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golfnut
06-02-2010, 11:11 AM
I have worried for 5 months and have 5 months left to worry and hope to God I'm making the right decision to have surgery. I am physically active now with golf, tap dancing, bike riding, classes at the Y and realize that it will take up to a year before returning to many activities, if ever. I am encouraged by so many (Ed comes to mind) that returned to an activie life. Today, in my Turbo-Kick class, I'm thinking I won't be able to do those moves, just as I thought the other day in Zumba, and the high impact steps in tap dancing. My main love is golf. I will be able to return after a year, hopefully, but since I'll be fused to my sacrum, it's going to be difficult to ever have a 6 handicap again since a good swing involves twisting. As soon as I typed that, I'm thinking about my girl friend who is paralyzed from a car accident years ago and I'm worried about a score in golf! Pretty pathetic of me. I guess I just have to hope I don't have complications and the decision for surgery will give me better odds later in life for an active life. My other big worry after reading blogs, is the pain medications and all of the problems they bring when trying to wean off of them. I also worry about my husband giving up so much to take care of me and our dogs (always my job). I hope I don't chicken out of having the surgery and then when I'm too old, regret that I didn't go through with it. I know I have a good surgeon, so I need to have positive thoughts, I'm just scared!

rohrer01
06-02-2010, 11:22 AM
I'm sure that from what I've read about Dr. Lenke, he wouldn't advise surgery unless you really need it. Gosh, I'm 41 years old and upset because no one will do surgery. I have only a 46* curve, but it has just recently started progressing. I have pain in my curve, so that is why I want the surgery. No one seems to think it will help my pain at this point. I don't know anything about what your problem is with your lower spine, but again, if Dr. Lenke thinks you need it, then you probably do. It would be better to get it over with now, then to wait until your health fails. Just my thought. November is a long way away. If you're not having pain now, you really need to weigh the pros and cons of surgery. I'm sorry you are going through this struggle. I think that spinal fusion takes a great mindset that you have to prepare for before you can commit to having it done. I think this is probably what you are really struggling with. Best wishes for a healthy and active future!

CHRIS WBS
06-02-2010, 12:03 PM
I personally feel that the ones who might most regret surgery (at least in the short term) are those individuals who are athletic and very physically active, especially if they require a very long fusion like mine. But on the other hand, if you have a huge curve that is progressing, how much longer do you think you will be able to remain active? I remember on one of my surgeon consults, I expressed concern over not being able to bend with such a long fusion, and the surgeon reminded me that with my big lumbar curve I would not be able to bend much longer anyway.

I had absolutely no problems associated with drug withdrawal. My surgeon is very stringent about not over-prescribing narcotics. He has seen too much dependency and addiction. My pain was appropriately well-managed and at about eight weeks I required only occasional over-the-counter pain relievers.

Be thankful you have someone to worry about who will be your caregiver. I had to face this major surgery alone.

golfnut
06-02-2010, 01:38 PM
Thanks to both of you for making good points. I know that it would be a bigger gamble without surgery and that Dr. Lenke is extremely skillful. Yes, Chris, I am extremely lucky to have a husband who will help me in recovery. I will start counting my blessings and enjoy my next 5 months and then br anxious to get the surgery behind me. Chris, I am so glad to hear that you didn't have any problems with drug withdrawal. Last night, I had a friend ask why in the world I would have such an extreme surgery with all that I do and I guess that just got me thinking. Thanks, again.
Karen

Back-out
06-02-2010, 02:15 PM
Yes, I'd have to say it IS a gamble (even Dr. Lenke says there's a ten % risk of GREATER pain, I believe), However, it's one where the odds are overwhelmingly on your side especially in hands like your surgeon's.

What's more, it's important to realize that as with so many things, doing nothing is ALSO a treatment choice with its own odds. Depending on your age, condition and what you do instead of surgery, those odds can be bad. The only difference is that the damage from doing nothing, doing something so-so (exercise - of mixed utility) or outright harmful (poor posture, narcotics abuse), is to a degree, reversible while the surgery is NOT.

Perhaps constructive, specialized exercise (usually quite demanding) may be a form of temporizing that does no harm, - may in fact, depending on your age, do good. For a dedicated minority, it may even allow one to avoid surgery altogether.

