New here, surgery date Feb 23. Terrified.

[Pooka1]

Eventually I came to the realization that with or without surgery, I would never have a "normal" spine, and that at least with surgery, I would have a better chance of stopping the progression and lessening the pain. That's the way it turned out for me, so I'm glad I had it done.

This is how I have come to terms with my daughters' scoliosis. It becomes a game of cutting losses. Which action minimizes total loss. There is sometimes only the illusion of choice.

[Lilysaidwhat]

There is sometimes only the illusion of choice.

Tell that to the insurance companies! LOL

[Pooka1]

Tell that to the insurance companies! LOL

Excellent.

[debbei]

Lilly,

I just sent you a private message.

[Lilysaidwhat]

Thanks Debbe - I hate that I have to limit the characters in my reply to a PM!!!! Very annoying and hinders my ability to convey the sincerity of my thanks.

The Dr's office called this morning, and I am confirmed for 8:30 on the 23rd.

Did you guys find that the fear/anxiety came and went with each moment pre-op?

[Lilysaidwhat]

I'm starting to step backwards and think I don't want to do the surgery. I am really afraid of loss of mobility and quality of life or that I will end up with more pain than I have now and ruin my life by doing this.

Reading about some of the horror stories I'm seeing here isn't helping - I'm starting to think maybe I should just enjoy what I have left, and when the pain gets too bad, just call it a day and say, well, it was a good run.

This is really, really terrifying and the prospect of ruining what life I have left with unbridled pain and a horrid recovery makes me think twice.

[Singer]

Hi Lily, I sent you a PM.

[hdugger]

The surgery decision is really, really hard. It's always a balance of the likely outcome if you have surgery right now and the likely outcome if you delay.

I have a 22 year old son with a 50 something curve who is delaying surgery because he's not in pain or progressing. If he starts having pain, it's going to tilt the decision towards surgery. But, while he's fine, the risk doesn't seem like it's worth it.

On the flip side, I have a 90 year old mother who really should have had hip surgery when she was in her 60s. Not having that surgery then really decreased the quality of her life for 30 years.

I wish you the best of luck in figuring out what to do.

[golfnut]

I just had my surgery on Jan, 5 and I can already say I am glad I had it, I am 60 and in good shape and didn't want to push my luck by waiting. I have been overwhelmed with friends walking my dogs,food Cards offerring to drive, etc. Good luckk!

[Lilysaidwhat]

Well, I am in pain. I have daily pain. My baseline is a 4, where I notice it when I get up, move a certain way, etc. but it's not horrible and I take full max doses of celebrex and tramadol daily. However, it does (the pain) impact my life daily. I muscle through it usually but I feel it, it's there, and often it is in the 5-6 region. 7 for me is unable to focus, 8 is panic attack and nausea.

I just worry how stiff I will be. Will I walk like a robot post-op? Will I be still able to turn my head? Shake my hips? Enjoy s*x? Dance? Yoga? Run? Walk in my 4" heels at work?

What if I just end up triggering one pain drama after another with repeated surgeries to try to fix what I did by doing this in the first place? I can't see over the battlefield to a brighter day. I know that down the road I will be in worse pain, unable to do things I do now, etc. - and I worry that if I wait, then I will be fused further than they will do it now.

I feel like I have no choice. And I feel like this could likely be the last 4 weeks of my life. And it makes me feel inconsolable despair.

Then I look at people who treat their bodies like crap, are fat, do nothing with their lives, and wander haplessly through the world without ever knowing chronic pain or major fears and decisions like this. And I resent them. How horrible is that? *I* get the raw deal and they wander aimlessly on in their fast food, exercise-less haze. But *I* get screwed.

I don't know what's worse, the fear or the rage.

[Pooka1]

I don't know what's worse, the fear or the rage.

You got a raw deal. Bad things happen to good people. I'm sorry for everyone in that boat. We are carried along on a river of contingency, coincidence, and serendipity.

“Of course we have free will because we have no choice but to have it.” -- Christopher Hitchens

[JenniferG]

That's the hard part, there are no guarantees. I was fortunate in that when I joined the forum, almost in tears with the fear, and asked for help, there was little mention of bad outcomes which made my decision easier. Despite the surgeon giving me a list of risks and complications as long as my arm. However, there have been a couple of horrible outcomes in recent times, which distorts your idea of your chances of a good outcome.

I would do it all again though, even if I hadn't had an excellent outcome. I was also fearful of my future. I lived with a dread that I might end up dependent on others. It can still happen, there are plenty of other things that can go wrong with our bodies. But at least now, my back will not be the cause.

I think your chances are very good of an excellent outcome. Just my feeling from the bits of data you pick up from reading these forums for years.

[karena]

Hi Lily, so now you have tons of information. So, I don't know how useful another set of advice will be. I am pretty fresh (I think) from surgery. Other people got fused, I got (I call them mini boobs) implants in place of 7 discs. Not really a fusion, kind of. I am just about at 5 months post and am feeling better, doing more, trying to still rest which is important. So...

1. Did you find that you needed 24/7 help the first two weeks? What did you mostly need help with? Yes absolutely the more help the better. Having your network was one of the most important things that got me thru' this process. My husband worked all day, my mom came to help but I ended up in ER for a day due to not enough pain meds. Not fun.

2. How long before I can shower? We had the chair in the shower, used it once. Husband helped because you have to be hermetically sealed from getting the sutures wet. Pain in the butt. I have very thick hair, it was vegas summer and it was a process. In days you don't want to do that, use lots of those wet ones things. Yeah, ew, but it is helpful.

3. How long did you stay in the hospital? They're saying 5-7 days and I am shooting for 4. I was in 4 days. Should have been one more day to avoid that ER visit!

