Hi everyone!

[Guest guest]

Hey

Ive only been with the group about a month and don't recall meeting you.

I feel for you...what is happening?

Hi everyone!

This will be the last time I will be on here for a while.The kids are

leaveing soon to live with Tim mom's.I dont have any place to go.I

guess I will stay here until everything is turned off.Im so

drepressed.

[Guest guest]

Sorry things are going so bad for you, I'm sure there is some help out there for

you, tho I don't know your situation. There are state agencies that can help,

churches... sorry since I dont know your situation its hard to know where to try

to direct you. Good luck and don't let it get to you, easier said than done

sometimes, but I've learned through all I've been through that I can't change

some things, have to learn to live with it... yes, bad things too.

Connie

Hi everyone!

> This will be the last time I will be on here for a while.The kids are

> leaveing soon to live with Tim mom's.I dont have any place to go.I

> guess I will stay here until everything is turned off.Im so

> drepressed.

>

>

>

>

[Guest guest]

Hi...If you dont like the docs in your area try going a major city..Like I

live in NY but my surgeon is in NYC..I went where I felt was the best docs.. Do

some research online and see what you can come up with..I feel dumb but where

is mansield.??

[Guest guest]

It's in Ohio.We are between cleavend,and clombus ohio. Dont feel

dumb.There is a Mansfield Texas also.

In spinaldisorderssupport , LS816@a... wrote:

> Hi...If you dont like the docs in your area try going a major

city..Like I

> live in NY but my surgeon is in NYC..I went where I felt was the

best docs.. Do

> some research online and see what you can come up with..I feel

dumb but where

> is mansield.??

>

>

>

>

[Guest guest]

I haven't been on much myself..The F is home and that's why..Been having a bad cough for a while now..I do not like to try to sleep and have to cough the whole time..I wheeze bad..Ok if I mispelled something oh well!!Sharon Colburn <smc203@...> wrote:

Oh-my-gosh it's been a busy couple of weeks! Between work, and home I haven't had much time to think. Now I'm paying for it! I'm so tired I can hardly sit in front of this computer and type! And...it's only 9:25 AM! Just to do a mini background and update...

I finished treatment in October of 2004 (peg-interferion and rebavirin ..spelling is terrible). I had been off work 5 months with side effects. Once treatment complete they found I also had lyme desease and I was treated for that. I still felt great once I finished treatment for HCV. Well since then I have had a major inner ear infection, and antibiotics for another month. Since then though I have felt really great! I have the aches and pains age gives you but since I am turning 50 in a couple of days I can deal with that. I've pushed myself the past couple of weeks beyond what I should have...working until 7 and 8 at night and taking care of the house on the weekends. That's why I'm so tired. I hope everyone is doing well! Wish I could keep up with the emails since I miss talking with everyone. There's no way I can go back and catch up with everything, by the time I do that, there will be more to catch up with!!

I hope everyone's day is beautiful and for those of you on treatment of any kind right now...

It will all be over soon, you have support with the group so don't be afraid to talk. The side effects do go away and you will feel better!

Take care all...

Love and Peace...SharonC

Do you ? - now with 250MB free storage. Learn more. Jan __________________________________________________

[Guest guest]

I hear ya Janet! I've had a cough left over from all the tx, just enough to irritate me! Just to be sure it wasn't something to add to 'the list' my doctor checked it out. Doesn't think it's lung problems. Why are you coughing? Got a cold or alergies? Also had my heart checked out since it started keeping me awake with an odd heartbeat. Turns out it's just an odd heartbeat! Not bad, not good, just odd. I worry too much now about what could be wrong with me (Par-a-noy-a will destroy ya). I'm getting better as time gets between me and the last year.

Everyone enjoying the ICE?? Jez, this winter is COLD! I may feel it a little more than last year though, the blower went out in my car. Heater works fine but I need to be doing about sixty or more to feel it. My wonderful husband offered to fix it (some of the old honda parts will fit on the newer old honda and it's still sitting in the driveway). I was impressed that he was going to brave the cold! Until he now has to work all weekend and I didn't make an apointment at the mechanic. Hmmmmmmm.

Take care all!! Peace...SharonCJanet <jfw4359@...> wrote:

I haven't been on much myself..The F is home and that's why..Been having a bad cough for a while now..I do not like to try to sleep and have to cough the whole time..I wheeze bad..Ok if I mispelled something oh well!!Sharon Colburn <smc203@...> wrote:

Oh-my-gosh it's been a busy couple of weeks! Between work, and home I haven't had much time to think. Now I'm paying for it! I'm so tired I can hardly sit in front of this computer and type! And...it's only 9:25 AM! Just to do a mini background and update...

I finished treatment in October of 2004 (peg-interferion and rebavirin ..spelling is terrible). I had been off work 5 months with side effects. Once treatment complete they found I also had lyme desease and I was treated for that. I still felt great once I finished treatment for HCV. Well since then I have had a major inner ear infection, and antibiotics for another month. Since then though I have felt really great! I have the aches and pains age gives you but since I am turning 50 in a couple of days I can deal with that. I've pushed myself the past couple of weeks beyond what I should have...working until 7 and 8 at night and taking care of the house on the weekends. That's why I'm so tired. I hope everyone is doing well! Wish I could keep up with the emails since I miss talking with everyone. There's no way I can go back and catch up with everything, by the time I do that, there will be more to catch up with!!

I hope everyone's day is beautiful and for those of you on treatment of any kind right now...

