Re: S1 joint injection

[Guest guest]

Dear Franca,

There are a core group of members who are post-revision that post often. Cam and I have both thought that members move on a lot once they are done with surgery. One reason maybe that they are better, and they just get back to their lives. Another may be that they are still painful and struggling, and just don't know how to post that, fearful of making those awaiting surgery scared. I have said it often, I stay almost four years post-revision to help the new ones, just diagnosised, or about to have surgery, have someone who's been through it to talk to. I'm always careful to let members know that while I am painfree post revision, many have gotten just a reduction in pain, that no doc should gaurntee them they will be painfree afterwards. I think almost all patients that have gone through revision have been glad they did it, either because their pain was reduced, or they are able to function better. I also stay because thank my lucky stars I'm good now, but what the future holds who knows, and if I were to become painful again, or suffer a setback, I'd have these great members to support me through it. No one " Gets" it like we do! Doc's treat us but don't live in our bodies, and I have found the help and support of the members here very valuable to me. There is a place here for all of us, those who have been through revision, those waiting to have surgery, those about to go through it, and those not choosing it right now. There also should be a place for those who had revision and are still battling some pain, and those who are painfree. We even have a member who regrets her revision, and is more painful afterwards. No two of us will come through Flatback exactly the same, and that support and warmth we give each other helps us get through another day.

I have wondered out loud and to other members if being four years out if my voice here is still needed. Then comes a message from someone that needs help, and I know I'm right where I should be. If I can help one woman/man get to a qualified doc, and they don't have to run around for years like I did , painful and not getting help, my time here is very well spent. As Cam says it would be easy to get busy with life and let this go by the wayside, but she and I and others, stay to be of help to those going through it now. I'm proud to be a member of such a group!

Colorado Springs

[ ] S1 joint injection

Hello Folks!Had my s1 cortizone joint injection August 30th And called Rands ofice Sept 11 to inform no improvement with pain.I was kind of wondering how many post revision patients have pain a year after revision surgery? Think there should be a poll, have a count of people that have pain and what pain meds they take to help I take 2 trams twice a day and it helps but I was hoping to get off the tram, if the injection worked. I just thought it would me a good way to see the results of revision on pain vs people that are pain free. sometimes I feel alone, although I dont think so. I know I'm better than before revision. I don't get on the computer too often so I find it dificult to keep track of whoo is at what point of pre or post revision. I also feel that most post revision patients dont post often, is that because they are pain free and dont have the fear of surgery ahead?Ann how was you're visit? how is you're leg or foot?Take care all! Franca

[Guest guest]

Franca,

I am post op and I am posting. There are quite a few post ops still

posting, Cam, Vonnie, , PA, CA, just to name a few.

My surgery was only this past April. I am approaching 6 months. I

also had servere pain in my butt, siatica and down my legs. I had

this thing for a while where I would go to sit down and the shooting

pain in my butt would strike. I couldn't move, sit or stand until it

passed. The following is what helped. I am currently doing water

therapy 3 times a week. I also do a series of stretch exercises

morning and night. i can not say that I am pain free but I am

painkiller free. Most of my issues right now is with tingling

sensations.

>

> Hello Folks!

> Had my s1 cortizone joint injection August 30th And called Rands

ofice

> Sept 11 to inform no improvement with pain.

> I was kind of wondering how many post revision patients have pain

a

> year after revision surgery? Think there should be a poll, have a

count

> of people that have pain and what pain meds they take to help I

take 2

> trams twice a day and it helps but I was hoping to get off the

tram, if

> the injection worked. I just thought it would me a good way to see

the

> results of revision on pain vs people that are pain free.

sometimes I

> feel alone, although I dont think so. I know I'm better than

before

> revision. I don't get on the computer too often so I find it

dificult

> to keep track of whoo is at what point of pre or post revision. I

also

> feel that most post revision patients dont post often, is that

because

> they are pain free and dont have the fear of surgery ahead?

