It's been a while

[Guest guest]

Danni,

WOW - congrats on the grades! How you can get those awesome grades in

such difficult classes while going through all you are goign through

just shows what an amazing person you are - which we already knew you

were! Amazing.

I sure hope the neurosurgeon can help. Keep us updated. As always,

you are in our thoughts.

angela

Houston

[Guest guest]

Danni,

WOW - congrats on the grades! How you can get those awesome grades in

such difficult classes while going through all you are goign through

just shows what an amazing person you are - which we already knew you

were! Amazing.

I sure hope the neurosurgeon can help. Keep us updated. As always,

you are in our thoughts.

angela

Houston

[Guest guest]

Danni,

WOW - congrats on the grades! How you can get those awesome grades in

such difficult classes while going through all you are goign through

just shows what an amazing person you are - which we already knew you

were! Amazing.

I sure hope the neurosurgeon can help. Keep us updated. As always,

you are in our thoughts.

angela

Houston

[Guest guest]

GOOD TO SEE YOU POST AGAIN HEATHER;; GLAD TO SEE THAT THINGS SEEM TO BE LOOKING UP FOR YOU ALSO;; DONT FEEL GUILTY ABOUT TAKING THE MONEY FROM YOUR GRANDMA;; YOU WORK HARD TO TAKE GOOD CARE OF HER;; & YES GOOD LUCK ON GETTING THE OUT SIDE HELP ;; YOU DESERVE IT;; IM GLAD THAT YOU HAVE MET A NEW FRIEND ALSO;; KEEP LOOKING UP & HANG IN THERE;;GLAD THAT GRANDMA IS DOING SOME BETTER ALSO HUGS DORT <lenette32@...> wrote: Hi everyone,It's been a while since I last posted, but I

just haven't made the time. My grandma's doing okay- the warmer weather we've been having seems to be helping some; it would be even better if it would stop raining so much. She's still having trouble sleeping; some nights she sleeps about 6 hours, but most it's less than that. I encourage her to nap when she feel sleepy during the day, and if she's really tired, she will, but she quite often resists the idea, saying she's being "lazy". I have told her, and remind her from time to time, that sleep helps with controlling the pain from the fibromyalgia(her doc told her that, and I've read it in a couple of places), but the notion of not sleeping during the day is so much part of her personality because of how she was raised, that I don't guess she'll ever totally get past it. As far as other issues we've dealt with, the bitterness and dry mouth she's dealt with is better...she's using Biotene mouthwash and

keeping mints (either dinner mints or chocolate covered mints) on hand all the time, and it is helping.We did get a sugar meter a while back, and have been keeping a fairly close eye on her sugar- I check it 2x a day most days- and it runs from the low 90's right after her morning coffee to around 120 or so a little after supper. The home health nurse looked at the readings yesterday and said that was all normal. But I think when it's in the low 90's is when she feels weak...I know for sure one time that was the case. I've also noticed that since I've been getting her to eat more, she's not having as much of a problem with weakness. We also have gotten some more paperwork about the state program that would pay me to take care of her. It looks like things are moving along and that we have been approved. My aunt, who had checked into the same thing when her husband was diagnosed with cancer a couple of years

back, has been looking over the paperwork with me and said that from what she's been told, the next steps are an in-home assessment and then for me to be tested and hired by an agency. I hope she's right, I'm really eager to get started with this..with prices of everything going up, I need the extra money. So, everyone wish me luck on this. As far as my personal life, I'm still feeling pretty depressed. I feel stuck because there's so much I feel I'm missing out on, and because I feel like such a bum (for lack of a better word) because I'm not able to pay my own bills, etc. I depend on my mom to pay for most of my expenses, and my grandma pays me enough every month to cover a couple of my bills and my groceries. She say's she's glad to help because she's happy with what I'm doing for her, and if it wasn't for me helping, she'd either be alone or have to pay someone else. But I still feel bad taking her money- I