It will all be over soon, you have support with the group so don't be afraid to talk. The side effects do go away and you will feel better!

Take care all...

Love and Peace...SharonC

Do you ? - now with 250MB free storage. Learn more.

Jan

__________________________________________________

[Guest guest]

Yeah, we've had our share, too. We didn't get all the ice you guys did.

Those ice storms are something, they're so beautiful, yet so destructive.

The tree branches are really dazzling. In Milwaukee one time, I was

driving downtown on a sheet of glare ice. The road curved and my car

swerved a little bit, bounced off the side of a city bus, I felt like a

pinball. Neither the bus, nor I stopped. I kind of watched to see what he

would do, neither one of us had any damage and stopping would have really

created a mess. The trick, for those of you who have never had to learn

to drive on the ice, is to keep rolling, avoid braking and accelerating

as much as possible. -dz-

At 05:35 PM 1/29/2005, you wrote:

I hear ya Janet! I've had a

cough left over from all the tx, just enough to irritate me! Just

to be sure it wasn't something to add to 'the list' my doctor checked it

out. Doesn't think it's lung problems. Why are you

coughing? Got a cold or alergies? Also had my heart checked

out since it started keeping me awake with an odd heartbeat. Turns out

it's just an odd heartbeat! Not bad, not good, just odd. I worry

too much now about what could be wrong with me (Par-a-noy-a will destroy

ya). I'm getting better as time gets between me and the last year.

Everyone enjoying the ICE?? Jez, this winter is COLD! I may

feel it a little more than last year though, the blower went out in my

car. Heater works fine but I need to be doing about sixty or more

to feel it. My wonderful husband offered to fix it (some of the old honda

parts will fit on the newer old honda and it's still sitting in the

driveway). I was impressed that he was going to brave the cold!

Until he now has to work all weekend and I didn't make an apointment at

the mechanic. Hmmmmmmm.

Take care all!! Peace...SharonC

Janet <jfw4359@...> wrote:

I haven't been on much myself..The F is home and that's why..Been

having a bad cough for a while now..I do not like to try to sleep and

have to cough the whole time..I wheeze bad..Ok if I mispelled something

oh well!!

[Guest guest]

Good thing... They're supposed to grow back!

-

I actually had a rib-resection in '91 that

totally made me flat, but unfortunately, the ribs grew back.

[Guest guest]

Hello Jen....welcome to our group. Thanks for jumping right in and

telling us about yourself.

Can I just say that if your first surgery was in '91 and you got

Harrington rods and flatback....I am very sorry. I do not think that

was state of the art treatment you got. Just from reading various

boards I get the impression that by the mid 80's the medical

community was pretty hip to the notion that the problems the rod

created were often at the root of greater problems. I consider

myself lucky to have gotten 33 years out of the darned thing...well

actually since I still have it I guess we are going to be together

for life....but still...

I moved up to Binghamton in my teens and had my surgery at Strong

with Dr DeVanney in 72...long retired....in fact I doubt he was

practicing when you were considering surgery. My guess is that in

the mid 70's he was in his mid 40's....but I was a teenager so it is

possible he was younger.

In any event....sounds like you did get the same treatment....which

is odd since as far as I know by the early 80's I don't think most

folks had to wear a plaster body cast....I think they were using the

molded plastic.

I don't know what kind of an opinion you are looking for from us, if

I were you I think I would at least consider getting another opinion

on the source of your pain and if, in fact there are other options

for you. I say that simply because as you have stated you seem

unsure if your Dr gave you the best treatment originally. The only

way to really know if you have to live in these circumstances is to

check out that reality with a few other specialists. It is your

life, your limitations, your pain. You are entitled to seek a 2nd or

3rd opinion and if DrTebor tries to tell you otherwise, you should

consider that a stike against his judgement.

I am sure it is an individual thing, but in order for me to have

been able to accept the limits of pain and the disability I

experienced as a permanant condition in the year leading up to

revision mentally, I would have had to have known there was not a

potential solution. Maybe that sentence is a little unclear....but

all I am trying to say is I would not stake my whole agonly filled

life on one doctors opinion ...EVER.

Doctors are human, they make mistakes, they fall behind the

times..they know they don't have the skill to fix the root problem

so they tell you to " live with it " ...whatever.

It may be at this point there is little to be done...it may be that

there is a lot that can be done. I assume you are still in upstate

NY so you live close enough to consider making a trip, or several,

to some of the doctors that really know the ins and outs of the

tricky complications following HR surgery. This is not a job for the

run of the mill ortho. You want to find someone who has many

patients with your symptoms. You could consider traveling to NYC

where you might see Dr Boachie-Adjej, or Errico...If you

think it would be just as easy to catch a flight to Boston I would

recommend my doctor, Rand....or about the same distance to the

west you might try Dr Bridwell in StLouis (marthas surgeon).

After you spend the time, and energy to do at least one consult with

one of these fine doctors you will probably have better perspective

of what exactly your diagnosis/prognosis is and if there are any

other solutions available. If it turns out you have to stick with

ibupropin ....then there you are.

Just remember...it is your body, your life and it is your right to

find out the answers to questions about your health....with whomever

you choose. If you get another opinion ask for copies of any notes

created as a result of your visit soon after you get home so you

can have them for future reference! In fact, at this point you might

wanot to start getting copies of whatever records are available from

DrTebor.

Sorry to go on so long.... again welcome to the group,

Cam

p.s.I agree, you are too young to be having these problems....what

are you...26?!!!

