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View Full Version : The big question - when do you know it is time?



Terrik
09-25-2012, 09:49 AM
Both top NY surgeons have told me I need total fusion, my discs are degenerating, I have stenosis at L2 and L3, have osteopenia, am 55 and have an s curve of 62/58 that was at 40 degrees 12 years ago. I have pain, but functional. I am able to work full time, do mostly everything - but they both said the longer I wait, the harder the recovery and further complications can arise. I have the right insurance now to do it at the hospital I would prefer with Dr. Boachie. My job, however, is in transition as most companies are and by next year or so who knows if I will have a job here or what our insurance will be. The practical side of me says do it, you will have it done and be straight and don't have to worry. The other side says, wait until the pain is really bad. When I read about the complications that so many people face after surgery, I don't know if having the surgery will leave me worse than how I am now. Yet, I know surgery is inevitable. But do I jump in and just do it? I know Linda Racine has said that the people who feel better with their outcomes are the ones who are in more pain going in. So, do you wait until the pain is really bad? I will be older, not sure how my health will be and not sure what insurance I will have if I wait a few years. But, I would hate to have the surgery and a year later be in more pain than I started. So confused.

I go back and forth and feel so tormented by it all. I am alone - no family, single and so there are challenges in that and also need a job to support myself.

Any feedback would be so helpful. With gratitude!

LindaRacine
09-25-2012, 11:47 AM
Hi Terrik...

Regardless of when you decide to have the surgery, make sure you start working diligently to increase your bone density. Another indicator of how much pain you can expect after surgery is your endocrine status.

At the SRS meeting this year, one paper (The Prevalence of Postoperative Pain in AIS and the Association with Preoperative Pain), addressed the issue of who has more pain after surgery. While this is in adolescents, I'd bet just about anything that they'll find the same thing in adults. Here are the results:


584 patients were identified. 61 reported pain at or prior to their 2 year follow-up. 13 were within the 6 months post-operative period. Of the remaining 48 reporting pain between 6 and 24 months postop, 41 had no obvious cause for their pain.
.
.
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The patients with post-operative pain were found to have significantly decreased pre-operative pain domain scores.

Regards,
Linda

gardenia
09-25-2012, 11:52 AM
I did not have that problem. It was up to this year that I was hurting constantly here then over there that I seeked help. Because of my double scoliosis, I slept on both sides but never on my tummy or back (impossible to do). Then, my left hip started hurting a lot causing me to sleep on the right side which brought pain there. Can you see the picture?

I had several cortisone shots but to no avail. Then, I started searching on the web to top scoliosis surgeons in the US just to see what they are now offering (for kicks - no one was ever going to touch my spine). Then, I got super impressed with Dr Bridwell as my youngest is in St Louis (WashU in the medical graduate campus as a student). That made things more interesting because I could visit.

I had a lot of frustration with the practice as they are not very warm on your first visit. But, what changed my mind was that Dr Bridwell and his tail of fellows/assistants etc were very studious about my xrays. Dr B was asking them to measure, reposition, and called one xray CRAP - I took my old ones but had a bunch made prior to seeing him. It was one of the ones taken there. So, back I go into the xrays for about an hour of staying still on those uncomfortable metal tables.

Now, there is no return. My insurance UHC denied the surgery because of the use of BMP they denied everything, Dr B. called and by miracle it was overturned. I am so lucky because once one insurance can get away with something the next will follow. You hear about our healthcare system and there is no longer job security anywhere. You can do this while you have insurance and if you do not return back to work after disability, they can do away with your job. (happened to me while on disability from maternity leave 27 yrs ago).

It depends if you job situation is stable, how much you can gamble. However, can surgery take away the pain now? or it will get worse later or stay the same. I took Vicoden for over 15 years but only as a pain killer at the time of pain. 3-4 times a week and never 2 in one day unless it was horrible.

