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MacksMom
05-06-2007, 11:41 PM
I'm new here. My daughter, Mackenzie, was recently diagonosed with scoliosis (40 degree thoracolumbar; 28 degree thoracic). She gets her Boston brace this coming Thursday and is to wear it 23 hours a day. Mackenzie is 13 and in 8th grade. She has already declared she won't wear it to school - that it would be "social suicide".

I'm a mess. We've already been told that she will more than likely need surgery when she stops growing - which the doctor estimates to be about 18 months (risser 2.5-3? not really sure what this means).

This has been really tough on me. I took her to the pediatrician a little over a year ago because one hip was higher than the other and my neighbor suggested I have her checked for scoliosis. The ped said she didn't have it - and I (stupidly) thought she was ok forever. He did x-ray her legs to see if there was a leg length discrepancy. There wasn't - so he said he'd keep an eye on her (in case of a congenital hip problem) and to bring her back in within the next year.

7 months later her father was killed in an accident and I didn't get her back. I finally made an appointment in December and a week before, the office called and cancelled because her ped was out on a family medical emergency. I didn't feel any urgency. I called again in February. He was still out. Then in March, I noticed Mackenzie's back looked weird. Of course, I panicked. Called a friend who is an ortho spine and he saw her. He immediately referred us to a specialist and that's where we are today. (It helps to be a hospital administrator - unfortunately, my hospital does not do peds).

I vascilate between feeling guilty that I didn't take her back sooner - and angry with the pediatrician who totally missed the scoliosis (no x-ray of her back and both specialists have said it was there a year ago - it doesn't go from 0 to 40 in a little over a year).

Mackenzie has been through enough in the last year. My heart breaks for her. And I break in tears at odd moments.

I appreciate you listening. I'm sure I'll have lots of questions (already do). I plan to take her for a 2nd and a 3rd opinion as soon as she gets her brace (and I get her x-ray back).

Thanks again.

Mackenzie's Mom (Lisa)

mom2cole
05-07-2007, 01:00 AM
Hi
Try not to beat yourself up over not getting your daughter into the Dr sooner or not noticing,etc.. sooner. It sounds like you both have been thru the ringer this past year (& I am so so sorry for the passing of your husband also) and now all you can do is move forward with the scoliosis. It sounds like you are now on the right track and doing a great job! Scoliosis is not usually an emergency situation and right now her curve is not major so you have time to find the right Dr and find the right treatment to do.

I noticed you are from OC, CA and I too am from the OC-Huntington Beach to be exact. My son, Cole is also 13 and has severe congenital scoliosis that he was born with. You know even tho he was born with it and found out at birth I too regret not getting him to a Ped Ortho Spine specialist alot sooner. He was born with scoliosis and some other medical problems and was in neonatal for a week after birth then we were sent to a regular sports medicine Ortho Dr(that treated adults also) per our Insurance-HMO at the time which has now changed, thank goodness. Finally after just wasting time going in for periodic xrays and nothing happening I was at my wits end and starting to write a letter to the insurance Co to get him referred elsewhere that this Ortho Dr realized how severe Cole's curve was and sent us to UCLA. So by then it was way over 100 degrees and so at 18 months Cole had his first fusion surgery. Now after 9 surgeries on his back (which include 2 rods and halo surgery) he is going to have a final fusion surgery this summer that will hopefully be his final surgery. So what I am saying is I can understand your frustration with not getting her in sooner, as the Mommy we know we have to do what is right for our child but sometimes things just dont work out that way right away and eventually you get on track. We now go to Childrens Hospital in Los Angeles and have had nothing but great Drs since going to UCLA. What Dr/Hospital do you go to? CHOC? I know others that see the Orthos there and I have heard good things about them, we go there for Pulminory and have been for other specialists also. Where were you thinking of going for other opinions? I highly recommend CHLA and see either Dr Tolo (Director of Ped Ortho) or Dr Skaggs (Asst Director). We saw Tolo for 3 yrs (he did two surgeries including Halo surgery) and now we see Skaggs.

You have found a great place for much support and to answer many questions that I am sure you have. Oh what type of scoliosis does Mackenzie have? Obviously not the same as Cole's as that you find at birth or as baby. Good luck with everything and feel free to send me a private email if prefer or if you want me direct email let me know. I feel a slight connection since you live in Orange Cty and then your daughter being same age as Cole. Also, hopefully Carmell will chime in here soon - she is wonderful and a wealth of info! Has helped me thru alot over the yrs. :)
Stacey

MATJESNIC
05-07-2007, 07:08 AM
Lisa,

I am very sorry to hear of the passing of your husband. I hope you have a lot of family around you. Please know how much I can relate to you regarding your daughter and her scoliosis. Everyone here knows my story where my Nicole was checked by the ped in the beginning of 5th grade and I was told she had a slight curve and should bring her back in 6 months. I didn't bring her back for that, but throughout the year she had asthma and bronchitis and was back at the doctor at least 2 times. I didn't remember or didn't think it was important for them to look at her back. None of the doctors who I saw mentioned anything so I guess it wasn't on her record. When I was a teen they had sent me for x-rays because they thought I had scoli and it turned out to be nothing. So I didn't take this seriously. Ninety percent of the kids would turn out to have nothing.

