Re: Debbie from Tampa - 8 month report.....

[Guest guest]

Debbie my surgery buddy,I was thinking about you today sorry to hear

about another surgery I think I'll have to let you do this one

without me though I may be in for some C-spine work in the future

hopefully not for a while,it's funny our Docs being in the same

practice and mine doesn't use the bone growth stimulator.I'm jealous

and amazed you were able to go to the fair good for you I can barely

walk around the block!!Sounds like you're doing well other than the

screw problem!Write me some time at my private email and let me know

how you're doing etc.Good luck with your surgery!!!! Donna

>

> Hi guys! I'm sorry I have been absent lately - getting back to

> normal with my new back after my revision July 9th keeps me busy!

I

> went to see Dr. Small yesterday and I am showing excellent bone

> growth and fusion but the X ray showed my right iliac crest screws

> is fractured. That is really the only thing that has given me

> trouble lately. He got me into a CT scan that day (yesterday) and

> wants to see me in 2 weeks (March 25) to talk about scheduling the

> screw removal in my iliac crest. The other side is also bothering

> me - stingy and achy and in certain positions it feels like it's

> hitting a nerve.

> Other than that - I am really doing well. I feel like a new

person

> and am off all pain meds except muscle relaxers when I ache from

> standing a lot. I went to the State fair and walked ALL DAY about

3

> weeks ago and got home and the only thing that hurt me was my legs

> and feet!! Boy that is a huge change. Before I couldn't walk 6

> minutes without having to rest and now it's just completely

> different. My hips still feel so stiff and achy at times and the

> muscles in my shoulder blades ache at times.

> Question.....How long is the screw removal surgery usually??

> He said I will be in around 2 days....I thought it was

outpatient.

> So, someone who has had this done - tell me what it's really like

> and all the ends and out. I know it's not nearly as bad as the

> revision surgery, but I like to be prepared and only someone who

has

> had it done will tell the truth. They will also remove my battery

> from the bone growh stimultor that they put in a year ago in

another

> surgery.(that's just a small incision and no big deal I know)

> Is this a surgery that you have to give blood? I lost 8 units on

> that last one. I just want to be prepared before I talk to him

> about it. What all is involved in the Iliac screw removal?

> I know 8 months out is a little early but he said if I am looking

> good from the CT scan in that particular area - then I can go

ahead

> and get them out - they are pretty painful at times.

>

> Hey, Donna....How are you? You were in the same hospital as me at

> the same time and we didn't get to meet....you wouldn't be

happening

> to have a screw removal surgery with me at the same time again??

ha

> ha -wouldn't that be a hoot - we would definently have to meet

this

> time!! Hope you are doing well. Hang in there - there are still

> good days and bad days...

>

> , I'm sorry you MS has been giving you fits and I'm glad

your

> latest surgery to put the catheter in went well. How are your

iliac

> crest screws?

> It's great reading up on all the updates from all of you!

> Debbie (Tampa)

>

[Guest guest]

Donna, Just to clarify.... Dr. Small didn't put my bone growth

stimulator in me. The last neurosurgeon in put it in during

my surgery July 2006 (the second surgery after Sept. 05 to try and

get two disks to fuse above my fusion) I had those two surgeries

back to back because I wouldn't fuse - that's when I found Dr. Small

who got to the root of my problem and diagnosed me with flatback.

The reason those disks wouldn't fuse was because of the position of

leaning forward put too much pressure on that area. Dr. Small got

be upright again and now he is going to take that bone growth stim

out during the screw removal surgery because it's only good for a

year and I don't need it in there. He wasn't too concerned about me

fusing this time because getting me upright would help a lot with

the process. He was right. Now, I did have the external bone

growth stimulator requested by Dr. Small and I used it religiously

for 6 months.

I pray that you begin to feel better as the days go on. Keep your

chin up - you may just need a little while longer to heal.

Debbie (Tampa)

> >

> > Hi guys! I'm sorry I have been absent lately - getting back to

> > normal with my new back after my revision July 9th keeps me

busy!

