I'm new too

[Cheryl M]

Hi! I just sent a private e-mail to Kris. I'm still trying to figure out how to use the NSF. Anyway, we have been on such a roller coaster ride since January when my daughter was diagnosed with and s shape (44/35). We were first told surgery. Our second opinion told us to brace. In April we found out the top curve had progressed to 55. She has a fairly signifcant rib hump. We just went back. The top curve was still around 55 but the bottom curve was worse. The Dr. came in all smiles and said that this balanced out her curve and we most likely wouldn't need surgery and come back in six months. We were floored. When we asked about cosmetics and the rib hump he told us this was no reason to do surgery. We really don't know what to think or do at this point. We're going to schedule a consult with the Dr. because we left so dumbfounded and confused. We're thinking of seeing another Dr. Any suggestions in the Charlotte area. I've read the comments about Shriners and Dr. Hey in Raleigh seems to pop up quite a bit. Did any of you also have cosmetics on your mind? We're also worried about her 55 degree and 40 something degree curves in her adult life. In April her riser was at zero and in July it was at 3. She still has some growing to do. Would love to hear your comments.
Cheryl

[Joe's Mom]

Wow . . . what you reported the doctor said really has me confused too! Curves in the 50's are usually where recommendations for surgery begin. Since your daughter still has growing to do, her curve may well increase to beyond 50's. My son's orthopaedist told us that they consider surgery in the mid to high 50's.

Visit another doctor or two and try to find one who specializes in scoliosis in children.

[carebear23]

How old is your daughter?

They recommended surgery for me when I was 14. For me personally that was way too early and I'm only ready now (i think!) My signature already says this but the curves themselves did not get worse but my spine did rotate quite a lot.

Definately get a second opinion. Since she is a young lady I'm sure she would appriciate looking back and knowing that you did everything you could to try and help her feel better. I have a very noticable hump. People always stop and ask what happened to me. It was mortifying as a teen and even some days now. Hopefully surgery will get rid of it or at least make it less noticable.

Sorry.. I'm rambling, main thought.. try and get in with Shriners. I have heard so many great things in this forum. Also do a search on Dr. Hey on this site to get more opinions of him.

Best of luck! Keep us updated!

[KRIS ATKINSON]

Cheryl, I sent you a private message also. Call me before around 11 today, and I think I will still be home. Otherwise, I will be around tomorrow, etc. It could be a lot of typing between us to discuss doctor opinions, which would help in your case since we know Dr. Wattenbarger fairly well. If he is the one who said you don't need surgery and about the cosmetic reason, he is correct. Also, the balance of the curves is a good thing. Surgery is usually recommended at the 50 curve area, but not always. Your daughter is possibly a good example of an unnecessary case. I won't tell you how I feel in case my daughter sees this message, but this is major surgery and if my daughter could just continue life with her rib hump and near 70 degree curves and wear her brace 23/7 as she does now, we would not be risking surgery July 18. People can get over how someone looks, but the people are still enjoying life as fully as possible. Dr. W and other professionals have concurred that diminishing the rib hump and the shoulder blade protrusion are attempted during surgery, but not the main purpose, so I am prepared for my daughter to possibly still have her hump post-surgery. I hope it goes away, but I have to trust the judgement of the surgeon as he decides what is best medically. In my daughter's case, she recently figured out that her shoulder jutting forward was not a normal thing for everyone. She attempted to sit back agains seats and was surprised that she couldn't do it. The shoulder/rib hump is starting to hurt her now, so I am more eager to stress the need to correct it in surgery. Kris

[KRIS ATKINSON]

Cheryl, I split this up, because I tend lose the email if I type too long. We originally went to the GP for her "official" diagnosis and x-rays, since I had already diagnosed the scoliosis/kyphosis at home as I went to rub her back. The GP referred us to a clinic in Concord, who recommended surgery, but referred us to Charlotte. He preferred not to do surgery, but apparently did some bracing. I researched on the net between the 2 main Charlotte clinics and ended up going to Dr. Wattenbarger, whose clinic has since then merged with the other Charlotte clinic. Dr. Wattenbarger recommended surgery, but said we could try bracing and see if that controlled things well enough to avoid surgery or at least postpone it. The first time her curve increased, after several months of wearing the brace diligently, Dr. W came in to the exam room with the x-rays, ready to deal with the report to us of "bad news." I am so used to emphasizing the positive and helping my daughter bear bad news, that when he described the increased curve, I said, "not that much of an increase, so the brace is helping!" He switched his mood and agreed that it was a rather small percent of increase and maybe "we will prove the studies wrong and my Erica may become a case of a rather high curvature brace wearer to beat the odds". We left feeling rather positive and Erica started considering having surgery after her spine finishes growing in a few years. The man who adjusts her brace agreed with us when we next saw us. A few months later, her curve had increased dramatically and Dr. W said we could still postpone surgery, although it is more difficult to get good results the higher the curve and the older she is.

