PDA

View Full Version : Surgery when there is not much pain



leklein
04-11-2008, 09:35 AM
Hi, all. I'm curious about the experience that those of you who are adults had regarding advice to have surgery. Briefly, I wore Boston brace as a teen and had many years and 4 children and now at age 44 have curves of 54T/61L, yet I do not have significant pain. I get achy, but not much more. Not enough to even take ibuprofen, as it typically goes away if I lie down for 10 minutes or so.

I have seen doctors at Georgetown (Lauerman) and John Hopkins (Kebaish) and they both seem to favor waiting and watching. Each cleared me to go two more years before I return to them (for JH now that is another year away). My curve appears to be progressing slowly at this time. Neither dr. felt there is a significant difference between operating on me at 44 or 54, but both expressed 70 degrees as a "milestone" where they felt they start to see some of the correction benefits lessen. It seems to me that many on this forum might disagree about there being a difference between having the surgery mid-40's vs. mid-50's?? Perhaps the dr.s are referring more to the success of the surgery than the recovery time.

I vascillate between: a) if younger is better for the surgery and it is VERY likely I'll need to do this some day, let's go ahead and do it; and b) let's ride this out as long as we can before having surgery while quality of life is still great....Things are complicated by the fact that my youngest child is only turning 4 this summer. Even in scenario a) I am thinking it makes sense to wait until he is in Kindergarten at least (another 1-1/2 years). As I have 4 kids ranging from age almost 4 to just turned 14, even under scenario b) it is likely that I will still have kids at home when I move forward with the surgery, albeit older and less of them in another 5-8 years.

Any thoughts? Any adults had surgery without much pain but significant curves, but because they know that they will need at some point and surgery is easier if younger?

Secondary question: As I consider getting another opinion (Dr. Boachie-? in NY seems to come up a lot and would not be a horrible distance for me), do you have thoughts on the benefits of the proximity of the surgeon to your home? i.e. Lauerman is 10 min. away and Kebaish is 1 hr. and both have, I think, excellent reputations, however, are not the dr.s I read about again and again on this forum for the surgery like Lenke and Boachie.

Thank you so much for any thoughts you might have on these topics. I realize, like so many things in life, there is probably not a wholly right or wrong path and am just looking for some extra feedback from those who have "walked the walk"!

Take care!

Geish
04-11-2008, 10:09 AM
Hi Laura!
I am one of those with out much pain that opted for surgery. I noticed about 3-4 years ago that I was starting to look a little smooshed but didn't think the curves were too bad. Then came the leaning to the left all of the time. Then some mid back pain that I hadn't had before.

I finally went to my GP and told him I though the scoliosis was progressing. He referred me to physically therapy. Once there I asked to see the surgeon and if the surgeon said Pt was the fix I would be back to do all of the PT they wanted.

The surgeon looked at the xrays and told me I had 2 30+ degree curves to the right and a 60+ degree curve to the left with rotation. He said surgery wasn't needed immediately but it could be done anytime in the next 5 or so years.

I opted for surgery ASAP as I am going through a divorce and knew I had great insurance right now. Not sure what the future hold insurance wise. I also knew the longer I waited the worse i was going to get. I made the decision in July and was scheduled for December. I have no regrets about having the surgery when I did. It was the right decision for me. By the time it rolled around I was tired all of the time and mid back pain had increased. I have 2 daughters that helped me during the start of recovery. My oldest just turned 20 a few weeks ago and she went back to school when I was 6 weeks post op. My youngest turned 15 days before my surgery and is very involved in school activities so I was left home alone at 6 weeks. I think I did just fine recovery wise.

As for how far away your surgeon should be, mine was a 2 1/2 hr car ride away (That's if there is no traffic. The trip home from the hospital was 4 1/2 hours. What a nightmare.) I chose him because he was in my insurance network and he was a SRS member. His name has never been mentioned here before my surgery as far as I know. However I absolutely love him and am so glad I used him. He also trained under Dr Boachie. There are a lot of great surgeons out there so look fo rthe one that is the right fit for you.

Feel free to PM me if there are any questions I can answer. Good luck!
Alicia

Singer
04-11-2008, 11:01 AM
Hi Laura,

If I were you, I would track the rate of progression for a couple of years while your youngest child gets a little older. In general though, I think the younger the better: I personally think there is a big difference between getting surgery in your 40s as opposed to your 50s, just from what I've observed on this forum.