You can't predict the future but only yourself will know best (remember that we have guardian angels with us). My first opinion was from a rather fresh out of school surgeon that had done a fellowship on scoliosis fusion. His advise was to wait until the pain was more severe as the results would be better. He is also 34. Dr Bridwell after looking at my xrays and large curve had no such advise. All he said was something like this: we can correct this and here (not 100%) but it will alleviate a lot of the pain. Period. Then it was my decision.

Unlike Dr Lenke, his practice takes in very few recommended patients and his surgical schedule is no more than 2-3 months ahead. He rather deal with the immediate, fix, then get another patient. It makes the patient feel less stress of having to wait the year, for me 2 months is too long. Any hipcup with scheduling and it would affect the patient's mind more than the practice - so I beleive it is his preferred method of keeping cases fresh and close to his chest.

I don't know if any of this has helped you but the risk, decision, control is in your hands only. It helps to have moral and financial support with the stress of what if.

Irina
09-25-2012, 12:11 PM
Hi Terrik,

Only you know the right answer. I think there are a lot of us in a similar situation and I am one of them, we can share how we made that decision, but at the end of the day you have to decide if the surgery is the right answer for you. Having said that, the fraze that drew my attention in your post is "Yet, I know surgery is inevitable"...

I am 44, with 70/40 curves, have some pain, but nothing major. I made the decision to have the surgery even before I've seen any surgeon and then agonized over it and was going back and forth.

I love to travel and traveling is becoming more and more difficult for me. I work hard and looking forward to my vacation like nothing else. I like active vacations with lots of walking and sight seeing (we'd leave a hotel at 8-9 am and returt at about 8-9 pm). Two years ago we went to Italy and Greece, I could walk all I wanted with some back ache. One year ago we went to Spain, and I had quite a bit of pain, but pushed thru it. This summer we went to NY and I could not walk more than 1.5 - 2 miles (40-50 min) without being in a lot of pain. We could not see all I wanted because of my pain. And I thought: "This is not life. If I cannot enjoy my 2-3 weeks of vacation, what sort of life is it?". I just realized in NY that my quality of life is decreasing and what would happen in 5-10 years?

Yes, I can still do basic activitiies, but I know that it will become more difficult to do just like walking long distance is almost impossible for me already. Then I scheduled appointments with orthopedic surgeons. I went there knowing deep down I need the surgery, but like you, I thought what if I'd be worse than before, I am not in a lot of pain, maybe I just should do cruises and sit on a deck like an old lady?

I also read that people who are not in a lot pain pre-op might be not as happy with their outcome. But I think it is all about managing your expectations. My surgeon at UCSF said that of course, it easier when you operate on someone with 7-8 pain level and bring them down to 3 vs. someone who is going into this surgery with 3 pain level and expects to be pain free fast. Someone in a lot of pain will reach the point of pain reduction sooner than someone who didn't have a lot of pain to begin with. I fully understand that and prepared to be in more pain and discomfort for at least a year, but I believe that I'll be better off in a long run. Because, like you, I know that this surgery is inevitable...

Some people on this forum, who are single, had this surgery. I would think that it's much more difficult going into it without family support and I can't give any advice here... But perhaps, if money allows, you can hire a caregiver?

Best of luck with your decision. I know how difficult it is, but you'll know when and if it is the time.

king14
09-25-2012, 12:35 PM
I know Linda Racine has said that the people who feel better with their outcomes are the ones who are in more pain going in. So, do you wait until the pain is really bad? I will be older, not sure how my health will be and not sure what insurance I will have if I wait a few years. But, I would hate to have the surgery and a year later be in more pain than I

Hi. Welcome to the forum! I am one week post op, 29,virtually no pain before surgery and competed in 10 mile long mud runs/ obstacle courses. I am one of those people that chose to have surgery now while I am young,have good health insurance, and new that i was progressing at a quick rate, also because I could have less levels fused. I think being in great shape helps tremendously in recovery. Thankfully our bodies are strong and we can rely on those squats we did at the gym to stay fit when we are trying to get in and out of bed.
Am I in pain, well yes of course, do I plan on being the first one to know when it's gonna rain, (lol) yes of course. But if you know the surgery is inevitable y not tackle it now when you young? That was my approach. But then here on this forum there are older people that do it with flying colors!! The decision ultimately has to be yours, and you'll know when you get there cause you'll feel good about it !!! Good Luck don't rush anything. Time is on your side !