Surgery carries risks of its own, of course, and they appear to be lasting (e.g., infection can occur many years after surgery with no "all clear"). Permanent lifestyle changes are knowable in advance but they appear to be very modifiable depending on how well we adapt. "Wait and see" can be prudent to a point, especially if something constructive is done meanwhile. Long -term, every coping strategy is a treatment choice.

Very little in life is neutral, I'm afraid, and all risk:benefit analyses need to account for this. I figure we just make decisions as well as possible based on estimated odds, but never forgetting that there's no opting out of risk even by inaction!

:)

Singer
06-02-2010, 02:50 PM
Karen -- the main thing to keep in mind is that with a progressing spine, having the surgery is a gamble, but NOT having the surgery is a big gamble too. I spent months and months weighing my options and finally came to the conclusion that it seemed fairly certain that eventually I was not going to have a normal spine or a normal range of activities without the surgery, and there was a statistically good chance that I could at least halt the progression if I had the surgery.

Bear in mind also that it took three whole years of recovery for me to be able to garden again -- something I loved and despaired of ever returning to. In the past month, I've planted flowers, mulched, weeded, and pushed a wheelbarrow around. I'm careful and do things a bit differently, but my back can take it, and I have less pain than I did doing the same things before surgery.

If you're anything like me, you'll probably continue to second-guess yourself all the way into the OR, and you'll be relieved to get it over with. Not easy, but ultimately worth it - in most cases.

Susie*Bee
06-02-2010, 04:04 PM
Karen-- just to add a little more about the drug addiction/withdrawal part. I took hydrocodone and neurontin for about 5 months, tapering down in both how often and how much, as my doctor directed me. I had no problems at all weaning off or with any kind of withdrawal. I did need the pain medication that long-- some of us do. In fact, I still occasionally have some bad days and take a tramadol for pain. I'm a bit green when I read of those who never seem to ache. I mostly feel good, but I sometimes ache and my back has been doing a lot of popping lately and aching in the center and lower part. Oh well! Anyway, it's possible to take pain meds and not have a problem with them. I'm sorry you got the impression that people do.

ADMoul
06-02-2010, 04:21 PM
I am not nearly as athletic as you, but I think we all worry about what we're no longer going to be able to do. But the flip side of that is being able to do things (yes, differently) without pain. I worried that I couldn't bend down to leash my small terriers--but now they know to come to me in the chair for their leashes. I still can't put their bowls down to feed them (balancing dog food bowls with grabbers does not work) but I fill their water bowls with a bottle. Those are just little, everyday things but kind of an example of making life work with a recovering back. The things you want to do, you'll find a way to do. (for me, it's being in the pool.) Although I don't play golf, my husband is an avid golfer and I've often said to him what a challenge it must be to relearn that game after fusion. But if that's your passion, you'll find a way. As far as drugs, I had one day where I felt kind of chilly and flu-like and that was it. I stopped narcotics at about 4 weeks, but I think that's different for everyone and you shouldn't feel guilty if you need medication for an extended pd. of time. Your Dr.'s office should help you manage that. I don't envy you having so much time to think about this. I think I would have been driving myself crazy if I had to wait that long. Take care and enjoy each day!

LynetteG
06-02-2010, 08:34 PM
I totally agree with Anne - I used to worry so much about all the stuff I used to be able to do, and worried I wouldn't be able to do again. Like Anne said, it's just a matter of re-adjusting and doing things a little differently, but still being able to do them. The reason I feel I had horrible withdrawals from weaning off the meds, is because nobody really spent much time explaining to me how to take the meds when I got home, and I was given a ton of narcotics which I took like clockwork every four hours - way too much. Then I had no help with getting off the meds, so that is why I had problems. As long as your hospital/doctor explains in better detail how to take your meds, and then helps you get off the meds with hydrocodone or whatever it is that some people have had help with on here, it seems to take away all those withdrawals. I wish I'd had more help with the meds, because for me it was the worst part of this whole journey. Also don't worry about when you get off the meds, everyone is different. I was always told I have a very high pain tolerance - maybe that's why I was able to get off the meds quicker. Others have different levels of pain tolerance, so it's not a comparing thing at all, the most important thing is to feel comfortable and not in pain.

titaniumed
06-02-2010, 09:20 PM
Karen

Everyone has made good points here so that really doesnít leave me much to say other than the fact that the main thing here is adaptability.