[Guest guest]

Hi, Jen! Welcome to the group, though of course that seems funny to

say, meaning you are experiencing problems to need our group. But at

least we found each other here!

I'm 30, had surgery in 89, and am in the beginning stages of

flatback, though have had problems for the last 10 years. The first

few years were good. I didn't have all the stuff you did - Milwaukee,

Riker, plaster. Just the molded plastic for a year after sugery. Odd

to think they were still in use in the 90's!

I'll echo what others have said - get to a dr that knows about

problems post-harrington rods. I finally got to see a couple out in

CA a few years ago, and that was reassuring to know that I had a

diagnosis and that I was on the right track with what I've been

doing. When I move later this later, I'll start up again with one of

the main drs so I can get a handle on what's going on again and know

how I can best take care of myself.

Again, welcome! We're glad you found us!

Deb M.

>

> Hello all.

>

> My name is Jen and I am new to the group. I've been a lurker for

the past few days and I figure I might as well introduce myself. I

will post my " bio " soon in the files section, but I figure that you

regulars don't check that too often so this would be better. I had

my first fusion in '91 at Genesee Hospital in Rochester, NY, and the

2nd in '95, ages 12 and 15. Cam and Martha, I saw that you had yours

done at Strong, I am assuming by Dr. Haake as I know that he worked

at both hospitals at that time. If it wasn't him, let me know

because you have me curious. Also, incidentally, was Dr. Tebor

around at that time? He assisted on my two surgeries and is still in

practice...obviously Haake is retired. I was fused in my thorasic

spine in '91, not sure of the details of that one, need to get info,

but in '95 I was fused from C5-L4 with a single Harrington Rod. I

spent two weeks before the surgery in " traction " with the halo

attached to weights on a wheelchair, and a

> hospital bed for sleeping at night. I then had the surgery, which

was 11 hrs and I was in the hospital for 10 days. Sorry if this is

getting long. I was casted by that same awful procedure with the

Riker that you guys all had, that's the thing that I remember the

most about my surgery, and I wore the cast with the halo attached for

I believe 6 months and then another 3 months in a brace. Just to let

you know, I am not sure of any details, like how " off " I was, because

we seem to be having trouble locating my medical records from that

time. For all of you who are not from Rochester, Genesee Hospital

closed a few years back, and I guess my records and x-rays were

trashed. I know I am stupid for not having copies of the stuff, but

hey, I was a kid =)!

>

> A side note and then I will move on- I am still trying to figure

out why I had what seems to be the same procedure that you guys had

some thirty years ago, that is what amazes me! I hate to brag, but I

know that I was the " worst " case that Dr. Haake had ever seen, and he

even brought my films to a conference in Australia for a second

opinion! You guys all sound pretty much the same as me though...

>

> Anyways, for the past year or so I have been having SIGNIFICANT

neck pain, as well as a lot of other problems, I am still not

entirely sure if I am a " flatbacker " but I am always leaning forward,

I guess more when I am sitting than standing, but I do still have a

significant kyphosis in my thoracic area. I actually had a rib-

resection in '91 that totally made me flat, but unfortunately, the

ribs grew back. I went to see Dr. Tebor back in '97, which is the

earliest orthopedic record that my primary physician has for me, to

see if I could possibly have another one, but he was too worried

about my lungs being compromised.

>

> Sorry this is soooo long!!!!! I have an English degree, so I

like to write, and I guess it is helpful to put this all to pen and

paper! I went back to see Dr. Tebor about 2 years ago when the neck

pain started, and he told me to take ibuprophen or naproxen every day

and that basically that was all that could be done. He did take an X-

ray and showed me the scarring above my fusion and said that it was

arthritis and nothing could be done....yadda yadda yadda.....now I

realize that that is what they say!!!! Remember, he assisted on my 2

surgeries and was my original doc but when my case got too extreme,

he sent me to Haake. Oh yeah, I started wearing the Milwaukee brace

when I was 5 and wore it up until the 1st surgery.

>

> I feel like I am too young to be going through all of this, but I

guess the timeframe is right, as my 2nd surgery was 11 yrs ago. I

will stop rambling now, I would love to get everyone's

opinion!!!!!!! I have a loving boyfriend and a horrible desk job

which my doc tells me that I should file a workers comp case for,

even though I have only been there 3 weeks! I cannot sit and type

for 8 hours straight. I am literally to the point of tears every day

and no one really understands what I am going through at all!!!

>

> Martha- by the way- I know your sister's husband. My boyfriend

is working on her house and they had a long conversation about you

and I. We live next door to your sisters soon to be ex-husband. I

am going to completely stay out of that one though!!!!!!!! I would

love to chat if you want to write me privately, also, she gave me

your email and I had already seen your " bio " on here!!!!!!!!!

>

> Okay now I am really done!!!!!!!

>

> Jen =)

>

>

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

> Messenger with Voice. Make PC-to-Phone Calls to the US (and

30+ countries) for 2¢/min or less.

>

[Guest guest]

---Lorrie,

It was so great to get an update from you!!! Jill is now 3.5..WOW!!!

So glad to hear things are working out for you. I know you had a

very hard time after your surgery. ,Pa

In , " bellmore1960 "

<Lorriesnyder@...> wrote:

>

> Hi Everyone!