JenniferG
09-25-2012, 02:38 PM
I'll stick my neck out and say, "Do it now."

Nobody can foresee what's ahead. Our jobs, our future health, etc. Whatever happens you will deal with it but you have the opportunity to fix this one big thing now. It will make anything that life throws at you in the future, easier, having this surgery over with.

I am one who only had mild - moderate pain pre-op. I couldn't be happier with my outcome.

Give yourself a few months to get as fit as you can. I got very fit and my post op bone density result was significantly better than my pre-op result. I was almost 58 at surgery and normally these results go backwards not forwards - and I put it down to weight-bearing exercise that I did leading up to surgery.

Good luck and welcome to the forum.

Jenna.KB
09-25-2012, 04:47 PM
Hi Terrik
Only you knows when the time is right for you.
My curves progressed significantly in a short space of time,i lost 2inches in height,maximum doses of pain relief medication didnt help and my breathing was inhibited so I knew the time was right.
I was told by my surgeon that there were no guarantees the pain would be improved but I personally had to take the risk.
I got an amazing correction and am now at nearly 8 weeks post op.i took a lot of medication for a long time so im still on morphine but who knows you might be different.
If your able to have the surgery now,you are fit enough and work is ok with your decision plus your insurance will cover your surgery it sounds positive. You just need to be sure that you make the right decision for you.Good Luck

Terrik
09-25-2012, 04:55 PM
that those of us who have manageable pain levels going into the surgery, are not as happy with the results because of increased pain. Is that referring to the first year? Or is it that after this type of surgery you are always in some kind of pain and for those like myself who have manageable pain I would see it as worse ? I know the body has much to adjust to after surgery, and the recovery is one unbelieveable nightmare, but my hope is that I will feel good and relatively pain free after a year. Is that more typical or a small percentage?

Can any of you comment on that? In other words, if I was in a daily pain level of an 8, after surgery for the rest of my life am I living with a 3? And those of us who have a level of a 3 now, will be living with a 5?

Hope I am not sounding as confused as I feel.

I love the comment on - Just do it now! If I was totally pain free, I really think surgery wouldn't even be on my mind, despite what the doctors said. But I have enough of a reminder to let me know it isn't getting better. I am terrified of the inflexibility as well - how I will bend, carry things, etc., & hope after surgery to not say- I should have waited five more years when the pain was really bad, at least I would have had more flexibility in my life. I think you all know what I mean.

Irina
09-25-2012, 05:36 PM
I classify myself as 3 in general on pain level. I asked my surgeon: "I undersand that first year will be hard, but would I be in pain 2-3 years after the surgery?" and she said that I should not, but some patients report that they traded one pain for another. I am sure that are some people who were 3 before and 5 or more after, but I think that's the minority. The sad thing about this surgery - there are no guarantees and it could be a big gamble. But I think that odds are higher for the good outcome.

There are some things I wish I have done in my life, but it's too late now. I don't want that to be the case with my back so that 20 years later, I don't look back and say: "Why didn't I have it done when I was 44 and had this option?"