> I

> > went to see Dr. Small yesterday and I am showing excellent bone

> > growth and fusion but the X ray showed my right iliac crest

screws

> > is fractured. That is really the only thing that has given me

> > trouble lately. He got me into a CT scan that day (yesterday)

and

> > wants to see me in 2 weeks (March 25) to talk about scheduling

the

> > screw removal in my iliac crest. The other side is also

bothering

> > me - stingy and achy and in certain positions it feels like it's

> > hitting a nerve.

> > Other than that - I am really doing well. I feel like a new

> person

> > and am off all pain meds except muscle relaxers when I ache from

> > standing a lot. I went to the State fair and walked ALL DAY

about

> 3

> > weeks ago and got home and the only thing that hurt me was my

legs

> > and feet!! Boy that is a huge change. Before I couldn't walk 6

> > minutes without having to rest and now it's just completely

> > different. My hips still feel so stiff and achy at times and

the

> > muscles in my shoulder blades ache at times.

> > Question.....How long is the screw removal surgery usually??

> > He said I will be in around 2 days....I thought it was

> outpatient.

> > So, someone who has had this done - tell me what it's really

like

> > and all the ends and out. I know it's not nearly as bad as the

> > revision surgery, but I like to be prepared and only someone who

> has

> > had it done will tell the truth. They will also remove my

battery

> > from the bone growh stimultor that they put in a year ago in

> another

> > surgery.(that's just a small incision and no big deal I know)

> > Is this a surgery that you have to give blood? I lost 8 units

on

> > that last one. I just want to be prepared before I talk to him

> > about it. What all is involved in the Iliac screw removal?

> > I know 8 months out is a little early but he said if I am

looking

> > good from the CT scan in that particular area - then I can go

> ahead

> > and get them out - they are pretty painful at times.

> >

> > Hey, Donna....How are you? You were in the same hospital as me

at

> > the same time and we didn't get to meet....you wouldn't be

> happening

> > to have a screw removal surgery with me at the same time again??

> ha

> > ha -wouldn't that be a hoot - we would definently have to meet

> this

> > time!! Hope you are doing well. Hang in there - there are

still

> > good days and bad days...

> >

> > , I'm sorry you MS has been giving you fits and I'm glad

> your

> > latest surgery to put the catheter in went well. How are your

> iliac

> > crest screws?

> > It's great reading up on all the updates from all of you!

> > Debbie (Tampa)

> >

>

[Guest guest]

Debbie,

Good girl growing all that bone! It's nice to hear that it is your

busy post revision life keeping you from stopping by more often.

Congrats on the long day on your feet at the fair. It is wonderful to

have those moments where you realize that you are present for your

family in activites that were just not possible before. I am sure it

makes the last few difficult years seem worth the pain and time in

the hospital.

I know others will chime in on the screw removal stuff...havent had

that particular problem. I don't think I am aware of anyone having it

as a day surgery, but I don't think they are likely to have

you " locked up " in the hospital too long. My surgeon said that it

they ever do need to come out, they both have to come out at the same

time.

The only " unusual " , or " one of a kind " , illiac screw removal story I

recall was a patient of DrBridwell's that had hers out at exactly one

year post op. He apparently replaced them with some kind of screw or

bolt, they were not attached to anything, but there just to keep the

space open in case she needed to have them replaced in the event of

non fusion. That is a hazy recollection, but since you are on the

front side of a year I thought I would mention it. She was perturbed

that she still had something in there, but they too were also

eventually removed. Perhaps he had reason to fear she was not fused

all the way, I don't know.

I haven't heard of an illiac screw fracturing before. Did the doc say

what causes something like that, or how long ago he thinks that

happened? I take it he thinks this is the source of your pain?

Well, let us know what you find out about your procedure and be sure

to let us know your dates so we can get you on the calendar.

Keep up the good work!