My surgeon is a 2-hour car ride away, and it's been a bit of a hassle, but I felt strongly that I wanted Boachie to do my surgery.

The decision to have the surgery is a little easier when you DO have pain...on the other hand, pain will almost surely come eventually IF your curves are proven to be steadily progressing.

Susie*Bee
04-11-2008, 11:33 AM
Dear Laura-- Welcome to the forum! You've asked some tough questions... and I really don't feel like I can give you any advice-- just let you know a little about my own situation.

I remember at age 27 that a doctor "mentioned" I had scoliosis; I had back aches over the years, never took any pain med or OTC pain reliever for it. In fact, I never did anything-- like mentioning it to my (different by then) doctor, until I was 54 (!) -- at which time I figured my arthritis was affecting my back a lot. So I got by with aching and discomfort, but livable back aches till then. I have no idea what my curves were earlier, but at 54, my structural curve was 46º. By 56 it was at 52º (and yes, I realize that could be reader error, but the x-ray looks worse to me too). Plus I had DDD, severe lumbar stenosis, and a sideways shift between two lumbar vertebrae. I could still get by, but the past few years had REALLY increased the aching and general back fatigue I was having. I think once you hit menopause, it accelerates. My scoli doc said eventually I would be missing a couple days of work a week, etc., if I didn't do something about it-- beside the fact that my quality of life would continue to go downhill. I was already noticing things like: I stopped taking desserts to school in a glass 9x13 pan because they were too heavy for me, I couldn't pick up babies anymore in the church nursery, I made excuses not to go to the basketball games (didn't want to sit on the bleachers, plus my back was always soooooo tired by evening...), etc. So I decided I'd better go for it before my bones got too brittle or my curve got too much worse. I'm so happy I did. I still have limitations-- and the recovery is definitely taking longer than I had expected, but I am getting better and better all the time-- and very happy about that.

As far as kids go-- I had three of my own, spread out over a 7 year period, so not quite as spread as yours. The activities they were involved in (and that you want to share in!) just keep getting more and more. There is no good time for this surgery! My (possible advice) thought would be to wait until your youngest is in school for the full day-- K or 1st grade-- (is your kindergarten full day?)-- and then maybe that would be a good time. High school years, heading off to college, weddings, etc., are all things that will be coming down the road for you sooner than you think. Time flies when you have kids! I am glad that I was able (or too dumb to realize differently!) to hold out till two of mine were married and on their own and the "baby" was fairly far along in college. It has disrupted my working for a year, so that's a bit of a hardship, but is working out. With your curves, I don't think that will be an option for you. You should have a quicker recovery and better correction when you are younger. I would also say 40's rather than 50's...

I traveled a little over 2 hours to see my surgeon. But there are no closer places that I'm aware of, and I was pleased with my surgeon's credentials and experience as well as the rankings for the hospital. I'm about half way between Chicago and Indianapolis-- two hours either way... The trip home from the hospital was rough, but do-able. It's a long drive for my appointments, but my hubby does the driving and we enjoy the day as much as we can and eat out afterward. ;)

I wish you the best as you try to figure out what to do. It's a tough decision!

loves to skate
04-11-2008, 01:43 PM
Hi Laura,
Recovery rates are probably as varied as there are people. I am 4 1/2 months post-op and am doing great. I was off my pain meds at 2 1/2 months post-op. I didn't have scoliosis as a youngster so I would listen to the advice of the younger folks on this forum as to when to have the surgery. The important thing to remember is to keep yourself physically fit before the surgery. I just wanted you to know that older folks can tolerate this type of surgery. Best wishes.
Sally

CStadler
04-11-2008, 03:24 PM
Myself I am glad that I waited. I didn't run into any severe pain or progression until I was 50. I wouldn't have wanted to be much older but I am in very good shape for one of the older ones (gosh only 52 is that really old? :confused: )
I had 4 kids and there are so many things we got to do when I wasn't in pain that I don't think I would have attempted after the surgery.
Like all the rides at Disneyland, wrestling with them, cliff jumping, horsebackriding, skiing, and even an 11 day coastal hike.
If there were other reasons like insurance, severe or progressing curves then I would consider it now but if nothing is changing I personally would wait and enjoy the time you have.
I have now had 2 surgeries and my children are all grown and I am recovering just fine. 3 weeks yesterday for my last surgery and all I need for pain is one T3 a day.
Being in very good physical shape is so important prior to these surgeries.
Just another opinion. Carol

leklein
04-12-2008, 07:30 AM
Thanks to everyone who responded... It helps so much to get feedback from those of you who have gone through this. While I am still a couple of years out from surgery, even if I decide to go ahead with it on the early side (assuming pain or curve does not increase dramatically), it is amazing how time flies by---