I am interested to hear what other people say.

rockycarm
09-25-2012, 07:00 PM
Hi Terri,

First let me say that I feel for the torment you are experiencing. Making the decision is the hardest and once you finally make it whether to have or not to have the surgery the weight will be lifted. I did respond to you and left my cell phone number if you would like to call me I will be happy to talk to you about my experience. I am presently 4 months post op as of 9/16 and plan on going back to work 10/8. Although I have much to add I will just say now that prior to surgery my pain was intermittent often having to rest in my car during lunch and sleeping at night was tough - always woke up with low back pain. Since having the surgery I am sleeping like a baby - and that is without drugs. I have been off all pain meds for 2 months now. There is no doubt a lot to think about and weigh in making this decision and again once you do you will feel better. Dr. B is wonderful and so far I can say I am pleased i had the surgery. I have gained 2.5" in height. The surgery has reminded me how important patience is and to never take the littlest things for granted.

nanlo
09-25-2012, 09:20 PM
Hi!
And welcome!
The first thoughts that come to my mind are... You have a top surgeon - so your results should be really good (meaning that's encouraging as far as pain goes)...
also, if the future is uncertain regarding your insurance coverage, I think you could see having surgery sooner than later as a great opportunity! If you feel that surgery is in your future, and that good coverage may or may NOT be, that's a pretty huge incentive!!
re:
"I am terrified of the inflexibility as well - how I will bend, carry things, etc., & hope after surgery to not say- I should have waited five more years when the pain was really bad, at least I would have had more flexibility in my life. I think you all know what I mean. "

Everybody is so different - but that's why the forum is great - you get to hear many stories of many surgeries. As far as I am concerned (my surgery was two years ago, fused T1 to sacrum), I feel that I'm not limited in any way! Except for twisting, I can do anything I need to do w/ my straight back - I just do it differently. As for pain, I had severe stenosis before surgery at L4 and 5 - I didn't have much Pain, per se, I would call it more like fatigue. I couldn't be on my feet for very long. I really don't have any pain now - just achy muscles sometimes, but that's a good excuse to get a massage. So I don't know how typical I am, but it's good to hear from everybody.
GOOD LUCK, and I think you should go for it!
Nancy

Confusedmom
09-25-2012, 09:51 PM
Gonna have to add to your confusion here. I went into surgery at a 0 pain level most of the time. At the end of a long day with a lot of standing, I might have been a 2-3 pain. I did have a bout of sciatica for a few months that was worse, maybe 4-5. But, six months post-op, I'm a 2-3 pain all the time. All day long, every day. Pre-op, I took Advil maybe once every few months for back pain when I was PMSing. Post-op I was on narcotics for 4-5 months. I am still hopeful the pain will go away completely. But if it doesn't, I just traded a basically pain-free life for constant pain, albeit a manageable level of pain. I had surgery with Dr. Lenke, so also a top surgeon. I did it because all the stars were aligning--progression was bad, curve 84 degrees, excellent surgeon, great insurance, and family to take care of me. I am presently wondering if I should have enjoyed my pain-free years and postponed surgery. I, too, have osteopenia, though, so that was another factor in the decision to go ahead. My username is because I joined this forum a few years back just as confused as you. Take your time and weigh all your options.

Linda, can you please explain that study a little better? Is this basically saying people like me, who were pain free (basically) pre- op, report more pain after? Is it all just a matter of perspective, then?

Thanks!
Evelyn

Jenna.KB
09-26-2012, 05:19 AM
I would also consider,the longer you wait the bigger your curve could get and the more pain you could be in.if you wait who knows what will happen from now to 5 years!
My surgeon said that the bigger the curve gets the more problems you have i.e I had restricted breathing and could do no exercise.my pain was also a 10 most days and the pain meds didnt work.he also said in some cases the correction is hindered.
Re movement.i was so scared of feeling robotic,like I had a ruler stuck down my trousers or was completly aware of my rods all the time.
Even though im only 8wks post op and still recovering from a T1 to L5 surgery I can honestly say I dont feel robotic.my back feels really flat and straight.i cant slouch or twist but im definately 100% happy with the results of my corrective surgery

Terrik
09-26-2012, 07:55 AM
i never got your message and would love to talk. I sent you another private message with my info. Hope to hear from you. I am waiting for a surgery date (won't know until the end of November) but considering February if I can get my anxiety with all of this under control. Thanks.