One year later at her next appt., her ped's face was white when she looked at her back. We went to the ortho and found out she has the exact curves your daughter has. With a risser at 0, they told us she will eventually need surgery and prescribed a boston brace.

I believe I was depressed for months. I cried and cried out of guilt and fear for my daughter. My ped should have sent me for x-rays or told me to go to an ortho, I would have done that. I dropped the ball.

We refused to put her in that brace and she wears a Spinecor. It is 20 months later and her curves are in the 40's and 30's. She is probably done growing and has had her period for a full year.

Her back looks terrible to me. When she bends down she has a rib hump. She is a passionate dancer and competes. We go back in May to see how she is.

We are in the same boat. Please know we will all get through this one way or another. Everything will be okay for our girls. Let me know if you want to talk further.

God Bless.

Melissa

scoliboymom
05-07-2007, 10:10 AM
Hi Lisa,
I too am very sorry to hear your husband has passed away. You've had a rough year. Please come and vent here as often as you need to. I personally find this forum (and spinekids.com) to be the friends who really understand what we are going through and I always feel better after venting here.
Our discovery of our sons scoliosis is similar to yours.
Unfortunately his was way past the bracing phase when discovered and I suffered immense feelings of guilt and saddness that I just hadn't seen it before.
The first doctor we went to (our regular doctor was on holiday) said yes he has scoliosis but it isn't too bad -he based his theory on physical examination.
Patrick was xrayed-at my request. The doctor set us up -on my request again- with an general ortho for an appointment 10 months from that day. If we went with that we would not yet have seen this ortho and my sons curves are now past 80 degrees and he is having surgery next week. As it was my real doctor saw the xrays when she got back from vacation, called us in immediately and set us up with an ortho at a children's hospital (she told us the other referal doctor doesn't even deal with scoliosis so if we had seen him after the ten months we would have had to wait further time to get an appointment at Sick Kids Hospital) I sometimes think I should go back to that first doctor and tell him of his major mistake.
I too have shed so many tears over the past 10 months and they still keep falling.
I can't help you with the bracing issue because we have never delt with it but I know with my son I made sure he knew everything about scoliosis and the longterm prognosis and all the different scenarios. It made it much easier for him to accept his need for surgery when I had to tell him this. So I am thinking with your daughter the more she knows and understands the easier it might be for her to accept the brace. Also encourage her to talk to others especially on spinekids.com. The kids are very supportive of each other.
I wish you luck and please come back with questions or just to vent
Ramona

LATigner
05-07-2007, 12:06 PM
I wanted to add my condolences on the loss of your husband - it must be so hard. I'm in Orange County too - Yorba Linda as a matter of fact. My daughter is now almost 17 with 40/45 degree curves. We discovered she had scoliosis when a friend pointed out a weird raised area on her back. I thought it was some kind of tumor and was freaking out. Turned out it was a 39 degree curve. She wore a hard brace and more recently SpineCor and we have a wonderful doctor in Tustin. The initial couple of years were scary and I was a mess, always feeling sick to my stomach with fear. It will get better. If you'd like to talk in person, just send me a private e-mail and I'll give you my phone number.

Carmell
05-07-2007, 12:31 PM
Welcome Lisa and Mackenzie,

Ditto what the others said. You have been through more than your share of trials and stresses in life. I just wanted to add that guilt and regret are useless emotions. Dwelling on what you should have done, or what others should have done won't change the facts that you are dealing with a child who has scoliosis. You both will do great. Like the others said, scoliosis is rarely an emergency condition. You have time to research and find the right specialist who has the right plan for her. I suggest you see a pediatric scoliosis specialist who has extensive experience treating similar cases. Two of my children have scoliosis. My 21yr old daughter has a 35 degree lumbar curve with an upper compensatory curve. She wore a brace for about 6 months total. She didn't like being in the brace at all. Her highest curve measurement was 40 degrees, but has settled to about 35 degrees where it has maintained for several years now. She has never had surgery. It is something we watch, occasionally, and hope (and pray) she'll never progress and need surgery as an adult.

My point is that there isn't a single right answer for scoliosis treatment. You must find the right treatment option for her, one that works best for you. Maybe the wait-and-see game is best for you both. That is an acceptable option, if you know what to watch for and are vigilant in getting xrays and observing the spine. Exercise is great for anyone with spine issues. Keeping your muscles and soft tissues strong and supporting the spine helps a lot, especially if surgery is one day a recommendation. The better off you are physically, the better the outcome, generally.

Take a few deep breaths. This is going to be just fine. You are doing great. Do what you need to to get over the guilt, then move on. Try to enjoy life. These kids grow up so quickly. You don't want to regret not sharing each day with her and having good memories for both of you. Keep us posted on what you decide.

