PDA

View Full Version : Worth it?



ADMoul
09-28-2009, 03:47 PM
I am sitting here blissfully pain-free after an epidural steroid injection which gives me tremendous relief for at least 2 months. It's been almost a year since my last one and I forgot what feeling normal was like. These 6 weeks of waiting for this initial app't. seem to be taking forever and it's hard not to have second thoughts when you're feeling good. (I'm making plans and commitments all the while thinking "Well, this isn't going to happen if I schedule surgery" and wondering how long my life will be on hold as I recover.) As I read through posts of this incredibly challenging recovery process, I guess I want some reassurance that it's all worth it, esp. from those of you that are 6 mo's or a year or more post-op. Obviously, I know I can't live the rest of my life on frequent steroids but it's just so wonderful to be able to do the things I enjoy again without debilitating pain, even if it's short-term. Will the surgery allow me to feel like this long-term, even if it takes a while to get there? Realizing there are no guarantees and everyone's situation is different, I need to know that there are people out there who now have comfortable, "normal" lives after going through this process. I know the Dr. and his team will be able to answer some of this but I guess I just need a little positive encouragement from those of you that have been there.
Sorry if this is a little rambling--could be those steroids talking;)
Thanks,
Anne

jrnyc
09-28-2009, 04:14 PM
Hi Anne
am glad you have gotten relief from the epidurals...i had 3, but they didnt help...also had facet block injections & nerve ablation...they did a little, but not much...BUT...had sacroiliac injections about 3 weeks ago...& they worked :)
well, at least for now...the problem is, these are temporary solutions to a permanent condition...at least, in my case they are...& i know i am putting off the inevitable...am leery of saying this is working cause the facet block & nerve ablation treatments helped for about a month, & i am not at the one month mark for the sacroiliac injections...soooo...i will wait & see...am considering surgery spring 2010...need T11-S1 & L4-sacrum, 2 rods & 16 screws, they tell me...front & back incisions...all 3 surgeons gave same opinion...

it would be great if the epidurals you get last for months and continue to work...i wish i could have a treatment 2 or 3 times a year & have it eliminate all the pain...tho i am a little worried about the steroids they are injecting...but they are better than when i used to take oral steroids...i havent swelled up from the injections like i did from the orals, havent gained weight...& havent noticed other side effects from the injections that the orals caused...at least, not yet any way

best of luck in whatever you decide..
jess

Singer
09-28-2009, 04:50 PM
Hi Ann,

I was also desperate to know if it was all worth it before I had my surgery. My short answer is yes, it's worth it -- but everything turned out a bit differently than I thought it would. I'm not back to normal per se -- I have a new normal which is a little more limited than I thought it would be. .

In my experience, this surgery certainly corrected my curve and hopefully arrested the progression, but it didn't restore me to the level of activity I had years ago before my curve got so bad. I've lost some mobility and flexibility and can't do certain things anymore, like gardening and running. It took me a while to accept the fact that with or without the surgery, my back will never be "normal". It's not a cure-all (again, this is MY experience). BUT at the rate my curve was progressing, I believe I would have been in bad shape by the time I was in my sixties. So yeah, for me it was worth it.

JenniferG
09-28-2009, 04:54 PM
Hi Anne,

Speaking for myself, it most certainly was worth it. I have been fine since 3 months. My lost flexibility is returning and I do pretty much everything I did pre-op and before, now.

I am nearly 8 months now (where did the time go?) and yesterday I washed my car for the first time. We were set to go kayaking on Sunday but the wind turned galeforce so we didn't go, but I'm sure I'll manage kayaking just fine. The other night, I pulled my foot far enough up my opposite thigh to be able to trim my toenails so there's not anything I can't do, except lift over 10 kilos until I get the ok to lift more.

I thank my lucky stars every day and just hope my luck continues through to full fusion. Fingers crossed!

loves to skate
09-28-2009, 05:38 PM
Hi Anne,

For me, surgery has definitely been worth it. Recovery is very difficult and different for everyone, but it has kept me out of a wheelchair and back to doing pretty much what I wanted to do. At 9 months post-op, I was given the go ahead to go back to rollerskating. I am 69 now and some of my skating buddies are in their 70's and 80's, so I consider myself very fortunate to be skating along with them. I also am able to do some gardening which I love, go shopping, go to concerts or games if we can afford it and basically have my life back even though I still have some pain sometimes. I also had steroid injections prior to surgery and sometimes they worked and sometimes they didn't. They are not a permanent solution for most people. I went through all kinds of water therapy and physical therapy with little or no reduction in the pain. I would probably have had the surgery sooner if I had been referred to the right Doctors in the first place.

