PDA

View Full Version : Dilema with timing of surgery



BiddyPocket
01-15-2007, 11:11 PM
Hey everyone...

my name is Joe and I'm 18 years old from good ole' Long Island New York. Finding this site was like a Godsend to me...I have no one to talk to about my condition and I think this forum will give me some great feedback as to what I should do about it...

I have scoliosis, and the last time I went to my doctor which was nearly a year ago. My curve was between 45 and 47 degrees, apparently not severe enough to have a mandatory operation. I have some body disfigurement...my left hip juts out alot more than my right one, and is higher up. Also, I have a large hump on the right side of my back due to the spinal curvature. I have lower and upper back pain when laying down or standing in the same position for more than a few minutes as well as frontal chest pains.

The physical deformities and pain have really pushed me towards wanting the surgery, but my parents didn't agree and held me back from ever having the surgery. I planned to have it over the summer of my junior year in high school when I was about 17, but now that I haven't, I don't see a time in my life when I really can have it. I would have to wait until I am 22, and even then I would have to make sure I was better in two months to start graduate school right after college, seeing as how I can't afford to start paying back student loans.

Money is also an issue. My parents are worried that the insurance wont cover the cost of the surgery.

Basically, right now, I'm just terrified that I should be doing something for my back that I'm not doing. I excercise when I can and I've been braced for two years when I was 14-15, but it did nothing. Now I hear about people having neck and back pains post-op and that just scares me even more. I just don't know what to do, heh...

does anyone have any suggestions? Or advice? Or anything really...

Thanks.

P.S. - to those of you who are parents who are on this site to learn more about scoliosis for their children...bless your souls. You are doing a wonderful thing. I wish my parents would have looked into my condition more...maybe I wouldn't be in the situation that I am if they had done that...

VincySweety
01-15-2007, 11:36 PM
Hi Biddy Pocket,

I'm a 19 year old girl from Toronto, facing a similar dilema as you. My curves are 48T and 40L ... it's really difficult for me to decide whether to have surgery or not, because nothing ever seems to be certain with this condition. I also suffer from alot of discomfort and muscle pain and have a hard time sitting comfortably in class, as well as sharp pains in my chest sometimes, just like you do. To make things worse I've had 2 surgical opinions, and one recommended that I have surgery this summer, while the other said I should wait a year to see how/if things progress. I'm really confused and just as with you, if I do not have surgery this summer I'd probably have to wait till I'm around 25 to have it.... I just wish someone could tell me what to do... :confused:

I'm sure we can relate to each other, so if you ever need someone to talk to, feel free to message me.

BiddyPocket
01-15-2007, 11:41 PM
hey VincySweety,

wow! To think, so soon after I posted this, that I would find somone almost in my exact position! Awesome!

The thing I'm really worried about is not even having the surgery - I've had operations before, so they don't scare me - it's just the whole "should I?" concept. There seems to be just as many people who say that not having surgery is the best route and that the more you do for your back will help it as there are people who think surgery is the best way to help your body back to its normal state. But the thing is, I can't devote my ENTIRE life to my back, nor do I want to risk pain later on in life from the hasty decision to have a radical surgery.

It's great to meet you, it really is, and I'm sure we both will be very grateful to anyone who as advice!

VincySweety
01-15-2007, 11:54 PM
I know exactly what you mean. It's not really the actual surgery that I'm scared of, but I just want to know that I'm doing what is best for my back in the long run. It's not good to make hasty decisions, especially because I would hate to regret a huge decision like this one later on, but just as you said, I don't see myself being able to do all of the things necessary to keep my back healthy without surgery. It's hard not knowing if/when your curves will progress because I've read so many scary stories about how bad things can get by the time ur 50/60 ... some ppl are on oxygen full time and all of that, or end up having to have the surgery in the end... and I don't want to end up in that situation, neither do I want to end up having to have a surgery at an age where it would be more difficult to recover when I could have it now. Also, as I continue to go more school and eventually end up in an office job, I don't know how it's going to be, because having to sit up in class and studying for tests for long periods is horrible on my back and I'm not sure if I could handle that... On ther other hand, the curves may not progress and I may be fine for a long while....

