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elysemj
12-01-2010, 10:02 AM
Hello everybody,

My name is Elyse, and I've just joined this forum. This is my first post. I've been reading everybody else's posts for quite some time, and I finally caved in and joined to get some help.

I've had scoliosis for as long as I can remember. I was one of those watch and wait cases (also, by the time I saw a specialist, it was too late for a brace, but not bad enough for surgery). It hasn't really bothered me until the past few years, when I've been noticing constant pain/uncomfort and disgust with the way I look. I saw 2 orthopedic surgeons in Orlando, FL that only recommended physical therapy, and another in Easton, PA that recommended the same. I finally caved and went to PT in Easton, which definitely helped with the pain, but they only prescribed me 8 visits, so after that, what do I do?

I finally made an appt with a scoliosis specialist in Princeton, NJ. Dr. Antonacci from the Institute of Spine & Scoliosis--he has offices in both NJ and NY, and also practices at Shriners in Philadelphia. He looked over my records and said while I don't NEED surgery persay, it would help my pain and the way I look. I left his office with the decision in my hands. I spoke with his PA a few days later for some more information, and I'm going to convince myself to call him again this week for some more questions.

So, now you know my background. I know it's not medically necessary for me to get the surgery, so I know a lot of people would question why I would even be thinking about it. But the truth is, my life is miserable right now. Although there are days that I"m fine, there's also days where I do nothing at night except lay in bed. I also worry about my future. At this point, I do not want to have kids because I can barely keep up with myself, let alone children I'll have to take care of. I'm only 26 years old, but sometimes I feel like 80, lol.

Basically, if anybody can help me with their experiences/opions it would be GREATLY appreciated. To hear from people who have been there and can offer advice is probably the best idea for me right now. I also have a few questions if anybody feels like answering:

*What are some of the long-term effects? Will I be able to play tennis and work out again the future? What are other limitations? How is this surgery going to affect me when I'm 60, 70, 80 years old (or is there no research at this point)?

*Am I going to have problems with pregnancy?

*What kind of care am I looking at for the years following the surgery?

I'm thinking of moving back to FL, so if I get the surgery, it's going to be soon while I have really good medical insurance and also, as the doctor says, while I'm still flexible and can heal better. When I talked to the PA, he acted like it was no big deal (the surgery)--Dr. Antonacci can perform it in 4 hours since it'll only be the top of my back, and I can probably return to work in 4 weeks. I"ll ahve to be careful with lifting and everything for 6 months, but after a year I should be back to (almost) normal.

Again, any help/advice/experience/opionions on anything would be soooooo helpful.

Thank you!!!!!

Heidiv2
12-03-2010, 04:10 PM
Hi Elyse, I was kind of like you in that I was too late to be braced, too early for surgery, curves in the 40s thru my 20's. Then at 34, after 2 pregnancies and 14 years of a job on tile floors, I was at 58 degrees for my thoracic and compensatory in my lumbar and starting in with pain issues. Didn't want to really rely on pain meds and my doc said that the earlier the correction, the less complications. Without surgery he estimated me at 88 degrees or more curved by 60 years old and probably some cardiomegaly and COPD as the years went by. The doctor told me that after 1 year of recovery and fusion complete, no restrictions as far as more pregnancies, less flexibility but not too noticable unless I wanted to do gymnastics or somehting like that. I was back to work after 6 wks (desk job and great boss) and tho I still have restrictions that I have to follow am caring for my 6 year old and 1 1/2 year old by myself. You're welcome to PM me if you have any further questions. HTH

LisaB
12-03-2010, 11:09 PM
Hi Elyse and welcome! There are lots of people on the forum closer to your age who will hopefully respond. But from my viewpoint, if the technology that is available today was available when I was your age or even in my 30's, I would have had this surgery then, rather than in my 50's. Although I got very good correction and have had an amazing recovery, I 'm sure recovery when you're younger is easier. Also, the older you get, the stiffer your spine gets and also you run the risk of getting more osteopoenic as you get older. I think I read that your bones are the strongest in your 30's and then they start deteriorating. Plus my scoliosis kept progressing and would continue to progress had I not done something. It's a big surgery and there are always risks. But if your doctor thinks that your scoliosis is progressing and will continue to progress, then I would seriously consider surgery, especially if you're having pain, too. If you can, get a couple of opinions from the scoliosis specialists. Good luck!

debbei
12-04-2010, 06:26 AM
I know it's a hard decision. If you didn't have any pain, with your degree, I would recommend just waiting to see what happens. But the fact that you are so young and have pain so bad you have to be in bed all day at times---that seems to be a reason to do it now. Do you know if the curve is progressing, and how quickly? By the time I got back to the ortho, we had documented proof that both my curves had progressed from about 30 to over 60 each. They say that pain, progression of the curve, or both are good reasons to have the surgery.

Another thing to consider, if you are progessing and wait, the chances are that you might need a longer fusion to correct the problem.

I can't comment on the pregnancy questions since my kids were all born before, but as far as exercise, you can definitely and should exercise post-op. You'd have to ask the Dr. how long till you were permitted to play tennis.

Good luck in your decision, and free feel to ask anything here.

elysemj
12-04-2010, 10:38 PM
Thank you guys for the replies. It's a pretty hefty decision. I mean, do I NEED the surgery? No. Am I worried that it's going to get worse and unbearable and make my life miserable if I don't get surgery? Yes. However, I'm also worried about it getting worse BECAUSE of surgery.