Scoliosis is a tough journey and I wish you well in that journey.

Sally

debbei
09-28-2009, 05:47 PM
Anne,

I'm about 2 weeks away from 1 year post-op. For myself, it is definitely worth it. I have none of the pre-surgical pain, and the restrictions I have now are minimal. OF course, I'm not the adventurous type--I don't even WANT to wash my car like Jen below :) After all, that's what teenagers are carwashes are for! However, I do go to a 2x per week exercise class, where most of the participants have no idea what's up with me.

I don't know your situation, and it's different for everyone, but I am very pleased with my results. I was scared to DEATH of surgery, and mentally prepared myself for the worst, but for me, the worst simply didn't happen.

I've been back to work since May. Part of me longs for the time when everyone else was taking care of me post-surgery. It passed so quickly that I didn't 'enjoy' the pampering as much as I should have. I was anxious to 'do things on my own'. :)

Good luck,

titaniumed
09-28-2009, 08:30 PM
Hi Anne

Welcome to the forum.

For me, I really didn't have a choice. With 2 70 degree curves at age 49,and progressing quickly with incredible pain, it was my turn.

I also waited since 1975. Wasn't it fun?

Since surgery was recommended back in 1975, I knew all along that my day was coming. Its just getting all your "ducks in a row' that's hard.

What happened with me was the "see-saw" of pain with good days and bad days. What eventually happened was the bad days outweighed the good days. BTW its visa-versa in recovery. As time passes the good days outweigh the bad ones.

I also knew that my "surgical window" was dwindling. I didn't want to do it being any older.

I'm pain free now. Hard to believe but true. My x-ray is in my first post.
It was like popping a large balloon of tension.

Good luck
Ed

hdugger
09-28-2009, 09:25 PM
Ed,

Looking back, if the kind of surgery that is available now were available when you were first diagnosed, would you have had your surgery sooner?

My son has a 50-something degree curve and no pain at 21, so we're trying to decide if there's anything to be gained by pulling the trigger now or if we should wait until he has some pain. (Although, since he's not progressing now, we wouldn't consider surgery until we were sure he was also progressing).

jrnyc
09-28-2009, 09:51 PM
Hi again Anne
i sent you a private message...

just wanted to say that the surgeons telling me they "cant guarantee you'll be pain free after surgery," gives me pause...they say i'll "probably" have less pain than before surgery...one doctor even told me he thinks i'll heal well cause i am thin (lost weight from pain meds) & he thinks thin people move sooner & better....

i guess it is unrealistic to hope for a surgeon to say "you'll be pain free," but the thought of the chance of the same pain without the flexibility (i am still very flexible, despite 40 degree upper curve & 61 lower) stops me in my tracks...i know recovery is very very tough, but if i went into it hoping to end up pain free, i'd have booked my surgery date already & be moving it closer! i treasure my flexibility, every time i get in & out of bed now, & the more i read about surgery! maybe i am being small & petty, but i think seeing a surgery like this in my future gives me an appreciation of what i can do now!

i am so happy for you for your "normal" days..i felt them the 2nd week after sacroiliac injections...so of course, i overdid everything & walked around with an ecstatic grin on my face for days!!

best of luck
jess

Doodles
09-28-2009, 09:59 PM
Welcome to the forum. Yes, mine was worth it. In a couple of days I will be 6 months. I had a lot of work done and mine was getting progressively worse by the month. It was worse at each appt. so I know I would have been in a very bad way. I'm still on pain meds but very slowly dropping a half at a time. I still have very sore times but it's from doing too much. Just this last week I had a number of people at a retirement say how much weight I had lost. I had lost a little after surgery which is coming back on but it's because my massive curves are so much less. I always say they stretched me out--literally--not sure they believe me or understand the whole process but I look much better.