Geish, Chris and SusieBee, thank you for your thoughts. Often you hear just one thing in someone else's story that resonates with you or seems particularly applicable to your situation even though you have not shared all the details of your life, so that adds to the "data" you are mulling over and becomes an important part of your decisions. Thanks for sharing your stories and inspiration.

Sally and CarolS, thank you for letting me know it can be done successfully by "older" (I agree, it is hard to define someone in their 50's as older!) people. I know what you say is true about keeping in shape. I have always been active, but made a more concerted effort to work out faithfully since learning a couple of years ago that my scoliosis was going to be an issue in adulthood. I try to do the eliptical/fast walking, abdominal exercises and yoga for scoliosis 4 days a week (plus some weights). I figure it might help me keep the curve from increasing as fast (though no dr.s really confirm that) at best and, at the very least, will keep me in good shape for the surgery when it comes.

I am so pleased for all of you that you seem to be doing so very well in your various stages of recovery from the surgery!

I'll keep all this in my memory bank as I see how back things and life things progress over the next couple of years.....From some of the responses, it seems the pain may continue to increase and help make the decision about the "when" for me.

Some of you respond so faithfully on here and I wanted to applaud you, after watching this forum for the last month or so. You really are doing a community service in my mind by taking the time to help others with your experience. I know it can take a lot of time to thoughtfully respond to questions. So THANK YOU!

(OK, now off to get the 3 older kids out the door for soccer, while creating an appropriate celebration for my 3 year old who just FINALLY got poopies in the potty!! Life calls!!)

Singer
04-12-2008, 08:04 AM
An appropriate celebration???

Everyone in the family stands around the toilet and applauds, of course!! LOL

Susie*Bee
04-12-2008, 09:51 AM
Laura-- the "yay!" is for you and getting through all this family stuff-- and important decision-making! (Am adding this sentence, through editing...--I absolutely LOVED being a stay-at-home mom with my 3 kids, so I didn't mean "getting through" in any negative way!) And I'll bet the "yay!" can be for the rest of us who are glad we're done with potty training days! :D

You did get a lot of advice to mull over. You're so right in knowing that there is no real sense of urgency at this time. Just keep your eye on how you're doing, keep your bones as strong as you can, and keep in shape. Even though I am a little overweight (let's say 15-20 lbs. pre-op, add another 10 now, unfortunately) I still felt I was strong and healthy. Besides the exercising you are doing, let me share with you one other story... so you can keep this in mind too, if needed. I always thought my arms and legs were very strong, but after my surgery I discovered some things to the contrary. First, let me say that everybody's surgery is different... some are more extensive than others, etc. I think mine was a biggie. It left me very weak and I had no endurance. I had planned to return to work in August, but there was no way. If only I had a desk job, it would have worked out. But as an elementary school librarian, I needed to be on the go all day long with classes, along with dealing with at least 200-300 books daily... and getting them re-shelved, etc., including down at floor level. This is where the exercise comes in. I discovered, much to my embarrassment, that I could not get down.... This again depends on how far you are fused, but if it includes most of your lumbars, you will not be allowed (nor can you anyway) to bend over. So I've been working for the past few months on increasing leg strength-- so I can squat. What I had thought was "strength" in my legs was actually "endurance"... I could walk a lot, push hard with my legs, etc., but I could not lower my body and keep my back perpendicular to the floor--and then get back up! :rolleyes:

It is really important to keep your back flexible, your body in shape, including your arms and legs too, because they will be called upon to make up for the challenges you will have post-op. Lots of people have no problems with that, but thought I'd mention it just in case there are others out there that bend over rather than squat to get to things that are low...

