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View Full Version : 21 year old son just found out, Mom is a mental mess



Michael Barga
02-08-2007, 05:44 PM
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
02-08-2007, 06:00 PM
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
02-08-2007, 06:23 PM
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
02-08-2007, 07:25 PM
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
02-17-2007, 11:08 AM
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
02-17-2007, 12:31 PM
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
02-17-2007, 07:25 PM
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
02-17-2007, 08:51 PM
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"). :p :D

Michael Barga
03-02-2007, 04:29 AM
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
03-02-2007, 07:48 AM
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
03-02-2007, 11:01 AM
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
03-03-2007, 05:05 PM
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
03-05-2007, 12:05 PM
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. :p

Michael Barga
03-09-2007, 10:02 AM
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
03-09-2007, 11:09 AM
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

Michael Barga
03-09-2007, 12:55 PM
Linda, I will look around and see if I can refind it. It was not on a ( miracle cure site) it was on list of things that can ( or maybe may was the word used) influence curve progression, maybe at one of the Spinal/Ortho Clinics I have been reading, ...it had like size and type of curve, when curve started,being a woman, menapause and overweight.I think pregnancy was on there too. I know being overweight is hard on anyones back so maybe it just helps gravity along.I just remember when I read it I thought if Michael takes after his Dad that will not be an issue ( 20 pounds in 27 years and started underweight!)and neither will menapause, hormones or pregnancy.Of course he failed the size of curve!!I have been on probably a thousand sites/pages since this has hit our family, some has been all hype and hard sell, some has been stupid!. I do not think this was a study paper though it seemes like it was at a personal Doctor/Spinal Clinic..web page so maybe its his/their opinion too..I do remember it was talking about adult reasons for considering surgery, not for children.What made me think of it was another member from Canada said she was expecting to be told to have surgery but the surgeon told her to lose weight and get in better shape and the Dr said something about United States does surgery too soon and too often. ( Those were not the exact words but close)Of course the free health care system of Canada might influence him too....I did not mean to imply losing weight would help people curves not progress....after reading on here it seems like some progress no matter what.Also had a man say his curves have stayed the same for years and his was in the 60 degrees and I think he said he was in his early 60's... 61 or 62 I think.I just have to wonder why his stopped without surgery and he said he had no pain either. Guess I am wanting answers and all I get is more questions!

Karen Ocker
03-09-2007, 04:15 PM
Some recent research seems to indicate that there is a genetic component to(idiopathic) curve progression-in other words some curves progress throughout life no matter what(unless stopped by surgery or adolescent bracing) and others just stop at say 30 deg. A recent publication by the Scoliosis Society I get at home shows even more research indicating this.

This is such a dilemma and a maddening mystery. All we can do is deal with what we are dealt with.

In my case there is scoliosis in both sides of the family-my mom's, sister, brother and girl cousin and on my dad's side a cousin's daughter. I was perfectly straight until 11 years old and by age 13 my curves(3) progressed in a malignant fashion to 100 deg thoracic. I was a healthy, athletic child who swam, did ballet, loved gym, of normal weight, climbed trees and slept on a firm mattress without a pillow.

Go figure. :confused:

Michael Barga
03-09-2007, 09:08 PM
I was wondering if anyone had ever read about having a spinal tap as a child, could ever play into it.Someone told me Hitler caused Scoliosis to happen in some people .....some of his weird experiments on the spine. ( I DO NOT KNOW IF THIS IS TRUE, ) Michael stopped breathing at five weeks and I did CPR and when they got him to the hospital he had a spinal tap to rule out some diseases.They called him a near sids baby and sent him home with a monitor for a year.We have done a lot of research on both sides of the family and can not find anyone except a niece with I think was a 10 degree, she never was braced and never got worse.My husband had 13 siblings so we have a lot to compare with on that side.I knew most of my Great Grandparents and their brothers and sisters and never remember anyone being curved or disfigured or anyone talking about it.Most of them was as straight as a whip, skinny very active bunch, some lived to be over 100. I do have a third cousin that has severe cerebral palsy due to being born very early who is showing signs.Wow Karen, you have quite a history in your family, it would seem in your case genetics came into play. I had to laugh about the firm mattress without the pillow.If my Dad was still alive he would of said get that boy a good mattress AND EAT HEALTHY.If only that would cure it.....have you ever heard about race coming into it? Having Native American in my background ( those Great Grandparents I never knew, have seen pictures though )I was told by my Doctor that certain diseases are more common in some races.Which I guess would be a genetic link of sorts...so many questions and not answers.I want to thank everyone for their information, support and sharing.How wonderful the net can be!

Michael Barga
03-10-2007, 12:36 PM
Linda, I found this page about being overweight. Not for sure this was the original page I saw though. http://www.scoliosis.org/resources/medicalupdates/adultscoliosis.php Adult Scoliosis by Nancy Schommer, author of Stopping Scoliosis

Because so many adults have contacted the NSF, we asked Nancy Schommer, author of Stopping Scoliosis, to provide us with an update about adult scoliosis. In the course of her research, she interviewed Dr. David B. Levine, Clinical Professor of Orthopedic Surgery at Cornell University Medical College and Director of Orthopedic Surgery at the Hospital for Special Surgery in New York City. Following are excerpts from their conversation.



--------------------------------------------------------------------------------


Q: Dr. Levine, is it possible for an adult, a person 21 years of age or older, to suddenly "get" scoliosis?
A: It's possible but extremely rare. When it happens, it is usually because the patient has experienced some sort of trauma, such as a fractured spine, or because the person develops a neuromuscular condition like muscular dystrophy, or a metabolic condition like osteoporosis that softens the bones. Most often, however, adult scoliosis develops in adolescence, and is the "idiopathic" variety, which means it occurs for no apparent reason.