I still spend most of my retired time on exercise and pt, etc. but I knew I would. Had a week of company and lots going on last week so I didn't get in near the hours I usually do. I have been paying for it the last couple days--tight, sore muscles. It was important before and it's important after. I still get zonked by about 3 PM and have to get flat. I felt like I was really falling behind when I've read about some of the more recent ones who had just amazing recoveries and some weren't too far from my age. Everyone is different is the mantra we need to keep reminding ourselves of.

Good luck with your decision. Janet

titaniumed
09-28-2009, 10:19 PM
Hi hdugger,
Good question, and I've never been asked that here.

No.

I was a competitive skier and rode motocross and supermoto. I most definitely would have cracked my fusions, no doubt. Of course, I skied on red line, all the time. When I crashed, I broke equipment.

My pain started bothering me when I was around 28 in 1986. That's when I started Chiropractic. If I didn't have such a great Chiro, things would have turned out differently.

I had twin 50s for years and shot many x-rays through the years. I started having big problems with my pain in May 2000 when I was 42. Things went downhill from there. Was that a pun? LOL

Surgery is so irreversible. Once its done, its done...... You can always do it later.

I came out fine from my surgeries, had a few complications, they are in my threads and posts with some humor. Sometimes, I hit high 9s on the comedic factor, sometimes I crash and burn.

Surgery generally should be a last ditch effort. I don't like reading about complications, it breaks my heart.

Living in Tahoe, I chased powder storms with a passion. The deeper the better. There are lots of pros here, I'm meeting with Wayne Wong tomorrow about manufacturing skis. He is the Elvis of skiing. All of us ski freaks bow and say,"were not worthy" LOL

http://www.youtube.com/watch?v=W1qZnPFOh-g

"We be arcing and sparkin"

I will post more ski vids since winter is right around the corner.
I can ski now but Dr Menmuir hasn't allowed me to crash.
Ed

hdugger
09-29-2009, 01:44 AM
Thanks, Ed. That's really helpful.

It's the complications that stop me in my tracks. If he's progressing and surgery in inevitable, then it's inevitable. Likewise, if he starts feeling significant pain.

But the idea that he could go into surgery, without really having to, and have some big complication is just too much for us to consider. I realize that will likely mean that he'll have a longer fusion, but a longer fusion at 40 or 50 just doesn't hold a candle to a significant complication at 20.

Not that we get to make the decision, of course, just trying to sort out my thoughts. :)

debbei
09-29-2009, 06:01 AM
Hdugger,

You didn't ask me, but I'll respond to the same question you asked Ed. The surgery that was proposed for me when I was 14, and my curves were 40 top & 30 bottom was the old Harrington Rod surgery. My parents wouldn't agree to it and they asked (against Dr.'s advice) that we try the brace. At the time, we thought that the bracing worked. The first month, my curves went down 50%. Totally out of the brace by 18 years old, my curves were thought to be stable at 25-30 degrees each. I had a good normal life, and most of it pain free, until the last year or two before I had surgery at 46 yrs old. Recently I was with my parents and I THANKED them for the decision they made back then. That brace bought me 25+ years for the technology to catch up with me.

Would I have had this current surgery back then at 14 yrs old if it were available? Probably not. We also would have tried the brace the same way. However, if I could 'change the past', I would have gone to a scoliosis Dr. minimally every 5 years to check my progression. That's the big missing piece that I had no clue of. By time I got to a dr. at 46, after having 3 kids, my curves had gone to 66 degrees each. I probably would have had the surgery a little sooner than I did, if I had known that I was progressing.

As far as loss of flexibility, it doesn't really bother me much at all, even with my long fusion. It's my 'new normal'.

Good luck to your son. The point of all of this rambling is just for him to keep an eye on it. If he decided against surgery for now, and the pain begins at some point, he can reconsider his decision.

lapieper
09-29-2009, 06:45 AM
Anne,
I was diagnosed at age 17 in 1971. Told it was too late for bracing, and only minor curves. Never followed up on it. Always suffered from extreme muscle spasms, and, I guess, pain. I knew I had to live with it so never complained. The only person who knew my back was sore was my hubby (of 31 years). My family never knew. I developed a "catch" in what I thought was my hip. Turned out two facets were catching on each other. After three years of pain management treatments - SI injections, I asked why treat the symptom if we don't know the cause. Was referred to orthopedic surgeon (scoliosis specialist), who recommended surgery. First surgery in Apr 08. Removal of one clamp holding rods together in Oct 08. Then repair of T3 fracture, and about 4" of rods and some screws. As soon as I woke up from the first surgery, I knew I had no neck pain. And it only got better from there! I'm as active as I want to be, loving riding of the back of hubby's Harley. I'm only limited to distance and duration for the time being as far as riding. Maybe by March 10, the doc will release me for long road trips. I'm doing everything I used to do. Sometimes I get a little tired, but that's what naps are for. And I still have some muscle spasms, which are slowly diminishing. Boy, was it worth having the surgery!

