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spincon58
04-22-2004, 10:34 PM
Every night before I sleep, I scan the net for more info on scoliosis surgery..so far all I've found were complications and more complication...it seems where ever I turn all I here is bad news...Is there anyone out there that has had long fusion and is doing great?

At this point I'd rather be hit by a bus. Can't make a rational descison about anything. I know I need it for a better quality of life in the future, but what if I end up with more pain and problems? I want a positive attitude but how do I reach that if all I hear in negativity.
_________________
:mad:

connie

LindaRacine
04-22-2004, 10:50 PM
Connie...

I believe that the people who hang out in scoliosis forums on the internet are those seeking treatment. Those who had surgery, and who had good outcomes, don't stay around long.

I had surgery in 1992, fused A/P from T4-L3. I had about 7-8 great years. In the past 4-5 years, I've had pain from the deterioration of the first disc below my fusion. So, I'll eventually probably have to have a little surgery to extend my fusion one level. Having surgery, at least for me, was a very good thing.

My recommendation is that, if you can avoid surgery forever, do so. If you aren't going to be able to lead the rest of your life without having surgery, I think it's better to have the surgery when you're young (and when you have good insurance, someone to help you during recovery, etc.).

Regards,
Linda

MaryK
04-22-2004, 11:02 PM
Hello Connie! I'm one of those scoliosis stories you don't hear about. I had surgery for kyphoscoliosis at age 13. They had to put things together in a hurry because my curves were progressing and a huge speed. Though it was hard, and a shoulder injury made life miserable after surgery, I wouldn't change it for the world. None of my current problems were caused by surgery complications. I'm overweight and have a hormone problem so that causes lower back pain. Falling down the stairs a yr ago didn't help either! But I have a life that I would have never saw otherwise. I was so bad that the surgeon predicted that I would end up in a wheelchair by 20 and a nursing home by 25. The kyphosis would cause so much pressure on my heart and lungs that my living past 30 was doubtful. My type of case seems to be in the minority though. As it is, I am happily married and own my own business. Other health problems cause me frustration, but none of them include my back. I may have a small curve in my lower spine area, but I haven't had it checked out yet. Surgery is hard and should only be done if that's the only or absolute best choice, but for me it was a Godsend!

spincon58
04-23-2004, 09:53 AM
HI,
It's good to finally hear some good stories about surgery.......It's a fact, if I don't have surgery , 1)the curve will progress, the last 8 years has proven this 2) the pain is keeping me from standing longer than 15 min.
I'm irratible all the time....
.I don't take any pain meds....I had to get off them I was taking to many...

Any more good stories, my hopes are lifting.:D

jmz1978
05-13-2004, 10:03 PM
I am now recovering from surgery on April 20th. I am 26, and had T9 - L3 fused. I don't think mine is considered a "long" fusion, but I'm sure it's not exactly short either.
I just wanted to let you know that I am doing great. I was about as terrified as could be before my surgery, but I am very glad that I had it done. It has been three weeks, and I am doing many of the same things I did before the surgery. Sure, I am still in pain a little, and taking pain medicine, but it's not a sharp pain, it's more of a dull ache. The only thing that still hurts is riding in a car, but I've found taking a pillow with me helps. If you like and trust your doctor, don't worry so much.
If you have any questions, feel free to ask.

Jessica

momoflacrosse
05-14-2004, 05:36 AM
Hi there: I just wanted to say that you should stop killing yourself over this - it is only making matters harder for you hun- you know that you are going to need this surgery and hopefully you have found a good surgeon so put your trust in him and the sooner it is done the sooner you will be on the road to recovery and a better life - if your life is anything like mine then it isn't great. I am 50 and trying to find a surgeon to do my back and it is taking forever but I am hoping it will happen as my curves are progressing at about 2 degrees per year and at this rate I will probably be in a wheel chair by the time I am 60 and even though this is a huge surgery I am willing to take a year now to improve my life for the next 30 years( i Hope lol ) Try to keep away from seeking too much online and listen to your dr and go for it now and hey by this time next year you will be a new woman.

spincon58
05-14-2004, 06:07 PM
Dear Nancy,
words of wisdom....why is it taking U so long to have surgery? I'm sure U can find qualified surgeons where U live....how bad is your curve?