Best wishes -- keep us posted on how you're doing, and enjoy your family! The years will fly by so quickly!!!

loves to skate
04-12-2008, 11:46 AM
Hi Laura,
Amen to what Susie just said about strength in the legs. That's where if you wait until the pain gets too bad and you can't exercise vigorously, then you start to lose strength in the legs. My legs were very strong when I was roller skating but because of the pain, I had to stop skating 5 months before my surgery. I did water therapy to stay strong after giving up skating. Unfortunately I came down with a very bad virus 5 weeks before surgery and was too sick to go to the pool. At age 67, you lose muscle strength very fast, so I was also very weak after my surgery. I still can't squat. I can get down on my knees, but I can't get up unless I have something with which to pull myself up. I don't start PT for another month and a half. Fortunately, muscles have memory, so I am sure that the PT will be able to address that issue. I'm glad you have time on you side.

CHRIS WBS
04-14-2008, 12:48 PM
Laura,

I believe you have seen a couple of top-notch surgeons (the best doctors are affiliated with the best hospitals), and if I were you I would follow their advice. However, did either of these surgeons indicate how long of a fusion you would require if you opted to have surgery now rather than waiting? Since your lumbar curve is currently at 60º, you might already require a fusion to the sacrum, but if having surgery now rather than waiting meant sparing even one or two levels of your lumbar spine from fusion, then now might be a better time to have surgery. I would question these doctors about that. On the other hand, with advancements in spine surgery rapidly evolving all the time, perhaps there will be even better procedures within the next 10 to 15 years. My brother who accompanied me when I scheduled surgery has a background in engineering and he is surprised that more advancement has not been made in the area of motion preservation. Perhaps that is something future patients will be able to benefit from.

In my own case, it took my thoracolumbar curve to reach 75º before I began to experience symptoms. Three summers ago it literally felt like my spine was collapsing and I would come to work and have to leave after a couple hours. That summer I spent a great deal of time just lying in bed. I could not eat out of fear over what was happening to me and I quickly lost 20 pounds. One doctor told me that my spine had probably shifted creating that sensation. It was very scary and that’s when I started researching and discovered this forum. My curve was last measured at 80º so I feel that surgery is my only option at this point; and as I am nearing 60, time is not on my side. While I often wish I could have had this taken care of sooner, I still believe events occur in our lives when they are meant to. Ten years ago I was busy going back and forth to the nursing home where my father spent three years suffering from Alzheimer’s disease. I loved my father dearly and I thank God that I was spared from back pain during that time so I could be there for my dad.

You will know when the time for treatment is right for you.

Chris

leklein
04-14-2008, 03:16 PM
Chris, thanks for your message....The doctors really did not talk specifics with me. Interestingly enough, I seem to be the one most interested in talking about doing the surgery sooner rather than later. Both the dr. at Georgetown and John Hopkins did not seem at all inclined at this point to do surgery, although both acknowledge it is very likely at some point. I will ask the question about the length of the fusion and whether or not the passage of time would be likely to make the length of the fusion farther down, with all the additional complications that may bring. Thanks for suggesting!

For me, I don't think I'm really talking in the realm of 10-15 years, although I do think about the advantages of seeing how much progress medical science makes with the surgery over time. I think it is much more likely that I will have the surgery in the next 4-7 yr.s depending upon curve and pain progression, even though (as I noted in my original post) I sometimes wonder if we should be moving forward even sooner. As one of the respondents and you replied, it is hard to give up the quality time I now have with my 4 kids since I do not have any significant pain and, although there are many great outcomes from surgery, it certainly carries its share of risks too. This is especially true given that the surgeons I have seen do not seem to think there is a significant difference in the success of the surgery at my current age vs. mid-50's and even to 60. I know that presumes you stay healthy! They do say that keeping bone health is critical and must be monitored. So, maybe I have to "pay" for the extra years of time I get before the surgery with a recovery that is longer/harder as it seems that may be the case as you get older. So many factors to evaluate, but at this stage hard to want to press forward when the surgeons are saying wait and watch. I think when the curve is at the higher levels (60 degrees+), it can all change on a dime anyways (i.e. no pain changing to significant pain pretty fast). As I said before, that may determine the timing more than anything. (I certainly know waiting carries some risks too.)

Good luck with your surgery....I agree completely that sometimes things happen when they are supposed to and that sounds like it is true in your case. It was something I thought about on the post by Summer about whether to have kids before or after surgery. I did not know my curves were increasing over the 10 years I had children and in some ways I am thankful for that. Even though I am probably going to have to go through this major surgery at some point with kids at home (undeniably harder than without kids at home), I would not want a path that would have given me less than the 4 beautiful kids I have. Sounds like you feel the same about the time you were able to spend with your father.