Cam

[Guest guest]

I need to get hold of my Xrays so I can post them. The screw is on

the right side and right at the Sacriliac joint it's like it broke

off at the top where that meets. He said he really isn't shocked

because there is so much pressure in that area when I walk and there

is so much movement there. He asked me again " how long were you in

that leg cuff " ? and I said 3 months and he said " man, we did what

we could to prevent that " . It has happened since first of Jan.

because my last X rays didn't show it. Maybe I am not going as slow

as I should. It's hard because when I feel good, I run after my 3

boys everywhere and try and lead a normal life. I have been trying

to walk and pretty fast walk in the evenings. Maybe I have done too

much too soon. I'm a pretty impulsive person and as long as you

keep me in that huge hard plastic chest to knee brace I'm good but

when I " m allowed to take it off and don't feel as limited

(obviously) and tend to do more. I am cleaning the house, running

errands, going to Cub scouts, basketball and soccer practices and

games and walking the mall and going to fairs walking around (NO

RIDES DUH!!) I guess all that walking is putting pressure and making

that area move before it's time and it put too much stress on that

screw holding things together.

When I lay in certain positions or sit in certain positions I have a

sharp pain like something is sitting on a nerve and it goes down my

hip and leg.

I'll find out more on the 25th.

Thanks for the encouragment - this too shall pass right??

Does anyone know how long Carol's surgery was? She said it was not

a long one but they didn't get her to her room until 3:30 after a

7am surgery. I was just curious...one hour two? Glad it's not 12

like this last one!!

Debbie

>

> Debbie,

>

> Good girl growing all that bone! It's nice to hear that it is your

> busy post revision life keeping you from stopping by more often.

>

> Congrats on the long day on your feet at the fair. It is wonderful

to

> have those moments where you realize that you are present for your

> family in activites that were just not possible before. I am sure

it

> makes the last few difficult years seem worth the pain and time in

> the hospital.

>

> I know others will chime in on the screw removal stuff...havent

had

> that particular problem. I don't think I am aware of anyone having

it

> as a day surgery, but I don't think they are likely to have

> you " locked up " in the hospital too long. My surgeon said that it

> they ever do need to come out, they both have to come out at the

same

> time.

>

> The only " unusual " , or " one of a kind " , illiac screw removal story

I

> recall was a patient of DrBridwell's that had hers out at exactly

one

> year post op. He apparently replaced them with some kind of screw

or

> bolt, they were not attached to anything, but there just to keep

the

> space open in case she needed to have them replaced in the event

of

> non fusion. That is a hazy recollection, but since you are on the

> front side of a year I thought I would mention it. She was

perturbed

> that she still had something in there, but they too were also

> eventually removed. Perhaps he had reason to fear she was not

fused

> all the way, I don't know.

>

> I haven't heard of an illiac screw fracturing before. Did the doc

say

> what causes something like that, or how long ago he thinks that

> happened? I take it he thinks this is the source of your pain?

>

> Well, let us know what you find out about your procedure and be

sure

> to let us know your dates so we can get you on the calendar.

>

> Keep up the good work!

> Cam

>

[Guest guest]

Debbie,thanks for clearing that up.I was talking to my mom about you

this morning,I guess she had a long discussion with your mom when we

had our surgeries,when I told her you were having another surgery

she said " oh that poor thing she's already had six " is that correct?

I'm seeing Dr.Castellvi next week for my 8 month check up hopefully

my news will be better than yours and I'm fusing well despite not

using the stimulator,let me know when you are having your surgery

okay?I keep hoping the day will come when I can honestly say I'm

glad I had these surgeries,I thought as soon as my 12wks.off work

was up I'd be ready to return but boy was I sadly mistaken!!

