Worried and Scared.

[TnGirl07]

Hi all,
I am a new user to this forum. My boyfriend was looking around at scoliosis so that he could have a better understanding and try to have me look at them as well however, i've been trying to avoid the subject even though i'm scared to death! he had mentioned this site so i signed up. here's my story
i was diagnosed with scoliosis when i was in 5th grade and had a testing at school. we went to a doctor and i was put into a brace. it was so uncomfortable and i eventually grew out of it. i have moved several times and each time i went to a doctor either i was to young, to old, or they couldnt do anything with the curvature at the time, either it was to big or not big enough for them to act on. in 5th grade it was 20*. i recently found a doctor at vanderbuilt. i use to see Dr. Greene until he retired. now my Dr. is Dr. Mencio. I now have to have surgery. i have a curve between 50 and 58* i'm in no pain at all right now. My surgery is May 14th, at 8:00am. i'm very scared. i've never had any type of surgery, or even broken a bone. is there anything i can do to lessen the worry?? how can i get more prepared for this big operation, that i have been putting off for about 2 years? i am now 19 and attend college and i have never been so scared in my life!
thank you for all who read and respond ahead of time!
-Brittany

[rtremb]

So sorry to hear you are so stressed out. Do you have to have the surgery right away? Can you wait a while to get used to the idea? Is there a medical reason why your surgery date has been set so soon? Are you in pain?

You are 19 and therefore you are skeletally mature. At this point, as far as I know, your curves should only advance at about one degree per year, if at all.

If I were you I'd get a second opinion from another orthopaedic doctor about whether you need surgery and when if you do.

Some people do live with curves like yours and through exercise, like yoga, make out okay....others don't and need the surgery.

Ruth

[TnGirl07]

i'm just really nervous. i've been talking to this doctor for over two years about the surgery. he said he would not touch me until i knew i needed it. he had told me that with my case i would eventually need it. my curvature has gone up several degrees in the last few years it was at 49* the first time i went to him and is now at around 56 or 58*. i had set a date last year but didnt want to have it so close to starting college since i didnt know how i would react to it all. i know i need the surgery since it gets worse more and more. i keep shrinking and i can feel aches every now and then but nothing too serious.

i guess in a way i am trying to feel better about it. i have been trying not to think about the surgery it just doesnt seem real. in a way i have had two different doctor's opinions (ortho's) at the same hospial at Vandy. Dr. Greene and Dr. Mencio. both said at some point i will need it. i have scheduled surgery many times. i guess i just cant get use to the idea even though i probably should

[Susie*Bee]

Welcome, Brittany! I'm glad you found the forum. I think I can safely say all of us who have had this surgery were a bit scared and nervous about it... but remember that we got through it ok-- and if we did, you can too. It's a hard surgery, but you'll come out straighter and taller-- and above all, your curves won't be getting worse each year. It also makes you a stronger person, in that you'll have been through a difficult time and succeed in dealing with it.

If you use the "search" tab, you can read about people getting ready for the surgery and what they did to prepare. There are also some helpful books-- I just mentioned them in a post yesterday, so I'll add a link to them... http://www.scoliosis.org/forum/showt...9073#post59073 Also, there have been several younger (college age) girls who had surgeries not that long ago. You can read posts by some of them if you go to the December surgeries post. http://www.scoliosis.org/forum/showthread.php?t=6556 and another one that talks about their recoveries-- http://www.scoliosis.org/forum/showthread.php?t=6635 Anyway, that might give you a little info, if you read through those.

If surgery is needed (and it sounds like it is!) you are at a really good age for it-- when you are young, your body is more flexible, so they can get better correction, and you are also more able to heal (as in "quicker") than if you put it off till you get "old" like some of us... Yes, it's a tough/rough surgery, but you can do it! Keep us posted on how it's going and ask whatever questions you might have. Hugs, Susie

[abhbarry]

Welcome!
It is completely natural to feel scared and nervous and wanting to avoid the subject. You should check out some of the books that Susie recommended. It also helps for family to read them to understand how to help you better. The best thing for you to do right now is exercise and try to get your legs as strong as possible. It will also help you relax. Do a lot of nice things for yourself between now and surgery to help you relax.
Also, help get a list of things together that will help you when you come home to recover. There are many threads on this, and I have a list on my blog that is attached to this post.
This is a great forum to ask any questions!
Best,
Anya

[Rach84]

Welcome,Brittney!


I completely understand where you are coming from. I actually don’t think anyone could be more scared than me.
I may be a little bit older than you (I’m 23) but we have just about the same curve. When I was 19 my degree was 49 and now I am 23 and I just found out it was 55 with the added bonus of a curve forming on top as well. I need to schedule my surgery probably within the next 12 months and I dread doing so.
I just really feel for you and even though I may not be much help like the other people on here who have had the surgery, I want you to know you can feel free to vent to me anytime you want. I wish the very best for you! Please keep me posted on your progress.

P.S feel free to pm me as well.

-Rachel-

[TnGirl07]

thank you all for the posts and blogs. they were really helpful. i'm feeling a little better about this. still have worries and stuff but i guess thats normal. i have made a whole list of questions i want to ask my Dr. how would i prepare my body for the surgery? i'm not allowed to do much at the moment i was diagnosed with Mono, strep, and tonsil something about a month and a half ago. so we're trying to get my organs the right size again. the day of the surgery and after. How do you sleep? Shave your legs? is there any possible way of being comfortable? i must say. i am so glad that i found this web site. i use to think i was the only one. its wonderful to know there are people out there who understand and care and are just like me!!!! woo!!