While walking, if it starts to rain, that is a very annoying and uncomfortable situation, till you realize that you need to keep walking to your destination and have no choice in the matter. After you are soaked, it really doesnít matter much anymore.....You keep on walking.

You will learn to adapt in your own ways and things are only hard when you donít know. After you learn and have experience, then things are a "piece of cake"

Putting on socks seems impossible right after a full fusion. In the beginning, things like this can get you down, but after a while, after you adapt, these things really are easy. I donít even use a stool anymore, and I put them on standing on one leg. Ski boots were a tough one to figure out, but now I have that figured out. I'm sure, in time you will figure out how to adapt to do the things you want to do.

Chris (WBS) is right about athletic people regretting surgery, "In the short term". This was something that was bothering me right after surgery, but with a strong determination, I slowly adapted and regained my ability to do the things I wanted to accomplish within my limits....

Ed

golfnut
06-02-2010, 09:32 PM
Hey, you guys are something else! You are just a special group of people (my new scoli friends) !!! You have all made such good points and my attitude from this a.m. has totally changed, thanks to your encouragement and comments that make so much sense. Thanks, again!

debbei
06-03-2010, 06:16 AM
Karen,
like others said above, for me, I think not having the surgery was a bigger gamble. My curves were both alrady 66 degrees and progressing like crazy. And in my case, I felt that I knew what the future would be--I witnessed the last 15/20 years of my grandmother's life. She was all twisted up, shrunken and in pain due to her scoliosis. I didn't want to end up like her. So here I am, over a year and a half post-op, and I am very happy. Others here tell me that I will continue to improve, which amazes me because I feel so good now.

I was a big BIG worrier about this prior to surgery, but at some point, you just have to put your faith in your doctor's talents and believe that you will come out on the other side ok. After all, you've got one of the best surgeons.

What does Dr. L say about golf post-op?

golfnut
06-03-2010, 11:06 AM
Debbe,
I'm glad you are doing so well. I just got off the golf course and my friend suggested I get a second opinion about having surgery. I told her that I have one of the best scoliosis surgeons in the country and like others said, he wouldn't recommend it if he didn't think it would improve my quality of life down the road. Both of my grandmothers lived to ripe old ages (98 & 103), so I hope to also. My dad is still playing golf at 89. Yes, I'm sure you are right that it is a bigger gamble not having the surgery.
Dr. Lenke said I would only be able to chip and putt until about a year, so maybe I'll improve in that area. Thanks for your response. It was really encouraging!!!

Back-out
06-03-2010, 02:02 PM
Dr. Lenke said I would only be able to chip and putt until about a year

Looks like these surgeons really need to know about all sports to be able to make specific recommendations! (Not having any idea about what chipping and putting are).

Or maybe he plays a mean game of golf!

Don't know if ALL your relatives played golf, but if so it would be a wonderful recommendation for the game. What amazing longevity stats! I wish my ahtleticism expressed itself in a game or sport...Alas, I've been a dedicated dancer and fitness buff.

Exercises, running, swimming, weight-lifting, gymnastics. Those are, I'm afraid, all activities I 'll have to stop completely - or at least, so much that nothing much remains. If only there were modifiable equipment I could use to adapt, but I fear no shoes could be springy enough to absorb the impact of much of anything (but the right socks and fit, will continue to matter in walking, just the same).

Somehow, I don't think after-surgery is a good time to take up new sports anyhow. Not ones involving appreciable bending twisting or possible risks of falling or impact. Even if I enjoyed such sports, I don't see how I could build up a skill set from scratch with so many limitations.

I once loved ping pong, but that's not very much movement unless you're really, really good. I'm looking for something aerobic and safe. Ideally, I"d have liked something involving music and core fitness too. Guess I can play music while I play croquet or shuffleboard :p Maybe Tai Chi. Suggestions?