guess I do earn it, but I feel like I'm taking advantage of her. I don't ask for the money, and I don't ever use it for frivolous stuff. I've always been my own worst critic; I have a tendency to never feel like anything I do is quite good enough. Don't really know why- in school I always made good grades and won a few awards here and there. But, to me, the hows and whys aren't as important right now as figuring out how to break the habit- I think it will help me feel a lot better. A couple of things have been going right for me lately, though. I have started pursuing my family tree again, for the first time in about 10 years, thanks to Sara, who mentioned she was interested in hers. I've made a lot of headway in some areas, and have gotten stuck on other branches. For anyone out there who's interested in doing the same, I recommend the site www.rootsweb.com. They have a huge collection of resources

that are available to the public. I've gotten a lot of info from them. The other good thing is I've finally met someone that I can call a friend. There are some of you guys that I am beginning to like to talk to, but this is a young woman my own age that I met on myspace. She and I are turning out to be so much alike it's amazing. It's really a wonderful thing to me to have met someone I can talk to for hours at a time and not get bored. I haven't had a close friend in a long time, and I have really missed it.I need to go now, I have a couple of things I need to do.

[Guest guest]

Hi all,

Though I haven't posted in a while, I do diligently read and keep you all in my

thoughts and prayers. Recently, in the last 3 or 4 months, I have developed

severe sciatica, on my left side. It starts deep in the hip, radiates to the

back of the hip and down my leg. I haven't found much relief other than the

probing the PT specialist does. On more than one occasion she has informed me

that I locked up my SI joint. I can actually hear it when she is able to release

it. I am unsure if it is causing my sciatica but the timing is right. Amazingly,

with all that we go through and endure, it is the little things that get to us

in the end. This pain is minor at best in the scale of things but it is taking

it's toll. It has interrupted my walking and my sleep. I was going to the pool

during lunch but I had to put an end to it. Now of course with work full time, a

child and household to take care of. I never seem to get there. It is not in a

" good " section of town so venturing there in the evening isn't working out well.

One of the ladies in my neighborhood put in a resistance pool last fall and said

that when the weather is a bit better I can use it, so that will help. I just

thought I would vent, let you all know how I am doing. I think of you all often.

C

[Guest guest]

,

I'm so sorry to hear about this, is it your doc who sent you to PT, and what does he say regarding this? Life in our bodies never quite seems to be perfection hunh! Are you trying meds at all for this new pain? I hope this new arragement for swimming will work out, keep you moving, and hopefully this will pass.

I'm personally dealing once again with painful elbows, my right far worse, due to the use of my grabbers, so I'm resorting to a lot knealing, especially to do laundry, and Bonnie suggested I get my kids involved in doing their own laundry, one less stress on my body.

I guess that compromises have to be developed as we age, and time away from revision, to deal with the wearing down of areas away from our long fusions. I'm just a bit pissed that I have to leave alone a tool that makes things more even for me, but I want those joints to last. It's always something it seems.

Do keep us updated on how things go with this, hopefully it will warm up for you and that swimming will be of benefit. I got out and puttered in my yard yesterday, it hit sixty here, and with the sun going down later, it was so good to have the warm sun hit my face, and everyone out in public was so happy, it's been a longgggggg colddddddddd winter here, with little of our normal sunny days.

Hugs to you!

Colorado Springs

[ ] It's been a while

Hi all,Though I haven't posted in a while, I do diligently read and keep you all in my thoughts and prayers. Recently, in the last 3 or 4 months, I have developed severe sciatica, on my left side. It starts deep in the hip, radiates to the back of the hip and down my leg. I haven't found much relief other than the probing the PT specialist does. On more than one occasion she has informed me that I locked up my SI joint. I can actually hear it when she is able to release it. I am unsure if it is causing my sciatica but the timing is right. Amazingly, with all that we go through and endure, it is the little things that get to us in the end. This pain is minor at best in the scale of things but it is taking it's toll. It has interrupted my walking and my sleep. I was going to the pool during lunch but I had to put an end to it. Now of course with work full time, a child and household to take care of. I never seem to get there. It is not in a "good" section of town so venturing there in the evening isn't working out well. One of the ladies in my neighborhood put in a resistance pool last fall and said that when the weather is a bit better I can use it, so that will help. I just thought I would vent, let you all know how I am doing. I think of you all often. C

[Guest guest]

ValC,

I am so sorry you are having pain problems with your SI. Sciatic pain really is

the worst isnt it?