>

> Ann how was you're visit? how is you're leg or foot?

> Take care all!

> Franca

>

[Guest guest]

HI Franca,

I wouldn't call you a post-revision patient quite yet, in terms of what your pain level will be post revision. It took me a year to be 80% better and the next 20% took 2 more years. That's much longer than most, but not to be fully recovered after one year is not unusual. So, maybe you should just give yourself some more time to heal.

Bonnie

[ ] S1 joint injection

Hello Folks!Had my s1 cortizone joint injection August 30th And called Rands ofice Sept 11 to inform no improvement with pain.I was kind of wondering how many post revision patients have pain a year after revision surgery? Think there should be a poll, have a count of people that have pain and what pain meds they take to help I take 2 trams twice a day and it helps but I was hoping to get off the tram, if the injection worked. I just thought it would me a good way to see the results of revision on pain vs people that are pain free. sometimes I feel alone, although I dont think so. I know I'm better than before revision. I don't get on the computer too often so I find it dificult to keep track of whoo is at what point of pre or post revision. I also feel that most post revision patients dont post often, is that because they are pain free and dont have the fear of surgery ahead?Ann how was you're visit? how is you're leg or foot?Take care all! Franca

[Guest guest]

I don't like to make anyone awaiting surgery fearful and I

understand that many don't like to say they have pain because of

that. And I wasn't gauranteed pain free although I didn't even ask

because I knew from the other suport group and my own research that

the surgery isn't always 100% pain free. And as I said many times I'm

glad I did it. but I know that the decision to have the surgery can

make someone feel like being between a rock and a hard place. You ask

yourself do I want to be standing straight or do I want to get rid of

the pain. And you know you might not get both, but you think positive

and hope for the best. And I stay on because we don't know what the

future will bring. I had the s1 joint injection also because the Dr

suggested it a year after surgery, he also wants to know if its the

screw causing the pain.

>

> Dear Franca,

>

> There are a core group of members who are post-revision that post

often. Cam and I have both thought that members move on a lot once

they are done with surgery. One reason maybe that they are better,

and they just get back to their lives. Another may be that they are

still painful and struggling, and just don't know how to post that,

fearful of making those awaiting surgery scared. I have said it

often, I stay almost four years post-revision to help the new ones,

just diagnosised, or about to have surgery, have someone who's been

through it to talk to. I'm always careful to let members know that

while I am painfree post revision, many have gotten just a reduction

in pain, that no doc should gaurntee them they will be painfree

afterwards. I think almost all patients that have gone through

revision have been glad they did it, either because their pain was

reduced, or they are able to function better. I also stay because

thank my lucky stars I'm good now, but what the future holds who

knows, and if I were to become painful again, or suffer a setback,

I'd have these great members to support me through it. No one " Gets "

it like we do! Doc's treat us but don't live in our bodies, and I

have found the help and support of the members here very valuable to

me. There is a place here for all of us, those who have been through

revision, those waiting to have surgery, those about to go through

it, and those not choosing it right now. There also should be a place

for those who had revision and are still battling some pain, and

those who are painfree. We even have a member who regrets her

revision, and is more painful afterwards. No two of us will come

through Flatback exactly the same, and that support and warmth we

give each other helps us get through another day.

>

> I have wondered out loud and to other members if being four years

out if my voice here is still needed. Then comes a message from

someone that needs help, and I know I'm right where I should be. If I

can help one woman/man get to a qualified doc, and they don't have to

run around for years like I did , painful and not getting help, my

time here is very well spent. As Cam says it would be easy to get

busy with life and let this go by the wayside, but she and I and

others, stay to be of help to those going through it now. I'm proud

to be a member of such a group!

>

>

> Colorado Springs

> [ ] S1 joint injection

>

>

> Hello Folks!

> Had my s1 cortizone joint injection August 30th And called Rands

ofice

> Sept 11 to inform no improvement with pain.