Q: Will untreated adult scoliosis get worse year after year?
A: I've followed patients for over twenty years, and have found that probably 60% of adult patients do not get worse. Of the remaining 40% about 10% show a very significant progression, while the other 30% will show a very mild progression, maybe less than one degree per year.
Q: Are there any factors that can decrease or increase one's risk of progression?
A: Yes, there are. The person who is sedentary and overweight is inviting problems.

Q: What treatments are available for adults with scoliosis?

conni60640
03-12-2007, 09:06 AM
I was wondering if anyone had ever read about having a spinal tap as a child, could ever play into it.Someone told me Hitler caused Scoliosis to happen in some people .....some of his weird experiments on the spine.

I doubt very much that a spinal tap could cause scoliosis... however, I do know that a laminectomy (in which they remove the back bones of the vertbra that go over the spinal cord) may as it can reduce the support in one area... most likely in relation to Hitler he was doing some serious messing with the spine, not just needles...

Also, with weird ribs sticking out, is it possible Michael's father had scoli, since the twisting can make the ribs more prominent on one side of the body... Sometimes rotation of the spine causes more obvious problems than the side to side curving does... My son's ribs weren't affected but his spine twisted below the ribs, and you could see 1/3 of his ribcage on one side and 2/3 of it on the other side, with the opposite in the back... rather than seeing half and half with the sternum and the spine in the middle like normal...

Michael Barga
03-12-2007, 11:43 AM
The reason I asked about the spinal tap was when I asked the surgeon he really did not say no way, just kinda slipped around the question and said oh no I doubt it very much....etc..I do remember how hard they had it doing a spinal tap on him.I was in the room.My husband was told as a child he had ( floating ribs) never have heard that term since..its like his lower ribs stick out funny on one side...but it does not look like Michael's... his shoulders are even and when he bends there is no rib hump....He did see a Chiropractor ( this one is an actual medical Dr too!)many years ago and there was some rotation noted? and he was told his back looked like he had jumped out of a plane with no chute. But they never said Scoliosis and from the back one can not tell like you can on mIchael.They did tell him to expect a lot of trouble down the road and he would get worse as time went on( could not believe he had not been in pain for years.It has been almost 12 years and he has not ever went back, never has hurt again. He had strained his back at work.He is 52 now. We have heard for years that Michael and his Dad walk just alike...it is a very distinctive way of walking/standing.My son was working at his factory and a Driver who had never met him walked up and said you have to be Mikes son.He had worked with my husband years before!!He never saw his face it was the walk. Its not a handicapp type of walk..its hard to describe..their stride is very long and its in their back position too...My other sons walk like him too but not as extreme as Michael.Michael even said the other night I bet Dad has it too just a different way AND OF COURSE he brought up the fact that Dad does not have trouble like they predicted...at least not yet.

scoliboymom, been following your updates about surgery... will keep you guys in our heart and prayers

Beckymk,thinking of you guys and I can relate about the surgery questions and fears.Eye glasses here too...I keep thinking what if down the road they find problems with the eye surgery...I think of hormone replacement therapy and how viewpoints have changed on that.I wish sometimes as a family we did not question things so much but we can not help it.I think it is born into me and maybe I passed it along to the boys.We have never followed the crowd along quietly....not saying we do not follow sometimes but it has never been quietly??!! We do have some good discussions on the way.

Bill's mom
04-20-2007, 11:32 AM
I haven't been on this board for quite a while. (Came back on today to check out what has been said about spinal fusion patients and roller coasters.) Having had a son diagnosed with scoliosis, I wanted to respond to you.

1. Guilt. Oh I can so relate. I found my son's scoliosis the summer after 9th grade. (He did not like to go shirtless either.) Because he still had some growing to do and the curves were so advanced, surgery was our only option. (And now, three years later, I can't even tell you his numbers! - even though I thought I'd never forget them.) I cried every day for a long time because I felt so guilty about not having caught it. (Our orthopedist was very sweet and said that many parents don't catch it. He said he's had patients whose parents were doctors and that the scoli was caught by someone else.) So take comfort in knowing others feel the guilt.

2. Because my son has asthma, he had to see a pulmonologist before surgery. She required an x-ray. The x-ray showed that his scoliosis was squishing one of his lungs. Just wanted to throw that information into the discussion; scoliosis can affect other organs and that may create a greater need for surgery.

Good luck to you and your son on his decision. As I said, my son had the surgery in 2004 and, so far, we have not regretted the decision and would do it again but I am aware it is a BIG decision.

Susan

ARN010
04-09-2008, 12:44 AM
Thanks for sharing what you are going through. I am a mom of a girl diagnosed with 26 degrees at age 6. She is 10 now and surgery is in August. I have the whole gamut of feelings. Guilt, anger, depression, etc. It's so hard being a parent. I so wish it were me instead. With my daughter's case, she has a hump forming and if we fuse now (she's still growing) we can avoid messing with the lumbar spine which is where I think a lot of later pain may come up. Anyhow, I am just looking for support--I was in tears a lot today (just found out curve went from 33 to 49 in last 5 mos.). Thanks and take care.

ARN010
04-11-2008, 11:20 AM
My daughter who was diagnosed at 6 with a 26 degree curve, then went to 33 Oct. 2007 and March 2008 has gone to 49 in just 5 months. She does not experience pain.

She does get tension in her trapezius / shoulder particularly when playing piano and she does get 3 migraines/year but no pain. Anyhow, this is similar pain/tension to the rest of us.

One reason I am opting for surgery now is to avoid involving her lumbar spine which could happen if we wait. Now it is just thoracic. I have read research that shows a lot of pain when the lumbar spine is involved and becoming a chronic condition sometimes starting 5-10 years out but making life very difficult.

Take care I've got to run now. Will read posts later.