Oh boy... it seems the more I think about this the more confused I get. :confused: Hopefully someone can get me thinking straight!

It's great to meet you too!! and I will definitely be grateful for any advice I can get.

ashleym8118
01-16-2007, 12:51 AM
Would it be at all possible for you to have surgery during the summer, or do you plan to take classes during the summer semester as well? Depending on the extent of your surgery, it MAY be possible (physically) for you to have surgery in May and be back at school in time for fall classes. I am also a college student (20 years old) and just had my surgery (I had a 46 degree curve and was fused from T10-L5) during finals week (December 14th) and have been back at school for spring classes for about a week now. I'm only taking two classes, but will be taking a full class load this summer.

Did your doctor tell you that you would need to take a full semester off? My first doctor told me I would absolutely HAVE to take a semester off, which wasn't going to fly with me, but my second opinion (the doctor who operated on me) said that after about a month, most younger people start to get a lot of their energy back, and that's been the case with me. I don't know your particular case and what all your surgery will involve, but I know in my case, the surgery has not completely shut down my life for an extended period and I'm glad I went ahead and got it out of the way-I was going to have to do it at some point anyway. It's great if you are able to have surgery while you're younger because your spine is more flexible and easier to correct, plus the recovery is faster. However, if it is necessary that you wait a few years and get through school before tackling surgery, and you can manage your pain during that time and go easy on your back, I'm sure that would be okay too (unless your doctor strongly recommends surgery ASAP, which it doesn't sound like he has). You'll still be young in a few years and I don't think it will make a huge difference in the surgery and recovery should you decide to wait it out.
-Ashley

BiddyPocket
01-16-2007, 10:48 AM
He hasn't said I would have to take the semester off but I have had a few friends who have had it and the recovery time lasted longer then I expected...also, I'm double majoring in shcool and I can't afford to take that light of a schedule at any point in my college career and I sure as hell can't afford to stay and extra semester/year (it's a private school, heh). But you're right, I will still be young in a few years...I guess it would be good to wait anyway and see if my curve progresses. Did your surgeon demand that you have the surgery at 46 degrees? Because my curve is about the same, and my doctor seems pretty relaxed with not doing anything...and that scares me...

Also, do you think it was the best choice?
Thanks a bunch! :)

Carmell
01-16-2007, 01:13 PM
I don't have any advice for you, but wanted you to know there is an active support group for scoliosis people in your area. Email me at boulderfam@hotmail.com and I'll send you their contact information. No one should have to go through these serious decisions alone. Good luck.

LindaRacine
01-16-2007, 02:04 PM
It's hard not knowing if/when your curves will progress because I've read so many scary stories about how bad things can get by the time ur 50/60 ... some ppl are on oxygen full time and all of that,
Hi Vincy and Biddy...

You're both in sort of a grey area. Most surgeons now don't recommend surgery until curves reach at least 50 degrees, and are documented as progressing. Since you're both young, it seems to me that it wouldn't hurt to wait at least 3-4 years. During that time, I'd encourage you to be seen by your scoliosis specialists once a year, or if you start having new symptoms.

Most scoliosis experts now say that curves don't have a huge impact on breathing/heart until they reach about 100 degrees, so I think you don't need to worry about that yet.

Regards,
Linda

LStephens
01-16-2007, 08:22 PM
Hi Biddy
I've gone through a similar situation.
I first found out about my scoliosis in high school. I have a thoracolumbar curvature of 46 degrees. The doctor I was seeing at the time said that I would probably need surgery eventually but for the time being try PT. The PT did help relieve some discomfort but is definitely not a permanent fix.
I'm now 25 and I've recently started looking into surgery again. The first doctor I saw recommended PT again. The second doctor said that surgery was up to me. I went ahead and schedule surgery for June. I did this because I will graduating from grad school in May and would prefer to have surgery before I begin working to give me time for recovery.
Like many others I'm very nervous about making this decision. I'm having an MRI on Thursday and will make my final decision based on the results.
I'm very nervous about not having the results I want from the surgery. I'm worried that it won't fix the discomfort/pain that I'm experiencing now. But I have noticed that my instinct is telling me to do it. I'd hate to still be having this pain at 40 and wondering if surgery could have made me feel better.
Keep us up-to-date on what you decide
Lindsey