OK I guess good news...I saw the doctor again Micheal Neuwirth in NYC...my oldest sister and my husband came...they were impressed and well OK the confirmed date of surgery

Drum roll:D JUNE 28.....monday :D

I will go into this with a clear mind mind feeling possitive...

What also made the descision easier is the dr. said the fusion will be less than expected...maybe T4 to L2-3 so thats better than L4-5...he said that even in time if degenerated disc become aparent there are those artifical disc that can be considered instead of fusion.

count down begins.....yikes:rolleyes:

momoflacrosse
05-14-2004, 10:30 PM
Dear Connie:

Glad to hear that things are on track - good for you. I live in Canada and there aren't as many surgeons around up here. I will have to go to Toronto to have it done as the smaller cities near by just aren't set up to handle this kind of surgery. It is a very frustrating journey for me but I am hanging in there as I am just so tired of always being in pain and also knowing it is going to get worse doesn't help. So I am waiting and still looking for other surgeons. Keep us all up to date on how things go as I am really interested in how you make out and how the recovery process is. Take care and do feel free to email me if you need to vent or anything I am a good listener.

Nancy

MaryK
05-14-2004, 10:56 PM
Connie, Congrats on the surgery date. It will be hard but it is definately worth it! Any little problems I have now (my weight, sigh) is a thousand times better then pre-op! Now then, take a real deep breath and take the next month one minute at a time. You'll get through this!!:D

Nancy, I read posts like yours and I wish I could package you up and send you to my doctor! He's not only good but does research and is very active in new surgery technology. It'd be nice if we could clone him!!:D

pjo
06-01-2004, 12:03 AM
Hi Connie,

I'm new here and had similar surgery in Aug 03. T-2 to L-3. It was a hard decision for me also, I had been putting it off since I was 13 (I was 43 when I had surgery) but the curve had progressed 15 degrees in the last two years. So I really had no choice. I think once you make the decision, then you just have to work at acceptence. I just got ready for it, I knew about 2 months before surgery and started to walk every day, organized the house, read up on the surgery, and prayed and read my bible.

As far as recovery, things are going well for the most part. It seems to be an up and down kind of thing. I had to go out of state for the surgery, was in the hospital 8 days. I came home using a walker, and needing help in the shower, etc. but only needed the walker another 3 weeks or so.

I'm walking about 2 to 3 miles every day, doing pt, and went back to work very part time after 4 months.

At 9 months now, I'm still only working between 12 and 16 hours a week, and not doing the same job yet, ( I teach preschool) but am able to do office type work, for 4 to 5 hours, 3 days per week.

I wake up not very sore, but after a few hours of activity, I have to sit with my feet up or lie down for between 30 min to 1 hour. And then I can resume activities for another 2 or 3 hours. But I cook, shop, clean, garden, etc., but just for shorter amounts of time, and somewhat modified. I would say I'm at about 65% of what I was before surgery and don't know if that is typical or not. At my 6 month check up the nurse said that it takes most people between 1 to 2 years to be at close to 100%

I hope this helps you to accept and get ready for your surgery, after putting it off since I was 13 I'm glad it's over and not hanging over my head anymore. It's easier to say than to do, but try not to worry about as much as consider it a race or a challenge that you are getting ready for.

bone
06-01-2004, 01:56 PM
Hi Connie,
I can report good things. My surgery was July 20, 1971. I remember Jim Morrison dying on that date.
Anyway, I have a pretty severe S curve. both curves over sixty. I wore a body cast for ten months in my teenage years(after the surgery). I was sooo worried that I wouldnt get my drivers' license with this huge body cast on, but the agent didnt even mention it!
Yes, I do have pain and discomfort, but I'm not sure how much it would hurt if I hadnt had the surgery.
I'm very sensitive about who sees my back or touches it, but massage it very good.
I cannot report that doctors have been very sympathetic to me. They hesitate to medicate me properly, and when the rarity happens and they are willing, they dont know what they're doing. Hospitals I have visited during painful attacks have treated me like a drug seeker.
Make your doctor tell you now if he is going to wuss out when the pain gets thick. sometimes bringing the issue up before helps.

Other than that, getting in the car is definitely different!