My best,

MacksMom
05-07-2007, 12:48 PM
Thanks everyone for the support. We live in Tustin Ranch. Mackenzie was seen by Dr. Nitin Bhatia at UCI. I would like to have her see Dr. Skaggs at CHLA for a second opinion - as well as Dr. Peter Newton at Children's Hospital, San Diego. I hear they both have wonderful reputations.

As a hospital administrator, I know the importance of finding a doc who has done enough of these surgeries to make them an expert - but one who is not too advanced in age (for obvious reasons).

Dr. Bhatia is the co-director of the UCI Spine Center, has wonderful credentials including an ortho residency at UCLA, a spine fellowship at University of Miami/Jackson Memorial and a pediatric spine fellowship at Miami Children's. We really liked him and the spine surgeon at my hospital raves about him. We may choose to stay with him - but again, I'd like her seen for second opinions by surgeons who focus only on children.

One of you mentioned a doctor in Tustin - who does your daughter see? I have spent the last month researching everything there is to know about scoliosis. Mackenzie has AIS - and I feel we could have prevented it getting so big had the pediatrician caught it last year. He, too, only did a visual check.

Of course, Mackenzie would rather just have surgery and get it over with - even though she understands why Dr. Bhatia wants to wait until she's stopped growing. She just started her period in December - so he feels she has a year and a half of growth left.

Thanks again for the warm welcome. I am much better than I was in the beginning. It was just so hard - and too much to take in. Couldn't figure out if I was depressed because of the scoliosis or it was hormones - or both.

Lisa

MATJESNIC
05-07-2007, 01:46 PM
Lisa,

The good news is that her major growth spurt is probably behind her. Most girls only grow an inch or two more after they get their period. How tall is she? Our ortho said the most critical growth spurt is the one before the period. You are past that point. It is possible she won't progress further. Keep up the hope.

LATigner
05-07-2007, 04:33 PM
To Mack's mom,
You asked about our doctor in Tustin - Dr. David Gorrie. He is not an orthopedic surgeon. My daughter sees him for the SpineCor brace and for physical therapy. I just sent in an application to Shriners LA for a surgical opinion. I think my daughter is on the borderline but she is interested in finding out about the surgery. Others on the forum rave about the doctors at the various Shriners Hospitals. I'm happy you gave the names of the doctors you have seen - it will be good to see one of them for a second opinion.

MacksMom
05-07-2007, 04:59 PM
Mackenzie is 5'2". Her doctor says she'd be about 1 1/2 to 2 inches taller without her curves. I am 5'5" and her dad was 5'10", so I'm guessing that
5 4 or 5 5 would be about right for her.

Thanks for the referral to spinekids.com. I think I'll try to get her to "lurk" there (until she gets brave enough to join in). At least it should make her feel a little bit better knowing there are lots of kids with scoliosis.

Is LA Shriners the same as Childrens LA (CHLA)? You'd think I'd know that.

I'm hoping that Thursday won't be too traumatic for her. I worry that the brace will either make her retreat inside herself or push her the other way.

I do have a question for those of you who's children wore the brace. Were they compliant with the 23/7 or whatever hours they were supposed to wear the brace? It just seems like a lot to me - so I can't imagine how she feels.

Lisa

Carmell
05-07-2007, 06:08 PM
Hi again, Lisa,

About bracing - my daughter's ortho believes that 23/7 in the brace can cause muscle atrophy (for those dedicated to wearing it the actual 23 hours a day). Their "new" thinking is to wear the brace 16-18 hours a day, with some PT to teach them to use their own back muscles to support the spine as if they were in the brace still. Again, this takes dedication and commitment, but it is do-able. Being able to use your own back/side muscles to support the spine helps the muscles not atrophy and helps them stay strong while in the waiting stage.

Another comment is that some orthos don't have 100% confidence in bracing to begin with. Some believe that a curve will progress with or without a brace, so why bother being in a brace (those patients who have underlying causes for scoliosis like neuromuscular disease, etc. are exceptions). My daughter had a TLSO brace but only wore it 12 hours a day, at most. She was one who refused to wear the brace, even knowing what scoliosis surgery was like. My 11yr old son has had multiple surgeries to stabilize his scoliosis. Bracing works for some, and others, it doesn't. Each patient is very different. Each brace type is different, and has a different purpose. Lots of things to know. Having a PEDIATRIC orthopedic spine specialist would be your best bet. Having more than one opinion will help too.

Good luck and keep us posted.

ShockedMom
05-07-2007, 06:21 PM
Hi,

I'm also new to all of this. My daughter was diagnosed last week with a 30 degree and a 20 degree. I have spent the last week reading this forum and any other site that was suggested. My daughter had a 10 degree and a 11 degree 4 years ago. We watched her closely for 1 1/2 years until her ped ortho said we could just monitor her. When my younger daughter got checked, we decided to recheck my older daughter. I was shocked when her minor curves grew to severe!