I even took a position as a supervisor before surgery in hopes that

I would be more likely to be able to tolerate that but at this point

I am not near the point of recovery to be able to even handle

that,plus my employer has made it clear that I cannot return unless

my Dr. will release me to full duty status and he says I will never

be able to return to full duty again.Okay I'm gonna stop now so I

don't discourage anyone else which is why I haven't posted lately

and keep reminding myself to hang in there which is exactly what I

would be telling me if I were one of my patients,sure is weird being

on this side of the spectrum!Good luck to all.............DONNA -

-- In , " tcckidz " <tcckidz@...>

wrote:

>

> Donna, Just to clarify.... Dr. Small didn't put my bone growth

> stimulator in me. The last neurosurgeon in put it in

during

> my surgery July 2006 (the second surgery after Sept. 05 to try and

> get two disks to fuse above my fusion) I had those two surgeries

> back to back because I wouldn't fuse - that's when I found Dr.

Small

> who got to the root of my problem and diagnosed me with flatback.

> The reason those disks wouldn't fuse was because of the position

of

> leaning forward put too much pressure on that area. Dr. Small got

> be upright again and now he is going to take that bone growth stim

> out during the screw removal surgery because it's only good for a

> year and I don't need it in there. He wasn't too concerned about

me

> fusing this time because getting me upright would help a lot with

> the process. He was right. Now, I did have the external bone

> growth stimulator requested by Dr. Small and I used it religiously

> for 6 months.

> I pray that you begin to feel better as the days go on. Keep your

> chin up - you may just need a little while longer to heal.

> Debbie (Tampa)

>

>

>

> > >

> > > Hi guys! I'm sorry I have been absent lately - getting back

to

> > > normal with my new back after my revision July 9th keeps me

> busy!

> > I

> > > went to see Dr. Small yesterday and I am showing excellent

bone

> > > growth and fusion but the X ray showed my right iliac crest

> screws

> > > is fractured. That is really the only thing that has given me

> > > trouble lately. He got me into a CT scan that day (yesterday)

> and

> > > wants to see me in 2 weeks (March 25) to talk about scheduling

> the

> > > screw removal in my iliac crest. The other side is also

> bothering

> > > me - stingy and achy and in certain positions it feels like

it's

> > > hitting a nerve.

> > > Other than that - I am really doing well. I feel like a new

> > person

> > > and am off all pain meds except muscle relaxers when I ache

from

> > > standing a lot. I went to the State fair and walked ALL DAY

> about

> > 3

> > > weeks ago and got home and the only thing that hurt me was my

> legs

> > > and feet!! Boy that is a huge change. Before I couldn't walk

6

> > > minutes without having to rest and now it's just completely

> > > different. My hips still feel so stiff and achy at times and

> the

> > > muscles in my shoulder blades ache at times.

> > > Question.....How long is the screw removal surgery usually??

> > > He said I will be in around 2 days....I thought it was

> > outpatient.

> > > So, someone who has had this done - tell me what it's really

> like

> > > and all the ends and out. I know it's not nearly as bad as

the

> > > revision surgery, but I like to be prepared and only someone

who

> > has

> > > had it done will tell the truth. They will also remove my

> battery

> > > from the bone growh stimultor that they put in a year ago in

> > another

> > > surgery.(that's just a small incision and no big deal I know)

> > > Is this a surgery that you have to give blood? I lost 8 units

> on

> > > that last one. I just want to be prepared before I talk to

him

> > > about it. What all is involved in the Iliac screw removal?

> > > I know 8 months out is a little early but he said if I am

> looking

> > > good from the CT scan in that particular area - then I can go

> > ahead

> > > and get them out - they are pretty painful at times.

> > >

> > > Hey, Donna....How are you? You were in the same hospital as

me

> at

> > > the same time and we didn't get to meet....you wouldn't be

> > happening

> > > to have a screw removal surgery with me at the same time

again??

> > ha

> > > ha -wouldn't that be a hoot - we would definently have to meet

> > this

> > > time!! Hope you are doing well. Hang in there - there are

> still

> > > good days and bad days...

> > >

> > > , I'm sorry you MS has been giving you fits and I'm

glad

> > your

> > > latest surgery to put the catheter in went well. How are your

> > iliac

> > > crest screws?