4. How long was your surgery and how complex? The OR is booked for 5 hours.
I was in 5 hours, recovery 3. My BP is naturally very low so I couldn't get 'woken up'. I had the rebotics with XLIF along with 3 monitors. I saw the monitor probes get hooked on me while waiting (not needles) except one which they waited till I was under anesthetic to do. My doc was a neurosurgeon which was my choice over the orthopedic consults I had. Felt more comfortable that this guy also does brain surgery.

5. When did you return to work? I have a 2 hour commute by train but am hoping to telecommute at 8 weeks. Is this reasonable or a stretch? I have a desk job.
I don't think I am typical. It took a long time for me to get up and about even with walking 10 minutes every hour. It was religion, but I did not feel comfortable moving and sitting for 3 months. But each surgery is different. Seems the fusion folks come to very quickly.

6. Was there anything that was good during that first 3 months?
So happy I had the surgery, first 3 months is very very tough. I know you are scared. I cried right before rolling into the room. Even though everybody was saying my doc was the best, you have that fear that you won't come out of it, etc. Pray, do positive speak, talk like you are already in perfect health. I did that before, and I said it all during my 10 minute walks, I prayed constantly. I became incredibly strong and resilient and know that helping people is now in my future.

7. When did you first feel glad that you had done this? I don't know that I will ever feel that way, as for me, I don't know that I will ever be able to quantify what I have avoided by doing this.
There was no other choice than surgery for me as I was going to lose my leg. 7 discs were gone in my back and I was in chronic pain (probably doing stuff I shouldn't regardless because moving kept me from dwelling on pain). 3 months was a turning point. 3.5 was better. 4 was way better. I still have issues, alot of people do, your journey will be your personal one. Reading on this website saved me as did my network of friends checking in, helping, shopping, errands, driving to appts. The doctor has this questionnaire afterward (2 months) if I were to do it again would I opt for surgery? Absolutely yes, even if I wasn't going to lose my leg!!

[jeneemohler]

Hey Lily-

I am only 2 weeks post op, and I sure hope I can ease some of your fears. I haven't posted my progress, I was waiting until my 2 week check up yesterday. I have been struggling with almost guilt-like feelings about my recovery. It has been so great, that I feel a little awkward about flaunting it when others have had rougher recoveries. But not all recoveries are as rough as some, so I need to remind people of that.

Please look at the positive. I chose to look at all the positive things I would experience, and to make exciting changes with things that may need adjusting. I can honestly tell you, I am feeling even better than my best "positive" imaginations were. I am in little pain. Yes, there are is an uncomfortable tightness in my back and I'm a little sore, but it was nothing like the hip/back/leg pain due to sciatica and spasms. I was on vioxx, then mobic for 15 years to control the pain enough to enable me to work. Some vicodin when it was especially bad, but I hate taking meds.... Like you, I hid my back well. I had over 70 degree curves, both lumbar and thoracic, and yet no one knew I had that bad of a back back, because I didn't want anyone feeling sorry for me or feel like they had to take up any slack on my part. I had 3 pinched nerves and my spinal cord was being compressed. But I stayed as active as possible, and that has helped, I know. The doc said I have the bones of a young woman. Yes, I am stubborn and type A, also!!!

I had nerve monitoring, also. It is a huge relief knowing that they weren't digging around there with no idea how my nerves were doing. Thank goodness for all the advances. I was fused from T4 to my pelvis with pelvic fixation. Both curves went from 70's to around 35 degrees. I only grew one inch. I have a long torso and didn't want to look awkward either. But I'm not. It is just all rearranged in there and the lumps, humps, and protrusions are GONE.
Wouldn't it be nice to not have to take any more medications for pain, not to have to worry about the curves progressing or waiting too long, and then not getting enough correction to make it worthwhile? I kept putting it off year after year. Then, in 6 months, I shrank 3"-it was a wake up call that I could not put it off any longer. Up til then, it was a degree or 2 a year. If I waited another year or two, my flexibility would hinder my correction. And I believe we should go through this while we are as young and healthy as possible.
It seems like there is a pattern with us on this site. In our 40's and 50's, it seems to take a noticeable change for the worse.

My greatest fear was also of being stiff and limiting my activites. I can already tell that it won't be as bad as I imagined. I have a friend that told me I would be like a prima ballerina. They have such grace and elegance, and always dance with a erect spine. I sure prefer elegant and erect to stiff and awkward. It is all in the perception! And yes, my back feels like a ballerina now. It looks like one too! Don't shortchange yourself-get the most correction they can and you will be glad for the rest of your life that you did. Please contact me if you would like to talk sometime. I would be more than happy to help. Despite my positive outlook, I was still pretty scared and fear does creep in no matter how well prepared you are. Hang in there!!! Send me a private message if you want to talk.

Jenee'

[Lilysaidwhat]

Everyone, thank you for the reinforcement. I've stepped back from the ledge today and am forging ahead toward Feb 23.

What I have noticed is that the fear is worse later in the day for me (I am a morning person so maybe being tired is part of that - my sleep is fitful at best these days due to anxiety, and I'm living on anywhere from 1.5 - 6 hrs of sleep depending on the day), and that it's better to take xanax as soon as the fear starts creeping in rather than waiting for it to be in full swing.


Can we talk about car rides for a minute? I have a super cute convertible and reallllly want to drive it on my birthday but that is 3 months post-op. As for work, I'm assuming to be out 4.5 months because I have to be able to come to my office in order to be cleared to work by both my surgeon AND my company's doctor. However, it's a 2 hour commute by [often jarring] train, and I can't do that for 4 months. Is there a 4-month post-op check up to see how the fusion is going?