[KRIS ATKINSON]

Cheryl, Erica asked questions of Dr. W. Her main concern was about the breaking of rods. He said that is rare, as paralysis is also rare. You all on this forum know the stats on all that. Erica decided on the way home to have surgery this summer. I called Dr. Wattenbarger's office and put in the request for surgery. Her curve was in the upper 50's at the time, I think. Then I researched heavily, read books at the library thoroughly, etc. I discovered this forum, also. I applied to Shriners and eventually switched to Shriners for surgery. I was very direct and blunt with Dr. Pete at Shriners and asked him to compare the skills and methods of the doctors who perform this surgery. He said there are 3 who have the same certification in western Carolinas: Dr. Wattenbarger, himself (he goes by Dr. Pete, but his last name is long), and Dr. Allen, also of Shriners Greenville. We discussed reasons Shriners does surgery certain ways and why Dr. Wattenbarger might be doing other methods, but that all 3 are similar in skill. My daughter ended up loving the hospital there and requested her surgery there. That thrilled dad and me, as it is now free and she can recover as much as needed without getting special permission from insurance.

[KRIS ATKINSON]

If your daughter's back does not bother her, other than cosmetically, you may want to wait like we did and keep trying the brace. It does sound like she is at least balancing the body with a more even curve side-to-side. You can look at some pictures of people with extreme scoliosis curves on the internet and see how unbalanced it could be. As I did my reading months ago, I read more specifics about how they do the surgery: They move the spine carefully, trying not to damage nerves, and sort of "feel" with experience, how far to push the spine to avoid pushing too far. I think they have to avoid having the spine bones touch the nerves in the center to avoid paralysis, etc. That is why they only can correct the curve to a certain extent. We figured out that Erica could get a better curve correction now than in say 3 years, so we decided to have surgery now. Dr. W concurred somewhat with my findings, but of course said it is never totally predictable. Basically, I compared surgery at 90 degrees to surgery at 50 degrees. 90 could become 45, but 50 could become 25, roughly, so that was 20 degrees less improvement if we let her curve increase to 90 in a few years. Between that and Erica fearing lung difficulty down the road, etc., Erica decided to have surgery now instead of waiting. Our final straw to not postpone was when we Dr. W exlplained that the curve can only be corrected so much and her height is going to go up less than her curve will go sideways. We can never get the perfectly straight spine and her internal organs could be at risk in the future. This was AFTER it was provent that the brace was not controlling the curve as much as we had hoped.

[KRIS ATKINSON]

Cheryl, I think if her curve had only changed a few degrees per year, while wearing the brace 23/7, she would still wear the brace until her spine finished growing, but it started increase too much for safety in our minds, so we set the surgery ahead. Erica was willing to live with the rib hump and be a little crooked as an adult (of course, she could have changed her mind later), but when we saw the increase in curve, despite the brace, she chose to have surgery. Good luck, hope this helps. I would apply to Shriners Greenvill ASAP if I were you. It took about a month for the original appointment, then 3 months to get the surgery. Of course, you are not in as much of a rush as we were. Good luck and God bless. Kris

[Cheryl M]

