrated, 3 weeks ago my tsh was 99, and so they increased

> my synthroid to 400 mcg daily, and rechecked it in 3 weeks, and i took

> it every day same time with nothing else, and now it is 0.28. i asked

> the dr to check into it why it changed so much, she said no. it just

> fluctuates in some people, and i have already been in hospital with

> complications of fast heart rate once, and again my heart rate is at

> 130. any body have any suggestions, she wont prescribe armour, no

> other specialist around here either. mary

[Guest guest]

>

> Hi Bee and all,

>

> I am at 4 and a half months now and seeing some slow and steady

> changes for the good. I notice that I tend to be very clumsy and

> unfocused, however. I tripped coming down the stairs and broke my

hand

> 4 days ago. Having it casted today.

+++Hi Joanne. I sure feel for you having broken your hand.

>I hated to take pain pills and took as few as possible.

+++You can take a safe pain killer which is White Willow Bark found

at the health foods store. Take it according to the label. Also oil

of oregano is a powerful a pain killer, almost the same as morphine.

The best way to use it for pain is to breath in the fumes from a

bottle of it, or put it on a cloth so you can sniff it frequently.

> I thought to myself that while off work I could try to increase my

VCO. Bee, I get really depressed and exhausted when I do that. I

can't believe how my personality changes. If I stay at the 1 tbsp. I

am able to work, dance, walk and be social and have 1 or 2 couch days

a week. It's very scary being single as I feel that I will never meet

anyone who understands this. So I try to push it sometimes.

>

> My question is, will I still heal on the one tbsp. or will I have to

> try to increase the VCO and suffer die off? And when I increase it,

> how slowly should I do it. I love the diet and rarely cheat and have

> no problems with taking the supplements. It's just the VCO.

+++Some people cannot increase their coconut oil dose until they've

been on the diet and supplements for 6 months or more, so be

patient. Eventually you will be able to increase the dose. Coconut

oil is important for healing so you should try to increase it when

you are able to.

+++You should not be having 1 tbls. of coconut oil at one time, if

that is all you can tolerate. Make sure you split up the dose by

taking 1 teaspoon 3 times a day, in order to minimize your reactions.

+++To increase it slowly, increase it by only 1 teaspoon per day

(spread into separate doses), and don't increase it again until your

die-off symptoms decrease, which will be 4-5 days or longer.

>

> Thanks for your support and understanding.

+++You are very welcome!

Hugs, Bee