View Full Version : Understanding Diagnosis

04-27-2005, 06:35 AM
comic sanssize 1color blackMy 10 year old(11 next month) was complaining of chest and abdominal pain, so I took her to her doctor. The doctor took x-rays to see if it would show anything. It didn't (we found out later she had mono), but scoliosis at 18 degree did. So now she will be seeing a orthopedic surgeon at Riley Hospital in Indiana in June. So my question is, what does 18 degrees mean? It obviously is bad enough to see a specialists, but I'm not sure how bad that is. This has my husband and I very upset, as we mostly don't understand any of this. I found out at her age that I had it as well, but I had nothing more than a few x-rays to keep and eye on it, and some physical therapy when I was a teen for some pain. We're very confused, any help would be so appreciated!! Thanks!!

04-27-2005, 11:42 AM
Dear momof2
I wouldn't get too worried just yet, I was 13 when I was diagnosed with crippling scoliosis, that's when the curve keeps going until it severs your spine...I was already at almost a 90 degree angle so they had no option but to operate. Scoliosis usually shows up at puberty but it could just stay a slight curve forever...if it stays under 40 degrees they usually won't operate and just keep an eye on it. My little sister has a slight curve which doesn't bother her at all, she's almost 18 now and I'm almost 26 I had the operation in 1994, and I'm living a pretty normal life have a husband of 4 yrs and 2 kids. Hopefully she won't have to have the surgery...but if it gets worse then let us know...our thoughts and prayers are with you and your family.

I hope this has helped if you have any more questions feel free to ask.
GOOD LUCK! Kristie

04-27-2005, 12:23 PM
Hi Momof2...

Fortunately, there's only about a 25% chance of progression for your daughter, so the specialist will presumably ask you to return in 3-6 mos. for a followup. Here's a chart that shows the probability of progression:



04-27-2005, 07:21 PM
Thanks so much for your words, they have made us feel much better!! I am hopeful now that all will be fine, and no matter what does happen, we will get through it. I was reading some old posts and read one where the mother felt guilty because she felt like she gave this to her daughter. I supose that's how I feel as well. My scoliosis has caused me some mild pain in the past, but when I was 23 I found out that I had a degenerative disk disease(I wont attempt to spell the full name...haha), and I have had troubles ever since. I've seen a neurosurgeon, and he advised against surgery as he said it would only make it worse. So I've had my share of back troubles and I do feel somewhat guilty. I just pray that through learning about this early on we can do what's necessary to help her. Thanks again for you words, and time. This is an amazing forum and such a support center for so many people.

04-27-2005, 11:00 PM
Hi Mandy,
Isn't this board great? :) Do you mind if I ask, how do you best manage the degenerative disk issues? I also have one very bad disk in my low back and struggle to manage it. It's not often I get the chance to ask somebody else, so if you have anything you've learned you think might help it would be great to know about them. You can also private message me if you rather communicate that way. Thanks so much, and I'm glad things look hopeful for your daughter. I got my scoliosis from my dad's side of the family, and I would never switch them for anybody else even if I did end up with one nasty gene :)
Take care ~Laura

Stephen's mom
04-28-2005, 03:50 AM
I just recently found out my 10 year old son has this and so far I have learned that it is nobody's fault and your daughter just might be the same forever and not need any aggressive treament. The specialist is a good thing doesn't mean that it is so bad that she will need anything done right this second. From what Ihave learned so far they might put her in a brace worse case. there are so many ways for treatment that until you talk to the specialist don't panic. I have found that after I had some time to swollow this news I talked to my son and explained it to him and he is okay with it. I am suprised the school didn't notice anything sooner but then again my son's school only test from 5th grade and up but the Dr should have found it at the yearly check ups.

Just learn all that you can so you feel you can make informative deciions when that need arises. When in doubt go for a second opinion.

take care and I am sure everything will work out just fine. deep breath and let it sink in. When I first posted here I had not talked to anyone not even my husband really and I cried posting but it helped.