>

> This is Lorrie!! Yes Cam, I am a lurker and still recovering from

> my surgery with Dr. Boachie that was on November 8, 2005. I'm

almost

> at the 2 year mark. I try to keep up with everyone's posts - just

> kind of skimming them most of the time. I saw that Cam wrote my

> name in regards to Ann having breathing problems and I thought I

> would give everyone an update on me. I wished I could attend the

> mini convention that everyone had down in the Carolinas - it would

> have been so much fun, but I have a 3 ½ year old (and a husband) so

> right now it makes it impossible.

>

> Number 1 - I'm so glad Ann is better. For those of you that don't

> know, I had a breathing tube in for about 10 days with pneumonia

> after my surgery (anterior/posterior and throcoplasty) and an

> infection that they couldn't identify. My next step would have

been

> a vent. They put a larger tube in me and the pneumonia cleared

up.

> Apparently I was in so much pain after the surgery I was not

> breathing deep enough breaths. Sadly, I still have problems today

> with deep breaths - it still hurts. If I've been breathing

shallowly

> and take a deep breath my whole chest cavity still hurts. Like

> taking my first deep breath when I wake up still hurts! I still

> feel like I am being compressed between two blocks of cement or

> wearing an incredibly tight corset.

>

> I just saw Dr. Boachie for a check up last week. My x-rays look

> fine and my curves haven't budged even after I had a small fall on

> our basement steps. My feet flew out from underneath me and I

> landed on my left butt cheek. I stayed there for about 10 minutes

> scared to move. My husband was sleeping and my daughter was

> watching TV in the back room. I started to move and didn't feel

any

> bad pain - I was sore on the butt but my invincible back hadn't

> moved. I kind of feel bionic at times. I told Dr. Boachie that

I'm

> still terrible sore around the ribs, my compressed breathing and

> pain across my shoulder blades. He said it will take a long time

to

> heal and feel " normal " again. He asked if there was any difference

> between the last 6 months and this appointment painwise. I

> said " not much " - I have better energy but my soreness is still

> there - no bad spinal pain. I do take one oxycodone a day to just

> give me a little relief from the pain. My regular doctors says I

> have a " prescription " to exercise as much as possible. That is

hard

> to do with a job and a 3 1/2 year old!

>

> Well, I'm back at work (as a legal secretary). We are doing major

> rennovations to our house (not my husband and me personally) - but

> hired contractors. We are expanding our kitchen, family room and

> bedroom with basement all underneath. Right now I have no

kitchen.

> Anyway, I feel it is good for me to be back at work actually

sitting

> still. At home I feel that I have to keep Jill (3 year old)

> occupied and that gets me depressed when I'm too sore to do

anything

> with her. She is going to a wonderful day care program (school and

> camp incorporated) with lots of friends. I needed to go back to

> work not only for the money but for my sanity. My days are better

> organized and I'm not spending money trying to find entertainment

> for Jill and myself.

>

> I had one setback. - I started taking more oxycodone 3 months

ago.

> I went to my PCP and broke down in his office crying. I am

> depressed - I should have discussed this with him about 3 months

> after the surgery because I wasn't happy. I know everyone on the

> board encouraged me to do so - but I didn't. I told him that I

just

> want to be happy again - he said it would come. He put me first on

> Cymbalta - but I felt sick with that - now I'm on Celexia and it is

> working. The doctor said it works slowly like moving one brick at

a

> time - but I do feel a difference. Pain can be very draining - it

> is hard to do everything I have to do and I get depressed about

it.

> This was an enormous surgery ( 10.5 hours) and I shouldn't feel

> guilty that I'm just not right yet. So the depression can last a

> while...

>

> I'm hoping that in a couple of months at my 2 year mark I will see

> another improvement in my body.

>

> Best to all!

> Lorrie Snyder

> Ellicott City, MD

> Revision 11/8/05

>

[Guest guest]

It's nice to hear from you Lorrie, I've wondered how you were doing..... Please stay in touch with us!! Ken.bellmore1960 <Lorriesnyder@...> wrote: Hi Everyone! This is Lorrie!! Yes Cam, I am a lurker and still recovering from my surgery with Dr. Boachie that was on November 8, 2005. I'm almost at the 2 year mark. I try to keep up with everyone's posts - just kind of skimming them most of the time. I saw that Cam wrote my

name in regards to Ann having breathing problems and I thought I would give everyone an update on me. I wished I could attend the mini convention that everyone had down in the Carolinas - it would have been so much fun, but I have a 3 ½ year old (and a husband) so right now it makes it impossible.Number 1 - I'm so glad Ann is better. For those of you that don't know, I had a breathing tube in for about 10 days with pneumonia after my surgery (anterior/posterior and throcoplasty) and an infection that they couldn't identify. My next step would have been a vent. They put a larger tube in me and the pneumonia cleared up. Apparently I was in so much pain after the surgery I was not breathing deep enough breaths. Sadly, I still have problems today with deep breaths - it still hurts. If I've been breathing shallowly and take a deep breath my whole chest cavity still hurts. Like taking my first deep breath when I

wake up still hurts! I still feel like I am being compressed between two blocks of cement or wearing an incredibly tight corset. I just saw Dr. Boachie for a check up last week. My x-rays look fine and my curves haven't budged even after I had a small fall on our basement steps. My feet flew out from underneath me and I landed on my left butt cheek. I stayed there for about 10 minutes scared to move. My husband was sleeping and my daughter was watching TV in the back room. I started to move and didn't feel any bad pain - I was sore on the butt but my invincible back hadn't moved. I kind of feel bionic at times. I told Dr. Boachie that I'm still terrible sore around the ribs, my compressed breathing and pain across my shoulder blades. He said it will take a long time to heal and feel "normal" again. He asked if there was any difference between the last 6 months and this appointment painwise. I said "not much" -