I cant recall if you ever " met " Martha, who lives in Chicago, same " vintage " as

me surgery-wise. She was at the last retreat so others have met her.

Anyway....she had continuing SI problems and finally found a PT that could kind

of pop that joint back in, and her pain would go away. Over time she learned

that she could actually do it herself. What she found was if she went to her

local warm water therapy pool during " free " time, she would just use the floats

to sort of hang in the deep end, gradually work all the muscles a little bit in

the hip/buttock area...and then somehow relaxing and clenching those muscles at

the same time it would pop the joint back into alignment. Pretty neat for her.

I dont know if Martha reads regularly, but I can send you her email if you

want...I am sure she can tell you about it.

Have you been back to Glazer about he sciatic pain?

Take Care, Cam

[Guest guest]

HI ,

Thanks for the response. No, the doctor did not send me to PT, I actually never

stopped since surgery. The insurance renews every now and then but mostly I go

to keep the neuropathy under control with myofacial release and she deals with

my hips too. The neuropathy is actually a lot better, it acts up now mostly

under stress otherwise it remains calm. I am unsure who to seek for my hip,

Glazer seems primarily interested in surgical candidates so I am leaning toward

a physiologist to kind of help assess the situation. Of course, my hip is an old

bone harvest site, it has DJD, locking SI joint, as well as causing sciatica. I

have only been taking Motrin for the inflammation to date but that is quickly

becoming old and not enough. Sorry, you had to give up the grabbers. I found its

only use to be for the laundry and I gave that up before surgery and have never

done it again. It is hunny's permanent job now. My ten year old even hauls and

sorts his own. Train them young huh! Take care , oh and we are looking at

70's this weekend. Time to rake the yard! Ok where are my pain killers?

C

>

> ,

>

> I'm so sorry to hear about this, is it your doc who sent you to PT, and what

does he say regarding this? Life in our bodies never quite seems to be

perfection hunh! Are you trying meds at all for this new pain? I hope this new

arragement for swimming will work out, keep you moving, and hopefully this will

pass.

>

> I'm personally dealing once again with painful elbows, my right far worse, due

to the use of my grabbers, so I'm resorting to a lot knealing, especially to do

laundry, and Bonnie suggested I get my kids involved in doing their own laundry,

one less stress on my body.

>

> I guess that compromises have to be developed as we age, and time away from

revision, to deal with the wearing down of areas away from our long fusions. I'm

just a bit pissed that I have to leave alone a tool that makes things more even

for me, but I want those joints to last. It's always something it seems.

>

> Do keep us updated on how things go with this, hopefully it will warm up for

you and that swimming will be of benefit. I got out and puttered in my yard

yesterday, it hit sixty here, and with the sun going down later, it was so good

to have the warm sun hit my face, and everyone out in public was so happy, it's

been a longgggggg colddddddddd winter here, with little of our normal sunny

days.

>

> Hugs to you!

>

>

> Colorado Springs

>

>

> [ ] It's been a while

>

>

>

> Hi all,

> Though I haven't posted in a while, I do diligently read and keep you all in

my thoughts and prayers. Recently, in the last 3 or 4 months, I have developed

severe sciatica, on my left side. It starts deep in the hip, radiates to the

back of the hip and down my leg. I haven't found much relief other than the

probing the PT specialist does. On more than one occasion she has informed me

that I locked up my SI joint. I can actually hear it when she is able to release

it. I am unsure if it is causing my sciatica but the timing is right. Amazingly,

with all that we go through and endure, it is the little things that get to us

in the end. This pain is minor at best in the scale of things but it is taking

it's toll. It has interrupted my walking and my sleep. I was going to the pool

during lunch but I had to put an end to it. Now of course with work full time, a

child and household to take care of. I never seem to get there. It is not in a

" good " section of town so venturing there in the evening isn't working out well.