BUT- the important thing is, i would do it again. i would not want to be any more deformed than i am. plus, they TOLD me that it would malform my heart and lungs if i didnt get the surgery when i did. i realize they might have been lying.

bone in detroit
you may write me directly, if you want dearbornhair@yahoo.com

spincon58
06-01-2004, 05:54 PM
Hi gang,

OK just an update...as some of U know I went horseback riding because I knew I would never do it again, I also (thanks to pain meds) was able to clean house for 6 hours the next day...but after those days I have been in constant pain....I seriously injuried my back...don't ever make that mistake...if U have a bad back don't take advantage like I did...so now I see the surgeon to take more films on Friday....

Today I saw another surgeon Dr. Lonner...in NYC...my insurence wanted me to get a second opinion....He said I need surgery and that fusion to L3 was a good idea but that will not take away my sever lower back pain....he also thinks i need a dicogram, i said no way!!so he said in the future there is dics replacement...thats what my origional dr, said...so they are going to do surgery knowing that I'll still be in pain and may need another surgery...DOES THIS SOUND RIGHT?..

I'm up to my neck with doctors....today I took my daughter to her well check up...and guess what she has signs of scloi...shoulder hights , rounded back..small hump...anyway shes 12....the pain in my heart is to much..I can't even get an appointment with the doctor here in town...I guess her problem will just have to wait a bit...

The reason I'm a nevious reck, is that I'm not postive I'll come out of surgery OK..I'm sure I'll have pain and that a revision will be in my future...

Thank you bone and pjo for bring your stories to this forum, it helps many of us...it brings both sides to the coin.....I hope better days for all of us........oh and niagra falls was a wonderful trip!!!
love ya.....
connie

Susan Kennedy
06-03-2004, 09:00 PM
Connie,
I too am having surgery on June 28th in California. Actually, I will be having my third surgery on that day. Mine is a 3-stage surgery (complicated). On the 28th I will be having the posterior part of the surgery done. I will be fused from T4-S1. I will keep you in my prayers. God bless.
Susan

lily
06-04-2004, 11:26 AM
Connie and Susan,

I will be praying for both of you. June 28 is marked on my calendar.

Lily

Susan Kennedy
06-05-2004, 10:03 PM
Lily,
Thank you. Everyone's prayers are so appreciated. I will ask my husband to keep everyone updated on my progress.
Susan;) ;)

spincon58
06-06-2004, 10:53 AM
Lily,

Your very kind !:) Thank You ;) Susan, Why are you being fused to S1? My lower dics are not in great shape but the doctor said there are new advance techneich that can help save the dics like the artifical ones...good luck with your surgery....

taraward
06-08-2004, 05:12 PM
Hey remember me from need someone to help, well sweetie your gonna be just fine have faith. Yes complicataions may indeed come, i have had one, if you read my new thread " STAFF Infection" but you just have to take care of yourself and understand that with surgery there may be complication, it is a risk that we all have taken, but you cant stop spme of them as you can see in my story. but you have to stay positive because mind over matter is what heals you, if you stay negative your body will respond to that and not heal as well. Just think of cancer patients that have been told that they only have like 6 months to live and they are like "no! i will not accept that!" and they stay positive and their cancer goes away. MIND OVER MATTER, is the key to healing, and if you need me i am here to answer any of your questions, i will tell you i've been through it all with this surgery. email me if you like. ok. :) Tara Ward Houston Texas

dapsbounce8
06-09-2004, 02:49 PM
I had my surgery four months ago, but the story I want to tell is about my mom. She had her surgery at about my age (fifteen or sixteen I think). This was a long time ago, when they took bone from the shin to fuse to spine.

Whenever I had doubts about my surgery, she would tell me her story. She says she still has some problems, but none related to the surgery. She can't turn her neck very much, has large scars, and a prominent shoulder (all related to the relatively primitive method used for the fusion), but she has never had a back ache in her life.

Most people in this forum are here because they are a) going into surgery, b) recovering from surgery, or c) having complications from surgery. That means that all you will hear are bad stories - not many people post to brag about how great they feel. So don't worry so much Connie. There are tons of success stories out there, you just don't hear them very often.

OneofFive1
06-09-2004, 07:00 PM
spincon58
Have u heard of scoliosistreatment.com?

momoflacrosse
06-10-2004, 12:25 AM
Connie: Don't even bother to check out that site it isn't applicable to people of our age and if you look at the photos they certainly don't look like the same persopn to me in the time frame given - so do yourself a favour and pretend you didn't see the post.