04-28-2005, 08:48 AM
I agree with those who wonder why the doctor didn't notice the scoliosis earlier. I talked to a chiropractor who isn't even my own,but heard by word of mouth about my daughter's pending surgery and called to see if surgery was really needed. When he heard her curve is 68 and getting worse, he said she definitely needs surgery. He mentioned that it was too bad they couldn't have caught it earlier and possible prevented surgery, and how awful it is for her to have to go through this. (that part I felt was a little overdone on his part). It happens that I was at a Creative Memories crop last Saturday and found a photo of my daughter from before her last checkup that showed no scoliosis, according to the PA. She was bending over in the photo and it looks like she has the rib hump then that the PA overlooked at her summer camp physical sometime later. The chiro I talked to said that's why he hates to deal with PA's, that they miss things like that. I'm not sure about that, but I have steared clear of PA's recently for similar reasons, when it is more than a good old head cold. Long story short: June, 2003, Erica's PA, in fact, a few doctors, filled in the annual physical form with no scoliosis. November, 2003, I found Erica's rib hump, as she was needing constant back rubs for 2 months. December, 2003, the doctor diagnosed scoliosis and mentioned "modern" surgery available. I, of course, counted that as unnecessary at the time, as I have mild scoliosis myself. Curve of 45 at this first diagnosis, after no scoliosis at the previous physical. Chiro said this doesn't sound right, 45 degree change in 6 months. I suspect she had scoliosis long before we and the DOCTORS saw it, and if we had caught it earlier with a screening, a brace may have contained it. Erica has had physicals at least every 2 years for summer camps, so I would have thought sometime, especially 6 months before my own untrained eyes caught it, that a doctor would have seen it. Past is past, I will live and learn and just help all you forum people to spread the word to urge early and thorough testing. I'll keep this frustration within myself and the forum. Kris

04-28-2005, 10:08 AM
Glad you didn't have small town doctors. Crystal has had numerous chest xrays because she has severe asthma and is very prone to pneumonia. The doctors would ask her if she ever injured her back. She would say no and they would say okay and never to any farther with it. I didn't know anything about scoliosis at that time, so never questioned the doctors. I suspect Crystal has had this since she was 5-6 years old and we just didn't know anything about it and the doctors in our small communities were pretty lame about it. So, I understand the guilt feeling that you all may experience.

It was actually another parent that told me about scoliosis and said we should have Crystal checked. She even gave me the name of a pediatrician that would be good at doing the preliminary diagnosis. I am so thankful to that mom, but then she has a daughter that is in a brace with scoliosis.

I find that I look at other kids now as they walk past, bend over, etc.

Still trying to leave to take kids to school. I better get. It's 7:09 and they have to be there by 7:25.

'til later,

04-28-2005, 10:30 AM
Hi Laura,

I found out that I had scoliosis when I was in the 5th grade, same as my daughter. The school reported it to my mom, who brought it up to my doc at my next appiontment. He said as long as there was no pain, to not worry about it then. As I went through my 'growth spurt' and puberty, I did start to have pain, and sometimes alot of it. So my mom took me to the doc and they did some x-rays and found out that in fact I had scoliosis, but it didn't warrant any treatment then. They gave me some excercises to do and that was it. My back hurt me on and off until I was in the 8th grade when the pain got so bad that I went through some physical therapy to help, and it did help. I was pretty much use to it through my high school years, (to busy with my social life to go to the pt again) and then I got married and had my daughter(actually in reverse order), and my back started bothering me more. I put on weight, which did not help. Then at the age of 23 I had my son. Since then it's been a nightmare. When I gave birth to him(he was according to an ultrasound suppose to be between 71/2 lbs. and 91/2 lbs) the instant he was born I was in excruciating pain!! Ultrasounds lie...he was 10lbs and 10 ozs. :eek: No wonder I had such a horrible time having him. But like I said, the pain was instant. I went back for a check up with my ob/gyn after 3 weeks because I started having such bad muscle spasms all over my entire body there were times I was afraid I would drop my baby. He thought that MAYBE I had some nerve damage, but it was unlikely. He said to give it more time. So I fired him as my doctor and went to someone else. They did a xray instantly and said they thought I should have an MRI. The MRI showed that I had 2 disks that had degenerated to a point where it seemed that they were bulging and some of the pain I felt was from the disks but also from nerves in my back. So my next step was to see a neurosurgeon, and he took one look at my MRI and said he would not operate and he hoped that I would never let any one else operate. What he would have done was actaully removed the disks and fused the bones together. He said it works perfectly for one disk removal, but with 2 disks to be removed, it would only make my pain and mobility worse. Well with 2 kids, one an infant, that wasn't an option for me. He suggested looking into pain management, and meds that might help. But so far nothing has helped. I actually have given up on the pain meds, because I didn't want to become addicted to them. Anti-inflamatory meds hurt my stomach horribly. But I am constantly watching what I do. If something heavy needs moved, my husband or someone else does it. Oh and also, when I had my son, he stretched my pelvic bone to the point that it couldn't heal properly, but through Physical Therapy for that(6 months...3 times a week) it did help my pelvic pain I was having. I was in so much pain all over my entire body that I didn't even realise that something was amiss there! :( I don't know if this will help, but I wanted to post it so if there were others with disk problems too, maybe my story would help them as well. My diagnosis was called L4 and L5, L5 and S1 Spondalosis.(I hope I spelled that right, and remembered it right as well) I also have a great deal of pain from my siatic(spelling again) nerve. Parts of my legs will go completely numb at times, or I will get the feeling of bugs crawling on me. I also have a spot on my side that feels like I'm getting stung by a bee. But it's not a bee, it's my nerves.

