I'm new, college student contemplating surgery :/

[turfxo]

Hi guys, my name's Marissa (: I was diagnosed with idiopathic scoliosis in late 2004 early 2005 and was braced from 6th grade to freshman year of high school. I get back pain occasionally, usually around the time of my period, and sometimes just out of nowhere. If I stand up, walk, or sit down for a long period of time, when I change positions I get this sharp pain in my lower back. Like when I walk to class (about a 10-15 minute walk) as soon as I sit down I get a sharp pain and I kinda freeze up for a second so I try to stretch a little in my seat then it goes away after like 10 seconds. Also sometimes my neck is really sore when I wake up. I have a memory foam mattress topper which seemed to help, and sleep with a teddy or body pillow between my legs for support, but sometimes my shoulders and neck are just really sore. I sleep a lot, usually 10-14 hours, and sometimes waking up is really unpleasant. Anyways, I've really been contemplating surgery lately. My surgeon said about 6 months ago that surgery is not mandatory but if I wanted it I could get it done. Besides the pain, another reason why I want to get it is because I'm really embarrassed of how it looks. My right hip is very prominent and my lower spine is very noticeable. I also have fatty skin folds on both sides of my waist, and I'm not even fat, I'm 5 feet tall and usually range between 88-96 pounds. My back makes me really self conscious. I cry almost every night because I hate the way I look and I just wish I was normal. I know it could be a lot worse but I've struggled with body image issues for some time now and this just contributes to it. My question for you guys is do you regret or encourage surgery? Was it a good or bad experience? I have a phone appointment in a week to discuss things with my surgeon but I'd like to hear your surgery stories first. I attached my x-rays too so you guys can see. Thank you & look forward to hearing from you!

scoli.jpg

[kennedy]

Marissa welcome. I was your age when I had surgery. My curve was way worse it was 50 degrees. Now it 20 degrees

[rohrer01]

First of all, Welcome to the forum!

I see the 43* and 28* curves, but don't know where they are getting a measurement of 90*. If you are serious about college, I would personally wait. I had similar curve sizes in college (graduated 10 years ago - almost). Depending on what you are majoring in, college can be very rigorous. Surgery would probably stop you for at least a semester, if not longer. From personal experience, once you've dropped out, it's VERY HARD to go back. I dropped out as a young adult and didn't go back until about 10 years later. My course of study was very demanding and I had a lot of pain due to a very high curve causing severe neck pain. I went to my dr. and was able to get a temporary disability parking permit for the first couple of years so that I didn't have to walk so far and fast between buildings. If your pain is that severe, you might be able to do the same.

As far as body image, I have the same weird hip (on one side) the sticks out and makes me look chubby through the waist on one side. I also am very thin, so this is a result of the scoliosis. I've learned to dress in such a way that my scoliosis can't even be seen by someone who doesn't know I have it. Button-up shirts that are taylored at the waist and left untucked are truly amazing! If your pain isn't that bad, I don't know that body image alone would be a good reason to put yourself through a surgery like that. On the other hand, I don't live in your body.

Another factor to consider is insurance coverage. If you expect that you will be covered by insurance after college, then that might be the right time to do it. If your curve is stable, you may not need it at all. If you think you will be going to work immediately after college and you are sure you will have the surgery, then you might consider getting it done now. I just personally can't imagine continuing with studies while trying to recover. Being young is a good factor on your side. Your healing time is faster when you are young.

I'm rambling 'cuz I don't really know what you are looking for. These are just some things that I would think about in making a decision like that during your college years.

Take Care.

[Pooka1]

I see the 43* and 28* curves, but don't know where they are getting a measurement of 90*.

The 90* line is one of the orthogonals that they use to actually measure the 43. I don't see the other. It's the principle of corresponding angles. If they didn't use 90* orthogonals then the lines determining the 43* would intersect way off the right side of the page. Everyone uses orthogonals whether they show it on the radiograph or not. Small curves would intersect a few feet to the right if they didn't. Some very large curves might be doable without orthogonals without leaving the page.

[Marina63]

Hi Marissa!