One of the ladies in my neighborhood put in a resistance pool last fall and said

that when the weather is a bit better I can use it, so that will help. I just

thought I would vent, let you all know how I am doing. I think of you all often.

C

>

[Guest guest]

Bonnie,

I am glad to hear from you. I see you agree that it is the little things that

get us in the end. It is not funny but I have to laugh that after all that pain

and struggle, it is sciatica that brings me to my knees! It is not right and I

have not given up the fight!. I will never regret revision! never! I have a very

vivid memory of the day I decided to have surgery. Getting out of the car at the

99 restaurant watching this other woman being helped into a wheel chair in the

handicap zone, she was bent over at a 70 degree angle and had to twist her neck

to look up. The woman with her confirmed it was scoli. I can recognize it

anywhere, anytime. I praise God the day I found Glazer and have been ever

grateful for a successful revision. This is just a by product that would have

happened regardless of revision. I am sure there is a reprieve out there, I just

need to find it. Actually, your my inspiration. I dreaded getting older for the

shear vastness of this disease but you have 18 years on me and you are more or

less OK and that brings me great comfort. I hope I didn't insult you, I didn't

mean to if I did. Thanks for writing. C

>

> Hi C.

>

> I can surely relate. I've had the same symptoms as you years after

> revision. Yes, I agree it is frustrating that after being through so

> very much, I believe it really is the " little " things that get us in

> the end. After having SI joint problems for a while, I had a CT scan

> of the spine which showed a lot of deterioration in my SI Joints. So

> much so, that almost a half of my left SI Joint appears to have

> disintegrated. (The scan showed nothing about my spine because of all

> the hardware. But to see the SI Joints, they scan the spine. I don't

> why, but that's the way it was done when I had my scan in 2006.)

> Some may wonder why bother scanning the SI JOints, because no matter

> what the scan shows, it is most likely that nothing will be done.

> Surgery fusing the SI Joints is the only possibility (so I've been

> told), but the chances are that no good would come of that and then,

> and I quote two top scoli surgeons " If your SI Joints are fused, you

> really wouldn't be able to move. " With emphasis on " really " . Pain

> management and stretching exercises have helped me.

>

> I had an open surgery a year ago for a completely ruptured rotator

> cuff in my right shoulder. My surgeon and my PT agreed with me that

> my scoliosis and surgeries and resulting kyphosis played a part in

> causing my rotator cuff problems. (I've never been athletic. I don't

> play golf or tennis) Also, it seems to me that the percentage of

> rotator cuff problems in post scoli revision patients is higher than

> in the overall population. Now I'm beginning to have problems with my

> left shoulder but it doesn't feel like a rotator cuff problem. My PCP

> had an x-ray taken which showed " moderate degenerative changes " , in

> other words, arthritis. I also have a lot of pain in my neck and the

> areas of T-1 and T-2 at times, (above the fusion) which I keep under

> control with occasional NSAIDS and stretches and pillow placement.

> So far, my hips and knees are fine.

>

>

> I " m 12 years post revision and my age, 68, doesn't help.

>

> So what's next for me? for us? I don't know, but I still feel that

> revision surgery was absolutely necessary for me and I'm glad I had it

> done. Had I needed to make the choice knowing what would happen down

> the road, I still would decide to go ahead with revision. I'm still

> better off having had it. I hope you feel the same.

>

> I hope you find a way to feel better.

>

> Bonnie

>

[Guest guest]

Hi ,

Wishing and hoping for me does a whirl of good. Why? because I am not alone and

take comfort in the fact that others are looking out for me and wishing me well.

