New to the group (Scoliosis)

[balletdawn]

Hello all -
I just joined the group and wanted to introduce myself. I have scoliosis that has been passed down through at least the last 4 generations of my family. Right now it is at 45 degrees and progressing about 1 to 1 & 1/2 degrees per year. Two doctors have recommended surgery but I'm still on the fence as far as that goes. My dad's scoliosis was pretty painful before he passed away in his 60's and I'm weighing whether I will be better off with or without the surgery. I've always been very active - I used to be a dancer & have been teaching for 20 years, I snowboard & cross-country ski in the winter and climb, hike & kayak in the summer. I still take an occasional ballet class and do yoga and pilates. It's all getting a little less fun, but I'm still at it. I'm sure my back would be worse off if I hadn't stayed active my whole life.

Anyways, I joined the group to get a little mental support as I wrestle with this decision and also to read about others' experiences. I've known that I have scoliosis for over 20 years, but I feel like I'm getting an ultimatum since the pain is getting a lot worse. Looking forward to getting to know you all.

[KBear]

Welcome Dawn and sorry for the circumstances. Surgery is a tough decision, as it's a major operation and only you can decide if that's what needs to be done. I would suggest lots of research and second opinions before making any decision. Living in pain is no fun either, so it's up to each person how much is enough. Having surgery has it's own consequences as does doing nothing. I'm personally in the group that is so glad that I had surgery, I'm 100% pain free and living life again. I had pretty much lost my ability to do much of anything prior to surgery, so it was a no brainer for me. When you are still maintaining an active life and not severely limited, that makes the decision a lot harder.

Love your profile picture, we have another member, Gilbert P who is also in Jackson Hole, WY. My step brother lives right across the mountain from you in Driggs, Id. Very pretty area, though a little too cold for me.

Best of luck,
Kathy

[Gilbert P]

Dawn

You have been given some great advice, I too am looking at surgery but not in Jackson been their done that and things did not go so well.

Their are lots of great surgeons out there its up to you to find the one with experience for your own personal condition.

Talk soon

Gil

[balletdawn]

Kathy, so glad to hear that your surgery helped you so much. My situation is definitely a bit of a grey area and may take some time to determine. And yes, it's cold here!!! -12 on my way to work this morning.

Gil, good to see another Jacksonite here. I hear you about surgery in Jackson! It's been recommended that I go to either Boise or Salt Lake City. Outside of my doctor's recommendation, what resources have you gone through to find a doctor that suits your needs?

[Santorini]

Outside of my doctor's recommendation, what resources have you gone through to find a doctor that suits your needs?

Hello,
I've heard that Dr. Shay Bess in Denver is very good with scoliosis. You can Google him for more information but he is widely known here. I wish you the best with your decision. This cannot be an easy one.

[Justin]

Hi Dawn,

Welcome to the Spine Patient Society.

From my reading, most Spine Patients with "long fusions" to correct scoliosis do well. In fact, I recently met a woman that had a spinal fusion from her cervical spine down to her sacrum to correct her scoliosis and she was pain-free. I know this information is anecdotal, but it was great to talk with her, especially since she had her surgery done over 30 years ago.

With your degree of scoliosis, have you having any compromised lung or heart function?

We are here to support you. There's a ton of great Spine Patients that frequent our Forum that are willing to help. Feel free to connect with other members via Private Message or with our unique Facebook-like chat feature.

[balletdawn]

Thanks for your suggestions! I will check out Dr. Bess. And thanks for the warm welcome, I think I really needed this group to feel a little less lost.

At this time, I don't have compromised heart or lung function, but they don't think I should allow it to go past 60 degrees, at which point those would be more likely to occur. I will definitely put surgery off for a year or 2 and we'll see how it's progressing. One doctor said -yes! do it now, why wait? Um no...I'm getting married in 8 months & I will not be in a cast or brace for my wedding. So, I think the wait will give me time to really consider all the options and hopefully travel to see some surgeons and get their opinions.

[Gilbert P]

Hi Dawn

Was it Dr B$#@ ? He is cut happy needs the money to pay for his new house!

Do your homework.

Gil

[balletdawn]

It wasn't an actual surgeon, just a D.O. I think he was trying to encourage me to do it while my spine is more malleable because he kept saying "you're young" every 5 minutes. Thanks, you can call me that all day long I think they don't encourage that surgery after age 40 for some, 50 for others and I'm pushing 40.

[Cindylou]

Hi Dawn, welcome as well. I'm sorry you are having to face the repercussions of your scoliosis....at such a young age. Sorry! I had to say it. lol You are young, but it sounds like your scoliosis is progressing rather rapidly. Or is that an average progression? I honestly don't know. You have been given some good advice already, and with a wedding on the books in your not too distant future, I can certainly understand your desire to "wait." Congratulations, by the way. Are you having your wedding local? It is good news that you have been able to maintain such an active lifestyle thus far. That is fantastic. I don't snowboard but I am a certified downhill ski instructor...just haven't been able to ski for the past few years due to my back condition and some surgeries. I was really hoping this would be the season we would be able to head out west, but unfortunately, it's been a down year with my husband's business, so it's looking like that is not in the cards this year. Hopefully next year. Glad you found us and good luck with your decision making regarding surgery, with who, when, what type, etc. Keep doing your research as you are. Hope we can be of support to you. Regards, Cindylou