> I was kind of wondering how many post revision patients have pain

a

> year after revision surgery? Think there should be a poll, have a

count

> of people that have pain and what pain meds they take to help I

take 2

> trams twice a day and it helps but I was hoping to get off the

tram, if

> the injection worked. I just thought it would me a good way to

see the

> results of revision on pain vs people that are pain free.

sometimes I

> feel alone, although I dont think so. I know I'm better than

before

> revision. I don't get on the computer too often so I find it

dificult

> to keep track of whoo is at what point of pre or post revision. I

also

> feel that most post revision patients dont post often, is that

because

> they are pain free and dont have the fear of surgery ahead?

>

> Ann how was you're visit? how is you're leg or foot?

> Take care all!

> Franca

>

[Guest guest]

Franca,

I am really looking forward to seeing Rand next week. I think it is

really time for me to see a pain management expert. Here's the deal

(some of you know this already):

My back pain is defintely minimal. I have some residual numbness

which I think eventually will go away but that it might take a long

long time. I feel that I tire quickly but I'm up before 6 a.m. and

not getting any younger (I turn 46 next week), and I work a stressful

day and then attend to all the household stuff because I am a single

Mom. I guess I shouldn't be surprised that I want to go to bed early.

The pain I have is low and to the side and in the butt. I suspect

this is the SI joint which Rand could see was quite arthritic. My

gait has changed and I find walking distances can sometimes be hard.

Sometimes I have flair ups in my ankle. I try to consiously improve

my gait and not let myself turn my right foot in while I walk. I have

about one week a month when the pain is considerably worse. I have

tracked it to my hormonal surge. I have doubted myself but I have now

tracked for a while and I don't think I am making this up. All in

all,my back does not rule my life anymore.

I take 10 mg of Oxi 3 times a day and from time to time (going

somewhere where I know the seats will be bad (Fenway Park), etc. I

take a dose of 5mg of oxicodone. I don't feel a bit guilty or

shameful but often I feel the need for the drug more than I feel the

pain and this concerns me. I was on 2x regimen of Oxi but needed to

increase it about 4 months ago. I'd like to talk this through with a

pain management person. Rand always says:...don't worry. You are on

the lowest dose.

It's all so tricky.

RE: posting. I do think some folks move on because they got what they

needed from the board. I suspect some are pain free and some probably

aren't. I hadn't posted for a while because I was working too hard.

Nice to hear from you Franca.

[Guest guest]

Sorry I must of missread, I thought you already saw him. Let us know

what he say's (if its o.k) Thank you for you're reply. It was

interesting what you said about having more pain one week a month,

because I definatly noticed that on myself as well, it could be

hormonal, ading more presure. And I also have that but pain, I also

have the numbness on a certain area of my back hips, but I only

notice it when I touch it so that is just on the surface, but I get a

numb tingling feeling, sometimes on my left toes and sometimes at the

bottom of left foot or sometimes a numb feeling down my leg at knight

or on realy busy weekends when I do more is when I feel it the most

and in the morning after a busy night, like entertaining, having

company.

I agree with you on taking pain meds, and Dr Rand has said this

himself " don't wory about having to take pain med.. if it helps you

do the things you want to do " (or have to do)

Thanks for posting Ann its nice to know I'm not the only one in pain

over a year post revision. Thats what I meant when I posted earlier

about post revision patients with pain OVER a year after surgery. If

others post what they feel it can make others feel more conected to

the SUPORT group. Thanks

Franca

P.S. About house work, try to get you're daughter to help you, I have

two teenagers and I know it can be dificult to ask to get their

help, sometimes its easier to do it myself, they don't just

volunteer, so I give them certain days of the week.

>

> Franca,

> I am really looking forward to seeing Rand next week. I think it is

> really time for me to see a pain management expert. Here's the deal

> (some of you know this already):

>

> My back pain is defintely minimal. I have some residual numbness

> which I think eventually will go away but that it might take a long

> long time. I feel that I tire quickly but I'm up before 6 a.m. and

> not getting any younger (I turn 46 next week), and I work a

stressful

> day and then attend to all the household stuff because I am a

single

> Mom. I guess I shouldn't be surprised that I want to go to bed

early.

