Re: Hi I am new here - long

August 6, 2006

---Joanie,

I am 45 and had revision this past winter. I can eat soup. I also

have 4 children 8-18, it was hard on them but they all lived and are

probably a tad more independent after the ordeal!!! I do not know how

many sutures I had, I don't think alot, I think they were big loops

of suture, I can't even remember and this just happened 6 months

ago!!! I know I hate the big scar I have on my stomach area, but the

alternative was worse, the pain of sciatic and being bent over..I

guess i'll take the scar!!!I am still adjusting to my new body, tall

and straight. I think folks are correct when they say it takes a good

year to get back to normal. , PA

In , " myntjulip " <myntjulip@...>

wrote:

>

> Hello Everyone,

>

> My name is Joanie and I have just been given the news that

> eventually I will have to have a revision. My Harrington rod and

> fusion was done in 1978. I have had many good years without trouble

> or pain but my sciatica let me know what it can do about 3 years

> ago. I have been living on Advil for so long I should have stock in

> it. I finally decided to see a doctor. As you all very well know

> the memory of just how painful our surgery was kept me from going

> for a long time. I knew that either med or surgery would be my

> options. I did not expect to hear that I could delay the surgery

> but would need it down the road. What a bummer. The doctor gave me

> Mobic and I have had a huge reduction in my pain. It's still

there,

> but much less. I can put my heel down and I am able to walk more

> uprightish. He wants me to have a Myelogram to see what is going

on

> and to then see another surgeon for an additional opinion. I am

> afraid of this. Not like I am going to die or anything, but just

> the whole " get away from my back, you have done enough to me " kind

> of feeling. I am not sure if I should have it done. I don't know

> if this is something that should be done just before surgery or

> should I do it now to make sure nothing unusual or unexpected is

> going on? I am only 41 and I feel like the whole world has come

> crashing down. Silly and serious stuff runs through my mind. I

> have 2 girls ages 10 and 12. How will they handle seeing me after

> surgery? How do you spit out toothpaste if you can't lean over the

> sink? Can you ever eat soup again? What does this surgery do to

> your insides? Are organs pushed around to make more room here and

> there or is everything left as is? How many stitches do you get?

I

> had over 300 the first time. I want to know how folks do after

> surgery. What is it like? What does it take to get your life back

> and how long does it take? How are your families doing with this?

> What is helpful and what is a scam? Geez, I have so many

> questions. Sorry. Anyway, thanks for listening.

>

> -Joanie

>

August 6, 2006

Dear Joanie,

Welcome to the group, and I'm sorry that scoliosis is once again a problem in your life! I too was 41 when I got my diagnosis, and yes there is still a great deal of good functioning life after revision. I had my last revision 3 1/2 years ago and I'm doing well, even spit out toothpaste this morning, and ate soup yesterday ( following revision you will be able to bend from the hip, or at least be able to lean forward somewhat, after you have recovered). I know this all seems very scary, and the thought of doing this all again after what we went through as kids, but it's doable one step at a time.

Where did you have your Harrington Rod surgery when you were a kid, and who did it? Where are you located now? What doctor did you see and where was he located? I'm impressed with him that he recomended you get other opinions. While there isn't a ton of doc's who specialize in this type of surgery, there are excellent doc's spread throughout the country, just means some must travel. I had my surgeries with Dr. Anant Kumar and Dr. O'Brien in Denver, and I'm doing better than I hoped for, I'm able to walk and stand without pain, such a blessing.

There are tests that are very important to see just whats going on with you, and depending on what your doc calls for, a myleogram is necessary. I had one, along with a discogram, bone density scan. I'm pretty sure most doc's call for a myleogram. Most have found it pretty easy to go through, I before surgery was pretty painful when laid on my stomach, and you are on your stomach for quite awhile while they do the test, so if thats a problem for you ask for pre-meds. They are putting a needle into your spine, and it is difficult considering we have hardware, but with a very experienced doc it's usually no trouble. I just had pain from positioning, not from the test itself. You will need someone to drive you home and some doc's require you to lay down afterward for 24 hrs, I rested after I got home and resumed normal life the next morning.