I do my very best to keep up with my kids, but I've been honest about my condition too. They know to try and 'becareful' of mommies back.

I hope this helps some, in my case it's just a matter of watching what I do, and at times I do have to take a prescription pain med, but I try to hold off on that until it's unbearable. I just don't feel comfortable taking them while watching my kids. What options has the doc told you for your disk problem?

I also get severe migraines. They started shortly after my son was born, not sure if its connected to the back thing or not, but its odd how it happened at the same time. I was told that my disk disease is a heriditary thing, but I swear, the second my son was born I could feel something pop, and pain. There could be no connection, just something that's always been in the back of my mind that maybe they are connected.

Well, I hope this helps, and that my spelling isn't so bad. haha Everyone here speaks fluent typo right? :p Thanks again to everyone for their support, I can't tell you how much I appreciate it!!!


04-28-2005, 11:08 AM

I am so sorry to hear you are in constant pain. Have you seen another neursurgeon for 2nd opinion? I don't have scoliosis (my daughter just diagonosed as having idiopathic scoliosis), but I do have herinated disks between L4,L5 and L5, S1. When it started, taking showing is a chanllenge because of pain. I have pain all the way down to my left foot. My doctor give me some anti-inflamatory and muscle relaxation med but it did not help. Then she referred me to a pain management doctor, who injected sterod(mis-spell) into where herinated disks are. A few days later I am pain free. But I constant numbness and tingle on part of my left foot because of nerve damage. After that I tried acupucture, chrio and physical therapy and last surgery to trim the herinated disk between L5-S1. A year later now I still have numbness on part of my left foot, but much better. I practice yoga to keep myself from getting into trouble again.

As for my daughter, her 5th grade school check did not reveal she has scoliosis a year ago. I think it was last summer my husband noticed some unevenness when she bends over. But I did not know it is a sign of scoliosis so I did not take her to see her doc until a month ago for her annual check-up. The doc did not check to see if she has scoliosis, but ask me if I have any questions. All of sudden I remembered her unevenness back. At first look her doctor did not think she has scoliosis, maybe slight assymtric spine. But she did send us to take a x-ray. As it turns out her curve is 35 and 30 degree already, too late for brace (risser is 4 out 5?). We are going to see another doc for 2nd opinion.


04-28-2005, 01:07 PM
Wow, this is almost scary! I now see that several of us are questioning the "scoliosis checks" done by professionals. Can you believe this is actually lawsuit material? I have had things done in the past that I could have sued about, but decided it wasn't worth it. I am beginning to wonder if we should compile our research and start something. Just a thought. How many people are getting their scoliosis passed by until it is too late to avoid surgery? I am also surprised the physical exam didn't include scoliosis, Mandy. I looked at the copy of my daughter's records which we need to take when we have her surgery. The appointment before we noticed her scoliosis had an area to check off for scoliosis, so it basically mandated she be checked at her physical. I am curious exactly how the PA at the time checked her for scoliosis, and possibly missed it. I told the chiro yesterday that it is past, and no sense me trying to lay blame, but it occurs to me that if we don't bring these cases public and tell the medical profession, if it is happening on a regular basis, noone will ever know of the need to check more thoroughly. To me, one case, my daughter's, doesn't mean I complain and point fingers at the PA, but when it may be a problem of general medical practice, it becomes an issue to consider acting on somehow. Kris