Hi Terri,

First let me say that I feel for the torment you are experiencing. Making the decision is the hardest and once you finally make it whether to have or not to have the surgery the weight will be lifted. I did respond to you and left my cell phone number if you would like to call me I will be happy to talk to you about my experience. I am presently 4 months post op as of 9/16 and plan on going back to work 10/8. Although I have much to add I will just say now that prior to surgery my pain was intermittent often having to rest in my car during lunch and sleeping at night was tough - always woke up with low back pain. Since having the surgery I am sleeping like a baby - and that is without drugs. I have been off all pain meds for 2 months now. There is no doubt a lot to think about and weigh in making this decision and again once you do you will feel better. Dr. B is wonderful and so far I can say I am pleased i had the surgery. I have gained 2.5" in height. The surgery has reminded me how important patience is and to never take the littlest things for granted.

leahdragonfly
09-26-2012, 08:32 AM
Hi Terri,

there is a very wide range of folks here...upon reading your post, I thought you might be interested to read some posts from "golfnut" (Karen) who posts regularly. I believe she went into surgery with some similarities to your situation and just won a golf tournament! If you search you can find her posts.

Best of luck,

golfnut
09-26-2012, 10:29 AM
Terri,
Welcome to the forum. Although I second guessed myself about the decision to have surgery for 13 months while on Dr. Lenke's waiting list, fortunately I have never regretted it, even in the early months of recovery. The only pain I had before my surgery was when standing in one place. I tap danced, rode a bike, went to aerobic classes, and played a lot of golf. Yes, I worried constantly that I would possibly never be able to return to my activities that I loved. I know everyone is different and not all are as happy as I am, but i am back to doing absolutely everything I did before surgery. I make modifications in some exercise classes. I know there are some who had the best surgeons, worked to get in top physical shape, and yet had complications after surgery, so there is no guarantee. I was 60 when I had surgery and am happy I didn't wait any longer. Dr. Lenke said the same thing to me that your surgeons said, so I felt the time was right. If you look at the photobucket link in my signature I am the tap dancer on the right. This was 10 months after surgery. There is also a video clip of my first round of golf after surgery. Good luck!

gardenia
09-26-2012, 12:35 PM
1. pain will get worse thru the years
2. deal with the future when it comes do not worry about it now
3. if you have good coverage now, things can chage in the future
4. Most importantly, have a surgeon with lots and lots of experience because they have seen more oops in their surgery to immediately know the cause or know the fix. Honestly and pardon the phrase, is to have a surgeon and his team say Oh Shit.
5. If you have a good surgeon, then believe he is the professional (builder, carpenter, plumber, technician) You know the phrase you pay for what you get.

Good luck to you.

I am on email all the time (ccmail4g@gmail.com). Currently, I am in Baja California Mexico so phone calls are costly.

Gardenia

Terrik
09-26-2012, 02:35 PM
It is helping me in more ways then you can imagine. I feel more certain that I should do it - looks like it might be February (doctor's office will confirm end of November). I could also do it end of April when the doctor returns from traveling, but the more time I have to think about this, the more I think it will drive me crazy. Since knowing I needed this surgery, I feel like my life has been on an anxiety hold. Just the thought of it being in February has me going "oh my God - and the anxiety starts."

Your feedback has really helped me in realizing that many of you were not in horrible pain before your surgeries and you have had good outcomes and the pain you now have is very manageable. It is very encouraging. I joined the Forum last year but the past few months didn't even want to read anything, because it just got me freaked when I heard of complications.

Bless you all.

JenniferG
09-26-2012, 07:08 PM
Terrik,

Everything you say is pretty normal. It's a huge surgery to get your head around, and it takes guts to face it but few have managed to face it without fear. As I mentioned, anti-anxiety meds helped me, the first and only time in my life I've ever taken them and what a difference it made. Getting fit too, helps with the fear. I don't know how that works, but it does. By the time I was very fit, I was no longer feeling anxious, just impatient. I wanted to get the show on the road!