I have better energy but my soreness is still there - no bad spinal pain. I do take one oxycodone a day to just give me a little relief from the pain. My regular doctors says I have a "prescription" to exercise as much as possible. That is hard to do with a job and a 3 1/2 year old!Well, I'm back at work (as a legal secretary). We are doing major rennovations to our house (not my husband and me personally) - but hired contractors. We are expanding our kitchen, family room and bedroom with basement all underneath. Right now I have no kitchen. Anyway, I feel it is good for me to be back at work actually sitting still. At home I feel that I have to keep Jill (3 year old) occupied and that gets me depressed when I'm too sore to do anything with her. She is going to a wonderful day care program (school and camp incorporated) with lots of friends. I needed to go back to work not only for the money but for my sanity. My

days are better organized and I'm not spending money trying to find entertainment for Jill and myself.I had one setback. - I started taking more oxycodone 3 months ago. I went to my PCP and broke down in his office crying. I am depressed - I should have discussed this with him about 3 months after the surgery because I wasn't happy. I know everyone on the board encouraged me to do so - but I didn't. I told him that I just want to be happy again - he said it would come. He put me first on Cymbalta - but I felt sick with that - now I'm on Celexia and it is working. The doctor said it works slowly like moving one brick at a time - but I do feel a difference. Pain can be very draining - it is hard to do everything I have to do and I get depressed about it. This was an enormous surgery ( 10.5 hours) and I shouldn't feel guilty that I'm just not right yet. So the depression can last a while...I'm hoping that

in a couple of months at my 2 year mark I will see another improvement in my body. Best to all!Lorrie SnyderEllicott City, MDRevision 11/8/05

Choose the right car based on your needs. Check out Autos new Car Finder tool.

[Guest guest]

Lorrie,

Hi! It's good to hear from you. I'm sorry that you've been still

having some tough times, and I hope that things start improving for

you.

I had a question specifically for you since you had this surgery with

small kids. If you haven't been reading - I have MS in addition to

flatback, and had revision (2 stages, a 12hr posterior and a 3-4hr

anterior) almost 6 and 5 weeks ago. I have been in a rehab hospital

this whole time since relearning how to walk (started walking with

walker almost 3 weeks ago, can now do 50-60 feet before sitting

down), log roll in bed (started doing last week), and sitting up

(started doing last week). As of yesterday, I can also finally get

up from the bed, use my walker, and go sit on the toilet without

assistance. I am now working on standing balance and stamina. I am

going home this Saturday, which has me both scared and excited.

So here is my question - my kids are 2 and 3 1/2. My 2yr old is

still in diapers. How did you change your little one's diapers after

your revision? I can't stand for any length of time without major

support. And sitting on the couch, putting her on the floor and

bending down is obviously not a choice anymore. The only option that

I've come up with is to have her climb up and lay on the kitchen

table while I sit there and change her. Every other option that

people have come up with involves something I can't do - leaning,

twisting, or bending. What did you do with your daughter, and/or do

you have any other suggestions for me?

Thanks for any help, and it was good to hear from you again! I wish

you the best as you approach your 2-year mark!

>

> Hi Everyone!

>

> This is Lorrie!! Yes Cam, I am a lurker and still recovering from

> my surgery with Dr. Boachie that was on November 8, 2005. I'm

almost

> at the 2 year mark. I try to keep up with everyone's posts - just

[Guest guest]

Lorrie,

It was so good to see a post from you when I logged on this morning.

I sure have wondered how you were doing. Of course when I don't hear

from folks for awhile I imagine them completely healed and so well

functioning that they don't even give their spines a second

thought...but I do know that many are just too busy to post much.

Geez, back to work full time, rebuilding your home....how are you

going to hang out with us?!!

It sounds like you are well healed according to Dr.B...now if you can

just start feeling good. I think you are a brave girl to get with

your doctor and tell him about how you are feeling. If the meds alone

don't help please remember that some people find the best results

when they work with a therapist for a short time too. Sometimes it

takes a little work to find the therapist you " click " with....but I

found it so cathartic to have someone safely lead me through some

issues that I didn't even know I needed to " look at " .

I am sure Jill will thrive in the environment you have described.Kids

that are well loved do fine no matter where they are for various

parts of their day. There is nothing wrong with needing a break from

that 3 year old energy either. After we did this move, Matias didn't

have all his buddies around...and so he wanted my attention all the

time again. I told myself how great it was, after all...in no time he

won't want me around too much of the time...but still...it was like

living with a clingy little boy and at moments it drove me crazy!

Anyway, glad to hear from you. Hope Bill's back is better now too.

Take Care, Cam

[Guest guest]

Hi ,

You can find a number of alternative approaches to treating cancer at

http://www.webspawner.com/users/canceralternatives/index.html

Best regards,

Dudley Delany

dudley_delany

[Guest guest]

,

Have you ever done a colon cleanse?

Edwin

[Guest guest]

Welcome to the group, .

There are so many how's and why's concerning cancer, I believe your

research will last you the rest of your lifetime...which hopefully will

be very long, indeed.

ar

--

Arlyn Grant

arlynsg@...