04-28-2005, 01:54 PM
I agree with so many of you and I think that I will ask my daughters pediatrician why children aren't checked sooner. It's silly really, if you think about it, a few minutes to spend looking at the spine and it could save alot of pain and heartache.

I haven't checked into a 2nd opinion on my back, mostly because for about 3 years I was constantly seeing doctors and physical therapists, and I got just a little tired of going to the doctor. I was getting frustrated more than anything, and it was taking time away from my family. Nothing seemed to work, so I thought, well that's time I could be spending with my family. It also doesn't help that I live WAY out in the country. Very rural little town!! I love it, but it means your in the middle of nowhere and no one around you. Including a good orthopedic doctor. When I saw the neurosurgeon, it was a 21/2 hour drive one way, and long car trips are one thing that really bothers my back. So I was hurting before I got there.

Jin, you mentioned Yoga. Does that help. I know part of my problem is that my back muscles are weak, but exercise hurts. Laying flat on my back unless it's in bed(and then it's not for long) is impossible. Do you have any other ideas for strengthening back muscles?
Thanks All!!
Until Later,
Mandy :D

Stephen's mom
04-28-2005, 02:02 PM
That is a very good point. Many of you may not be in pain and such to the extent you are if the Dr's did something back then. Also remember to do research on years certain treaments began and such because as the years go by they learn more and more about it and ways to treat it. I am going to the school nurse and going to try and change the school checks to start as young as a 1st grader. That is a start I guess. Had these things been checked sooner I might know if it was due to enjury or over a period of time that this spine took this curve. With a growth spurt about to come I need to watch it more closly. I might even mark his back with a permenant marker since I am no pro at this stuff.

well good luck to all of you and so sorry to hear so many are in constant pain.

04-28-2005, 04:22 PM

Yoga is very good for stretch and strengthing muscle. The one of the reasons I got herinated disks is I have a weak and stiff back. There is a DVD called 'Yoga for Scoliosis' I ordered for my daughter. I have to see how good it is.

I won't point my finger at my doc yet because I remembered she did check scoliosis on my daughter on her 10th or 11th yrs check-up. Mabybe she had not got chance to check yet before I asked her.

04-29-2005, 12:41 AM
It's nice to know they do check ups now when I was younger, 13 I never even heard of scoliosis, my diagnosis was completely accidental...I went to the doctor 'cause I had the flu, so he decided to go ahead and do my yearly check up since I had to come back in 2 weeks, good thing, you didn't even need an x-ray to see my horrible curve (almost 90 degree angle and I had an "S" curve).
The funny part is scoliosis runs on my Dad's side so shouldn't the doctor have been watching since it's more prone to girls?? Oh yeah I never had a scoliosis screening before they found my curve but when I started high school they checked for it...ironic huh?!? I told them it's ok I already have it and a steel rod to go with it. We should find a way to get all doctors to pay more attention to both parents to see what could be in our future. Anyway, I'm glad we have this site so we can talk with people who understand....Thank you all for your support!!! Kristie

25 y/o
steel rod fused to 3/4 of spine and 4 compression screws plus my left hipbone
all on my left side...even cut from left side to middle of my back.

05-03-2005, 07:08 AM
Toy, that is a good idea, to talk to the school nurse about screenings. Let me know how that goes. I plan to eventually inform the clinic of my findings regarding their lack of early diagnosis on my daughter, just to make them aware. To think not so many years ago there was not spine surgery available at all! I appreciate what medical treatments are available now. A friend of mine tells me about her friend years ago who wore a body brace after surgery and needed assistance to move, sit, etc., as this brace came clear up around her chin. Surgery also used to involve months or a year of laying still in bed as the spine fused. Now if we can get these things diagnosed properly, but noone is perfect. Should be interesting what you find from the nurse. Kris