My younger children were about the same age as yours when I had surgery. My kids teachers were awesome, I sent detailed letters to each of them telling them we thought they'd do better keeping their life the same, going to school rather than sitting at the hospital. I explained in detail to the teacher just what the surgery entailed, that this was a very long recovery, not days or weeks, but a few months. That the kids would be going back and forth to the hospital for the week I was in, and homework might be delayed to the weekend, since the kids need to see Mom. My kids were just glad to see me despite all the medical stuff and that I was loopy from all the med's. These men and women teachers were awesome, two even picked them up for school and took them home, called often to check on me, and lots of hugs given. I felt my kids came through it as well as possible, thanks to the kindness of these kind teachers.

Surgery, the anterior part involves getting at the spine from the front side of the body. My doc's had a vascular surgeon get them to the spine, and I have no problems resulting from that part of the surgery. I know it sounds yucky, but all seems to go back the way it was.

As for surgical closures, I had three surgeries in two years with Dr. Kumar, and each closure was different. My decompression/ Harrington Rod removal I had some kind of stiches that melt, and glue. The first revision, I had stiches they had to remove, lots of them. My second revision I had staples, they came out like butter.

Okay, now for recovery. I was in the hospital for about a week. I came home in a brace, TLSO, a soft plastic brace that goes just under the breast area to the hip. I slept a whole lot. I was pretty doped up, and the event in my day was walking to the bathroom with the walker, and showering with the help of my teenage daughter. Each day gets better. I was walking unaided at three weeks out, at about six weeks out I was cooking dinner and was out in public for short outings and driving. I began to feel like myself at about the three month mark, by then the surgical pain ended and I was painfree. I guess for me, it just took a long time for my energy and endurance to return, more than a year. They tell us anywhere from six months to eighteen months to recover, and in my case eighteen was true. Am I glad I did it, you bet! Before surgery I could walk as far as the mailbox at the end of the driveway, and I had to sit down wait for the pain to resolve before I could walk back in. I was extreamely limited, had to sit down five times while making dinner, couldn't wait in line at the grocery store. Today I walk three miles a day, last month I waited for two hours at the DMV on my feet, and no pain. I went into the whole thing looking for pain reduction, I figured if it was reduced by fifty percent, things would be manageable, and I could get function back. But when the surgical pain ended and I realized that I was painfree, nobody could have been more thankful. While there are drawbacks to being fused to the sacrum, not being able to bend fully, I have a leaning quality, I use grabbers to get things on the floor and the dryer. Cutting toe nails and shaving my legs are a pain, pedicures are relaxing, and I may even try waxing my legs since shaving isn't fun, and it takes an event to make me do it. What I have gotten from the surgery far outweighs the drawbacks, and all the drawbacks can be handled with tools. Having that awful pain gone is something that is never lost on me, I'm thankful to Dr. Kumar everyday for his skills and partnership in getting me to painfree land.

I suggest going to the site and in the files section you'll find member stories, great to read to get to know members, and you'll find yourself in the stories there, so give yourself some time and some kleenex, I'm from Colorado. There is also X-Rays shown in the photos section, and tons of great info in the files section, like what to ask doc's at your visit, and what to take to hospital. But the greatest gift you get from this group is the members, they all are at different stages of the Flatback journey, and are warm supportive people. So once again Welcome, ask away, we are here to help!

