21 year old son just found out, Mom is a mental mess

[Michael Barga]

I told my 21 year old his shoulder looked swollen so he made an appointment. They said Scoliosis.... he has a curve at 65 and a lower curve of 39.This was so unexpected and has us terrified.Hes a skinny kid, works very hard, heavy lifting and has no pain. Maybe has taken a few asprins over the last 18 months.Now they have us an appointment with a spinal surgeon to talk options. He does not want surgery and I understand why but we know no males that have this type of curve and if it will get worse.We are just shaken to the core and feel so guilty it was not caught sooner.There was no mention of it as a younger age and as they got to be 17 and working they didnt go to the Dr. He is never sick.If he had pain or was really disfigured the decision might be easier. We can notice it now, he was never one to go without his shirt. I do not think his body bothers him, he has a girlfriend so that helps (smile) He really wants to wait awhile and see if the curve is progressing and I think to give him time to adjust a little. He is so worried that he will not be able to go back to heavy lifting, a job he likes. Somedays I think get the surgery and get it over with ( scared to death of surgery for him)....but other days I think he has time for the surgery if its needed later on....I have been reading the ages on here...Well thanks for listening

[LindaRacine]

Hi Michael...

At 21, your son is almost certainly done growing, so I'm guessing he'll be told that he can afford to wait to have surgery. There are a lot of things for him to consider when making the decision. For example, does he have good insurance coverage now, and will that potentially change in the future? Does he have someone to take care of him for a few weeks after he returns home? Will he eventually HAVE to have surgery? If so, earlier is easier than later.

Your son's concern about heavy lifting is a good one. Whether or not he has surgery, heavy lifting is almost certainly detrimental to his spine.

Good luck getting everything worked out.

Regards,
Linda

[Spencer's Dad]

Take some deep breaths

Welcome to the NSF forum. You will find a lot of help and support here. If you've read around the forum much you will have come across a common phrase: Scoliosis is rarely life threatening. That means that you usually have time to absorb the shock and information, and you have time to figure out the best course of action before rushing into surgery!! So take some deep breaths and then get to work trying to learn as much as you can so that you can help your son by knowing what questions to ask and how to understand the responses from the docs.

Also, as I've said in other posts, the first part of this is always the hardest because you don't really know what is going on or how bad things really are. And it seems the docs are not much help. Usually, that is because the docs have to do some testing before they can tell you anything and waiting for the results is sometimes excruciatingly hard. Fortunately, the tests for most scoli issues are a couple of x-rays, and maybe an MRI. So you can get the results pretty quick. When you do get the information, you may want to consult with another doc, either to get a second opinion, or maybe even just your regular family doc so that he can help you understand what is going on.

We've all been there before so if you have questions, don't hesitate to ask them here. Usually, someone here has had something similar and can give you some good advice and encouragement.

So hang in there. Be strong!! You will make it through this. Just remember to take deep breaths if it gets overwhelming.

[Michael Barga]

Thank you

Thank you, thank you. Just the two post so far has helped us. We know things could be a lot worse but just still in shock I guess.So many questions and so much information.Bad, good, conflicting.... I think we are in overload mode. Actually my son is calmer then us, at least on the outside. He says so I am a little crooked. He is going to see the surgeon out of respect for us but hes 21 and thinks he is invinceable. I mean that in a good way, my son is a very good kid and has never gave us any problems besides a messy room. I am so happy we found these forums.

[Beckymk]

Hi,

I just wanted to give you a perspective from a wife of someone who has scoliosis.

His was caught when he was a sophmore (he wasn't one to go without a shirt etiher). He was told they could put him in a brace but it wouldn't do any good because he was done growing, so there was nothing he could do.

He has not investigaged surgery & I have no idea what his curve is but it has to be high because it's pretty obvious. Our DD has a curve of 40-42 and we were in shock because hers is not obvious like her father's at all, so I'm thinking if hers is that high, his *has* to be a whole lot more curved. He doesn't know his curves either, just always remember seeing the x-rays and "my back looked like a roadmap".