> > > It's great reading up on all the updates from all of you!

> > > Debbie (Tampa)

> > >

> >

>

[Guest guest]

Donna, My revision surgery was #10 for me. (I am counting the

insertion of my spinal cord stimulator and a battery change and a

broken lead they had to fix too....whatever - cut 10 times on my

back in different lengths from one hour to 12 hours - and I am only

37 years old! BUT, this last one has been the ticket for me and I

really believe I am better than I have been in 16 years. ( I never

had scoliosis by the way - mine was from a injury which resulted in

a 6 level fusion that gave me flatback).

Donna, I am so sorry you are doing well. First of all, I can't

imagine returning to work at 12 weeks - or even 6 months! HOnestly,

this is what I tell people.... This surgery was the lONGEST recovery

I have ever had and could every imagine - but it was like BAM over

night (I know it wasn't overnight but it seemed like it) all of a

sudden I got my energy back and started feeling good and began to

move more. I was in a hospital bed in my living room until

Christmas (surgery July 9). I was in that full body brace with the

leg cuff for 6 1/2 months. I would say only since the 2nd week in

January - I really started to feel more normal again. My body is

different in so many ways - GOOD because I can stand and walk and

move more than when I was face down toward the sidewalk. BAD -

because I can't reach my legs to shave, put my shoes on anymore

hardly. Very difficult time wiping from the back...(TMI sorry) Bend

down and get anything off the floor when seated - because my arch is

a permanent arch now and doesn't straighten out when I bend forward

to help me reach things. But, I will take all of this any day than

how I was. My goal was to be better - I knew I would never be

perfect - but better.

I went to the beach today with family (my husband had off work so we

took the boys) and laying on my back made me hurt and I could hardly

get up with all my boys helping me up. I just went and laid in the

sand (first time since the week before my surgery in July). It's

the little things like that can get you discouraged - but you MUST

keep your spirits up and you can't get downhearted. Focus on all

the things you CAN do now. And, give it more time!! Everybody is

different. I was told it takes a good 2 years...so until then go

slow and take it easy and go one day at a time.

I'll be praying for you Donna,

hang in there - your day is comin'

I'll let you know how things go with appt. on the 25th.

Dr. Castellvi poked his head in to see me when I was in the

hospital. He seems really nice. I " m glad our moms got to talk.

Debbie (Tampa)

> > > >

> > > > Hi guys! I'm sorry I have been absent lately - getting back

> to

> > > > normal with my new back after my revision July 9th keeps me

> > busy!

> > > I

> > > > went to see Dr. Small yesterday and I am showing excellent

> bone

> > > > growth and fusion but the X ray showed my right iliac crest

> > screws

> > > > is fractured. That is really the only thing that has given

me

> > > > trouble lately. He got me into a CT scan that day

(yesterday)

> > and

> > > > wants to see me in 2 weeks (March 25) to talk about

scheduling

> > the

> > > > screw removal in my iliac crest. The other side is also

> > bothering

> > > > me - stingy and achy and in certain positions it feels like

> it's

> > > > hitting a nerve.

> > > > Other than that - I am really doing well. I feel like a new

> > > person

> > > > and am off all pain meds except muscle relaxers when I ache

> from

> > > > standing a lot. I went to the State fair and walked ALL DAY

> > about

> > > 3

> > > > weeks ago and got home and the only thing that hurt me was

my

> > legs

> > > > and feet!! Boy that is a huge change. Before I couldn't

walk

> 6

> > > > minutes without having to rest and now it's just completely

> > > > different. My hips still feel so stiff and achy at times

and

> > the

> > > > muscles in my shoulder blades ache at times.

> > > > Question.....How long is the screw removal surgery usually??

> > > > He said I will be in around 2 days....I thought it was

> > > outpatient.