>

> The pain I have is low and to the side and in the butt. I suspect

> this is the SI joint which Rand could see was quite arthritic. My

> gait has changed and I find walking distances can sometimes be

hard.

> Sometimes I have flair ups in my ankle. I try to consiously improve

> my gait and not let myself turn my right foot in while I walk. I

have

> about one week a month when the pain is considerably worse. I have

> tracked it to my hormonal surge. I have doubted myself but I have

now

> tracked for a while and I don't think I am making this up. All in

> all,my back does not rule my life anymore.

>

>

> I take 10 mg of Oxi 3 times a day and from time to time (going

> somewhere where I know the seats will be bad (Fenway Park), etc. I

> take a dose of 5mg of oxicodone. I don't feel a bit guilty or

> shameful but often I feel the need for the drug more than I feel

the

> pain and this concerns me. I was on 2x regimen of Oxi but needed to

> increase it about 4 months ago. I'd like to talk this through with

a

> pain management person. Rand always says:...don't worry. You are on

> the lowest dose.

>

> It's all so tricky.

>

> RE: posting. I do think some folks move on because they got what

they

> needed from the board. I suspect some are pain free and some

probably

> aren't. I hadn't posted for a while because I was working too hard.

> Nice to hear from you Franca.

>

[Guest guest]

Hi Franca,

My name is Andy and I live in Concord, Massachusetts. I am three

years post-revision (Dr. Boachie/New York) and still

have a lot of problems with chronic pain. Because my fusion was extensive –

from S1 to T10 – most of my spine is now immobilized (i.e., stiff) and so

the parts of my spine above and below the fusion must take the brunt/pressure

of all my movement. This means the area between and above my shoulders, and the

area around my hips and pelvis, are working overtime every time I move.

Consequently I often have a lot of pain in those areas. I take Ultram (about 3

a day) and occasionally stronger meds like Percocet or Valium (a muscle

relaxer). I hate taking meds because they all have side effects that interfere

with my daily living – but, then, so does the pain if I don’t take

them!

The one thing that consistently helps me is using a Pilates

Reformer for an hour, at least twice a week. Those exercises stretch out my cramping

muscles without damaging my fusion. Pilates Reformer routines are especially

safe for people with fusions because they don’t involve twisting, arching

or bending. In fact, I find it so helpful that I wrote a book based on my

instructor’s modified exercises to accommodate people with fragile backs.

The name of the book is Pilates For Fragile Backs! You can read more about it

if you’re interested at: www.pilatesforfragilebacks.com.

It’s important to make clear that joining a Pilates mat class is a BAD

idea for those of us with fusions.

I hope this post helps you to feel that you’re not

alone. I suspect many post-revision patients continue to have some degree of

pain and discomfort. Mine can be so bad that I can’t sit, stand or walk

for more than a few minutes. I had to stop working and am now on Disability (it

took me two years to get it – and with the help of an attorney from the

outset!). This is not to say that everyone will have chronic pain. But I do

think it’s realistic to be prepared for continuing or different pain even

after revision surgery, unfortunately.

Best Wishes,

Andy

[Guest guest]

Hi Franca,

I've been trying to catch up with the postings recently and saw your

message about pain more than one year after revision. I am two

years post-op and still taking medication for pain. It has gotten

worse recently, so I went to see Dr. Rand last Monday. He thought

the hardware into my pelvis might be the problem, an easy fix if

that was the case, as having one or both of the bolts removed is a

simple, out-patient procedure (his words). He decided to try giving

me shots into the s.i. joints to see if this relieved the pain at

all. If so, that would be an indicator that my pain is most likely

hardware related. Unfortunately, I found no relief from the shots

(he said there should be an immediate MOMENTARY feeling of relief

right after the needle went in. The shots were only supposed to be

diagnostic, not to actully have any kind of steroid in them, but

turns out the doc who gave me them didn't realize that. It didn't

effect the diagnostic purpose of the procedure, but I keep hoping

that I'll wake up in a few days and my back will feel great! (A few

people have told me that steroid shots can take two or more weeks to

actually kick in most effectively.) When I mentioned this to Rand he

told me it was unlikely if I didn't feel that immediate easing for a

moment during the procedure.