Best of luck to you, Karen!

golfnut
06-03-2010, 02:32 PM
Amanda,
When I met with Dr. Lenke in December, he told me that he had taken golf lessons in the summer, but never had time to play, but at least he has an idea of the golf swing and what is involved with pivoting and the follow through. I definitely don't want to rush it after surgery and risk damaging anything. Golf is an awesome sport where, if you remain active, you can play for years. I'm playing in a 4-person scramble with my 83 year old mother, her 83 year old friend, and her 61 year old daughter. Last year, we placed 2nd in the same tournament against much younger teams.
Dr. Lenke told me that I would be able to do anything except gymnastics (which I don't do). I'm a little concerned about the high impact of my tap dancing, but my main love is golf. I may have to have the pro tweak my swing following surgery since it will have to be different. I would surely think that swimming would be allowed and probably encouraged following surgery. I'm thankful for the YMCA where I can at least use some of the equipment to get in shape. Everyone knows how active I am and I actually had this "jerk" tell me that I would gain 30-40 pounds after surgery since I wouldn't be able to do anything the rest of my life. Well, you can believe that I'm going to prove him wrong. Thanks for your reply.

CHRIS WBS
06-03-2010, 03:57 PM
Dr. Lenke told me that I would be able to do anything except gymnastics.

Easy for him to sayÖhe hasnít had a total spine fusion. I wish surgeons would not tell that to their adult patients. Letís get real. There are limitations following this surgery. Several years ago I was learning ballroom dancing. I canít do that anymore as it involves good balance and twisting and bending capability. I doubt that someone whoís an avid tennis player can resume that activity without some compromise. I think in time you will know what you can and cannot do and with some modification be able to return to a sport you love. But to expect a fused spine to perform like one that is fully flexible is unrealistic and I think itís only fair that a surgeon advises his patients so.

Doodles
06-03-2010, 09:49 PM
Chris--I think you are being honest and realistic about this. At least at this point of being out a year plus, there's a lot in my old exercises that I don't think I can ever do again. I've tried to do pilates/yoga type things and I just can't. Trying to sit on floor with legs out is impossible because unless I support myself with my arms behind me I fall backwards. My PT didn't think that could change and wasn't too optimistic that I would get much flexibility back from here on out. I'm glad I wasn't into all the sports things some are--but I miss not being able to do some of the exercise classes which my body needs or I just puff up! I do other exercises/walking/etc. etc. everyday but they don't seem as good as the old ones. I don't know it could be since I'm in the older range; some seem to do such amazing things I just can't believe it! Janet

leahdragonfly
06-03-2010, 10:32 PM
Back-out,

You mentioned that you think you will have to give up swimming...Why couldn't you swim after you were healed?

I swim laps 5 days a week for about an hour, and my surgeon said I can go back to the pool after a few weeks and start to walk in the water, then slowly resume swimming. I don't know if I'll still be able to do flip turns though (maybe I will later, just not sure), but other than that, I plan to return to swimming.

Karen,

I think this is a really great thread and I have many if not all of the same concerns as you. I just scheduled my surgery for October 11th, T10-pelvis. I worry too about what my new back will feel like, and what I will do if I hate it at first (nothing much to do about that obviously, other than adapt). But, I look forward to having a much more stable spine that will not progress or degenerate any further (in the fused area anyway). I am an active mother of two young kids and several pets, so I will have to get back to speed as soon as possible to keep up with all of them.

Good luck,

Back-out
06-03-2010, 11:58 PM
Back-out,

You mentioned that you think you will have to give up swimming...Why couldn't you swim after you were healed?

I swim laps 5 days a week for about an hour, and my surgeon said I can go back to the pool after a few weeks and start to walk in the water, then slowly resume swimming. I don't know if I'll still be able to do flip turns though (maybe I will later, just not sure), but other than that, I plan to return to swimming.


I was referring to before I'm completely healed, Leah! And it's the bending and twisting I'm concerned about as that's indispensable to my sloppy freestyle. I must confess I'm a bit concerned about collisions in the lanes too. I remember they always used to occur "in the olden days when I was active" :D

Especially since one is blinded by the water and can't wear a brace to warn people off, I don't see how it's avoidable. Even after fusion is complete, seems that would be a problem, no?

Mind you, I'm not crazy about swimming, either - at least, in a pool. It turns my hair green and takes SO much more time out of my day. All that showering, shampooing and hair drying, plus driving there and changing - which will undoubted to take longer (wriggling into a suit, with a long fusion MUST be harder) . It WOULD be nice to have a pool, of my own of course!