[Guest guest]

Thanks for the welcome Arlyn, and your sentiments. I'm 54 at the moment and

determined to at the very least reach my 'three score & ten'! Thanks to LDN I've

found my optimism again.

Best wishes

From: Arlyn Grant

Welcome to the group, .

There are so many how's and why's concerning cancer, I believe your

research will last you the rest of your lifetime...which hopefully will be very

long, indeed.

ar

--

Arlyn Grant

arlynsg123mail (DOT) org

[Guest guest]

No Edwin I haven't had the pleasure so-far.

I'm keeping Max Gerson in reserve in case all else fails. It's a hard regime

made all the harder by the temptations of 21st century living.Having said that,

it's most probably 21st century living that's brought us all to this!

Best wishes

----- Original Message ----

From: Edwin Casimero

, Have you ever done a colon cleanse?

[Guest guest]

,

In my opinion, colon cleansing is the number 1 step everyone must take to regain

health. The number 1 step to cure all cancers, and any disease for that matter.

Please choose a colon cleanse of your liking and do the rest of the detox

protocols. Constipation and toxicity can be a cause of illnesses.

http://www.curemanual.com/detox-protocols/colon-cleanse

Western medicine is in denial of detox methods and detox science.

http://www.curemanual.com/detox-protocols

Check out this cancer cure protocol.

http://www.curemanual.com/diseases-and-tweaks/cancer

(lots of reading to do in the mind cures section but it is worth it.)

Good skill,

Edwin

Weston wrote: No Edwin I haven't had the pleasure so-far.

> I'm keeping Max Gerson in reserve in case all else fails. It's a hard regime

made all the harder by the temptations of 21st century

> living. Having said that, it's most probably 21st century living that's

brought us all to this!

> From: Edwin Casimero

> , Have you ever done a colon cleanse?

[Guest guest]

Dear ,

So glad you are on the other side and able to post. I think many of us have similar stories to yours with nursing care. For me, for every bad moment I had with care, there was also moments of great care and compassion. I had two surgeries at one hospital, and found they were very under staffed, and that was what was causing slow responces, not a nursing problem, just that my nurse had far too many patients to take care of, thus she was running like a mad women. For further surgery I needed it did make me decide to go to another hospital my doc had priviledges at, and the nursing care was much better there.

I have suggested in the past patients go to the ortho floor and meet the nursing staff and ask questions in advance, before you are in pain and maybe have no one in the room to advocate for you. Pain med's and getting them in a timely manner really affects you, and I've been exactly where you were, where turning over to get to the call button was impossible.

I'm sorry truly you had this bad experience, mine stayed with me and I remember it like it was yesterday, and it was six years ago. Hopefully you can make a lot of noise, fill out the hospitals survey, negative comments sure get responces, mine did. Call and let them know too, talk to the patient advocate. Write a letter. Also let your surgeon know, afterall this affects his business when nursing care is less than par. Also be sure and compliment those who helped you in any correspondance, a bit of honey with the vinegar.

Hopefully this was a blip in care there, and with some constructive critisisim you can help them improve their patient care and responce times, especially to pain meds.

[ ] Hi everyone!

Hi All!I about about 5 1/2 days post cervical fusion and for the very first time - feeling slightly better. The whole experience was worse than I ever expected. Dr. Glazer ended up doing a 3-level fusion from C4-C7. I arrived at Beth Israel last Friday morning at 11 as instructed for a 1:15 surgery time, but didn't end up getting in until 5:30! Typical I guess! It was a l-o-n-g stressful day but the hour finally arrived. I was brought to my room at 10PM where my family stayed with me for a couple of hours. I complained immediately of a "back of the neck" headache, similar to what I have been experiencing for years and just recently acknowledged as probably being due to my neck anyway. The "headache" never let up and really only progressed until Dr. Glazer himself removed the neck brace and I realized the pain was being brought up by the neck brace digging into the back of head which had felt pinned for hours and hours, just laying flat on my back. I found the very upper back and shoulder are was where most of my pain was and as would be expected, throat pain. I could not shake the "headache" and remember thinking "Wow, shouldn't a headache respond to narcotic painkillers?". I did have one horrible experience at the hospital. On my second night there (I was supposed to only be there overnight and released on Saturday, but stayed two nights!) I could sense that I was nearing my med time and looked at the clock and sure enough, I knew I was due at 11:30 and it was 11:35. So I "clicked" the nurse pager. No response. I waited a few minutes more. I became restless as I was now becoming otherwise physically unncomfortable as well. I felt like my tailbone was now digging into the bed and I was yet unable to move by myself. I clicked the pager again. Nothing. I began to feel vulnerable and very scared. I clicked again. No response whatsoever. I couldn't have screamed if I wanted, I could barely speak louder than a whisper. I slowly began to cry. I need pain management and I needed it NOW! Each minute dragged on and I paged the button again, for the final time, at 11:59. A response - "how can I help you". I tried to speak as loudly and as clearly as I could and said, "I NEED my pain medicine" which was promptly met with "I'll let your nurse know.". She showed up severak minutes later. Because I was having extreme difficulty getting the pills down, I requested that she get me an ice cream or fudgesicle, as with my daughter experiencing with me, we found that something creamy after my attempt at swallowing, worked quite well. She said, "Sure, but just swallow these first". So I did. And by then the tears were rolling down my face and she said, "Looks like we may have gone just a smidge over for your pain med, huh?". I wanted to slap her. I had had her the night before and thought she was fine immediately post-surgery, but her care on the next night was not acceptable. She helped me into a position whereby I was sitting practically straight up with my legs straight in front of me - comfortable for the moment. I requested the iced cream again to sooth my throat and the response was "Sure. Just let me take care of the guy next to you. Give me 5 minutes and I'll get one for you". Five hours, no ice cream. From her anyway. A young girl had come in a couple of hours later to take my vitals, and I asked her and she got me one. She helped me change my position again. This time about10 minutes before the next pain med was due, I paged the nurse. It was now about 3:50 AM, the pain was back and I was more than just uncomfortable as this old, fused spine was beside itself. Writing in pain and realizing that my arthritic knees were screaming from my legs being hyperextended and stiff for this many hours was not a good thing. The response this time, "I will let your nurse know". She was there within 5 minutes and said, "Oh, I planned on being here 5 minutes before you were due anyway after the last time!". I was now crying dure to my knee pain.~~~I apologize my Feisty friends, I'm exhausted now and will finish this email very soon. I can't stay awake another moment. D

