Re: Spinal Revision NOT Like Any Other Surgery

[Guest guest]

Diane, I can remember the hell you were in and we shared so many like stories of being bent over. At the time of your surgery I couldn't imagine anyone willing to have such a radical surgery. Then I lost you for over a year and prayed you made it thru. When I finally heard how much better you are, I told my husband that maybe I should think of finding a doctor that would do the surgery on me. He was against it, but now that a couple more years have gone by and he sees me getting worse and more bent over, he has reconsidered. A couple days ago, he mentioned how he stood watching me sleep (when I finally slept in our bed one night) and I was curled up in the fetal position. Now he said, what ever it takes, he is behind me and will do what ever he needs to do to get me help. So now we are talking about maybe finding a cheap apartment in Amarillo if Dr. LaGrone takes me. Unlike you, I have had only one surgery on my back, so maybe that will be a plus.

I can't thank you enough for suggesting I join this group and giving me some hope, which I haven't had in a very long time.

Pat E.

From: Diane B.

I just read 's post and I wanted to add my opinion. is so right, this surgery is not like ANY other surgeries. I have had 13 major surgeries in my life. Besides a Tonsilectomy & Appendectomy in my childhood, I have had 7 other back surgeries, Open Heart surgery, and Abdominal surgery, NONE prepared me for the Spinal Revision. I am finding it hard putting my experience into words. There is so much more to it than just the actual operation. I had no clue to what walking around bent in half for 5 yrs & then becoming straight in one day would do to my body or my psyche. I guess I should have thought about this, but I was so afraid of having yet another surgery on my back, plus worried it wouldn't help. The last 4 surgeries I had on my back, were no help at all. All I know is I never thought of these things before. I really had to learn to walk all over again. My legs hurt me so much after the surgery. If the back of my knees touched the bed I would get like electric shocks going through me. I can only think it was from my knees being bent for 5 yrs. The muscles, tendons & ligaments in my legs really reacted, they had to stretch all out again & this took a long time. This surgery is a hugh adjustment mentally, emotionally, and physically. For up to 2 yrs after the surgery I noticed changes. For the 1st yr & a half I felt like I was walking like a ballerina, not on the balls of my feet but almost like tip toening. My stomach stuck out alot. I also noticed how gravity had affected my breasts...........they went way south. Being bent in half your breats just hang down & it was not until I was straight again could I see what age had done. Now if I had not been bent over I would have noticed it gradually like most women. It was sure a big shock.I think there are like milestones after this surgery. Many times after I had thought I am finally back, I would notice yet another improvement. I am posting this so hopefully all the people who have yet to have the Revision will be more prepared than I was.Diane B

..

[Guest guest]

Dearest Pat, I am so glad you are considering having this surgery.

I am also very glad your hubby is being so supportive. You know how

bad off I was when I decided to have the Revision. I knew that

without it I would have been be in a wheelchair for the rest of my

life.

Before the surgery my life had become confined to the walls of my

house. Going anywhere was not even an option anymore. I know I was

like absent for a yr after, but that wouldn't have happened just from

the surgery. You know that was from being cold turkeyed off alot of

medication & having seizures cuz of it. The seizures totally wiped

out my memory. I even forgot I had AA & thats a hard thing to

forget! Noone can tell you whether to have the Revision or not. I

was 58 when I had it, but as I've told you I thank God everyday I

went through with it. I am happy you joined the group. Everyone

here understands exactely what people with Flatback are going

through. There are so many of us now that have had the Revision &

the knowledge we gain from each other is invaluable.

I am praying hard that Dr LaGarrone will operate. I truly don't

think you'll ever regret it. Of course there are risks, but life

with Flatback is too hard to contemplate if there is a chance surgery

will help. Please keep me posted.

Love,

Diane

>

> Diane, I can remember the hell you were in and we shared so many

like stories of being bent over. At the time of your surgery I

couldn't imagine anyone willing to have such a radical surgery. Then

I lost you for over a year and prayed you made it thru. When I

finally heard how much better you are, I told my husband that maybe I

should think of finding a doctor that would do the surgery on me. He

was against it, but now that a couple more years have gone by and he

sees me getting worse and more bent over, he has reconsidered. A

couple days ago, he mentioned how he stood watching me sleep (when I

finally slept in our bed one night) and I was curled up in the fetal

position. Now he said, what ever it takes, he is behind me and will

do what ever he needs to do to get me help. So now we are talking

about maybe finding a cheap apartment in Amarillo if Dr. LaGrone

takes me. Unlike you, I have had only one surgery on my back, so

maybe that will be a plus.