Vali
09-29-2009, 08:35 AM
Hi Anne,
I woke up the following morning from surgery, and i can tell you that i thought immediately, that this was worth it.

CHRIS WBS
09-29-2009, 09:36 AM
You have to ask yourself how much is it worth it to YOU to stop the progression. Can you live with a deformity that will only worsen? Do you think you will be able to maintain flexibility for the rest of your life as your spine degenerates? Just this Sunday I spotted an elderly woman in her 80s in church who had a very large thoracic curve. Her significantly deformed back with a huge right hump was very noticeable. She was bent over and struggled to stand. Deciding against surgery does not mean that you can lick this and things will remain as they are. There is a reason why God has given us surgeons who can help us.

hdugger
09-29-2009, 10:45 AM
Thanks so much, debbei. That's very helpful.

Of course, if we go in for our appointment over xmas break and find out that he's suddenly 65 degrees, we'll be having a different discussion over the holidays, but I'm hoping that it's stable and that he can wait until he's a little older.


Good luck to your son. The point of all of this rambling is just for him to keep an eye on it. If he decided against surgery for now, and the pain begins at some point, he can reconsider his decision.

ADMoul
09-29-2009, 07:26 PM
Thanks to everyone for the encouraging replies. My dad had a severe thoracic curve as a result of childhood polio and truly lived his entire life without any problems from it. I was under the mistaken illusion that I would be able to do the same thing but once I turned 50, things started getting ugly. This whole journey is something I just didn't expect to be doing. Anyway, the friend of mine who went through it a year ago with the same Doc is a totally no BS person, not one to sugarcoat anything and she's pain-free. Has a very long fusion and doesn't bend much but is pretty much living a normal life. Chris, your screen name is singer--are you a singer and how has the surgery affected that? Both my husband and I are very involved with a choral group, I have studied voice, done some solo work and dearly love it. It's something I would hate to give up permanently or have to limit because of the surgery. I suspect my curve is similar to yours as well. Anyway, I'll know a lot more in two weeks but am one of those people that wants to be as educated as I can before I make a decision.
Thanks again for the pep talks!
Anne

Singer
09-30-2009, 06:53 AM
Hi Anne,

Yes, I'm a church soloist/singer. It's a sideline but I really love it also. How much your voice and especially your breathing is affected depends on whether or not you have anterior as well as posterior surgery. Since I had a very long anterior incision with disc and rib removal, my breath control and lung capacity were compromised. It took me 8 or 9 months to start working again and I can't sing long phrases like I used to (yet) but I would say the quality of my voice wasn't affected. Since I have a whole new body I needed to learn breathing and support techniques all over again and at this point I'm doing well. I'm sure the average listener wouldn't hear any difference.

Like everything else with this surgery, you figure out new ways of doing things you did before.

asccbodypro
09-30-2009, 01:49 PM
Anne,

I would have to say even with the struggles that I am having getting off meds and preparing for my husband to be underway again (Coast Guard) I definitely feel better than prior to surgery. I still have residule pain from the surgery which gets better and better all the time. I have a 19 month old that I am just now at 5 months able to lift again only periodically. We have had tons of help from my husbands mother. She spent the first three months with us and then my husband was home and for three weeks my teenage son helped with the baby and then my MIL came back to help. I will have help through the first patrol which will last 4 weeks and I am dreading the ship routine again at this time in my life but the surgery was worth it. My back was so bad that putting surgery off until the baby was older just wasn't a possibility. Many on here question my surgeon being responsible doing the surgery because of the baby but we just didn't have a choice. I will depend a great deal on my older son when we are finally on our own with no help but that's life and he's a great kid. He proved this summer he is more than capable. All I can say is living in pain all the time is not living....as difficult as recovery can be. It's a year of inconvience.....maybe more for some people but worth it I think. good luck in your decision making process. It's not a easy choice to make I know.