[Guest guest]

Poor Val, I hope things are better now that you are home.

>

> Hi All!

> I about about 5 1/2 days post cervical fusion and for the very

> first time - feeling slightly better. The whole experience was

worse

> than I ever expected. Dr. Glazer ended up doing a 3-level fusion

from

> C4-C7. I arrived at Beth Israel last Friday morning at 11 as

> instructed for a 1:15 surgery time, but didn't end up getting in

> until 5:30! Typical I guess! It was a l-o-n-g stressful day but the

> hour finally arrived. I was brought to my room at 10PM where my

> family stayed with me for a couple of hours. I complained

immediately

> of a " back of the neck " headache, similar to what I have been

> experiencing for years and just recently acknowledged as probably

> being due to my neck anyway. The " headache " never let up and really

> only progressed until Dr. Glazer himself removed the neck brace and

I

> realized the pain was being brought up by the neck brace digging

into

> the back of head which had felt pinned for hours and hours, just

> laying flat on my back. I found the very upper back and shoulder

are

> was where most of my pain was and as would be expected, throat

pain.

> I could not shake the " headache " and remember thinking " Wow,

> shouldn't a headache respond to narcotic painkillers? " . I did have

> one horrible experience at the hospital. On my second night there

(I

> was supposed to only be there overnight and released on Saturday,

but

> stayed two nights!) I could sense that I was nearing my med time

and

> looked at the clock and sure enough, I knew I was due at 11:30 and

it

> was 11:35. So I " clicked " the nurse pager. No response. I waited a

> few minutes more. I became restless as I was now becoming otherwise

> physically unncomfortable as well. I felt like my tailbone was now

> digging into the bed and I was yet unable to move by myself. I

> clicked the pager again. Nothing. I began to feel vulnerable and

very

> scared. I clicked again. No response whatsoever. I couldn't have

> screamed if I wanted, I could barely speak louder than a whisper. I

> slowly began to cry. I need pain management and I needed it NOW!

Each

> minute dragged on and I paged the button again, for the final time,

> at 11:59. A response - " how can I help you " . I tried to speak as

> loudly and as clearly as I could and said, " I NEED my pain

medicine "

> which was promptly met with " I'll let your nurse know. " . She showed

> up severak minutes later. Because I was having extreme difficulty

> getting the pills down, I requested that she get me an ice cream or

> fudgesicle, as with my daughter experiencing with me, we found that

> something creamy after my attempt at swallowing, worked quite well.

> She said, " Sure, but just swallow these first " . So I did. And by

then

> the tears were rolling down my face and she said, " Looks like we

may

> have gone just a smidge over for your pain med, huh? " . I wanted to

> slap her. I had had her the night before and thought she was fine

> immediately post-surgery, but her care on the next night was not

> acceptable. She helped me into a position whereby I was sitting

> practically straight up with my legs straight in front of me -

> comfortable for the moment. I requested the iced cream again to

sooth

> my throat and the response was " Sure. Just let me take care of the

> guy next to you. Give me 5 minutes and I'll get one for you " . Five

> hours, no ice cream. From her anyway. A young girl had come in a

> couple of hours later to take my vitals, and I asked her and she

got

> me one. She helped me change my position again. This time about10

> minutes before the next pain med was due, I paged the nurse. It was

> now about 3:50 AM, the pain was back and I was more than just

> uncomfortable as this old, fused spine was beside itself. Writing

in

> pain and realizing that my arthritic knees were screaming from my

> legs being hyperextended and stiff for this many hours was not a

good

> thing. The response this time, " I will let your nurse know " . She

was

> there within 5 minutes and said, " Oh, I planned on being here 5

> minutes before you were due anyway after the last time! " . I was now

> crying dure to my knee pain.

> ~~~I apologize my Feisty friends, I'm exhausted now and will finish

> this email very soon. I can't stay awake another moment.

> D

>

[Guest guest]

Welcome, there are a lot of knowledgable people in this group, I've learned a lot. What are your concerns at this point? Maybe we can help.

Cathleen

From: ssandia <ssandiacr@...> Sent: Fri, September 17, 2010 7:59:50 PMSubject: ( ) Hi everyone!

I just discovered this group and I am happy to meet you all! My son is 3 and has been diagnosed with AS.

[Guest guest]

I hope you all had a very Merry Christmas!

My family and I have been going at break-neck speed the past few weeks,

traveling and spending time with family, doing holiday stuff. It's now time to

settle back and try to relax a little bit.

