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myree
10-07-2007, 07:30 AM
:confused: Hi everyone,
Well its 1 week and 2 days till my surgery...fusing T5 S1
just hoping that I'm making the right decision.
Doc says hes suprised that I'm still walking, I have an extremely large disc herniation (16mm). I also have scoliosis, spinal stenosis and degenerative disc disease and osteo arthiritis. My mom is 72 years old and thinks that my
Doc is just after the money, I think she is just affraid of the surgery. I was 35 years old before I knew that I had scoliosis, I am the baby of 5 children and was never told about the scoliosis. I always have had alot of back pain.
How do you make people understand how debilating this pain can be...I know that I am one tough cookie but I'm growing tired. The last week the pain has got worse and my legs have grown weaker, they shake after I walk for just a few minutes or after I shave my legs...any words of wisdom would be GREATLY appreciated!

vndy
10-07-2007, 09:00 AM
Whenever I feel like my close friends or family don't understand the kind of pain I'm in, I remind myself (and sometimes them too) how glad I am that they CAN'T understand, since they haven't experienced it. I do not want my loved ones to be in this sort of pain.

Good luck next week!

sccrm08
10-08-2007, 09:47 AM
Marie,

I had my family over for a party and showed them the x-rays. Those that didn't think surgery was a great idea, changed their mind.

crepehanger
10-08-2007, 11:14 AM
Hello Marie-

I wish I had thought of the party idea! I kept my back covered with clothing, as I was very self-conscious of my crookedness and the every growing rib hump. But I reached the point where I could not cover the pain and limp when I walked. In order to adequately explain the need for surgery, I just pulled up my shirt and showed people. They were very shocked, and quickly jumped on my " surgery bandwagon". I only did that when I was convinced I was going to go through with it, because then I realized there was no going back to my state of denial, as my secret was out. The pain also changed my personality and I became very withdrawn as I was unable to fix my problem on my own, and the sheer magnitude and complexity of scoliosis overwhelmed me. . So,.......I have to rejoin the human race as I recover from surgery. I hope those of you contemplating surgery don't let yourself go as low as I did. Being out of the pain and disfigurement has been a Godsend. It's a huge recovery, but a blessing that comes in trickles at times. Good Luck and just keep reminding your family of your pain and the potential for a near-normal life. And Marie, at the rate your pain and weakness is progressing, you're doing the right thing. Lisa

nzgirl
10-10-2007, 12:13 AM
The thing with scoliosis, is that a lot of the time even though we can clearly see a deformity on ourselves, to the un-trained eye people often can't see. Especially, when we cover up our curves that are in unusual places!
Therefore, because it is unseen, people don't realise the daily slog some of us experience. A lot of us are in pain most of the time, but rarely complain. We just turn down invitations to participate in certain physical events which other people can do, leave parties earlier than we want to, and finish our evenings out sooner than expected. I am a lucky person who only has that to contend with. While we have been living with this stuff for a long time, largely unseen to people who don't live with us, when we finally reach the point where surgery is on the agenda... the unwise ask... WHY? 'Surely it's not THAT bad' 'can't you do some exercises?' 'my friend had a bad back, it got better when she....'
It's really hard to explain to other people what chronic pain is, and even harder to explain the reality of what we go through. It's a brave choice to have surgery, and the last thing you need to hear is skepticism from people. You know your body well, and what you go through, and from that you can make an informed decision on surgery. Good luck.

Shari
10-10-2007, 03:41 AM
Hi Marie,

I understand your situation as well as all those that have responded. You have gotten excellent advice from all of them!!! I can't add to the words of wisdom you have already gotten. But I can add some words of encouragement.

We know our bodies and we know our pain. We also know to some extent what our future might bring. No one that does not have scoliosis can completely understand the pain or the thought processes that comes from the constant pain!!!

Some members of my family thought I was nuts for even considering the surgery, and afterwards had negative things to say about my results, because of my rough recovery. But no one knows the pain I had before my surgery.

It is so nice to be able to lay down without any pain at all. To actually be able to fall asleep for hours at a time, something I couldn't do for years!!!

For me, a good nights sleep makes it worth it,
Shari

abhbarry
10-10-2007, 04:41 PM
This thread is great. NZgirl - you said what we have all been feeling! Most people can't and won't ever understand what we go through with severe scoliosis and I find that showing them my x-rays and then just being extremely straight forward with friends and family really helps. It still doesn't mean that they understand. Having a medical condition that isn't always visible comes with its own social complications and difficulties.

I can say now that after 15+ years of watching my curve progress, surgery was the RIGHT thing to do. I'm a little over 4 months post-op. There are times where my body reminds me I had a BIG surgery, but I'm excited for the future. I'm getting much much better. Hang in there. There are those of us who do understand.

Best,
Anya

kdawn
10-10-2007, 06:45 PM
nzgirl-just wanted to say thank you for the encouraging words. I told my husband and sister "what will people think because I don't HAVE to have the surgery. " People don't realize what the pain is like and just because we don't complain doesn't mean we don't hurt. It's not going to change the fact that I'm hurting so I see no reason to complain to people. I have come to the conclusion that I'm going to have surgery and it doesn't matter if friends or family think it is the right decision because I feel it is the right decision. No matter what friends or family tell you, if you feel it is needs to be done the do it! The curve will just get worse over time.

myree
10-11-2007, 08:46 AM
All of you are absolutely right! Thank you all!
The only one that knows how I feel is ME...
Marie

Shari
10-14-2007, 01:57 AM
Hi Marie,

What you said, "The only one that knows how I feel is Me", strikes such a chord in me and actually brought a smile and some tears to my face.

It really is the truth.

We seem to have support and opposition to this surgical decision, and I found it stressful at times. But for me the bottom line was, what was best for me in the future.

Stay strong, and do what's best for you!!!

Shari