After spending so much time on the internet, I realize curves can and often do grow regardless of wearing a brace. Your daughter could have spent the last year in a brace and it might not have made one bit of difference! Read the posts from the girls that are wearing braces now and how many of them are still planning on going to surgery. Maybe God was looking out for you when you didn't get her checked. She had enough on her plate the last year without having to deal with a back brace! So did you!

Don't beat yourself up. Research, get her checked and rechecked. Only peole with curves over 100 degrees have serious health issues. What I found was the main reason people get surgery for AIS is so they look better.

FYI, my grandmother had AIS, had a cast, had a brace and felt it did not make one bit of difference. When my father had AIS, she chose to do nothing. When I was diagnosed with AIS, they told me to do exercises which my daughter's doctor basically means no treatment.

Now, my daughter's ped ortho is doing a study to find out if braces work. I told him regardless of a study we will do what is right. He said we don't know for sure what is right.

Sorry for being so long winded. I just want to say it's ok. What you did or didn't do is ok. There was a very good chance that everything would have turned out the same!

marmyte
05-07-2007, 07:42 PM
i'm really sorry to hear about everything you've been through. i think the first thing (and this is probably the hardest as a parent) is to stop beating yourself up about it. i'm no medical professional but i'm going to contradict what you said about it being impossible for a person's spine to go from 0 to 40 in a year: it is possible for things to happen that quickly, i have seen this in other patients and my surgeon has mentioned it to me and my parents too.

i think my mum hid it from me but when i was diagnosed, i'm pretty sure she felt similarly to you and suffered from guilt. my surgeon was quick to tell her that she shouldn't feel guilty, that she'd done well to pick up on my problem when she did, never mind miss it for however long it was there. some people don't realise until they are much much older that something is wrong and whilst it's not impossible to seek treatment as late on as in your eighties, it's much easier to treat a teenager than it is an octagenarian.

as a parent you can only ever do your best and i think that's what you're doing (well done on pulling strings at the hospital - if you've got connections, use them!)

as for your daughter's belief that a brace will be "social suicide"... i know exactly how she feels and i'm sure many people can relate. but at 13, i think it's important to encourage her to try and look at the long term. i hated the idea of being braced but what it did was buy me time. it allowed me to continue growing and i was able to put surgery off for four years without my scoliosis getting dramatically worse.

i hope that she has a core of good friends who she can talk to and who can offer her support. i also hope that she doesn't suffer at the hands of some thoughtless peers at school who may find it amusing that she has to wear a brace. it's a very hard lesson to learn that the best thing for you is not always the easiest thing.

best of luck on getting through this, if you have any questions, feel free to ask.

MATJESNIC
05-07-2007, 07:59 PM
I think everyone has given Lisa amazing advice.

But Shocked Mom, I have to disagree with you when you say that most of the people have the surgery because of cosmetic reasons. I have not met one person yet who is in my position who chose surgery for that reason. Just the opposite. They are saying that regardless of the looks, they are only having it done if it is a health issue. My daughter will only have it done if it is medically necessary.

dkopp
05-07-2007, 10:32 PM
Lisa -

Sometimes scoliosis can come on pretty quickly so it is especially easy to miss it. I am a physical therapist and I feel like I didn't do enough to catch my daughter's. It was noted on her school physical in Aug '05 and I looked at her - her spine was barely curved but I did see a small rib hump. I couldn't get an appointment with a pediatric orthopedist until Jan '06 but I wasn't concerned since most cases of scoliosis only require monitoring. Then, at her appointment, I almost cried when I saw how bad it had gotten and felt guilty for not watching it more closely. It was already 44* by her appointment.

We tried the Providence brace for 4 months - this is used only at night so compliance can be alot better (she was 13 then too, now 14). However, by July '06, the curve increased to 56* and the surgeon felt her only option was surgery. Now I wonder if I had pressed for a typical TLSO that has more documented success if the curve would have progressed as much. I tell myself it would have progressed no matter what (and the surgeon feels this way) but that is the "mother guilt" kicking in!

So, do your research and get second and third opinions and follow your gut opinion about what is right for your daughter. Again, remember it is not an emergency surgery and you have some time to look at various options. Good luck to you!

mom2cole
05-08-2007, 01:04 AM
Hello again Lisa-
Just to answer your question regarding Shriners L.A. and CHLA, NO they are not the same Hospital/place. CHLA is Childrens Hospital Los Angeles located at Vermont and Sunset near Hollywood. Shriners Los Angeles is i believe more downtown LA (dont quote me on that tho). We have also been to Shriners once or twice after we went to UCLA for yrs. The Surgeon at UCLA first referred us to Shriners as they have extensive Ped Ortho experience. They explained what surgery they recommended-Halo surgery plus rods,etc.. (sorry this was 8 yrs ago dont recall all detail). They do not (or should I say did not 8 yrs ago at least) have an ICU department and Cole needed a major surgery consisting of Halo traction and rods (turned out to be 2 surgeries actually and one month in Hosp) so he most definitely needed to go to ICU. So...Shriners referred us to CHildrens LA and that is where we have been ever since. Sorry i dont recall the Surgeons names at Shriners but I do know Shriners Hosp are great places and free too boot!