Right back at you girl, I am sending a cyber hug.

C

>

> Hey , I haven't posted or caught up on things here in several weeks and

I just now took a look at all of the conversations going on in here...new

revisions, interesting conversations, post op recoveries, etc. and I don't think

I'll be getting caught up on everything soon, so to everyone, I hope everything

is going well and if not, keep on keeping on and try to make for better

days...that's how I try to do it.

>

> And to you, , geez girl. I do hope things will settle down and improve

for you. Just being a single parent and working full time has its demands, let

alone someone with a disability and all things involved in that being on top of

the heap. If wishing could make things better then we'd all be better because I

have enough wish energy to spread around, but unfortunately it just doesn't work

that way. Here's wishing and hoping for some better days for you.

>

> Best,

> G

>

[Guest guest]

Hi Cam,

No, I haven't seen Glazer regarding the hip pain, I think a bit more research on

my part is in order. At this point, I think he is primarily focusing on surgical

candidates, like Val. I will probably seek out a physiologist. My PT therapist

can pop it back into place. I haven't figured out how to do it myself yet. I

live for Thursday's and am usually Ok until the following Tuesday so I do get

some reprieve once she pops it. That is exactly what I do when I go to the

therapy pool except I use the time in the deep end to jog and then I hang there.

I would like Martha's email address and Val D home address please. Thanks Cam.

>

> ValC,

>

> I am so sorry you are having pain problems with your SI. Sciatic pain really

is the worst isnt it?

>

> I cant recall if you ever " met " Martha, who lives in Chicago, same " vintage "

as me surgery-wise. She was at the last retreat so others have met her.

Anyway....she had continuing SI problems and finally found a PT that could kind

of pop that joint back in, and her pain would go away. Over time she learned

that she could actually do it herself. What she found was if she went to her

local warm water therapy pool during " free " time, she would just use the floats

to sort of hang in the deep end, gradually work all the muscles a little bit in

the hip/buttock area...and then somehow relaxing and clenching those muscles at

the same time it would pop the joint back into alignment. Pretty neat for her.

>

> I dont know if Martha reads regularly, but I can send you her email if you

want...I am sure she can tell you about it.

>

> Have you been back to Glazer about he sciatic pain?

>

> Take Care, Cam

>

[Guest guest]

,

I hate it when you write a post and it disappears! if this is a repeat, sorry. I

just wanted to say that wishing and hoping things are well from the likes of all

of you is all the comfort I need. I spent 30 years thinking I was all alone and

now I am not. I appreciate all the warm thoughts. I am sending a cyber hug and

thanks. C

>

> Hey , I haven't posted or caught up on things here in several weeks and

I just now took a look at all of the conversations going on in here...new

revisions, interesting conversations, post op recoveries, etc. and I don't think

I'll be getting caught up on everything soon, so to everyone, I hope everything

is going well and if not, keep on keeping on and try to make for better

days...that's how I try to do it.

>

> And to you, , geez girl. I do hope things will settle down and improve

for you. Just being a single parent and working full time has its demands, let

alone someone with a disability and all things involved in that being on top of

the heap. If wishing could make things better then we'd all be better because I

have enough wish energy to spread around, but unfortunately it just doesn't work

that way. Here's wishing and hoping for some better days for you.

>

> Best,

> G

>

[Guest guest]

Bonnie,

I am curious about your SI joint problems. What symptoms does one have if they have trouble in that area?

