Having second thoughts

[Rosella]

Maybe it's natural to have 2nd thoughts about having this type of surgery? I've been reading a lot of posts and it seems like everyone who had surgery were having substantial pain and/or problems. I was having intense pain in my right S1, but the episodes have decreased dramatically with gentle chiro work. I have no pain in my spine and have never taken any meds. I feel a twisting in my left ribcage and have occassional stomach discomfort- possibly due to the scoliosis? I am a ballet instructor, most people can't tell by my appearance that I have a problem, and I still enjoy taking class. I have had to cut back on what I do, but I can still do most things, both in the studio (stretch, bend, jump, extend my legs above 90* front and side- back extentions are gone) and out (gardening, hiking, motor boating, household chores). My curves are 70/105/45, and my fusion will be from T1-L5 of sacrum. Have been moving down the road to prepare for the surgery, but now I'm starting to wonder if at this point my quality of life after surgery will decrease rather than improve? I know the surgery has given most of you your lives back, but I'm afraid of losing mine! (Am I whining? I'm sorry) I know that it's wise to do this while I am young(er)- 45- and healthy... any thoughts?

[LindaRacine]

Hi Rosella...

I'm glad I don't have to make that decision. I sympathize that it will definitely be a tough one.

I've said this so many times, but I'll say it again, the people who have good outcomes tend not to spend any amount of time in forums. So, I think we have a tendency to think that everyone has complications. That's simply not even close to true.

With that said, your fusion will be very long, and you will certainly lose a lot of flexibility. You need to determine if you can live with the loss of flexibility. Or, if you decide against surgery, you need to determine if you can live the rest of your life with such large curves.

Best of luck with your decision.

Regards,
Linda

P.S. If you didn't have second thoughts, I'd really worry. :-)

[sweetness514]

Rosella...

I will share my opinion at this time. If I were you, I would still wait. I think you love your life and dancing is you passion, and if you can do it without too many problems, continue a bit more so while you're still young and fit!

You will NOT have the same flexibility after and you can get this procedure in a few years. Wait to be at least in more pain.

I have heard from two people who don't visit forums. One is a male, 30 and had surgery at 14. He said that he has been in pain most his life except in his late teens and is now seeking aid for his aching back. Another is a 51 year old female, who had surgery by the same ortho as me, she's fine, but had to have revision surgery a year after her original one 10 years ago and never went back to work, but I don't blame her she likes to take it easy. As for me sometimes I do regret having the surgery. Sure I'm better than when those last months before surgery but lost so much flexibility. Not to mention my biggest problem was my leg/knees/hip/heel pains and the surgery didn't heal that, orthotics did, 6 months after I had surgery All in all I still don't regret but I was in debilitating pain. I also believe that at some point everyone with fusions have some sort of pain or side effects such as DDD, even if it is true for most poeple with non fusions, I know that at least 80% of the popualtion will or has some sort of back problem in their lives. But fusions are not natural IMO.

That's my opinion for now, but maybe your ortho can tell you more and what the risks are if you wait Good luck.

[Tall Paul]

You need to determine if you can live with the loss of flexibility. )

I'm in the same boat as Rosella. And when I ask questions, I get the same answer...can I live with the loss of flexibility. The problem is that I (we) don't really know what thats like. Only someone who has lost flexibility can explain...and it certainly wont come from the doctors because they have no idea.

So for my own benefit and hopefully for Rosella what does this really mean? While I know all fusions are different and at different levels, can anyone who had a T1-Sacrum help us understand? Driving, sitting, walking, putting on socks, sleeping, sex, gardening, swimming, etc.

Thanks!

[Karen Ocker]

T4-sacrum flexibility-me

I am 63 and prefer the, in my opinion, reduced flexibility to the profound deformity I had. I live a perfectly normal life in all spheres just mentioned.

Since the healing is SOOO long the surgery itself makes the reduced flexibility seem more profound, in the beginning, than it actually is. In actuality the few things about flexibility that were annoying were the difficulty cleaning out my mother's oven which is in a corner and turning myself while driving. In the beginning I bought a wide rear view mirror which slides over the installed one but now I seem to be able to get by without one (3 years after surgery). Cutting toenails are limited by my eyeglass prescription not my mobility. I just can't see them that well. I can do strenuous hikes and can stand all day at my job without pain/fatigue.