As one who has been through surgery and would be considered a successful case, I would suggest you wait as long as possible to have surgery. Your mobility will be significantly decreased. I am almost 50 and although I miss my mobility, I can deal with not having as much as I used to. I was very active in my 20s and 30s and cannot imagine being like I am now back then.

Have you considered the Schroth Method? You might want to google it. I hear good things of young people taking that route instead of surgery.

At the end of the day, only you know what is right for YOU.

Good luck!

[rohrer01]

The 90* line is one of the orthogonals that they use to actually measure the 43. I don't see the other. It's the principle of corresponding angles. If they didn't use 90* orthogonals then the lines determining the 43* would intersect way off the right side of the page. Everyone uses orthogonals whether they show it on the radiograph or not. Small curves would intersect a few feet to the right if they didn't. Some very large curves might be doable with orthogonals without leaving the page.

Thank you, Sharon. I was running into that problem when looking at my own curves, although they weren't that far off the page. It makes perfect geometric sense. Sometimes late at night my brain stops working! LOL

[Pooka1]

Thank you, Sharon. I was running into that problem when looking at my own curves, although they weren't that far off the page. It makes perfect geometric sense. Sometimes late at night my brain stops working! LOL

I am very confident you knew about corresponding angles but just forgot. :-)

[Confusedmom]

Hi Marissa,

Do you know if you are progressing? If not, your curves might not be big enough to justify surgery. Most surgeons I spoke with dont even consider surgery until your curve is above 50 degrees--some 60 or 70.

A few things to think about:
-You will lose mobility with surgery. Fusion means your vertebrae are permanently stuck together, and you can't bend that part of your back that is fused ever again.
-You could end up in worse pain after surgery. Some people do, though most don't.
-You probably will look better, but not perfect after surgery. You may be taller.
-You are young, so you probably have strong bones and likely would heal quickly--possibly in a matter of weeks, like a teenager.
-You might be able to have a shorter fusion if you have it now, then if you wait 10-20 years. However, you could also end up having additional surgery later on.
-If you think you want to have children eventually, a fused spine could make some aspects of caring for a child more difficult. On the other hand, surgery could eliminate some pain you might have with pregnancy.
-It is important to seek out a highly qualified scoliosis surgeon who regularly operates on adults.

If it were me, I probably would try to get through college without surgery. Then if your curve has reached 50+ degrees, you can consider it. Physical therapy can help a lot to reduce pain. So can exercise. Also, there are some forms of yoga that can help you strengthen an muscles and give you a better overall appearance. There is a book on this website called Dress Your Curves, which can help with camouflage. Also, I hope you don't mind me saying so, but you sound a bit depressed. The amount of sleep, plus crying a lot. You might want to see a primary care doctor about that. Depression can contribute to back pain. Treatment of depression can help with tolerance of body image. If you are depressed, it is not something to be embarrassed about, and it can be treated. Many of us with scoliosis have experienced depression at one point or another.

Good luck--it's a difficult decision.

Best,
Evelyn

[Confusedmom]

Also, I just realized you are only 18. You might want to read up on the adolescent forum, as well. Adult surgery is much more difficult, generally, and yours may be more like a teenager's.

Best,
Evelyn

[Irina]

Also, I just realized you are only 18. You might want to read up on the adolescent forum, as well. Adult surgery is much more difficult, generally, and yours may be more like a teenager's.

Best,
Evelyn

This is what I was thinking. Marissa is only 18 and this section of the forum has a lot of older people whose recoveries could be much more difficult. Marissa, it is a hard decision to make, but keep things in a prospective - you might have much better prospects and easier recovery because you are much younger than majority of us on "Adult" section of this forum.

[kennedy]

The adolescent forem is for under 18

[braceyourself]

I'm 20 and in college, and I agree with just about everything that has been said already.

Never in my life would I choose to go through this surgery because of the way I look. I always hated it when people said this to me, but in most cases, basically no one would even know you have scoliosis by looking at you. It was so obvious to me that I looked twisted. But we tend to be our own worst critics. That being said, my body really doesn't look any different than it did before surgery, except that I have perfect posture. : ) My right shoulder blade still sticks out and the right side of my chest still sinks in. Everyone is different, and who knows-- maybe you would have different results. I just want you to know that it may not cure everything.

