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View Full Version : did anyone one else run away and hide at the thought of surgery



the optimist
01-23-2007, 07:00 AM
hey there
This is my first post so sorry it might be a little long winded.
I was diagnosised at 13 and went to the hospital for check ups for the next three years, they were going to brace me and fitted me but then said there was no point as the curve was under my sholder blade and it wouldn't do anything. By this time i was 15 and they were talking about surgery. I would go up to the hospital crying, get there and cry and leave crying, basically it scarred the shit out of me.
So now i am 24 and the curve has obviously got worse since i was 15 and most obviously my ribs have twisted alot so i have an attractive bump on my back (right side) and front (left) and uneven breasts (the wonder of a wonderbra with a pad in just one side horay!).
I recently started on an anti acne drug called roeaccutane and since then my back has started to give me a bit of pain (like a trapped nerve) at the bottom of my right rib (on my back).
I went to the doctor and she said go back to the scoliosis hospital, i am now waiting to be seen, but i know they will operate (as they wanted to 9 years ago) and am getting a bit scarred!

i guess what i want to know is did anyone else find out about their scoliosis and then run away? i feel like the doctors are going to have a massive go at me for not keeping in touch with them and tell me off for letting my back get worse (it was 37 degrees when i was 15)
and also wondered if 24 is a "normal" age for surgery or am i quite old (i feel more able to cope with the prospect of an operation than when i was a teen)
it seems like everyone here got told the news and dealt with i t well, it has taken me 9 years to face it, am i the only one?

Robbie
01-23-2007, 07:23 AM
It's perfectly natural to be terrified at the thought of having scoliosis and needing surgery for it. I wasn't too scared, but I was anxious. I doubt the doctors are going to have a "massive go" at you - they are, after all, looking out for your best interests. While it may have been best to follow your doctor's advice nine years ago, we can't change the past. Once you've had the surgery, you'll probably think back and wonder what on earth you were so scared of.

There are people on this board who have had the surgery in their forties to sixties and have gotten on perfectly well, so I should think you'll do fine at twenty-four. I wish you the very best of luck. Keep us updated on how it goes!

the optimist
01-23-2007, 07:58 AM
thanks robbie
this is true, i think sometimes when you think about things over and over in your head they just seem alot worse, even writing everything down is quite a relief, i didnt tell anyone (apart from my mum) for 8 years and its good to just talk about it
thank you once again
ps the pictures you posted are amazing your back looks great

abhbarry
01-23-2007, 08:40 AM
Hi,

I don't think your situation is unusual at all! I was diagnosed when I was 13 and am now turning 28 and just began to consider surgery last year. The surgeons wanted to operate on me as a teenager, but I didn't mostly because of my parents. However, it still scared me to death, and I have to say that even though I may sound more at peace now, I went through a good period of a couple months where I cried every day (last year) when I decided to seriously consider this surgery. I remember vividly the amount of crying I did coming back from the surgeon in the car and trying to wipe away the tears so I could drive safely! I think these emotions are absolutely normal, and everyone who seems to be handling it well has gone through a major learning and growing process to get there. So, don't worry. You will also read on this forum that you might want to "run" from any doctor who absolutely pressures you into surgery. It is ultimately your choice. My surgeon is very cautious, but has been realistic with me, and I have an appointment March 1st to make the final decision about surgery.

Best of luck,
Anya

the optimist
01-23-2007, 09:07 AM
wow this forum is amazing
i think i have probably spoken two 2 people who have had scoliosis in my life and now i have done that in an hour!
what made you decide to have surgery pain or cosmetic (i hate the use of that word in this context, but you know what i mean). Was it a massive relief to just think "yep i am gonna do it" ?
have they explain the whole operation to you yet?
good luck with it and think of all the great clothes you can wear/ buy after the op

lelc2002@yahoo
01-23-2007, 10:27 AM
Hi,
I had 4o/45 degree curves at 15...balanced..& I did'nt go back to be checked for scoliosis by a specialist until I was 43...I was too damned scared. I did'nt in my wildest dreams, think anyone could help me...
I was wrong, thk God....Ly :)
aug 2005 surgery-at 46
95 degree thorocolumbar curve/reduced to 59
at HSS/NYC-Dr. Boachie/Dr. Kim
http://lynnebackattack.blogspot.com

Cakedec
01-23-2007, 10:50 AM
Hi Optimist!!
They found my scoliosis at 13 and my parents were too scared for me to have surgery because back then (70's) the dr. told them that there was a high rate of being paralyzed. I had it checked again in the 90's and it had continued to get worse and cause me pain, but the dr. still didn't think I should have surgery. The curvature eventually got so I could barely walk and couldn't sit comfortably or work, so I went in again a couple of years ago and finally found a surgeon who wondered why I hadn't had surgery long before! So I had it at the age of 47 and I'm glad I did.

I know it is very scary. Keep reading this forum and writing in with your questions. many of us were on this forum for a year or two before we could get up enough courage to have surgery. Be sure to get a second or even third opinion before you make your decision. You are at a good age to recover quickly from it and the hardware and surgical techniques are so much better now than when we were younger that it is probably a good thing that you did wait!!