He does occassionally have back pain but he has never let his scoliosis stop him. He's 44, married for 16 years & 4 kids later.

Since your son is 21, done growing, I would just wait and see if it gets worse. If the curve holds where it's at and isn't affecting him, I would not see the need to get surgery.

I hope this helps you some. I know the shock of finding out though - in my DD's case, we weren't shocked she had scoliosis (my DH's seems to be hereditary), we WERE shocked at how big her curve was & they had already mentioning surgery.

[Michael Barga]

Thank you,for telling me about your husband,We have ran into a few other guys that was older when they found out too. One is a roofer by trade and we watched him carry shingles to the top of a roof. He told us he gets a little sore but figures no worse than the other guys do.Michael has very little pain ( usually after doing something that no man would be able to do without being sore in the morning, a couple tyenols and hes ready to go). We do have an apointment to see a surgeon/specialist and will weigh what he has to say, but surgery seems so drastic at this time....... Does your husband watch his weight or do any excercises? My son is almost 6 feet and about 140 pounds... never sits still long enough to put weight on but we were thinking he should excercise his back and try to keep it as healthy as he can. It was like one day we did not see anything and then it was just there, guess it was the way he bent and without a shirt, not the norm for him. He thinks we are making too big of a thing about it.... he says so I am a little crooked...our joke is well as long as you are not a crook! I will be praying for your daughter. Thanks again!

[carolbills]

Surgery Alternative for your son

For those who have been reading this regularly I sound like a broken record but I would like to make you aware of an option to surgery. Check out scolisissytems.com. It is a Spine Core bracing system that is dynamic. It moves with you and can easily be worn by your son at work under his clothes. The brace was originally designed for children but Drs. Deutchman and Lamantia have had great success with adults. I am 60 with a large S curve and it has made a huge difference. If it can do that for me it can certainly help your son. I can't imagine that men are much different than women when it comes to progression of curve. Mine never bothered me until I was around 50 and then I started with hip pain, neck pain and finally severe back spasms. I have talked to many women in the 40 to 60 range who all say the same thing and everyone tells them nothing can be done because they are adults. Most of these women have gone to the doctors for the spine core brace and every one of them has seen great results.

It would be a good idea to send them an e-mail from their website. Dr. Deutchman sent me back an e-mail right away and asked me to call. He spent easily 20 minutes on the phone talking to me. I am sure he would do the same for you. Their offices are in NYC but the two doctors travel the country seeing patients and have the most experience of any Spine Core brace doctors other than the Canadian doctors that developed the brace.

Best of luck and feel free to ask any questions you may have.

[Beckymk]

Does your husband watch his weight or do any excercises? My son is almost 6 feet and about 140 pounds...

He thinks we are making too big of a thing about it.... he says so I am a little crooked...our joke is well as long as you are not a crook! I will be praying for your daughter. Thanks again!

DH doesn't really watch his weight other than he has put on tons of pounds since getting married. He was probably underweight when we got married though. He definitely has the middle aged spread on him now. I do know he tries to make sure if he's lifting anything heavy, he will bend his knees & stuff. He has actually gotten to the point that if it's going to be too heavy, he doesn't lift it anymore. I think that just has more to do with getting older than the scoliosis though. I know he was given special back exercises to do but as far as I know has not ever done them.

I had to laugh at your line about being a crook. My DH is a bit of a jokster when it comes to his scoliosis, so sometimes the most innocent comment will make him go into being goofy. I think it has rubbed off on my DD because as far as she is concerned she is "Supergirl" because she has an S curve (it was a running joke previously with her being Supergirl for something and after we found out about her scoliosis her comment was "Hey mom, I really AM Supergirl since I have an S now").