So the next step is a bone scan. I'm just waiting for Priscilla to

get back to me with the appointment date and then we'll see if that

turns up anything.

At my one year post-op visit, Dr.Rand had told me that sometimes

a patient is never fully pain-free after revision and that the pain

I'm having may be permanent. He didn't seem to have that attitude

so much this past appointment. I find that hopeful. He asked if I

regreted having the surgery, I replied with a resounding NO! Once

my back went, it started deteriorating fast! In earlier years I had

always gotten good results with physical therapy, weight control,

exercise, you know, a generally healthy lifestyle. But it had

reached a point that that wasn't effective anymore. In fact, these

reasons alone were why he suggested I might be ready for revision

when I went to see him, initially; I'd exhausted the preventatives,

it was pretty much downhill from there. If I hadn't had surgery, I

don't think I'd be upright at this point, and at least with the pain

meds I can do a lot more than before. I just hate the way they make

me feel so forgetful!

Anyway, I'll keep you posted as I have these tests. I'd kind of

drifted off from the board because I feel stalled and tired, and not

up to posting because maybe I'm not doing all I should be.

All my best, Dianne in RI

- In , " crooked_dancer "

<hadouni30@...> wrote:

>

> Sorry I must of missread, I thought you already saw him. Let us

know

> what he say's (if its o.k) Thank you for you're reply. It was

> interesting what you said about having more pain one week a month,

> because I definatly noticed that on myself as well, it could be

> hormonal, ading more presure. And I also have that but pain, I

also

> have the numbness on a certain area of my back hips, but I only

> notice it when I touch it so that is just on the surface, but I

get a

> numb tingling feeling, sometimes on my left toes and sometimes at

the

> bottom of left foot or sometimes a numb feeling down my leg at

knight

> or on realy busy weekends when I do more is when I feel it the

most

> and in the morning after a busy night, like entertaining, having

> company.

> I agree with you on taking pain meds, and Dr Rand has said this

> himself " don't wory about having to take pain med.. if it helps

you

> do the things you want to do " (or have to do)

> Thanks for posting Ann its nice to know I'm not the only one in

pain

> over a year post revision. Thats what I meant when I posted

earlier

> about post revision patients with pain OVER a year after surgery.

If

> others post what they feel it can make others feel more conected

to

> the SUPORT group. Thanks

> Franca

>

> P.S. About house work, try to get you're daughter to help you, I

have

> two teenagers and I know it can be dificult to ask to get their

> help, sometimes its easier to do it myself, they don't just

> volunteer, so I give them certain days of the week.

>

>

> >

> > Franca,

> > I am really looking forward to seeing Rand next week. I think it

is

> > really time for me to see a pain management expert. Here's the

deal

> > (some of you know this already):

> >

> > My back pain is defintely minimal. I have some residual numbness

> > which I think eventually will go away but that it might take a

long

> > long time. I feel that I tire quickly but I'm up before 6 a.m.

and

> > not getting any younger (I turn 46 next week), and I work a

> stressful

> > day and then attend to all the household stuff because I am a

> single

> > Mom. I guess I shouldn't be surprised that I want to go to bed

> early.

> >

> > The pain I have is low and to the side and in the butt. I

suspect

> > this is the SI joint which Rand could see was quite arthritic.

My

> > gait has changed and I find walking distances can sometimes be

> hard.