And I know nobody can make this decision for me but myself. I think it's just harder right now cuz I'm thinking about moving to FL, and if I get this surgery, there goes my being able to move within the next year. And I hear a lot of horror stories and stories from people that can't do things normally anymore--I don't want to risk losing my semi-normal life (with pain) just because I'm taking this big risk. But the prospect of not being in pain anymore and being happier with the way I look is the thing that keeps pulling me in.

As for as progessing, I'm not really sure. It started at around 27 in junior high, and now it's about 40. My dr. said there's a good chance it could progress a degree a year, but he can't say for sure. The only plus of getting the surgery is that it's only in the top part of my back, so the surgery wouldnt' be AS intense as if it was both upper and lower.

Thanks again for the replies--any help/opinions/stories/experiences are greatly appreciated.

jrnyc
12-04-2010, 11:05 PM
hi... and welcome...
i sent you a private message...

have you asked the surgeon about pregnancy after the surgery?
maybe it wouldnt be an issue if you are only fused to the waist...?

it might be good to have several consults with surgeons who specialize in scoli surgery, rather than just orthopedic surgeons... to see if all the scoli surgeons agree on approach needed...
did anyone discuss minimally invasive approach for your situation?

i have not decided on surgery...yet (for my T curve of 42 and L of 61 degrees...just to let you know my own experiences) but have consulted with at least 5 scoli surgeons...in NYC and in LA....
in my case, degenerative disc disease is causing a lot of my pain, besides the scoli, listhesis, hypokyphosis, spinal stenosis, spinal arthritis, etc....

you are young, so i am guessing you do not have complications beyond the scoli...?
i hope the surgeons have discussed every possible approach...?

best regards...
jess

elysemj
12-05-2010, 01:24 PM
Hello,

I asked Dr. Antonacci's (the scoliosis specialist) PA about minimally invasive techniques, and he said there were none for scoliosis. I haven't asked them specifically about pregnancy afterwards--that's a topic for my next phone call--but most people on here are saying it's totally possible, just no epidural (kind of scary, lol).

NYC and LA? That's a big difference. Maybe I should consider going to see one in Orlando next time I visit--to see if it's an option to get done down there in case I do decide to move.

As far as I know, no complications beyond the scoliosis. Although I do believe that most of my problems are caused by it--back pain, leg/feet pain, arm pain, etc. I also have problems breathing (although I was told that that only happens with curves larger than mine, I also have asthma, so that doesn't help). I just don't want to "live with it" now and then end up with mroe problems in the future.

peachrush7
12-05-2010, 01:36 PM
hey elyse,

If you're looking for a great scoli surgeon in orlando, I highly recommend Dr. Joseph Flynn Jr. He's already treated my herniated disc, and will be doing my full fusion in January. He listens, is kind, and has over 30 years experience with adult scoli. Private message me if you have any questions about him or his office.

On a side note, I've lived in FL my whole life, and when I first started having problems, I began a journey all over the state to find treatment. I was first treated up in Gainesville at Shands, and there are some great surgeons there, but since I live in Orlando the drive was just too tough. I've gotten opinions from just about every ortho in Orlando and in my opinion, Flynn is the best here.

Just wanted you to know that you have options down here too! =)

Writer
12-07-2010, 12:50 PM
Elyse,

There's a physical therapist named Dori Rubin in the Ft Lauderdale area who has scoliosis herself and went through a Schroth program as a patient, then got certified as a Schroth therapist. Email: Dori4@bellsouth.net

Search on Schroth method here on the forum for patient experiences. It tends to resolve pain problems fairly soon if the therapist knows what she's doing. Good luck!

LindaRacine
12-07-2010, 03:35 PM
Hi...

I can't answer all of your questions, but I can address a few.

There should be almost zero affect on a future pregnancy, especially if you're only going to have a thoracic fusion.

As far as care after surgery, it's nice to have someone around for the first few weeks after you return home from the hospital. If your surgeon thinks you can get back to work in four weeks, it sounds like he thinks you'll have a very speedy recovery. (I've rarely met folks, even kids, who were ready to return to life in 4 weeks, so you might want to pursue some questioning in that area.)

There's no way of knowing what your life will be like when you're 60, whether or not you have surgery. Thoracic curves are less likely to cause pain than lumbar curves, so your pain might never get any worse than it is now. And, if it does get worse, the good news is that scoliosis surgery is an option at virtually any age these days.

And, by the way, there are minimally invasive techniques for scoliosis surgery, so I'm surprised that Dr. Antonacci would tell you otherwise. With that said, I'm not all that excited about minimally invasive surgery.

Good luck with your decision.

Regards,
Linda

jrnyc
12-07-2010, 05:19 PM
it surprises me that any scoli surgeon would make such a statement...
minimally invasive technique has been around for years for thoracic curves...and is available for lumbar curves, though it is newer for that area...

whether partial minimally invasive approach or complete minimally invasive approach, it is most definitely available...i think it is an excellent innovation, and here to stay.....until better approaches are developed...i personally believe that all surgery approaches for all kinds of human problems improve with time...

i would suggest a consult with a surgeon who tells you all the options available, or who knows rapid recovery is not always what happens with adults...you just need to read forum to see that it is not always the case...

best regards...
jess