BiddyPocket
01-16-2007, 10:01 PM
wow, thank you Lindsey. I hope all goes well with your surgery! Please, contact me when you've recovered and let me know how everything is going! We are in very similiar situations and this could really help me out. I wish you the best in luck!

amae28
01-17-2007, 04:46 PM
Hi biddypocket,
I am interested in knowing what you decide too. My deal is, I feel like if I wait, then I'm not going to have the opportunity to have surgery until i'm in my 30's or 40's because I'm planning on going to medical school... and I can't imagine a more inconvenient time to have that type of surgery. Not to mention I'll be off my parent's insurance plan when I graduate my undergrad in a few years. I am 19, and my curves are 42T, 32L... not as bad as yours but they seem to be getting worse every year. Keep us "in-betweeners" updated on what you decide!

Abbie

green m&m
01-17-2007, 05:25 PM
I wouldn't be too scared that your doctor isn't fully endorsing surgery at 46 degrees. Like others said, it is in the grey area.

I'm 26 and my surgeon has recommended surgery once my curve reaches/creeps closer to 60 degrees. I'm going to need surgery, and plan to wait as long as I can (w/o waiting too long) until I do get it done.

My surgeon told me if I had gone to a surgeon while I was younger, I'd be fused by now. I'm glad I'm not fused yet... I have pain, but it's not yet debilitating, and I want to keep my 'natural' range of motion as long as I can.

ps. I'm a former Long Islander

BiddyPocket
01-17-2007, 10:09 PM
I'll definitly keep everyone updated...

I had a fight with my parents tonight actually. Well, less of a fight and more of them telling me that they could never live with the guilt if something were to happen to me and that's the only reason I can't get the surgery, and me going into my room and being depressed. They just think it's for cosmetic reason...and yes, my back deformities have greatly lowered my self-esteem...but it's the pain too. They don't know what it's like to be lying down on the couch for five minutes, and have to change your position because the bones in your chest feel like they're going to pop out at any moment, and all you want to do is watch Law and Order...:-/.

They said I could never get the surgery as long as I'm on their insurance plan...and I'm probably not going to have a good insurance plan for a while...which means I'm screwed.

And of course, life has a way of sucking even more. I haven't grown in height for about 4 years and I thought it was just because of my back....turns out that an allergy medication I'm taking stunts growth....joy...I just want to be taller than 5'6 :(.


p.s. Long Island rules :)

Tall Paul
01-17-2007, 11:53 PM
I am far from an insurance expert so I dont understand your parents concern over insurance payments going up. If they are in a group plan there should be little effect on their costs. And isnt your health and well being more important anyway?

As a parent my concern would be waiting until you graduate college as that is when insurance coverage on your parents plan would end. So you would have to find your own insurance (unless of course you got a job) and I'm not sure if this interim insurance would cover this pre-existing condition. Plus it would be very expensive.

I suggest you research you insurance options in more detail as this is an expensive surgery.

Cakedec
01-18-2007, 09:30 AM
I would also encourage you to check into exactly what your parent's insurance would cover regarding your surgery. It is not cosmetic; the dr. would document medical need for the scoliosis--especially if you have pain and progression.

A concern with waiting until you are on your own is that once you start a new job and get your own insurance, is your new employer going to be able to give you the time off for the surgery? (Can be as long as 3 - 6 months recovery for an adult, depending on your job's physical demands--remember you can't lift over 15 pounds the first year, which can be a problem even in an office--also would you be able to get disability pay to live on in the meantime). That is why it is best to get the surgery done while you are in high school or college and still on your parent's insurance and able to rely on them while recovering.