> > Sometimes I have flair ups in my ankle. I try to consiously

improve

> > my gait and not let myself turn my right foot in while I walk. I

> have

> > about one week a month when the pain is considerably worse. I

have

> > tracked it to my hormonal surge. I have doubted myself but I

have

> now

> > tracked for a while and I don't think I am making this up. All

in

> > all,my back does not rule my life anymore.

> >

> >

> > I take 10 mg of Oxi 3 times a day and from time to time (going

> > somewhere where I know the seats will be bad (Fenway Park), etc.

I

> > take a dose of 5mg of oxicodone. I don't feel a bit guilty or

> > shameful but often I feel the need for the drug more than I feel

> the

> > pain and this concerns me. I was on 2x regimen of Oxi but needed

to

> > increase it about 4 months ago. I'd like to talk this through

with

> a

> > pain management person. Rand always says:...don't worry. You are

on

> > the lowest dose.

> >

> > It's all so tricky.

> >

> > RE: posting. I do think some folks move on because they got what

> they

> > needed from the board. I suspect some are pain free and some

> probably

> > aren't. I hadn't posted for a while because I was working too

hard.

> > Nice to hear from you Franca.

> >

>

[Guest guest]

Oh Ann, I'm so sorry you're not seeing any improvement in your pain,

either. We really do seem to be in the same boat, don't we? I'll

be very interested to hear all about your appointment on Thursday.

I'll be calling Priscilla tomorrow to find out when she set up the

appointment for my bone scan, so I'll probably be in Boston in the

pretty near future. I'll be sure to call you, it would be great if

we could meet up.

By the way, I loved your painting as well and am really impressed

with how well you captured yourself. Dead on!

All my best, Dianne

>

> Dianne, Good to hear from you. I am really in a similar state and

I am

> anxious to hear what Rand says to me on Thursday. I don't have the

> Iliac bolts. It's been over a year now and he thought my pain

would

> decrease and it hasn't. I haven't seen him since around January. I

do

> punish myself - sit at a computer all day - carry tension - I'm

active

> but don't get enough exercise...however even when I am taking it

easy I

> don't feel all that different. As I have been posting the pain

meds

> work pretty well but it would be SO wonderful to wake up in the

morning

> and not have the PAIN hit me - as my first waking thought. It gets

old

> doesn't it? Keep in touch and let me know when you'll be in

Boston. I

> am taking the month of October off and would love to meet up with

you.

> Ann

>

[Guest guest]

Hi Dianne,

good to hear from you, its been a long time, I often wondered

how you were doing, I remember you having pain long after you're

surgery and wondered if you got better or not, I am sorry that you

are still having pain and I hope Dr Rand gets answers for you, please

keep us posted. I had my s1 cortizone injection for diagnostic

purpose as well, he mentioned me getting that after my one year post

op to see if its the screw and did mention that 20-25% of patients

need to get one or the other removed, and its an outpatient procedure.

my injection didn't work either. So now I have to call his ofice to

see if he has any other suggestions, and I'm debating wether to just

wait till next April and talk to him in person at my two year visit.

I didn,t see him at my one year visit because he was out with the

stomach bug and Pricilla canceled all his apts, although I still went

to get my ct scan and x-ray, everything looked good. I had cancelled

my injection at that time because some members in this group said to

give myself more time. since I didn't see him that day I could't ask

him more questions but waited a few more months before getting the

shot. Did Dr Rand tell you to wait two years before getting this

shot? or was it you're dicision, One other thing I was asking myself

was if the s1 joint injection worked and I stayed pain free for how

ever long why would I want surgery to have the screw removed, and

then I would ask myself well if the tramadol works why would I want

injections every time the shot weares out? I have been confused about

a few things specialy since I didn't get to talk to him on my one

year visit and talking to Pricilla is kind of like going through the

middle man. it would be easier one on one. Maybe the bone scan would

be his next suggestion for me as well, but I,m thinking if I should

just wait onother year. need to go now, keep in touch, let us now how

it all goes you too Ann.