The decision for surgery is so personal. My surgeon said if I waited too long a more extensive surgery would be needed. I personally would not wait for more pain/deformity/deconditioning thus heading for surgery in less optimal condition. Curves that are increasing will not stop for a chiropractor or because you think they are big enough already.

Another fact: remember the spinal cord is encased in the spinal column; the more severe the scoliosis the more trauma that cord must endure during the straightening process along with the spinal nerves which are attached.

Karen

[KRIS ATKINSON]

Rosella, I just looked at your bio and at your first post last March. I notice you have been advised that your scoliosis will likely become more debilitating if you wait much longer for surgery. That is why my daughter had surgery when she did. My curve is only around 10 and has been all my life, whereas my daughter's was 75 when she had surgery. I deal with the all of life's aggravations at age 50, including overweight, foot problems (plantar fascitis), pariodontal disease, but at 50 I am not at risk for a debilitating situation like you are. It sounds like you have been advised your scoliosis will likely become debillitating, not just the aggravation like mine is, in the future. I hope you find relief in your decision. As Linda said, most people come out of surgery fine, so have faith, if you and the doctors have decided surgery is the best for your life, it sounds like a good decision. Hope I wasn't too confusing. God bless you, Kris

[LindaRacine]

Hi Paul...

It's difficult to describe the loss of flexibility... I think mostly because the loss is relatively gradual. The first 6 mos. post-op, I felt incredibly stiff all over my body. Once I started loosing the stiffness, I started noticing almost imperceptible differences. For example, I could no longer put pantyhose on in the same way. I had to lay on my back in bed and bring my legs up. Also, I have a large bathtub surrounded by a platform. To get into the tub, I have to swing my legs over while leaning back. I finally figured out that the difference is that I can no longer sit with my legs out in front of me unless I have support for my back. For example, I could not sit on the floor without something behind my back.

Also, how much flexibility one loses is based on how many and which vertebrae get fused. People with short fusions usually report that they haven't lost much flexibility.

Hope that helps a little.

Regards,
Linda

[KRIS ATKINSON]

Linda, in comparison to your surgery, I thought I'd share what I have observed about my daughter post-op at 3 months now. She has slept on the floor at a slumber party recently and was able to wiggle her bag up further on the floor. I have seen her sit on the floor frequently to play video games with no back support. She also squats down with her legs and without bending her back to pick things up on the floor. She was fused something like T3-L3. She is 15, which of course also makes a difference in flexibility (I can't do the things she can at my age of 50, with my added weight, for instance). I believe she still cann't turn her back or her neck as far as she did before surgery, but then again, I can't turn my neck since I got whiplash in a car accident 2 years ago. It doesn't bother me at 50, like it might bother a teenager, though. Kris

[HGD24]

Rosella,
I too debated on whether or not to have surgery due to a lack of experiencing pain. My curves were showing signs of progression though. My primary care phyiscian decided to send me to my surgeon after noticing in my chart, that I was losing height (at age 30). I talked openly not only to my primary care physician (who is an Osteopath and has a sister with severe scoliosis), but also with my my mother-in-law (who is a nurse) and many family members and friends in the medical field before making my decision. It also helped that I know of two people who have had this surgery (although it was many years ago) who are living normal, productive lives. I work with their family members and was able to talk to them about what life is like after the surgery.

I was very well informed by my surgeon of all the pros and cons of having the surgery so I felt like I had all of the necessary information to make the right decision. There were definitely times right after the surgery when I thought "What have I done to myself" but those days are far behind me now.

I have always been very active and very flexible so loss of mobility and flexibility were major concerns to me too. I was told by my surgeon that I wouldn't lose much of the flexibility post-op and had a tough time believing him but trusted his experience and knowledge. 8 months later, I have to say that I have gained a remarkable amount of flexibilty back! People are truly amazed at how much I can do at this point. I did have some physical therapy along the way and it helped tremendously.