> > > > So, someone who has had this done - tell me what it's really

> > like

> > > > and all the ends and out. I know it's not nearly as bad as

> the

> > > > revision surgery, but I like to be prepared and only someone

> who

> > > has

> > > > had it done will tell the truth. They will also remove my

> > battery

> > > > from the bone growh stimultor that they put in a year ago in

> > > another

> > > > surgery.(that's just a small incision and no big deal I know)

> > > > Is this a surgery that you have to give blood? I lost 8

units

> > on

> > > > that last one. I just want to be prepared before I talk to

> him

> > > > about it. What all is involved in the Iliac screw removal?

> > > > I know 8 months out is a little early but he said if I am

> > looking

> > > > good from the CT scan in that particular area - then I can

go

> > > ahead

> > > > and get them out - they are pretty painful at times.

> > > >

> > > > Hey, Donna....How are you? You were in the same hospital as

> me

> > at

> > > > the same time and we didn't get to meet....you wouldn't be

> > > happening

> > > > to have a screw removal surgery with me at the same time

> again??

> > > ha

> > > > ha -wouldn't that be a hoot - we would definently have to

meet

> > > this

> > > > time!! Hope you are doing well. Hang in there - there are

> > still

> > > > good days and bad days...

> > > >

> > > > , I'm sorry you MS has been giving you fits and I'm

> glad

> > > your

> > > > latest surgery to put the catheter in went well. How are

your

> > > iliac

> > > > crest screws?

> > > > It's great reading up on all the updates from all of you!

> > > > Debbie (Tampa)

> > > >

> > >

> >

>

[Guest guest]

Debbie,

You said..... " BAD - because I can't reach my legs to shave, put my

shoes on anymore hardly. Very difficult time wiping from the back...

(TMI sorry) Bend down and get anything off the floor when seated -

because my arch is a permanent arch now and doesn't straighten out

when I bend forward to help me reach things. But, I will take all of

this any day than how I was. My goal was to be better - I knew I

would never be perfect - but better. "

I soooo remember feeling that way a 8 months and I thought I would

never get any better...and I know now that, with time and effort,

those limitations signifigantly improved. You just have to wait until

sometime after you are healed and have a nice solid fusion. Then your

doctor will probably permit you to start really working on those very

tight muscles and tendons that have become so short over the course

of all your slow deterioration from flatback. I know that many of us

found that the shaving,shoes and getting stuff low gets much easier

in year 2 and 3!

I think your attitude that you ae not expecting " perfect " is an

excellent one. You won't be dissappoointed. I found that unlike when

I was a teen recovering (when it all came back to me on it's own), I

have had to put some purposeful effort into regaining function this

time. You will get there too.

Take Care, Cam

[Guest guest]

Debbie,

Cam is right again, I actually think nothing of getting something off

the floor now, or putting on socks and shoes. It can be done, be

patient with yourself.

>

> Debbie,

>

> You said..... " BAD - because I can't reach my legs to shave, put my

> shoes on anymore hardly. Very difficult time wiping from the back...

> (TMI sorry) Bend down and get anything off the floor when seated -

> because my arch is a permanent arch now and doesn't straighten out

> when I bend forward to help me reach things. But, I will take all

of

> this any day than how I was. My goal was to be better - I knew I

> would never be perfect - but better. "

>

> I soooo remember feeling that way a 8 months and I thought I would

> never get any better...and I know now that, with time and effort,

> those limitations signifigantly improved. You just have to wait

until

> sometime after you are healed and have a nice solid fusion. Then

your

> doctor will probably permit you to start really working on those

very

> tight muscles and tendons that have become so short over the course

> of all your slow deterioration from flatback. I know that many of

us

> found that the shaving,shoes and getting stuff low gets much easier

> in year 2 and 3!

>

> I think your attitude that you ae not expecting " perfect " is an

> excellent one. You won't be dissappoointed. I found that unlike

when

> I was a teen recovering (when it all came back to me on it's own),

I

> have had to put some purposeful effort into regaining function this

> time. You will get there too.

>

> Take Care, Cam

>