[Michael Barga]

Well Michael saw the surgeon and as expected he said he needs surgery but right now there is no medical reason for it. Michael flat out refused... very vocal for a quiet kid....I know we have time yet for him to decide. All we can do is support him right now at 21 it is his choice. I do not know what the future holds but I guess none of us know that.One thing I found interesting is the surgeon kept talking about fixing the rib hump...I wish he would of talked more about medical problems down the road.Since my son never goes without his shirt the rib hump is not a concern to him.
Beckymk. if you read this do you think your husband will want your daughter to get surgery.I feel so much for you parents that have to make that decision.I feel guilty that I am almost relieved we do not have that option.. other times I feel guilty that it was not caught earlier and now he has to decide!

[scoliboymom]

First of all I understand the guilt of finding your sons scoliosis when the curves are already high. But at the same time unless their shirt is off or someone points it out it isn't really obvious. I noticed my sons scoliosis in July 2006 when he was 14 and his curves were already way past the point of trying a brace (T58 L38). And I felt soooo guilty.
Now it is obvious that he is in need of surgery because he is only a risser 2 and has much growing left. This means his current curves of T79 L43 will continue to progress rapidly. His thoracic curve has increased 21 degrees in 7 months.
As far as the decision to operate we are lucky that our son wants to have the surgery. I wouldn't do it if he didn't want it. So even though he is only 15 he is still making the decision. We have done all we can to educate him so he is totally informed about the future both pros and cons and he realizes that unfortunately his options are not big. His curves will most likely excede 100 before he is through growing.
Your son has the option of waiting. See what his curves are at the next xray interval and decide from there based on how they are progressing. In the mean time read as much as you can and tell your son as much as he will hear.
Good luck

[Michael Barga]

Thank you so much, it was so nice to hear from another mom with guilt. I am having severe guilt, some brought on by other people. Out of 4 boys this is the one who never WANTED to go shirtless or wear shorts, even as a youngster. His father never did ( He has weird ribs that stick out in the front but has never been told a reason why).... Now my younger three,I have trouble keeping clothes on them.I guess some of the guilt comes from not having physicals as they got older. He did see Doctors when he was young... was on WIC... ..and had hernia surgery when he was 2. Later he even had an ultrasound and because he had one kidney infection ( hated to use the hotel,s bathroom ) even had some x rays for a leg injury but no one ever said anything. He has told me someone he worked with at 17 noticed it and told him he might want to get checked.I look now and say oh my how did we miss it. Still today at 65 degree or 75 degree (there is a difference of opinions , we were hoping the difference might be 55 to 65. It might be if we get another opinion, I read it can vary on time of day and other factors. So healthy in every other way so we do have that to be thankful for.It was nice to read you would not make your sons decision.I have been told I should really push my son to have surgery and I just can not do it.I would not of done it at 15 either unless his life was in danger. I am trying to give him as much information as I can and that he will let me! Please keep me informed on your son and whenever his surgery date will be so we can keep him in our prayers.You will never know how relieved I felt when I read his curve was at T58 when you found it...I really was thinking I had been so blind and a horrible Mom.

[scoliboymom]

I know what you mean. I never was conscientious about taking my kids to the doctor for yearly physicals when they got older because they were always healthy and besides everyone was always so busy. Where we live they don't have in school scoliosis screening either.
Time will heal the guilt. I don't dwell on it anymore because I realize it wouldn't have changed him having scoliosis and I think even if he had the chance to be put in a brace it wouldn't have done any good. And then look at it this way they didn't have to go through the trauma and hardships of wearing a brace. I believe that my son's scoliosis developed very quickly, basically from one summer to the next, and I never see him without a shirt in the winter. So maybe the same happened with your son.
Does your son read this forum at all? Is he interested in learning more about scoliosis? If he doesn't want to have the surgery he should at least be totally informed about his condition. That can be hard... I know ...I also have a 19 year ald (without scoliosis) and they do think they know everything or at least mine does and does not like to be told things especially by mom.

I should have a surgery date next week and will post when I know. I feel incredibly calm right now but I think that will change once there is a definite date set.
And thanks for thinking about my son.