You have a very difficult decision to make. I think the only thing you can do is have a really good talk with your surgeon to be sure that you have all of the information you need to make this decision. I would also talk with anyone else you trust who is knowledgeable about scoliosis and the outcomes of this surgery. No one can make the decision for you, but talking with people you trust, can help you make the decision that is right for you.

Like Linda said, a lot of us come here to ask questions when something doesn't feel right or when something is bothering us or gone wrong, but not many of us post threads stating that we're feeling really good and doing really well. You have to read these types of websites knowing that most people are coming here to find out if what they are feeling or experiencing is normal or to vent frustration. There really are a lot of success stories too.

Good luck with your decision Rosella!

[sweetness514]

I think if I had to choose between the debilitating pain that I had and the loss of flexibility that I have now, I prefer having much less pain, and "accept" the loss of flexibility. That's not even a question.

As far as flexibility goes, I'm sure it's different for everybody. I'm still the most flexible that I can be, and even compared to others with fusions, as many orthos, doctors and therapists who have examined me have told me and from what I can still do, but it depends on what we are talking about. I had two major passions before I had the surgery. One was dancing(as a hobby) and the other was drag racing VERY low and small race sports cars and as much as I have tried, I can't do either of these things anymore. Right now I need revision surgery (for broken hardware) and it's normal that I'm even less flexibel(for now, it will come back), but even those most pain free years that I had as much as I could dance, it was never at the level that I used to, and had to sell my sportscar. Again, it is something that was hard for me to let go of, but in MY case, necessary since the pain pre op for me was worse. Laying on the floor-like having a pic nic- are harder to do now as well, and my neck and the upper vertebreas that are not fused are more stiff than before, due to the surgery.

I guess we're not really helping you the way you would like us to Rosella, it is your decision and a hard one. I just like to mention that it's not all black and white for everybody and there are pros and cons. My opinion would be to wait a few more years(and get the surgery eventually, not never getting it) since you are fit and not in much pain, but that can only be adressed by your ortho, as he knows if that is too much of a risk.

I did go in the hospital at 18 to get surgery and backed out, but I only had a 50ish curve and was pain free, so it's not the exact same thing you're experiencing. For me that was one of the best decision of my life as I lived it up until I was 25, and I didn't even lose flexibilty in my spine like the orthos told me, as they reduced my curve to about 13 then (it was 60ish though).

Hope you see more clearly and take the wisest decision for you

[shelley]

Hi, Rosella,
The purpose of my post is to reassure you that there are people out there who have had instrumentation and fusion with good outcomes. I was first diagnosed with scoliosis when I was 6 years old (1958). I wore various braces and had physical therapy throughout elementary school. None of it stopped the progression of the curve. When I was 14, I underwent surgery consisting of the insertion of Harrington rods and fusion. Prior to surgery, the primary right thoracic curve (of the S curve) was 87 degrees. This curve was reduced to 37 degrees after surgery. The fusion runs from T-3 to L-3. In those days recovery required 6 months in a cast; the first 3 months in bed, followed by another three months of gradually increasing periods of standing. The six month period following removal of the cast was aimed at gradually increasing activity levels to return to normal routines. That was 39 years ago. In the ensuing years I have led a full and normal life. I was not an athlete before my surgery, and I certainly didn't become one afterward.
However, after menopause I began working with a trainer at a gym near my house. I work out three times per week. I also try to walk (2 miles) once a week. My stamina and lung capacity have improved since I started at the gym. I can bend over and touch the floor with my fingertips. I can sit on the floor with my legs extended in front of me and I can touch my toes. What I can't do is any exercise or movement which requires an arched back. I feel that my surgery gave me the life I might not have had, because my ribcage had started to compress my left lung. Rosella, each person has to decide whether surgery is the right option. I know that I have no regrets.

[Rosella]

Thank you

I'd like to thank everyone for all of your advice, comments, suggestions and caring and hopefully this might be helping others, as well. I continue to balance the "pros and cons" and will keep in touch!