Colorado Springs

[ ] Hi I am new here - long

Hello Everyone,My name is Joanie and I have just been given the news that eventually I will have to have a revision. My Harrington rod and fusion was done in 1978. I have had many good years without trouble or pain but my sciatica let me know what it can do about 3 years ago. I have been living on Advil for so long I should have stock in it. I finally decided to see a doctor. As you all very well know the memory of just how painful our surgery was kept me from going for a long time. I knew that either med or surgery would be my options. I did not expect to hear that I could delay the surgery but would need it down the road. What a bummer. The doctor gave me Mobic and I have had a huge reduction in my pain. It's still there, but much less. I can put my heel down and I am able to walk more uprightish. He wants me to have a Myelogram to see what is going on and to then see another surgeon for an additional opinion. I am afraid of this. Not like I am going to die or anything, but just the whole "get away from my back, you have done enough to me" kind of feeling. I am not sure if I should have it done. I don't know if this is something that should be done just before surgery or should I do it now to make sure nothing unusual or unexpected is going on? I am only 41 and I feel like the whole world has come crashing down. Silly and serious stuff runs through my mind. I have 2 girls ages 10 and 12. How will they handle seeing me after surgery? How do you spit out toothpaste if you can't lean over the sink? Can you ever eat soup again? What does this surgery do to your insides? Are organs pushed around to make more room here and there or is everything left as is? How many stitches do you get? I had over 300 the first time. I want to know how folks do after surgery. What is it like? What does it take to get your life back and how long does it take? How are your families doing with this? What is helpful and what is a scam? Geez, I have so many questions. Sorry. Anyway, thanks for listening.-Joanie

August 7, 2006

Hi Joanie,

Welcome to the club. Reading your email brought back alot of

memories of what I've been through the past few years and then back

with my original surgery in 1972. I can pass on some info that my

doctors have told me, but each person may be different. My

approach - at this point in my life (I'm 45) - is to avoid surgery

as long as I can. I didn't take from your email that your doctor

said you definately needed surgery - or that you need it now. I'm

not sure whether you have decided to go ahead with it. If you have,

you don't have to read any further. If you haven't, here's my story.

I was told by a surgeon (who first diagnosed the flatback) that the

revision surgery was an option for me if my pain or posture became

intolerable. This totally freaked me out because I could still

remember the incredible pain from the first surgery. I also felt

that the medical community had failed me (us). Like you, I felt my

whole world crumbling down. I then went to a psysiatrist (rehab

medicine) who told me that I had a good chance of avoiding a

revision through continued PT and other more conservative measures

if I did not have instability. He took (I think) more x-rays and

told me that he didn't see any. At that time and since I was on

Celebrex or Bextra, each helped alot. The thing that helps me the

most is PT. I have posted on what has worked for me in PT before.

Search under my name on the Fiesty Flatbackers site for details.

Through a combination of core stabilization exercise, stretching and

manual therapy, I can usually stand pretty straight. I still have

chronic pain issues and life is far from perfect. I was rear ended

three years ago and it created even more back/neck problems than

before. Now, I see an ostopath, do more PT and take muscle

relaxers, as well as what I was doing before. I've also tried

injections. Even with all of this, I have come along way. BTW, I

have been doing PT continuously for 4 years and don't plan to stop.

Its no assurance that I'll avoid a revision, but I'm going to try. I

realize from there will come a time that my body will be too old to

handle the surgery and I'll have to decide before that. Also, the

car accident showed me that things can change in an instant. One of

the wonderful things about this group is that you can learn so much

about your options, what the surgery is like, etc., etc., etc.

Jane

>

> Hello Everyone,

>

> My name is Joanie and I have just been given the news that

> eventually I will have to have a revision. My Harrington rod and

> fusion was done in 1978. I have had many good years without

trouble

> or pain but my sciatica let me know what it can do about 3 years

> ago. I have been living on Advil for so long I should have stock

in

> it. I finally decided to see a doctor. As you all very well know

> the memory of just how painful our surgery was kept me from going

> for a long time. I knew that either med or surgery would be my

> options. I did not expect to hear that I could delay the surgery

> but would need it down the road. What a bummer. The doctor gave

me