Also, I want something weight bearing to ward off osteoporosis. Even Olympic swimmers have been shown to lose bone density because of the buoyancy of the water.

But many thanks for your comments. I should have made my context clearer. :)

joyfull
06-04-2010, 12:16 AM
I've read these posts with great interest, even though it's 1:05 AM and I have to work tomorrow! You all have made such good points. I am having my surgery in 5 days with Dr. Lonner.

I have waited 30 years to do this. As I have posted before, I don't have, and have never had, any pain. I'm doing this to stabilize my 85-90 degree thoracic curve and hopefully improve my chances of having a good quality of life later on. My posture is good and most people don't notice my curve since I wear loose clothing. This is a really, really hard move - a leap of faith in my surgeon, actually. Plus, my two sons, ages 26 and 20, don't really get why I'm doing this and I feel as if I'm causing them great anxiety and stress. I am going through a difficult divorce after a 38 year marriage and my sons have no contact with their father, so they feel especially threatened by my decision right now. I do have some guilt about it.

My curve is pretty rigid, so I'm wondering if I will even notice the difference in the T2 to L4 fusion.

Your stories have given me the courage to go through with this and to assure my sons that I will be OK. The impact you all have had on so many lives is amazing. Thank you again, Joy

Back-out
06-04-2010, 12:42 AM
Plus, my two sons, ages 26 and 20, don't really get why I'm doing this and I feel as if I'm causing them great anxiety and stress.

I'm very interested in this comment as I have two sons, 21 and 30 and I'm wondering what is reasonable to ask of them, in help and support (I'm quite alone).

I'd love to know your approach to this. Of course, I'm realizing your situation is very different as my son's father and I have been divorced forever. Your sons OTOH must be afraid they're going to lose their only real, ie, remaining parent!

Funny, how kids can see something like this as being about them instead of you. But then when it comes to a marriage unravelling (and especially to Mom) in my experience, kids just don't realize that Mom/Mommy whatever is NOT invincible and has serious needs of her own.

Maybe to hand feed them specially chosen encouraging literature about successful outcomes, plus stories about women who neglected their curves (and became completely disabled ) - would help them see they were getting something out of it too Namely, a mother who will be stronger and healthier - and more able to be there for them long into the future. And without "being a burden" on them!

They need to know that you will be there no matter how old they are, especially when going through this trauma. You don't say if they had much relationship with their dad before the divorce, but they must be going through a great deal now. Doesn't help that they're guys and "not allowed" to talk about their pain and fears.

Poor "kids". And poor Mom. If I were you I"d feel an almost equal mixture of compassion for their pain, and anger that they weren't thinking of my needs.

(And that's more or less where it' s at with me, though they're so different from each other, I can't really generalize.)

Best of luck. You're going through so much. I hope you can get over the guilt feelings though it goes with Momship. You really deserve this. It's their FATHER who sounds to be screwing them over. Why oh why do Moms always get blamed and even blame themselves for everything - even taking time for themselves, in this courageous, difficult way?

I can scarcely imagine not realizing that - but then emotions aren't rational, by definition*. I'll put in my usual plug for a few meetings with a good family counselor - it's my training, and I think everyone can benefit. I sure hope you have a great support system apart from your sons. I HATE having to ask mine for help, knowing it stresses them badly.

Best! Amanda

* But then I put off "emergency" neurosurgery for two years while one son in crisis needed me! :rolleyes:

LynetteG
06-04-2010, 04:14 AM
Wow Joy - I didn't realize you're only five days away from surgery. You'll do great and you'll be happy you did this. You're in my thoughts and prayers, and your sons will be happy for you when they see their mom with a new strong back and great posture.