Unfortunately, some parents are not supportive about their children having this surgery because they do not want them to take any risks or have any pain (plus go through seeing the recovery themselves). My mother still did not understand why I thought I needed surgery when my curves were 72 and 77 degrees with constant pain and disabled from working!! Once she saw that I was committed to having it done regardless, she accepted it. Have you taken your parents with you to see the surgeon who recommends surgery? You might also get other references for drs. from this forum. Get at least one other opinion before deciding. Good luck.

Deb
age 47
posterior surgery 7/24/06
for s curve T72,L77
50% correction
DON'T WAIT TO GET STRAIGHT!!

BiddyPocket
01-18-2007, 10:31 AM
wow, 77 degrees...that's really intense...but I'm glad things are better for you now! The doctor said that I don't NEED the surgery, and that it would be more cosmetic than anything...but I still have alot of back pain. I just don't know anymore...it isn't that my parent's insurance wont cover it, they just dont want to have the guilt if something goes wrong...which I think is completely absurd...

regardless, I trust my doctor's opinion, I suppose. He's pretty well known...he was the guy who operated on Gloria Estefan when she got in her car accident. I just hope my curve doesn't progress any more than it has...

Karen Ocker
01-18-2007, 01:53 PM
As far as I know Gloria Estefan was not operated on for scoliosis. I also believe the doctor in question is nearing retirement.

BiddyPocket
01-18-2007, 02:33 PM
http://query.nytimes.com/gst/fullpage.html?res=9C0CE2D7133FF931A15750C0A9669582 60

I'm not sure if she actually had the surgery, but it was her physician none-the-less.

As far as him retiring...well, he hasn't said anything about it. He's Dr. Neuwirth from the Beth Israel facility in Manhattan.

MariHOU
01-18-2007, 08:29 PM
Hi...I wonder if she was operated for spondylolisthesis. Interesting.

Marilyn

Theresa
01-18-2007, 10:49 PM
Hey there Marilyn,

I talked to Kelly at Dr. LaGrone's office yesterday. He faxed me a list of hotels and suites, one hotel is right across the street from the hospital.

I also got an answer to one of my questions, stitches or staples? He tries very hard not to use staaples. Usually they are only used if there is a spinal fluid leak problem. The stitches are usually done so that you don't see them.

macky
01-19-2007, 04:39 AM
Deb, just love the DONT WAIT TO GET STRAIGHT.

I have been sitting here thinking while reading these posts and my story is well so different.
My scoliosis was found when I was twelve and from that moment there was never any suggestion that I would not have the operation. Now remember this was in the very, very early stages here in Australia and there was only one doctor in the Southern Hemisphere that could do the operation.
I had to wait until I was 15 to actually have the operation because by that time the doctor performing it had honestly seen Mr Harrington perform the operation. I was totally hunched over. My ribs were almost to my side, my hips were up and down. I was a mess. I have put my curvature down at 85 degrees but that would have been the least it was.

Even though we had no money, my mum and dad had separated but medical benefits here in Australia as far as the government paying for these things were at that stage really good.

You know as I said before there was never, ever any question. I just accepted the operation had to be done, so did my darling mum and her strength was unbelievable.

I was so lucky. Sorry about rambling on like that, but it must have been so terrible for her and she must have been so scared yet she never once was negative. God bless her always.

Biddy, you need support. Golly I do wish I could help you. I can be strong for you, and give you strength, but I am so far away. Maybe honey that is why you have been guided to this forum, any hope of getting your mum or dad to have a look at some posts.?? Printing them out and leaving them around and ask them to please have a look at them, and explain they are from real people who have a problem just like you. Dunno, just thought it may help them to see what you are facing and where you are coming from.

Bless you,
Macky xxxx

macky
01-19-2007, 04:55 AM
Sorry, Me again. Biddy if your scoliosis does get worse, I know you will be able to deal with it. Sometimes we dont realise how strong we are until we are actually tested.

Honestly the stories on this forum from the people here, are just unbelievable.
All your strength, bravery, attitude, love for other people, and the help you all are always giving out, honestly you are all "Scoliosis Angels" in my eyes.

bless you and all the other registered members of this forum,
Macky