Also, I am not sure who but someone mentioned that you dont have any health issues until curve is way over 100 degrees and i have to disagree a bit on that one. I dont know about Adolescent Idiopathic but I do know health issues can affect Congenital Scoli curves less then 100 degrees tho over 100 for sure will have much more. When curves get so bad the heart and lungs can be affected. The lungs especially seem to be comprimised and you develop things like asthma and respiratory issues-gettting sick very easily when get a cold and get in the lungs so hard to get well easily.
Stacey

MacksMom
05-08-2007, 01:04 PM
Thanks for the clarification Stacey. Sounds like you've been at this for a very long time. A question: why did you switch from Dr. Tolo to Dr. Skaggs? I have had several of the orthopedic surgeons and pediatricians on staff at my hospital tell me to take Mackenzie to Dr. Tolo. I've actually decided to take her to see Dr. Skaggs (who was also referred by one of my orthos on staff) instead.

Lisa

mom2cole
05-08-2007, 03:41 PM
Hi Lisa
Good question, I guess I should have clarified that more on the switch. Dr Tolo operated on Cole with Halo and semi permanent rods surgery then after a couple yrs Cole's curve continued to progress and get bad again. So at the time Dr Skaggs was just starting a new procedure called the titanium rib project (VEPTR) and Tolo suggested we see Skaggs to see if this was somethign Cole should have. It is an expandable rod. Skaggs (and Tolo actually as they collaberate together alot esp on major or hard cases like Cole's)decided Cole needed this rod and so that is how we ended up with Skaggs. Skaggs is very on much on the cutting edge of technology if you ask me tho he did not invent the Veptr rod that was Dr's in TX (also great I hear). I say this about Skaggs as the day b4 surgery for the rod Campbell said No to Cole being a candidate (this was b4 FDA approval and so all surgeries had to have Campbell's (TX Dr) approval before could proceed). So Skaggs came up with a similar rod to use similarly and the next day we were off to surgery. So I highly recommend Tolo also. Tolo is older and been around more but Skaggs is possibly more into the new procedures and I have found his mind is always working and on. Why did you decide Skaggs? I would say you are in good hands with either.

I also heard good things about Dr Newton in SD and almost took Cole there about a yr or two ago but then found he doesnt work with the congenital malformations as much so opted against it. I looked up CHLA's website to verify they do more then just congenital and it looks like it but I think Newton and Childrens SD where he works possibly has more experience in your daughters type. Check out the website to be sure.

Also, I have heard a couple negative things about Skaggs over the many years that I have gone there but nothing so major that I would change DR's and he has done nothign but good for Cole. :)

WE will be at CHLA on May 30th all day for appts with various Dr's preparing for Cole's upcoming final fusion with rods surgery on July 24th.

Where do you live?
STacey

mom2cole
05-08-2007, 03:44 PM
Oops just realized you already said you live in Tustin Ranch. I was rereading your info on current Dr and he sounds very good also. I have heard UCI to be a good place also. You may end up just staying with current Dr but good idea to get other opinions then you can make the decision as to switch or stay where is. Oh also, is Mack getting a brace this Thursday or some appt? I saw you wrote somethign about this Thursday. Good luck with whatever it is!
Stacey

MacksMom
05-09-2007, 02:38 PM
Stacey,

To be perfectly honest, I chose Skaggs because he was younger - but had enough years under his belt to have done a lot of these surgeries. The advice I got from my Medical Staff was to choose someone who was at least 5 years out of their fellowships (and Bhatia is not) - but not too old. I'm sure there are many on this forum who will argue about the age (especially the older end), but that's what every single doctor I talked to advised me of - and I have a very respected Medical Staff at the hospital where I work. They also said the surgeon needed to have done a pediatric spine fellowship - which all have. So that's why I chose Dr. Skaggs over Dr. Tolo. I haven't made the appointment yet because the orthotist has her x-ray.

Mackenzie gets her TLSO brace tomorrow at 4. We were referred to Fountain Valley orthotitics (?) over on Harbor. Mackenzie liked the man who fitted her - mostly since he told her she could take the brace off for special occasions (dances, etc). I'm really dreading tomorrow. It's so hot out right now - and she is already a litttle sauna when she sleeps. Does Cole wear a brace?

Anybody else out there have solutions to the heat and an upstairs that doesn't cool off at night?