[Beckymk]

if you read this do you think your husband will want your daughter to get surgery.I feel so much for you parents that have to make that decision.I feel guilty that I am almost relieved we do not have that option.. other times I feel guilty that it was not caught earlier and now he has to decide!

Thanks for the update!! I know the guilt...even though we DID catch DD's early...I was aghast that it was already at surgery level & I WAS looking for it because of DH's back. I was told one year she had it but to just wait until the next year & if it looked like it progressed then we would go see the specialist. I had a friend of mine who kept telling me I should go get it x-rayed but I figured we would just wait until the next exam (she does sports so she gets a yearly exam for that) to see. I kick myself for not running right out and getting the x-ray as soon as they told me they saw a small curve. However, our regular doctor predicted it was in the 20 degree range when he sent us to the specialist. Oops! I was really not expecting hers to be such a degree because by looking hers doesn't look that bad (I wouldn't have noticed it! and she's in leotards a lot!).

As for DH wanting her to get surgery...Hmm...probably not IF it doesn't become a health issue. It's hard to say but he's never said anything to indicate he think having surgery would be a better way to go than just letting it ride as he has done. I'm actually on the fence on this one myself.

On one hand, it seems a simple enough "fix" to have the surgery but surgery to the spine carries a risk (every surgery does but anything to do with spine stuff scares the bejeepers out of me! I didn't even have an epidural with my first 3 kids because I was scared to death of a needle in the spine and something going wrong. I relented for the 4th but I basically didn't even breathe when they were putting in the epidural I was so scared.) So...I would be the one going -- Hmm...no back pain, you can breathe fine other than the outward appearance, I would vote for waiting on the surgery until it is medically necessary. DH has lived with it for a long time, we've been married 15 years and his scoliosis hasn't been much of an issue. Then again, I wear glasses because I'm too terrified to get the laser surgery to correct it. I figure "glasses work fine" -- so that would be my thinking too for scoliosis. Of course, I'm also looking for my DD as the standpoint of she's a gymnast, she wants to be on the high school gymnastics team, if she has surgery that won't happen....let's see if we can hold it off until after she graduates from High School & then see if it's necessary.

[Michael Barga]

Still on here reading a lot. Michael talks some about it and I try to tell him maybe some day he will want/need the surgery. I am having trouble understanding the pain issue. I really do believe he is not having pain and it seems so many on here do have pain at his level of curves.Even young people his age complaining about pain issues. I guess if he had horrible pain that would be great motivation for surgery.I just ride the fence on the surgery, somedays I think get it done now but other days I think wait until its medically needed.Maybe there will be improvements in surgeries or changes in studies after another 10 years.I wish I could find studies on just men... menapause and hormones are mentioned very often.My husband and I was wondering why for so long it was believed the curve you had when you were done growing did not progress. We wonder if it was an increase in lifespan, better X rays or a decrease in how fit we are today. Please do not think I mean being overweight and not active CAUSES this as a child or as an adult, but I have seen overweight as mentioned as a factor in curve progression in older people.I see very active physical strong seniors every day doing better then ones who are not active.Guess I am rambling about the TV generation coming of age... some days I find it hard to belive that my Grandma saw the first TVS come into family life.But years ago my Grandma remembers being told cancer might be a virus.... then we are told no... but now we are told to get our young girls a vacination against the virus that causes cervical cancer..... tonsils were taken out a lot and now they are not.Just so much to think about, guess right now he is doing what he thinks is best and he is not ready to accept surgery yet.Just as all who makes the surgery decision is doing their best to deal with this ......awful, maddening thing called Scoliosis. Please do not think I am judging anyone for their decisions or for being overweight( I AM OVERWEIGHT) it is just so darn hard to make this surgery decision.............and in my case I can not make it for him ....only give him information.

[LindaRacine]

Please do not think I mean being overweight and not active CAUSES this as a child or as an adult, but I have seen overweight as mentioned as a factor in curve progression in older people.

Hi...

I actually haven't heard that, and can't find any studies to support it. Can you remember where you saw it?

Regards,
Linda