P.S. interesting picture but sad. good art work.

> > >

> > > Franca,

> > > I am really looking forward to seeing Rand next week. I think

it

> is

> > > really time for me to see a pain management expert. Here's the

> deal

> > > (some of you know this already):

> > >

> > > My back pain is defintely minimal. I have some residual

numbness

> > > which I think eventually will go away but that it might take a

> long

> > > long time. I feel that I tire quickly but I'm up before 6 a.m.

> and

> > > not getting any younger (I turn 46 next week), and I work a

> > stressful

> > > day and then attend to all the household stuff because I am a

> > single

> > > Mom. I guess I shouldn't be surprised that I want to go to bed

> > early.

> > >

> > > The pain I have is low and to the side and in the butt. I

> suspect

> > > this is the SI joint which Rand could see was quite arthritic.

> My

> > > gait has changed and I find walking distances can sometimes be

> > hard.

> > > Sometimes I have flair ups in my ankle. I try to consiously

> improve

> > > my gait and not let myself turn my right foot in while I walk.

I

> > have

> > > about one week a month when the pain is considerably worse. I

> have

> > > tracked it to my hormonal surge. I have doubted myself but I

> have

> > now

> > > tracked for a while and I don't think I am making this up. All

> in

> > > all,my back does not rule my life anymore.

> > >

> > >

> > > I take 10 mg of Oxi 3 times a day and from time to time (going

> > > somewhere where I know the seats will be bad (Fenway Park),

etc.

> I

> > > take a dose of 5mg of oxicodone. I don't feel a bit guilty or

> > > shameful but often I feel the need for the drug more than I

feel

> > the

> > > pain and this concerns me. I was on 2x regimen of Oxi but

needed

> to

> > > increase it about 4 months ago. I'd like to talk this through

> with

> > a

> > > pain management person. Rand always says:...don't worry. You

are

> on

> > > the lowest dose.

> > >

> > > It's all so tricky.

> > >

> > > RE: posting. I do think some folks move on because they got

what

> > they

> > > needed from the board. I suspect some are pain free and some

> > probably

> > > aren't. I hadn't posted for a while because I was working too

> hard.

> > > Nice to hear from you Franca.

> > >

> >

>

[Guest guest]

Hi Andy

Thank you for posting.

I'm so sorry you have chronic pain. Has Dr Boachie suggested

anything? I understand about the areas that are not fused doing more

work. I don't think my pain is as bad as yours, I'm sorry with what

you have to deal with and what others have to deal with as well.

Congrats on you're book, I will check it out. I don't feel so alone

now thanks for everyones responce. It helps to know how others are

feeling and dealing, to give others an idea of how it is and what to

do after all a suport group should be also for post revision

patients long after there surgery.

Thanks again to everyone that posted and God bless.

Franca

>

> Hi Franca,

>

>

>

> My name is Andy and I live in Concord, Massachusetts. I am three

years

> post-revision (Dr. Boachie/New York) and still have a lot of

problems with

> chronic pain. Because my fusion was extensive - from S1 to T10 -

most of my

> spine is now immobilized (i.e., stiff) and so the parts of my spine

above

> and below the fusion must take the brunt/pressure of all my

movement. This

> means the area between and above my shoulders, and the area around

my hips

> and pelvis, are working overtime every time I move. Consequently I

often

> have a lot of pain in those areas. I take Ultram (about 3 a day) and

> occasionally stronger meds like Percocet or Valium (a muscle

relaxer). I

> hate taking meds because they all have side effects that interfere

with my

> daily living - but, then, so does the pain if I don't take them!

>

>

>

> The one thing that consistently helps me is using a Pilates

Reformer for an

> hour, at least twice a week. Those exercises stretch out my

cramping muscles

> without damaging my fusion. Pilates Reformer routines are

especially safe

> for people with fusions because they don't involve twisting,

arching or

> bending. In fact, I find it so helpful that I wrote a book based on

my

> instructor's modified exercises to accommodate people with fragile

backs.

