New here and need advice!

[patty22]

Hi everyone I'm new here and wanted to get some input from other members who might of had a similar situation to mine. I was diagnosed in my early teens with scoliosis but it was not significant enough for treatment. I was never braced but monitored once a year until I was 18. I remember the dr at the time mentioned surgery but my parents were against it. I went away to college and lived a normal life of occasional back pain but nothing too serious. Fast forward four years later and I was 'throwing' out my back quite a bit more so I decided to see the orthopedic dr. He told me that my curves were in the high 30s so there is nothing they can do for me and that even though I swore I thought my curve was getting worse, he dismissed that idea since I was done growing so 'that's highly unlikely.'. He did prescribe physical therapy and I started a regimen of daily exercise and/or stretching that really helped with any pain I had - honestly I don't have much back pain to this day - only occasional pulling or pinching - exercise really does go a long way!

Fast forward 6 more years and I'm thinking of starting a family. I went to the chiropractor to get some tips on making my back as healthy as possible for during pregnancy. He took xrays and my major curve progressed to 54! I was completely floored. I didn't notice any progression since I didn't really have pain etc. Immediately I scheduled an appointment for the orthopedic dr and he definitely recommended surgery for a curve of 54 and with the history of progression.

I'm of course petrified of surgery - when I was younger I really wanted it for cosmetic reasons but I've learned to live with it for so long it doesn't bother me as much as it used to. I don't want it to progress but I've tried targeted exercises etc and I don't want to get too much older with children and having no choice about the matter. I've talked to some friends who've had the surgery 20 years ago in their early teens and they are all fine with no complications. However when I look up info on the web i see great stories and then some scary stories. I especially hate all those surgery alternative people posting how surgery will leave you handicapped in 4 years! How can that be and they still let people have this surgery?! Just makes things so much harder for people like me to make a decision.

I still need to talk to the original surgeon again and then I will get a second opinion but the first surgeon said my case is very 'easy' and 'straightforward' as far as these things go - I have hardly any rotation, my spine is otherwise healthy, no degeneration, I'm young and active, healthy, etc. I, just worried about long term results/ outcomes. I'm a very active person (used to run 5ks 3x a week up until a couple months ago when advised not to by the chiro) and would like to stay that way and be able to have children a year after (hopefully!). What do you guys think will be the recovery time for someone like me?

If anyone knows what I'm going through and is able to give advice, encouragement I would be so grateful. Thank you so much and please everyone take care.

[Pooka1]

I especially hate all those surgery alternative people posting how surgery will leave you handicapped in 4 years! How can that be and they still let people have this surgery?! Just makes things so much harder for people like me to make a decision.

Those people who know they are lying have no shame. The rest are simply ignorant and have no clue about how to approach the research literature. The only people who can tell you the straight answer on the long term after fusion are orthopedic surgeons who are, by no coincidence, the only people trained to treat scolisois in a scientific way. The present hardware options donīt have a long term because they are too new but were designed to specifically address the shortcomings of older generation hardware. Even certain fusions using older hardware are expected to return the patients to the general population in terms of never needing a second surgery and living a normal life. Itīs really more a function of where the curve is in your back than the hardware itself in terms of predicting the most likely long term outcome, at least for hardware developed in the last few decades as far as I know.

I, just worried about long term results/ outcomes.

Ask your surgeon. Ask a few surgeons. Donīt ask anyone NOT trained in surgery like chiropractors and PT types. Chiros expecially seem to feel they can get a toe hold in orthopedics although orthopedics is a surgical specialty and therefore is medicine. Itīs very strange actually. And the bunnies suffer.

Good luck.

[debbei]

I understand how you felt floored--I was the same way. You could have knocked me over with a feather.

I believe that my 3 pregnancies made my condition worse. At 23 yrs old both curves were about 30 degrees, and they both ended up at 66. Of course I can't prove pregnancy made it worse, but it sure seemed that way to me. I remember after each of my kids was born I swear the 'special' pain I felt in my spine was worse that the birth pain. I complained for days about that, but then forgot about it till years later.....

My most important piece of advice would be to go to a really good, scoliosis-specialist doctor, not just some regular run-of-the-mill orthopedic. I said this to someone else last week...you want to go through this only once, and not have to go to a scoliosis specialist after someone else messes you up.

http://www.srs.org/find/

Good luck and don't forget to ask us anything.

[mabeckoff]

You must use an experienced surgeon. Do not play around. Use a surgeon who knows what they are doing. You only have one back

Melissa

[djkinkead]

I agree with Melissa, find a surgeon who specializes in spinal fusion and does a lot of them. Search the posts for who people use. I think Linda Racine, the moderator has a list. Someone has the URL for it.

[titaniumed]

Patty

It sure is a wake up call when your curves enter the surgical range and a scoliosis surgeon says that you are a candidate for surgery. It now becomes the main thought each day, wondering what is going to happen. Many of us here have waited many many years for our day.

Being scared is completely normal, we all go through it. I guess I was fortunate to have had 34 years to think about it, waiting for technology to improve through the years. Things have improved leaps and bounds in the last couple of decades...

You do have plenty of time to make your decision. The one thing you don’t want to do is wait too long, and potentially get rejected due to various reasons compounded by age. Even though they do scoli surgeries on seniors, it is best done at a younger age.