Lisa

mom2cole
05-09-2007, 10:30 PM
Hi
I totally understand your reasoning on choosing Skaggs (younger but very experienced) compared to older. Both Skaggs and Tolo are well renowned who travel the World giving lectures and training on different scoliosis subjects but we havent gone to Tolo in years so his travels could have slowed down. But Skaggs has not, that man sometimes is gone alot but then right back in the office and at the Hospital. It has never been a problem for us. I sometimes email him and get info that way or his asst Alison. I actually am waiting for a reply to an email from last wk and I am thinking he is possibly off somewhere or maybe for once on personal vac. :) I may call and ck on that soon as usually he is quicker to respond. I think Skaggs being younger is more on the cutting edge (i think I mentioned this previusly) then say an older Dr like Tolo. For example how we were switched to Skaggs even tho we adored Dr Tolo. Skaggs was working with the Veptr team a new procedure (well 6 yrs ago that is)and was coming up with new procedures, etc.. but Tolo was not.

I do need to tell you that Skaggs personality is not always the best but over the many years we have learned how to handle it and understand that it is just a mind in motion sorta speak. Dr Tolo has a wonderful personality and was just so great with Cole that it set us back a bit when Skaggs had a different personality. But Skaggs also is great with Cole so dont get me wrong plus when it comes down to detail and surgery, Dr Skaggs is wonderful and very complete on covering all bases and answering any questions you may have. Our last appt was to fully discuss the upcoming surgery and I left there feeling so much better abuot the surgery. Skaggs also will tell you he would do this on his own child if needed so that helped us feel more at ease too. Alison, asst is very nice and personable and there nurses are real nice - Janet is specifically Dr Skaggs nurse and she has been a load of help for us over the years. I can call her and get any help needed. If she cant answer it she will get the answer or talk to Skaggs and get right back to me. Janet and Phyllis (I beleive was Tolo's nurse but I think she is also head of the Ortho nurses)dote over Cole whenever we are there. He has been going there for so long, they just adore him.

Cole does not currently wear a brace but he has worn one years ago. His type of scoliosis does not really get any help from a brace so that is why it was never a constant thing he needed to wear for long. I think the last brace was when he was in maybe 1st grade or so but it did not help much and the curve progressed plus it caused him to have worse reflux and stomache issues (even after a whole was cut in tummy area) so he didnt have to wear for long.

I know the heat here right now is bad but it is suppose to cool down so hopefully it wont be too bad for Mackenzie. Tho on the other hand summer is coming so hopefully you can figure out a way of handling the heat and brace. Upstairs most definately is a problem, my bedrooms also get alot hotter when have this weather and unless have a/c not much can do but open windows and put a fan on. I am unsure if a TLSO brace is similar to Cole's or not. Maybe the orthotist can give some tips and ideas.

I saw you got some info on Dr Newton from Renee and I was hoping she would chime in for you as I spoke alot to her when I was thinking about taking Cole there too. I think Dr Newton specializes more in your daughters type of scoli so he definitely sounds like a good opinion too. Much luck tomorrow with the brace and let us know how it goes. Let me know when you get an appt to see Skaggs too. Oh when you go in to him, have a list of questions written down to ask and just dont let him rush out the door until you are satisfied with the info and all questions answered. Sometimes he is so busy he rushes but if I am there for a routine appt and just cking in it is ok but for you on a first time appt or me when need to discuss surgery I definitely need not to be rushed. I am totally rambling but trying to cover all basis for you so you are prepared when arrive. also wanted to tell you that you ,may have a wait on your hands before get called in and then again in the room waiting for Skaggs or possibly even for an xray. Tho the last few appts we have had great luck and not too much wait. We are also so used to it, that it dont bother me much anymore. I make my appt for about 10:30 in the morning as it takes about an hour to get there. Oh I can tell you a great way to go also that is quicker then our original route so let me knwo and I will tell you that later. If you can leave real early then earlier then 10:30 is even better and would eliviate the wait. Or an appt right after they get back from lunch-just ask what first appt is after lunch (I think 1or2ish). You can tell Janet that you got info from Cole's mom and she should know us. :) Ok did I cover all info? Hope so and hope I didnt bore anyone. LOL!
Stacey

LATigner
05-10-2007, 12:20 PM
You asked about the hard brace and the summer heat. When my daughter wore her hard brace, I made liners that fit the brace so that she did not have to wear a shirt under it - this was cooler because more air got to her skin. We also used to give her a 10-15 minute break and put the brace in the refrigerator for that time, the plastic absorbed the cold and it wasn't so bad putting it back on in the heat. Thankfully we have a/c so we just cranked it down and the rest of us got a little colder. I won't kid you though, a hard brace in the so ca summer is a real drag, especially if your daughter is like mine and loves doing everything outside. Some doctors don't count swimming time as being out of the brace so a lot of kids do a lot of swimming.

Just wondering if you have checked into the SpineCor brace? It's much cooler and easier to wear. There's a long thread on this forum under bracing and they have a website.

Horsey Mom
08-10-2007, 04:43 PM
My 13 year old daughter was diagnosed after a sports physical in June with scoliosis, 40 degree curve.
I'm having many of the issues that I have read about here. We're having a problem with her being complient with wearing her Boston brace 23 hours a day. I read in one of the posts that the new thinking is 16-18 becuase if muscle atrophy. Certainly something to ask the doc on the next visit.