Deb
age 48
posterior surgery 7/24/06
for T72,L77 curves
50% correction
Don't wait to get straight!!

lelc2002@yahoo
01-23-2007, 11:55 AM
Deb--cakedec--knew you were a year older than me!!!! Ha! -- :p Ly

dawney
01-23-2007, 06:20 PM
I was diagnosed in 7th grade wore a brace, hated it. After that I ignored it for almost 20 years. The pain caught up with me. I always hated the way my back looked and a couple of years ago my friends could tell if I was having a bad day if I walked crooked. I was scared to death to go to a dr. When the pain began to get too severe surgery seemed less scary. I am very happy about the cosmetic benefits. I received the best compliment from someone in work yesterday. He told me that I looked like a different person from the back

rainbow2010
01-24-2007, 06:03 AM
My parents didn't give me the option of not having the surgery. When my mother was dying and in intense pain due to her cancer, she asked me how I dealt with the pain over the years. I told her I just got used to it and ignored it as much as possible. She also asked me if I regretted having the surgery and I told her no. I told her that according to the doctor back then, I wouldn't have lived long enough to have my kids or see my grandson. Even with seeing all I had been through, my daughter had her surgery and didn't hesitate. I think everyone is frightened at the thought of surgery because we have to face our mortality. I have gotten through all of my surgeries because of my faith in the Lord. Psalm 68:19

Heathmoose
01-24-2007, 01:43 PM
I was diagnosed at age 15 and put in a brace. Surgery was out of the question at that point...my parents were totally against it and my curves were not really severe, though the surgeon said it was an option back then.

After the brace, I sort of forgot about it and just figured surgery was not an option. Throughout my 20's I noticed my back changing and increasing pain. So I managed to avoid it, but it caught up to me and I had to start dealing with it, but this time, I was an adult and did extensive research and tracked the curve progression for a few years. I sort of wanted to bury my head in the sand and not deal with it, but I just came to the point of acceptance.

I had always been told not to have surgery unless I was in a "life threatening" situation. I certainly was not in a life threatening situation, but my curve was 70 degrees and progressing. I was in a lot of pain. I really really thought I could avoid surgery and looked into alternatives, but in the end, the surgery was worth it...the outcome outweighed all the fear, anxiety beforehand. It is a tough decision to make...and certainly a situation that we'd all like to have been able to run away from...
Good luck in whatever you decide to do... :)

brynnski
01-24-2007, 04:19 PM
To Heather: Your message really helped me. I'm having anterior and posterior fusions on May 15 and May 18 because my curves have progressed. My lumbar curve has gone from 45 degrees to around 58 degrees in a couple of years or less. My pain has become constant, as yours was. I've gone through a lot of fear trying to face the fact that I'm going to have these surgeries. I'm afraid my pain will just come back in new places and that it'll be hard to recover since I'm 59 years old. But lately my focus has been on looking for the positive as I prepare my body and mind for May 15. It's so wonderful that you are OK now! And you're so straight! Are you in any pain at all?
To everyone who is waiting for their surgeries, like I am: I know how hard it is and I'm certainly there for you. A lot of people on here have good suggestions about how to cope. We'll do it, and eventually we'll be the ones encouraging others.
Take care,
Brynn

Shari
01-24-2007, 11:22 PM
Hi Optimism,

All of us have had many fears and concerns over the years, and it doesn't matter what age you are!!!

The advantage you do have is that you are young and the medical profession has made such great strides to help us now. And it does seem the younger you are the faster you heal, and the surgery seems to less invasive because of your flexiblity.

No matter when or if you decide to have the surgery, it's still scarey. But it helps when you have faith and confidence in your surgeon. You'll know it in your heart, but I was 45 and still scared to death!!!

Shari

Heathmoose
01-25-2007, 09:15 PM
Hi Brynn...

Since my surgery (almost 3 years ago), I really don't have much pain anymore. Every once in a while, a spot that used to bother me pre-surgery acts up for a few days. Usually b/c I've strained muscles. I would say I am 90% pain free. My quality of life is much better. I had no difficulty with my pregnancy last year and the birth was fine. Just wasn't able to have an epidural b/c of the fusion location. Actually I really didn't want anything else being placed into my spine...titanium rods and screws are enough...thank you very much. Now it is a bit difficult lifting my almost 20 pound baby girl, but I use my abdominal muscles a lot. I also bathe her in a tub on a counter top, so I don't have to bend. She is going to have to learn to climb in and out of things pretty early b/c I won't always be able to lift her!

I could not imagine going through a pregnancy before my surgery. I was in pain even lying down before the surgery. I had seen a chiropractor and did pilates before the surgery. For a while, I felt great and then went for x-rays and found my curves had still progressed.

In the end, what I had tried to avoid all along really did help me...

brynnski
01-26-2007, 03:07 PM
Thanks, Heather. And thanks to everyone else on this site. Your experiences and reassurance have helped me so much, especially when I keep running into people who say, "whatever you do, don't have back surgery!" Of course, these people don't have scoliosis that is progressing. I'm very glad I've found this forum!

Brynn

mouna
01-26-2007, 04:07 PM
I'm new here and the answer is YES. I'm 47 and from London. The problem was never really addressed in the UK. Only after I came to France , had 2 kids, and saw myself lose 10 cms in 10 yrs did start to realize that my (now) 80 curve had to be dealt with. Took me a LONG time to take the decision to have surgery - scheduled feb 14 - and I'm looking forward to it....

MishP
01-26-2007, 07:33 PM
Optimist,

Surgery is a very scary thing. I've been running from surgery for the last 25 years. My parents were against the surgery back in the 70's not only because of the evasiveness of the surgery in itself but the horrible post op body cast, etc. that you had to go through. So I too have waited a long time to finally consider surgery. Not only for cosmetic reasons but for health reasons as well.

I think it's most important to consider surgery once you feel pain and/or feel the effects on your lungs. For me, once the pain started and I started to feel more out of breath, then I started to consider surgery. That's when I found out that my curve progressed 20 degrees and I was only breathing at 50%...not good.

I'm glad I waited until now. Surgery is still very scary, but there are so many good doctors out there and so many successful surgeries. And of course, this forum is an amazing support. There are so many great people on here with great information. :) Good luck in your decision.