loves to skate
06-04-2010, 11:01 AM
Chris--I think you are being honest and realistic about this. At least at this point of being out a year plus, there's a lot in my old exercises that I don't think I can ever do again. I've tried to do pilates/yoga type things and I just can't. Trying to sit on floor with legs out is impossible because unless I support myself with my arms behind me I fall backwards. My PT didn't think that could change and wasn't too optimistic that I would get much flexibility back from here on out. I'm glad I wasn't into all the sports things some are--but I miss not being able to do some of the exercise classes which my body needs or I just puff up! I do other exercises/walking/etc. etc. everyday but they don't seem as good as the old ones. I don't know it could be since I'm in the older range; some seem to do such amazing things I just can't believe it! Janet
Janet, Did your Physical Therapist teach you how to stretch your ham strings? I would think that would help you be able to sit on the floor unsupported. Just guessing. Sally

Doodles
06-04-2010, 01:05 PM
Sally--Yes, he did as a matter of fact. He said it's OK to go ahead and do those (which I do) but he said even if I did this for hours on end he thinks the pay off for more flexibility would be almost nothing. He's still blown away by my x-rays. Can other people sit on the floor with legs spread and not fall over backwards that are fused to pelvis? I try it a couple times a week thinking I'd tighten up abs. I told pt that and he said the abs weren't the problem, it was just all that was fused. I used to do this all the time with lots of stretches. I could never bend over flat on the floor like pilates classes told you to but I could do quite a bit. I'm having a bad four weeks here. Everything on the left side hurts. First it was neck and shoulder for a week, then 2 weeks plus of hip & leg and to ankle. This morning leg was slightly better and it was back in the shoulder and neck. Every motion hurts. I can't figure this out. If it continues thru weekend I think I'll call the surgeon locally who has seen me twice since surgery. Janet

JenniferG
06-04-2010, 05:12 PM
"Can other people sit on the floor with legs spread and not fall over backwards that are fused to pelvis?"

I'd never tried that but just did it to see if I could. Getting down to the floor is very hard for me, I have to hold onto something and lower myself down or do it on my knees then roll over - all very awkward. But I can sit on the floor with legs apart and not fall over. It's very uncomfortable and I lean to the left, but I can do it. It's just not something I've needed to do so far, so hopefully I never will again!

I'm sorry to read you're having troubles Janet, I must read back and see what it is.

lapieper
06-04-2010, 06:57 PM
Just plunked myself on the floor, and yes, I can sit on the floor with both legs stretched out. I do NOT fall over backwards or forwards. And I had my first back surgery Apr 08. Most recent was Dec 09, where the lower portions of my rods and the pelvic screws were removed. I am currently doing water aerobics, an hour daily, five days a week, and I just started walking 1.5 miles a day on my treadmill (30 minute walk). I am thrilled with the results, although I do still have muscle spasms. I have not taken any muscle relaxers in the last 2-3 weeks. I am now able to ride on the motorcycle for about an hour before I need a break, and we have ridden about 600 miles in a weekend. Looks like I'll be on a road trip for our vacation this year. FINALLY. Life is a risk, and the surgery did not firghten me. Went in with a posiitive attitude, figureing it was my "job" to heal, and the doctor's job to do it right! Good luck to all those facing surgery soon.

LynetteG
06-05-2010, 08:59 AM
Wow - I just tried to sit on the floor, and I couldn't flatten my legs on the floor, they are sooo stiff. I need to start stretching my hamstrings. I kept on falling backwards as a result.

loves to skate
06-05-2010, 11:47 AM
I can sit on the floor with my legs stretched in front of me open or closed without falling over, but it is not really comfortable for me. I never could bend enough at the hips to really bend flat to the floor. It must have something to do with the structure of the hip joints. I never could do a back bend as a child either, or a split, so was never very flexible. I have to stretch my hamstrings every day to maintain what flexibility I have.

Lynette, you are still early on in healing to start stretching your hamstrings. Wait until you are cleared by your Doctor.

Sally

golfnut
06-05-2010, 04:14 PM
Janet,
I'm sorry to hear your having pain issues more than a year after surgery. I hope it improves and you find out what has caused it. I am lucky that I live close to Dr. Lenke's office in case I run into problems.

Doodles
06-05-2010, 09:15 PM
You guys are so great. Didn't expect you all to try it! Jennifer, I know what you mean about getting down on the floor! Sounds like this is something different for everyone too. Lynette, be careful--you're way too early for this, I think. I have had a better day today. Now if I can recreate it! Thanks, all. Janet

mbeckoff
06-05-2010, 09:25 PM
I know that at one month out I am way too early to try it

Melissa