I too have beat myself up because 2 years ago at her sports physical, the doc said she had "a little scoliosis" so I didn't hear a sense of urgency in her voice to do any type of follow up.

I don't really have any questions I'm just glad I found the right place to post.

REbecca

MacksMom
08-11-2007, 01:56 PM
Hi Rebecca. Wish I could give you more hope, but Mackenzie and I still struggle with getting her to wear her brace the prescribed 23 hours/day. I am lucky if we get 16. I made her wear it to the movies a few weeks ago and caught her taking it off and "stashing" it in the bushes.

I am trying to schedule a second opinion appointment with a surgeon her in the Los Angeles area. I'm keeping my fingers crossed that her 40 degree curve has not progressed. I'm hoping to get her in before school starts, so I'll keep you posted.

Mackenzie is now 14, but only started her period 6 months ago, so she's supposedly still growing (according to the doctors). The orthotist says she's between Risser 2 and 3 (whatever that means). Right now, she's 5'3" and they say she'd be about 5'4 1/2 or 5'5" without her curves. I'm 5'5 and her dad was 5'10, so I'm guessing she's nearly full grown as far as height goes.

I don't know what to tell you that will help you get your daughter to wear her brace. Wish I did.

As for beating yourself up, everyone on this forum will tell you not to do it. You did the best you could. And now that a few months have passed and I've gotten used to the fact that Mackenzie has scoliosis and there's nothing I can do about it, it's not so devastating. At least, not right now when we're in the waiting and watching stage.

You'll get there too. Then you'll relax a bit and go with it - because that's really all you can do at this point.

Good luck and stay in touch.

Lisa (MacksMom)

CurvySAT05
08-11-2007, 04:40 PM
To all those in OC (or So. Cal). The Orange County chapter of the Scoliosis Association has meetings out of the Irvine Reginal Medical Center (Hospital) every couple months. The next meeting is planning on being held on September 6th at 7:30pm, for anyone interested in attending. It is off the 405 fwy at Sand Canyon (on the east side of the exit).
Feel free to come, or ask any questions you might have. PM me if you want more info or direct contact information.

Mandy

Horsey Mom
08-16-2007, 02:19 PM
Thanks for the post Lisa. Spencer, my daughter turned 13 in May, had a period in June and just started another one yesterday. I didn't realize that periods seem to play into the growth issue but, I guess they do.

She's almost 5'2'' and weighs 97 pounds. Her doc told me that he wants her to grow before surgery which could be in a year or two.

In the last week she has tried to be more compliant wearing her brace and is actually doing better.

We moved to Oregon 3 years ago from So.Cal. and miss having the resources down there.

Nice to meet another mom who is going through this. We do worry don't we?

Rebecca

MacksMom
08-17-2007, 07:02 PM
Yes, Rebecca, we worry all the time!!! It started when they were still in the womb. I can remember worrying that I didn't have morning sickness because someone told that morning sickness was a sign of a healthy pregnancy. Gotta laugh at that one!!! But what did I know?

Mackenzie has an appointment on the 30th of August with Dr. Skaggs at Children's LA. I'll let you know how it goes. I just hope her curve has held (in spite of her refusal to wear the brace as prescribed).

Lisa

The Slice
08-21-2007, 11:00 AM
Macksmom, my condolensces(sp?) to you and your whole family. To all, I've said this on other threads and will repeat it here as it's an important thing to understand. Bracing is not always a cure to scoliosis. From what I understand, curves that are caught very early and braced often do not need surgery, but there is a question as to whether the brace helped, or whether it's just as far as the curve was going to go. In moderate curves bracing is usually just a stop gap measure to stop, or more likely, slow the progression of the curve. If left untreated, the curves can sometimes progress much more and since there's no way of telling how much someone's curves will progress it's considered prudent to brace them until their growth has pretty much finished. The thing to remember here is that muscle strength and flexibility are a key part to the amount of correction that can be achieved along with the severity of curve at the time of surgery. There are no absolutes because you are dealing with the human body, not a stone sculpture. So far as tolerating the brace, alot of support especially from peers/friends goes along way. Remember that there are basically two main issues here to kids not wanting to wear the brace, the physical pain and discomfort, and the social aspect of it - how they perceive that their friends will be around them. From what I've read in many of the stories, for the most part most kids go through this and find out that their fears are unfounded - that their friends/peers don't even notice that they're wearing a brace, or are often very curious about it. So far a the discomfort, and pain involved, sometimes, at least in the beginning, it's a matter of getting used to the brace, and sometimes going back to get adjustments to the brace, and last but not least, a whole lot of patience.

orthoman
08-22-2007, 02:50 AM
hi macks mom

i am stan , orthopedic instrument meker in the netherlands europe, a long way from america. i was reading yuor questions on the forum and yuo had a question abuot riser valeu's , the piont is with scoliosis that yuo don't speak abuot age but abuot bone growth ( when the bones are completely grown) this has a valeu of 1 to 5 , a docter with the name riser made this scale, 1 means just after being born upto 5 when you are fully grown up.after rier 4.5 there is not much more growt expetance. i hope you can do something with this information.
best regards Stan, excuses for my bad Englisch

Horsey Mom
08-28-2007, 05:22 PM
Hi Lisa,

Let me know how MaKenzies's appt goes. Spencer has her first re-check after getting her brace.