Nancy

spincon58
06-11-2004, 01:22 AM
Hi Nancy,

Haven't heard from you in a while..Is everyything OK..??
At this point the only treatment is surgery, and I can honest say that with the help of this forum and the friends I have made here that I am truely ready physcial(maybe) but emotional yes...Just hanging with appointments of the kids, graduation, finals,parties,cleaning house and passing time.....now I'm ready to pass the calmness to anyone who needs it....

Jill K's Mom
06-11-2004, 08:50 PM
Jill had her fusion T4-T12 one week ago today. She never had pre-op pain, she only had the surgery because it was medically recommended. She is straighter, taller, more symmetrical, and hopefully will be pain free and the scoliosis will no longer pose a risk to her lungs and other organs . Connie - any major surgery is scary for sure, but I believe this surgery for you is the right thing and you are headed in the right direction. Trust your doctor. Have you researched him on the internet? If he and others say this is the thing to do, get it done, and looking back you will be glad you did. I don't want to sound like the eternal optimist, but I do believe in letting the doctor decide. After all that is his specialty, he must know what he's doing. Good luck and God speed!

OneofFive1
06-12-2004, 02:58 PM
momoflacrosse,
Where u commenting about my post?

spincon58
06-12-2004, 04:50 PM
Hi Everyone,

I just broke out in a cry to think that my life living with a back deformity will soon be over..and maybe I can be taller ....Does anybody feel emotional different once they don't have that rib hump any longer...

dapsbounce8
06-12-2004, 05:30 PM
I felt the exact same before and after surgery. I was more confident about how my clothes fit, but I don't think that physical appearance should be the only reason for surgery. Changing your appearance can only do so much.

mish
06-13-2004, 02:18 PM
That hump makes it so much harder to find tops that fit. I always had to buy larger sizes, and they sometime even don't fit.

Connie, I haven't gone through that emotion yet, but i am sure once i have all the specific, i probably will.

I believe your surgery is 6/28 - i wish you the very best. I have an appt end of june to discuss more specifics and making arrangement with my doctor. Wish me luck

Mish

Theresa
06-13-2004, 08:16 PM
Connie,

This is Theresa. It's hard to describe how you feel about the hump being gone or at least diminished alot. Alot of people always told me they never noticed it, but of course it was hugh to me. When we had pictures taken, I didn't want them taken from my right side. It made me look so big! The other problem that was worse, your clothes were always crooked, no matter how many times you fixed them. My doctor told me yesterday at my 2 month check up that my 80 degree curve is down to about 22 and my 44 degree curve (lumbar) is down to about 18. That sounds great but now my right hip sticks out. It could be from muscle still or my spine or pelvis is shaped weird. It's easier to hide than the shoulder and rib hump. Do you also have your ribs protruding in the front? I had my ribs protruding in front on the left side and the shoulder hump on the right side. Hope this helps. Theresa

spincon58
06-13-2004, 08:33 PM
Theresa,

Hi,
I always took pictures from the other side of the hump too...it's funny how we adapt...I can't tell about my ribs so much it looks normal ....how bad is your hip sticking out? I never thought that once my spine gets straight something else can go out of wack...

Theresa
06-13-2004, 08:43 PM
Connie,

It hard to say how much it sticks out. The morning time it's not as bad, becasue I'm well rested and can stand straighter. As the day goes on and my muscles get tired it's more noticeable. It kinda looks like I have my right hip pushed out. The doctor said to wait 3 months for the fusion to finish and if the muscles and still giving my problems, then he'll send me to physical theraphy. If that doesn't help and the hip causes pain, he said he could do surgery where he takes a wedge of bone out. I didn't quite understand if he meant from the spine or the pelvis. Theresa

momoflacrosse
06-14-2004, 08:51 AM
hi all:

I think the worst for me is that I have a terrible time with my bras staying put on my right side I have to be careful to always get elastic straps or they slither down every time lol. Theresa my ribs on the left are forward and quite deformed from trying to compensate if I forget and lean forward to reach something the lower one will get stuck in the one above it and it hurts like crazy when it pops back into place. My biggest problem now is my weight - I have let myself go and now becasue I can't do a lot itis going to be really hard to get it off and I have also developed some coronary heart disease. Boy what we go through. Anyhow just thought I would tell you about my hump - I forgot about it when I got married and all the photos were taken from the right and guess what I see when I look at them ???? good thing I am divorced so I don't look at them anymore rofl. still have you in my thoughts and prayes Connie.

Nancy