So there are things you can do to help with the anxiety and make the waiting time much more bearable. I suspect going into surgery with anticipation as opposed to terror, is probably a good thing!

susancook
10-01-2012, 06:49 AM
Hi Terrik,

Only you know the right answer. I think there are a lot of us in a similar situation and I am one of them, we can share how we made that decision, but at the end of the day you have to decide if the surgery is the right answer for you. Having said that, the fraze that drew my attention in your post is "Yet, I know surgery is inevitable"...

I am 44, with 70/40 curves, have some pain, but nothing major. I made the decision to have the surgery even before I've seen any surgeon and then agonized over it and was going back and forth.

I love to travel and traveling is becoming more and more difficult for me. I work hard and looking forward to my vacation like nothing else. I like active vacations with lots of walking and sight seeing (we'd leave a hotel at 8-9 am and returt at about 8-9 pm). Two years ago we went to Italy and Greece, I could walk all I wanted with some back ache. One year ago we went to Spain, and I had quite a bit of pain, but pushed thru it. This summer we went to NY and I could not walk more than 1.5 - 2 miles (40-50 min) without being in a lot of pain. We could not see all I wanted because of my pain. And I thought: "This is not life. If I cannot enjoy my 2-3 weeks of vacation, what sort of life is it?". I just realized in NY that my quality of life is decreasing and what would happen in 5-10 years?

Yes, I can still do basic activitiies, but I know that it will become more difficult to do just like walking long distance is almost impossible for me already. Then I scheduled appointments with orthopedic surgeons. I went there knowing deep down I need the surgery, but like you, I thought what if I'd be worse than before, I am not in a lot of pain, maybe I just should do cruises and sit on a deck like an old lady?

I also read that people who are not in a lot pain pre-op might be not as happy with their outcome. But I think it is all about managing your expectations. My surgeon at UCSF said that of course, it easier when you operate on someone with 7-8 pain level and bring them down to 3 vs. someone who is going into this surgery with 3 pain level and expects to be pain free fast. Someone in a lot of pain will reach the point of pain reduction sooner than someone who didn't have a lot of pain to begin with. I fully understand that and prepared to be in more pain and discomfort for at least a year, but I believe that I'll be better off in a long run. Because, like you, I know that this surgery is inevitable...

Some people on this forum, who are single, had this surgery. I would think that it's much more difficult going into it without family support and I can't give any advice here... But perhaps, if money allows, you can hire a caregiver?

Best of luck with your decision. I know how difficult it is, but you'll know when and if it is the time.

IRINA: Thanks for your thoughtful comments. I am in FIJI now. I have the same question and I dread my visit w/ Dr. Hart in January as I am sure that my scoliosis has increased! Again, your comments make a lot of sense to me. Susan

susancook
10-01-2012, 06:51 AM
It is helping me in more ways then you can imagine. I feel more certain that I should do it - looks like it might be February (doctor's office will confirm end of November). I could also do it end of April when the doctor returns from traveling, but the more time I have to think about this, the more I think it will drive me crazy. Since knowing I needed this surgery, I feel like my life has been on an anxiety hold. Just the thought of it being in February has me going "oh my God - and the anxiety starts."

Your feedback has really helped me in realizing that many of you were not in horrible pain before your surgeries and you have had good outcomes and the pain you now have is very manageable. It is very encouraging. I joined the Forum last year but the past few months didn't even want to read anything, because it just got me freaked when I heard of complications.

Bless you all.

TERRIK: Thanks for asking the same question that I have. Best of luck! Susan

susancook
01-04-2013, 05:03 PM
Anyone have anything to add here? Still undecided but I think that the answer is inevitable. I have a second opinion on Monday which may confirm what I feel, or just confuse me more.
Susan

leahdragonfly
01-08-2013, 07:54 PM
Hi Susan,

I have been thinking of you a lot the last few days and wondering how the 2nd opinion went with Dr Hu? I hope well, and that you got all your questions answered.

Take care,