Your decision should be your own decision. Since this will be the most important decision of your life, its best to read and post here, buy a few books, talk to a few “scoliosis trained” orthopedic doctors, and absorb what you can to help with your decision. My surgeon wanted me “online” learning what I could before my decision. We talked for 2 1/2 years before I said lets do it.

Keep reading and posting
Welcome
Ed

[patty22]

Thank you everyone for your advice. This is really so helpful. I'm so glad we have this forum. Reading through the responses and knowing that everyone here knows exactly what I'm going through honestly made me cry from relief/emotion. It's so hard explaining all of this to someone who has never gone through this before.

I agree with all of you regarding finding a great surgeon. I live in Charleston, Sc. When I did a search on the forum, it seemed that anyone who lived here went out of city to consult with a scoli expert. I even saw a post where Linda Racine, one of the moderators said Charleston, Sc is not a "hotbed" of scoliosis drs. haha.

The surgeon I saw here works at the Medical University of South Carolina (MUSC). His name is Barton Sachs and I found him using the SRS doctor finder. He apparently used to work in Texas and moved here relatively recently. He seemed extremely knowledgable. I asked him how many of these types of surgeries has he done and he says he averages about TWO a WEEK. I was so surprised! I didn't think there were that many people out there with this problem to warrant that many surgeries. (?) I'll have to ask him when i go back if he is talking about spinal fusion in general or spinal fusion specifically for scoliosis. He showed me the hardware that is used in the surgery, his preliminary opinion of where I need to be fused (I don't remember exactly - darn memory!), the average rates of correction, basically the whole sha-bang. When I said I might want to get a second opinion he was all for it and gaves me the names of doctors around SC/NC. I said I was thinking about going to Miami, florida since my family lives there he even gave me the names of doctors there off the top of his head. So I'm assuming this guy knows his stuff.

aahh decisions, decisions. I'll do some more research and keep you guys posted!!!


hdugger -

I did have my old MRI from an orthopedic doctor that I saw back in 2004 which I showed to the surgeon I saw a couple weeks ago. He confirmed the degree of curvature as being in the high 30s. I also had two xrays done of my back recently - one by the Chiropractor who measured it at 54 and another by the orthopedic surgeon who measured me at 55. I also showed the surgeon the xray the Chiropractor did and he confirmed his measurement. I'm definitely getting a second opinion though. I guess in my heart of hearts I knew this day would come. I just tried to ignore it especially since the orthopedic dr. in 2004 said "it would never get worse." That didn't seem right to me with my experience - I knew my body was changing. Funny how sometimes we non-dr.'s know better than the dr!

debbei -

Thank you so much for sharing your experience. This whole present ordeal started because I wanted to get pregnant! Part of the reason I want to get this over sooner rather than later is that I'm scared my curves will progress during pregnancy. The first surgeon I saw warned me of that possibility - because of the hormones secreted during pregnancy that relaxes your joints. Plus I can't imagine having a kid and then going through the surgery while the kid is still an infant - too much to deal with! I'm a little bummed because I so wanted to have kids already. I think I've delayed a lot to have them (undergrad, grad, career) and then when I finally decide it's time - BAM. Major surgery.

[peachrush7]

Hi Patty!

I just wanted to add my experience to all the good advice already shared on this thread. I am close in age, and like you haven't had kids yet. I found out my curves had progressed to 52 degrees last year, and my surgeon said he thought I would need the surgery in 10 years or less.

It is a frightening thing to have happen, especially when you have been told your whole life that your curves "will never get worse once you stop growing". But I can say honestly I am SO happy I had the surgery now. At that high of a progression, it is more than likely you'll need the surgery soon, and that was a big deciding factor for me. I didn't want to have a baby and then need the surgery while that baby was little. Recovering from this surgery is almost a full time job for a few months, and taking care of a child while recovering must be the most difficult thing! I was thankful that I could just focus on getting better, and not worry about not being able to pick up or carry a child for 6 months or so.

I am active now at 7 months post op, I exercise 3-5 days a week, work full time, and am in the process to adopt a baby hopefully in 9 or 10 months. (I have had 4 surgeries in 4 years, and want to give my body plenty of time to heal before I try to get pregnant, and we were already planning on adopting at some point, so we just decided to do that first before we try to have biological children). It was the hardest thing to decide to do the surgery, but it has been an absolute blessing, and now I wish I had done it earlier!

It is a wonderful feeling to have it behind me. It is an adjustment, but so far for me, the benefits have far outweighed the few small downsides. I don't feel like a robot, I often completely forget about the fusion altogether, and I really enjoy the way my new body looks and feels. I was never that self-conscious about the ribhump and crooked shoulders, but now I really LOVE my straight back and long waist.

Some of my other reasons for doing it now were:
-My insurance covered it completely
-I found a wonderful SRS scoliosis surgeon who is local to me
-I was healthy and strong enough to do the surgery now (you never know what the future holds!)
-I had support from friends and family
-I was progressing

I have more details about all that on my blog which may be helpful for you...and please feel free to email me any questions!

I hope you're able to find the dr and find peace in a decision that is right for you!