Jeanne

[ ] Re:It's been a while

Hi C.I can surely relate. I've had the same symptoms as you years after revision. Yes, I agree it is frustrating that after being through so very much, I believe it really is the "little" things that get us in the end. After having SI joint problems for a while, I had a CT scan of the spine which showed a lot of deterioration in my SI Joints. So much so, that almost a half of my left SI Joint appears to have disintegrated. (The scan showed nothing about my spine because of all the hardware. But to see the SI Joints, they scan the spine. I don't why, but that's the way it was done when I had my scan in 2006.) Some may wonder why bother scanning the SI JOints, because no matter what the scan shows, it is most likely that nothing will be done. Surgery fusing the SI Joints is the only possibility (so I've been told), but the chances are that no good would come of that and then, and I quote two top scoli surgeons "If your SI Joints are fused, you really wouldn't be able to move." With emphasis on "really". Pain management and stretching exercises have helped me.I had an open surgery a year ago for a completely ruptured rotator cuff in my right shoulder. My surgeon and my PT agreed with me that my scoliosis and surgeries and resulting kyphosis played a part in causing my rotator cuff problems. (I've never been athletic. I don't play golf or tennis) Also, it seems to me that the percentage of rotator cuff problems in post scoli revision patients is higher than in the overall population. Now I'm beginning to have problems with my left shoulder but it doesn't feel like a rotator cuff problem. My PCP had an x-ray taken which showed "moderate degenerative changes", in other words, arthritis. I also have a lot of pain in my neck and the areas of T-1 and T-2 at times, (above the fusion) which I keep under control with occasional NSAIDS and stretches and pillow placement.So far, my hips and knees are fine.I"m 12 years post revision and my age, 68, doesn't help.So what's next for me? for us? I don't know, but I still feel that revision surgery was absolutely necessary for me and I'm glad I had it done. Had I needed to make the choice knowing what would happen down the road, I still would decide to go ahead with revision. I'm still better off having had it. I hope you feel the same.I hope you find a way to feel better.Bonnie

[Guest guest]

Hi C.

Sorry for the delayed response. My daughter was here for a long

weekend and I didn't look at my email the entire time.

Well, I can't find anything in your post that might have insulted me,

so I certainly am not insulted!

You and I are alike in a very important way. My " motto " is Never Give

Up. I live by that thought and it does wonders for me. It gives me

the ability to keep on searching until I learn as much as I can, find

the best doctors for me, keep on doing PT exercises long after I would

rather stop and, in general, not give up until I find the help I

need. I've gotten to a good place because I didn't give up until I

got here. Truthfully, it was a very hard journey, and I am quite proud

of myself, if I may say so.

Bonnie

[Guest guest]

Hi Jeanne,

I'll tell you my symptoms, but they may be different than what other

folks experience. I would think it depends on what exactly is wrong.

A few members of this group have been talking about their SI Joint

popping out. Mine doesn't seem to be doing that. My SI Joints are

very painful when touched. I have symptoms of piriformis type aches

and pains. I want to dig my fist into my buttock to make the pain go

away. A CT scan three years ago showed that my left SI Joint is

disintegrating, for lack of a better word. Sometimes, the pain seems

to be above the level of the SI Joint, which makes little sense, I

think, but my pain doc seems to understand. Aside from pain meds and

moving around so I'm not in any one position too long, acupressure

helps.

I hope this isn't too confusing. Sometimes I wonder how much pain can

flow from SI Joints.

Bonnie

[Guest guest]

Hi Bonnie,

I see my neurologist early April, I am going to talk to him about the sciatica

and get my recent xrays from the hospital. They took a ton of xrays on that hip.

Thanks for the vote of confidence. You know as soon as I try to investigate this

thing, the symptoms will go away.

Such is life. C

>

> Hi C.

>

> Sorry for the delayed response. My daughter was here for a long

> weekend and I didn't look at my email the entire time.

>

> Well, I can't find anything in your post that might have insulted me,

> so I certainly am not insulted!

>

> You and I are alike in a very important way. My " motto " is Never Give

> Up. I live by that thought and it does wonders for me. It gives me

> the ability to keep on searching until I learn as much as I can, find

> the best doctors for me, keep on doing PT exercises long after I would

> rather stop and, in general, not give up until I find the help I

> need. I've gotten to a good place because I didn't give up until I

> got here. Truthfully, it was a very hard journey, and I am quite proud

> of myself, if I may say so.

>

> Bonnie

>