On a side note, could you be getting too much sleep? It might sound crazy, but if I get more than a certain amount of sleep, I feel terrible and have a lot of neck pain.

Also, I had a lot of lower back pain before surgery. My curves were 52 and 57. And I have the same amount of lower back pain now. I hope I don't sound discouraging or that I'm complaining. This surgery has helped me in so many ways, and I'm very thankful for it! But these are some things, after having gone through it, that I would've liked to know before my surgery. So I hope it's helpful for you to consider.

Personally, I would strongly consider waiting until after college, if you have it done. But I have gone through 2 1/2 years of college since surgery, and I play volleyball, practice instruments for hours at a time, etc., and I completely enjoy all of it! Most of this, in my opinion, has so much to do with perspective. When we realize how much worse it could be, it suddenly doesn't seem so bad. We truly have so much to be thankful for. I hope you are able to make a decision that you are happy with, and that it proves to be the best decision for you!

Ok. I'm done with my book now. : )

[jrnyc]

hi Marissa
welcome to the forum...a place no one wants to need, but a good
place to visit if one has scoliosis...
i just wanted to suggest that you might want to make use of
a counselor...a social worker or a psychologist...someone to talk
to on a regular basis...it can help a lot, to have someone to confide
in who is an objective party, but is also someone who is in your corner,
who wants to help...
colleges have counseling offices...if that doesn't feel private enough
for you, you could get a referral to a private counselor off campus...
if your parents have you insured, it may be covered under the insurance...
you might also want to consider, as Ev mentioned, an evaluation for
depression...it is a normal reaction to any kind of difficult circumstance,
including health issues....
as a licensed social worker myself, i think it might be helpful to you...
just a suggestion...

please know that lots of young women have body image issues, with and
without scoliosis involved...and we always look worse to ourselves than
we look to others...but that reasoning doesn't usually help someone going
thru the issues...just trying to tell you that you have company...

best regards...
jess...and Sparky, the wonder puppy

[rohrer01]

Braceyourself (Katie),
Your video was very inpirational and you are a wonderful musician! Wow! Actually YOUR video is one that came up when I was researching scoliosis videos. I remember it because it was one of my favorites.

Now to Marissa,
Look at Katie's video. With her curves being larger than yours, can you really see the curves in the before pictures of her? I can't. She looks the same to me in the before and after pictures. We are really much harder on ourselves with body image. If I posted a picture of myself in clothing, you wouldn't be able to see mine either. It's the minute details of our bodies that only we ourselves notice. Another point to consider is the fact that not only are our spines curved, but our vertebrae are deformed to some extent AND our ribs are also deformed. Straightening the spine doesn't make rib deformities go away. It can help with appearance because we stand taller, but they have painful procedures that they do for people with severe rib deformity. So any weird dips or bumps in your ribs could remain after surgery as your ribs don't look bad enough to warrant the rib surgery.

Physical therapy and being very active as a young woman helped me the most with pain in my younger years. It hasn't been until I hit 40 that PT and exercise no longer work for pain management. You might consider seeing a pain specialist or physiatrist (specializing in muscle physiology/mechanics) for help with that. I hope you get some relief whatever you decide.

[king14]

Hi marissa, welcome!!!
In my opinion I think you should wait. Especially if your looking for a physical transformation...I'd say to hold out. I honestly looked better before surgery... But I'm still hoping for improvement. I also had no pain before and have the "bear trap" pain as they describe... All which I would think would be such a distraction if i was in school. I also am having Major mood swings since the surgery. (I'm 29) and I feel like I'm all over the place, another thing that I think could be hard being in college....
But in the end the decision has to be 100% yours! I have my good days and bad days, days where I feel confident in the decision I made, and days where I feel like it was the worst decision ever... And I had a wonderful experience! Fantastic doctor, pretty much a painless recovery (up until a few weeks ago) and I would be an advocate for younger people to have surgery!!! But --- you're still so young that you'll still be considered "young" even if you have surgery 10 years from now... Feel free to email me with any questions or call me - I just had surgery 3 months ago.. So it's all very fresh!! Good luck!