She has her good days and bad days wearing it. Seems as if when she's home it's always on. A friend spent the night Friday and it was off all Friday night and most of Saturday. We're trying to stop the nagging in hopes she will just realize this is an important part of her life.

I know it will be way too soon to see a difference in the x-ray but, I sure hope so. I think 6 months is probably more realistic.

Starting school on Wednesday will bring a whole new set of adventures.

Good luck with the appointment and I'll be thinking about you and your daughter.

Rebecca

MacksMom
08-29-2007, 12:51 AM
Thanks Rebecca. I'm not even sure what the process will be with this new doc. Thursday's appointment is kind of like a second opinion - but I am planning to switch to him since he focuses on pediatric spine patients only.

I am a hospital administrator and one of the spine surgeons on my Medical Staff saw Mackenzie when I suspected she had scoliosis. He was really doing a favor for me - and thought I was over-reacting (until he saw the x-ray). I took the x-rays he did to the appointment with the spine specialist at UCI Medical Center. The doc at UCI did fellowships in both peds and adults - but I want someone who specializes ONLY on children.

I'm hoping Dr. Skaggs will take a new x-ray to see if her spine has progressed. But, again, I don't really know what will happen. We're pretty new to this (diagnosed in late March 2007).

Mackenzie starts school next Wednesday (the 5th). She will be in her first year of high school - and EVERYTHING revolves around how she looks. The brace definitely cramps her style!

I'll keep you posted - and thanks for the good thoughts.

Lisa

MacksMom
08-30-2007, 07:53 PM
We just got back from Childrens LA. Mackenzie was seen by Dr. Skaggs for a second opinion. The good news is that her curves are holding. Dr. Skaggs said she has a double major curve - both at 37 degrees. The first surgeon said she had a 40 degree thoracolumbar curve with a 28 degree compensatory thoracic curve. Not really sure that it makes a difference.

The bottom line is that Mackenzie has two curves. I am a little concerned that the thoracic curve went from 28 to 37 in the 5 months since we saw the first spine surgeon - but that may not really be true since they only measured the bottom curve and ballparked the "compensatory" curve. And Dr. Skaggs said there is a 3 -5 degree range of accuracy. He was unwilling to say whether the thoracic curve had increased since he didn't take the original x-ray, etc, etc.

We both liked Dr. Skaggs. The office was really well run and organized and everyone was very nice. His spine fellow (Dr. Chen) was a good guy too.

Forgot to say - her curves in her brace were 27 upper and 34 lower - so good correction on the top, but not so good on the bottom. They weren't thrilled with Mackenzie's brace - but since she's only had it a few months, said that it would work ok. She's to continue to wear the brace and we go back in 6 months. He agreed with the first surgeon about the 18 months of growth time remaining for Mackenzie.

We were very honest about Mackenzie's brace time and he told us not to make it the focus of our lives. I liked that about him.

Thanks to all - especially Renee and Stacey - for their support through all of this. I feel much better knowing her curve didn't increase!!!

Sorry this is so long.

Lisa

mom2cole
08-31-2007, 10:05 PM
Hi Lisa
So glad the appt went well, I got your PM's and going to repsond but just noticed these posts and saw how you said Skaggs told you not to make wearing the brace your main focus in life. Which made you happy so I wanted to comment that Dr Skaggs is good about stuff like that. For instance he always tells us to "let Cole be a kid/boy and play etc...without constantly worrying about this that or the other with his severe curve and rods". I too love it when he says comments like that. Ok I will go review your pm's again and respond to them.
Stacey

Horsey Mom
09-01-2007, 05:15 PM
Lisa,

Sounds like you had some good news, at least the curve isn't getting worse.

I'm from So.Cal. and am very familiar with CHOC, CHOLA, and UCIrvine. I was a sales rep for a home health company when we lived there so, know the area well. This is off the subject of our kids but, I'm finishing up my BS in Healthcare Admin this Nov so, hope I can find something I like and will get hired after being a stay-at-home mom for the last 8 years. Enough of the little side trip.

I was glad to hear the doc say not to worry so much about the brace being on 23 hours. Spencer is going into 8th grade on Wednesday and she too is of the age that looks count. I'm hoping our doc will have the same attitude about it.

We're both settling into the whole scoliosis adventure and the brace has almost become a part of her life. Not sure I will say the same thing once she is back in school. We'll have to see.

I'm thankful that I found this forum and this thread...don't feel so alone.

Thanks for the update!
Rebecca