> The name of the book is Pilates For Fragile Backs! You can read

more about

> it if you're interested at: www.pilatesforfragilebacks.com

> <http://www.pilatesforfragilebacks.com/> . It's important to make

clear that

> joining a Pilates mat class is a BAD idea for those of us with

fusions.

>

>

>

> I hope this post helps you to feel that you're not alone. I suspect

many

> post-revision patients continue to have some degree of pain and

discomfort.

> Mine can be so bad that I can't sit, stand or walk for more than a

few

> minutes. I had to stop working and am now on Disability (it took me

two

> years to get it - and with the help of an attorney from the

outset!). This

> is not to say that everyone will have chronic pain. But I do think

it's

> realistic to be prepared for continuing or different pain even after

> revision surgery, unfortunately.

>

>

>

> Best Wishes,

>

> Andy

>

[Guest guest]

Hi Franca,

As I remember it, I think Rand wanted me to wait another four to

six months or so after my one year appt, just because the healing

process can continue even up to two years. I didn't make an

appointment again until almost four months after my two year

anniversay only because my pain increased over this past summer. I

was putting it off as long as possible because my medical insurance

situation had changed and I was also confused about my options as

far as what else could be done. At one year, Dr. Rand had said that

it's not uncommon to have a certain level of pain post-revision and

that I might be experiencing this pain from there on out.

Additionally, I had a mixed understanding about the viability of

having the pelvic hardware taken out. I thought he had told me that

he doesn't normally like to take hardware out in

long fusions, but as it turned out, he was referring to the spinal

hardware, not the pelvic hardware. Once that fusion is solid, it's

not that big a deal.

I can really sympathize with how you're feeling. The

way I feel now, I would be so relieved if my pain stemmed from the

pelvic hardware, it would be such an easy fix. But when he first

talked about it at the one year point, I was

just too overwhelmed to think about any more screwing around with my

body, and he seemed to be giving me the same sense of " let's wait

and see " . Good advice, I think, as I feel a little more up to

dealing with it now.

I hope we can get this figured out soon. Stay strong, Franca, I'm

wishing you the very best. Thank you again for thinking of me.

Dianne

>

> Hi Dianne,

> good to hear from you, its been a long time, I often wondered

> how you were doing, I remember you having pain long after you're

> surgery and wondered if you got better or not, I am sorry that

you

> are still having pain and I hope Dr Rand gets answers for you,

please

> keep us posted. I had my s1 cortizone injection for diagnostic

> purpose as well, he mentioned me getting that after my one year

post

> op to see if its the screw and did mention that 20-25% of patients

> need to get one or the other removed, and its an outpatient

procedure.

> my injection didn't work either. So now I have to call his ofice

to

> see if he has any other suggestions, and I'm debating wether to

just

> wait till next April and talk to him in person at my two year

visit.

> I didn,t see him at my one year visit because he was out with the

> stomach bug and Pricilla canceled all his apts, although I still

went

> to get my ct scan and x-ray, everything looked good. I had

cancelled

> my injection at that time because some members in this group said

to

> give myself more time. since I didn't see him that day I could't

ask

> him more questions but waited a few more months before getting the

> shot. Did Dr Rand tell you to wait two years before getting this

> shot? or was it you're dicision, One other thing I was asking

myself

> was if the s1 joint injection worked and I stayed pain free for

how

> ever long why would I want surgery to have the screw removed, and

> then I would ask myself well if the tramadol works why would I

want

> injections every time the shot weares out? I have been confused

about

> a few things specialy since I didn't get to talk to him on my one

> year visit and talking to Pricilla is kind of like going through

the

> middle man. it would be easier one on one. Maybe the bone scan

would

> be his next suggestion for me as well, but I,m thinking if I

should

> just wait onother year. need to go now, keep in touch, let us now

how

> it all goes you too Ann.

>

> P.S. interesting picture but sad. good art work.