[Karen Ocker]

To all those young candidates afraid of surgery....

I was 60!!!! when I had a revision.

How would you feel if you knew your curves would continue to progress--which they are doing already---and nothing could be done to stop it---- and you would look forward to increasing deformity and eventual disability????

I was comforted by the fact I could be helped. On the other hand one should not become complacent and say "I could always do it--someday".

[JoAnn5]

Hi Brittany! Welcome to the forum.... I'm from TN too! I had my surgery done at Centennial by Dr. David McCord. It's a big surgery, there's no denying it.... but you are young and should recover much more easily than I did at 50 something...lol. I wish i'd done mine younger, but the technology wasn't as good back in the Stone Age as it is now.

Linda Racine has a good web page that covers lots of things you might need to get ready before surgery. Also, Dave Wolpert has a great book called Scoliosis Surgery: The Definitive Patient's Reference. You will find lots of information there. We will also be here for you as you prepare. Feel free to ask us... usually someone will have an answer or a suggestion or be able to point you in the right direction.

Hugs to you. Are you a student at UTM, btw? My daughter went there!! Great school!

JoAnn

[myachingback]

I was too!

I am a 53 y/o man and I was scared. I went for a second opinion to Dr. Hey in Raleigh N.C., I'm in Ms.. After seeing him I am not afraid anymore just what I call normally aprehensive. When in his office I was treated like a family member. Also they are very communicative.
Don't let it get you down, you can do this surgery if you need to. You just have to gather yourself and kick the surgerys butt. If you have to do it make your mind up to do it and you will come through it. There are many that have gone through it before us, and some were very elderly ladies. I am glad your boyfriend found the forum for you, there are a lot of great folks on here that will support you and they truly care.
HANG IN THERE!
Chris

[sunny45]

take some time for yourself

TN Girl

I know you're scared, but if you've had a second opinion and it's the same as the first, it sound like you'd be best to "take the plunge". I'm new and only found the forum this week, but I see that there are many people who genuinely care about the members. From everything I've heard and read in the last few months, the recovery time now is much faster than when I had my surgery - but then again I had it in 1974.

Once I did recover, I was able to do anything I wanted - water-skiing, I played hockey, went dancing every weekend (that is until I had my son). I've even gone parasailing and backpacking through Europe.... all after the procedure. My only restriction was no gymnastics.

I would suggest you read the books recommended, but remember that everyone's situation is unique. I'd also suggest you spend some time before the surgery "having fun" - whatever that might be to you.

[CHRIS WBS]

Hi Brittany,

Take a look at my spine. And this is from three years ago. Since then it’s gotten even bigger. I have a lot more reason to be scared than you. I will be going into this at age 59 and with a curve as big as mine, there’s a lot more risk for complications such as nerve damage or paralysis. Despite my big curve, I have very little discomfort. Three years ago I had a bad spell, but after much prayer, my symptoms subsided. So I have every reason to believe that God will not let me down now because He sure has taken good care of me all these years. One day I was feeling so down about facing this surgery, and I opened up my email and a message from a friend popped up at me. It was a message of prayer and hope. And the words that stood out were “pray, hope and do not worry and trust God that you are exactly where you are meant to be.” I believe that message was sent to me at that very moment to reassure me that God is watching over me. God is watching over you too Brittany and He is giving you an opportunity for a better future without having to go through life with a crooked spine.

Chris

[Peachy]

Brittany,

I agree with everything Chris said. I'll be going through surgery in a few months, and could certainly use the word "terrified" to describe myself.

There is something that helps me though. When I was in the MRI "tube" for what seemed like hours (not good, if you're claustrophobic), and when I wake up in the wee hours of the night and fear tries to grip me, I meditate on scripture verses. One of my favorites is, "I will keep him in perfect peace whose mind is stayed (fixed) on Me".

One other: "Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."

I'm not trying to get into a "religious" discussion on the forum, only to share with you what has carried me through some difficult times in my life and continues to help me now.

Best wishes to you,
Peachy

[CHRIS WBS]

and you would look forward to increasing deformity and eventual disability????

Karen, not everyone who has progressive scoliosis ends up disabled. While an increasing deformity can certainly be troubling and hard to accept, there are many people with large curves who continue to function quite well and enjoy life. Eventual disability is certainly likely especially for those who are experiencing restricted lung functioning, but the truth of the matter is there are people who have ended up disabled as a result of surgery too. I’ve been following these posts for almost three years now, and I’ve seen plenty of posts that will bear that out. Admittedly, newer technology has substantially lessened that possibility, and I would strongly encourage anyone with documented progression and/or pain to fix a problem before it gets out of hand. As with any disease, early treatment is to one’s advantage.

Chris

[sparklegirl59]

i will b prayin 4 u!!!

i am so sry that u have 2 have surgery! i will b prayin 4 u. and remember, God will b with u thro it ALL!!! i am thinking of u and if u like, u can pm me at any time u want, and just remember that ppl r thinking of u and so is God! He will b with u thro it all. TTYL! -val