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Thread: Newly Diagnosed - Mom's a Mess

  1. #16
    Join Date
    Dec 2005
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    40
    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

  2. #17
    Join Date
    Apr 2007
    Location
    Orange County, CA
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    47
    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

  3. #18
    Join Date
    Dec 2005
    Posts
    40
    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

  4. #19
    Join Date
    Dec 2005
    Posts
    40
    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

  5. #20
    Join Date
    Apr 2007
    Location
    Orange County, CA
    Posts
    47
    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

  6. #21
    Join Date
    Dec 2005
    Posts
    40
    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
    Last edited by mom2cole; 05-09-2007 at 09:34 PM.

  7. #22
    Join Date
    Jan 2006
    Location
    Southern California
    Posts
    59

    For Mack's mom

    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.

  8. #23
    Join Date
    Jul 2007
    Posts
    9

    Finally found the right thread

    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

  9. #24
    Join Date
    Apr 2007
    Location
    Orange County, CA
    Posts
    47
    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)

  10. #25
    Join Date
    Jul 2005
    Location
    California
    Posts
    269
    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

  11. #26
    Join Date
    Jul 2007
    Posts
    9

    Macks Mom

    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

  12. #27
    Join Date
    Apr 2007
    Location
    Orange County, CA
    Posts
    47

    Smile

    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

  13. #28
    Join Date
    Oct 2005
    Posts
    178
    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.

  14. #29
    Join Date
    Aug 2007
    Location
    netherlands , europe
    Posts
    16

    Wink

    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

  15. #30
    Join Date
    Jul 2007
    Posts
    9

    Macks Mom

    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

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