> I can't thank you enough for suggesting I join this group and

giving me some hope, which I haven't had in a very long time.

> Pat E.

>

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

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>

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

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>

> From: Diane B.

>

>

> I just read 's post and I wanted to add my opinion. is

so

> right, this surgery is not like ANY other surgeries. I have had

13

> major surgeries in my life. Besides a Tonsilectomy & Appendectomy

in

> my childhood, I have had 7 other back surgeries, Open Heart

surgery,

> and Abdominal surgery, NONE prepared me for the Spinal Revision.

I

> am finding it hard putting my experience into words. There is so

> much more to it than just the actual operation. I had no clue to

> what walking around bent in half for 5 yrs & then becoming

straight

> in one day would do to my body or my psyche. I guess I should

have

> thought about this, but I was so afraid of having yet another

> surgery on my back, plus worried it wouldn't help. The last 4

> surgeries I had on my back, were no help at all. All I know is I

> never thought of these things before. I really had to learn to

walk

> all over again. My legs hurt me so much after the surgery. If the

> back of my knees touched the bed I would get like electric shocks

> going through me. I can only think it was from my knees being

bent

> for 5 yrs. The muscles, tendons & ligaments in my legs really

> reacted, they had to stretch all out again & this took a long

time.

> This surgery is a hugh adjustment mentally, emotionally, and

> physically. For up to 2 yrs after the surgery I noticed changes.

> For the 1st yr & a half I felt like I was walking like a

ballerina,

> not on the balls of my feet but almost like tip toening. My

stomach

> stuck out alot. I also noticed how gravity had affected my

> breasts...........they went way south. Being bent in half your

> breats just hang down & it was not until I was straight again

could I

> see what age had done. Now if I had not been bent over I would

have

> noticed it gradually like most women. It was sure a big shock.

> I think there are like milestones after this surgery. Many times

> after I had thought I am finally back, I would notice yet another

> improvement. I am posting this so hopefully all the people who

have

> yet to have the Revision will be more prepared than I was.

> Diane B

>

> .

>

[Guest guest]

DianeB,

Your experience of continued changes and improvements is one that so

many of us have found to be true. I have my 3rd year anniversary in a

few weeks and I still feel that every so often I realize I am still

getting a little more stretch out of my hamstrings...which have been

my biggest challenge post revision. I also think you are right that

the mental part of getting this new body takes awhile to adjust to

and then for it to feel like " home " ...natural.

The expereinces of everyone on this road together is what keeps me

interested in the subject. I like learning that there are new

challenges, surprises and feelings about this fused up body I have.

It helps to know that others have similar experiences and that helps

validate that I am not " malingering " by continuing to refuse to do

certain things that I know will compromise my physical self. For

instance, I will not vacuum. I know it ticks my husband off....but I

always feel it in the ligaments down low in the spine pelvis

connection and I know its asking my already challenged body to do

more than it should. The dust kitties are for him or the cleaning

lady. I refuse to get my panties in a twist over that kind of stuff

anymore.

You are so right to want to help those facing revison to understand

how long the timeline is recovering from this surgery...and maybe you

have captured well the essence that we think we are just going to

recover from the surgery, but in reality we are recovering from years

of changes our bodies had to undergo to stay as mobile and upright as

possible. And then there is the mental part of recovering from

realizing that what you went through as a teen, which was traumatic

enough, has reared its head again with even more dramatic

consequences.

The surgeon prepares you for the surgery....but that is only a part

of recovery. That is why I am always so ambivelent answering people

questions about how long until they are " recovered " . I hate for

people to be too scared to consider having the surgery but I don't

want people to think its a 3-4 month timeline for recovery either.

Folks that expect that alwys seem to come down very hard. They push

themselves too much and are very upset when they are not back to

themselves in weeks or months. I think the doctors pretty much feel

the same way....and thats why they are so vague answering this

question.

Anyway, time does indeed bring changes...and for the most part with

this surgery that has been a good thing for me.

I am so glad to hear of your continued improvement...and hey...happy

2 year anniversary!

Take Care, Cam