I am planning already for my New Year's resolutions to get some good detoxing in

and lose some weight that I've gained with all the eating we've been doing.

Anyone else have some New Year's resolutions for detoxing?

I'll be fasting for sure!

I've thought about you guys often, praying for breakthroughs in healing and

progress in the journey back to better health. I hope to hear some good things

from you all...

God bless you all,

Patty

[Guest guest]

Hi Peggy!

Was there a get together this year afterall?? If not, we should plan something

for next year so that we can all spend some time together - but we have to make

sure Kathy White can come because she definitely was the funniest one!! Remember

that last night when she said between my RI accent and all you Southerners she

had no idea what we had even said the whole weekend!! Oh goodness, that still

gives me the serious giggles everytime I think about it!!

Sorry to hear about your divorce, Peggy. It is a horrible experience however, my

attitude is that if we can make it through revision surgeries, we can do

anything! We are stronger than we ever give ourselves credit for! Happiness is

the key - I wish you lots of it!

D.

>

> Hey gal with the RI accent! That still makes me laugh! LOL I need to spend

a week with you to see what I sound like when I put the northern/southern with

it!!!

>

> I will be going thru a divorce as well. I left hubby and have no intentions

to reconcile. I'm selling my collection of Fenton Art Glass to get an attorney.

I am definitely happier being on my own.

>

> I'm glad you are doing well. My revision was 4 years ago. Our retreat was 2

years ago! I miss not being together this year but there's no way I could have

afforded it.

>

> Now that you say it, I'm also more comfortable leaning forward when I sit. My

sacrum doesn't hurt but I almost always lean forward on any surface that I sit

on! I never really thought about it before.

>

> Take care Val!

>

> Peggy

> Sent from my Verizon Wireless BlackBerry

>

> [ ] Hi everyone!

>

> Hi everyone!

>

> I have not posted in a very long time, but most of you know me. I have decided

to stop by for a " visit " and give an update on my current status. As most of you

know, I had a 3-stage revision last year - March, April and May of 2010. A year

ago today, I was brought to rehabilitation whereby my recovery began. A whole

year ago!!

>

> I recently saw Dr. Glazer (whom I ADORE!) for my one year follow-up and all is

good!

>

> This is where things stand for me:

>

> I am now fused from C4-7 and T3 to the sacrum. I am standing straight. I can

walk for long distances with no significant back pain or discomfort. Sitting can

be more problematic, depending on the chair. I have yet to find a chair that I

find comfortable as I feel better sitting on the backs of my thighs than I do

actually sitting on my butt! So, slightly leaning forward I guess? I think the

real issue is that if I sit leaning back at all, my tailbone hurts. Hence, I

cannot sit on a sofa for any length of time or recline in a recliner or sit in a

soft chair. It doesn't' hurt my back, but it does hurt my tailbone and my lumbar

region will get achy. So I can't recline in bed at all either. So basically,

sitting straight up or laying flat is what works best for me. I " mourn " the

notion of " snuggling " up on the couch to say, read a book or magazine. Maybe one

day?

>

> I returned to work part-time in November, 6 months after my 3rd surgery last

May and returned full-time in 2 1/2 months later in January of this year. I have

a 82 mile round trip commute each day, 45 min each way. My car is very

comfortable and the ride is seldom an issue. I do still get tired easily but my

strength improves all the time. I lost 35 lbs with my surgeries and have had no

difficulty keeping it off even though I do no exercise other than simple

walking. I think just being able to move in the slightest has helped me, as many

of you that knew me before my surgeries knew that I was quite debilitated by my

Flatback. I literally got to the point where I could no longer function at all.

>

> My surgeries were a traumatic, yet humbling experience and life has changed

significantly for me during the past year. There are a lot of changes - my

youngest graduated from High School three weeks after I got home from

rehabilitation and then I sent him off to college 2 1/2 months later, I started

working full-time for the first time in more than 23 years, I am currently in

the process of a divorce after being married for 29 years and I am turning 50

next month!

>

> Some may wonder if I have anything to be happy about? The answer is YES!! Dr.

Glazer gave me back what I had lost a very long time ago. I was in such pain for

so, so long and sadly, I didn't even realize it! I just took on more and more

pain. I feel so badly for that woman as it is as if she was someone different

and not actually me!?! It definitely was a horrifying experience to endure but

one that I would do again to gain what I now have. And that is a relatively

pain-free existence. I hope and pray that we all have enduring success with

these surgeries.

>

> My only regret is that I waited so long. I put everything, and I mean

everything, on hold trying to wait for the " right " time to do it. As many of you

know, I hemmed and hawed about it for 6 years before doing it and making that

decision was the best thing I ever did. Yes, I have some residual issues - I

have a recurring SI issue on my right hip, my knees are in rough shape despite

having bilateral arthroscopy 2 years ago, one leg is shorter than the other and

I have some neuropathy in my right leg and foot that has not improved

unfortunately. But overall?? I am great! I am hopeful for a great future. I am

relatively pain free. I am thrilled that I found Dr. Glazer and received

fabulous care and support from this man whom I now consider a friend and more

than anything, I GRATEFUL! So very, very grateful!!

>

> This group is filled with so many supportive, knowledgeable and wonderful

people. To ALL that have supported me and helped me along the way - although I

may not keep in touch, please know that you are all in my heart and I think of

you often! With love and appreciation and I pray that all of you are feeling

well!! God bless each and every one of you!!

>

>

> Fondly,

> D (RI)

>