i'm new too

Thanks to all who have resonded. Kris I left you my number. I know you must be very busy so call me at your convenience.....even if it is next month. I will be praying for all of you!
How hard is it to get into Shriners, Greenville? Do I need any recomendations from a Shriner, Dr., etc. We have been very pleased with Dr. W. He has been great. We have just been on such a roller coaster ride since February. Three months ago he pretty much assured us that our daughter would need surgery. The brace did not correct her curve at all and her curve had gone from 42 degrees to 55 degrees in a few short months. We prayed so hard to find peace with all of this and had finally accepted the fact that she would have surgery and rejoiced in the fact that her back would be straight. This did help offset our tremendous fear of surgery. Then at our July appt., we get thrown another curve---her bottom curve is bigger which balances out her 55 degree top curve and she may not need surgery. Surgery was hard to accept but we were glad that her curve was going to be fixed. Now we have to try to accept that her curve may not be fixed. We have to worry about her adult life and the complications her scoliosis may bring her then. I worry that the curve will worsen and she'll end up with surgery anyway and we won't get as good of correction as we could if we do it now. I know we need to be patient but I just want answers NOW! We were so floored at the July appointment that neither one of us asked questions and neither of us remember very much about Dr. W's comments so we're going to set up a consult appt. with DR. W and go back with a list of questions. I think getting a second opinion at Shriners would help ease our fears and allow us to be a little more patient. Our daughter will enter 8th grade in the fall and is 13 1/2. Thanks so much. Cheryl

[KRIS ATKINSON]

Chery, and anybody who this helps: The net site for Shriners is www.shrinersshq.org They have an application you can fill out and then download and send to Greenville. Use Dr. Wattenbarger as the referring physician, I did. Mail it to them and you will get a response in several weeks. Good luck! Kris

[KRIS ATKINSON]

Cheryl, others on this forum encouraged me regarding my daughter not wanting to talk about scoliosis or surgery. It is natural. I just answer when she asks and don't push. She did make choices when she had to, such as where to have surgery and when to have it, but she definitely does not like to discuss what will actually occur in surgery. She asked me yesterday if she will be able to bend over and how long it will be before she can, after surgery. I answered as well as I could. We went shopping today and got slippers, draw-string huge pants, and button down huge shirts. I told her it is just for the hospital and if she is well enough to go to functions like church and group activities, she will be well enough to go shopping after surgery. This way she has something to wear over the surgery at the beginning,cheap stuff, 2 pants, 2 shirts, less than $10 each. We also got body pillows, which she is excited about. Day after tomorrow I take my boys to their buddy's houses and we head to Greenville, to be admitted Thursday. I am trying to pay bills a month in advance, to avoid all those late fees. Good luck with Shriners! Kris

[Cheryl M]

Kris, Please keep us all posted on how well your daughter is doing. These kids are so brave and I admire them so much for their strength. I have learned so much from the kids and their parents through this forum in the last couple of days. Again, my prayers are with all of you. Cheryl

[KRIS ATKINSON]

A strange thing last night: we were playing Monopoly. Somehow I ended up mentioning Erica getting her x-rays Thursday. She fled to her bedroom. I thought it was that I brought up about the surgery and realized I did a no-no. I went to console her and asked if it was problems about the surgery. Here I was, ready to begin the final consolation pre-surgery. She said "I hate x-rays". This was actually a relief to me! Like anyone with severe scoliosis, she has become a pro at bending over at exams and at x-rays, so this surprised me. Apparently she is either holding back on the thought of all the nasty stuff post-surgery or is not really aware. Her questions have been primarily what can she do after surgery, not how it will feel. Hopefully the staff at Shriners will help with the more difficult issues that come up. Thanks for the prayers! I believe Dawn is currently at Shriners Greenville, ready for her son's surgery tomorrow, as I pray for him also. Kris

[Cheryl M]

Kris,
Hope all goes well today. We got our application faxed in yesterday. Hopefully we'll hear soon when GVL Shriners will see us. Our prayers are with you. Hope all went well with Dawn's son. Have been praying for him too.
Cheryl

[KRIS ATKINSON]

Cheryl, how are things with you? Haven't heard from you for awhile. Any closer to any decisions? Keep in touch, Kris.
Everyone, today is day 2 for school for Erica. She has the 504 plan and is doing ok. She needs to be aggressive enough to leave class 5 minutes early and ask the teacher for an escort between classes. Today we got the school's wheelchair for her to use as the seats were uncomfortable all day yesterday. She told me this after school. I have to do all the asking for help for her so far, even though it is written in her 504 plan and the school is very supportive. She was given a special entry to use the elevators at school and so far I am transporting her until her twin brother "tests" the school bus ride. She said there is one big bump she doesn't want to have to endure on the ride, so I think I'll be driving her until she is ready to endure more bumps. We got all her school books at home before school started and that helped as she had homework last night. I hope she speaks up for herself and uses the 504 plan by not waiting for the teacher to tell her to leave class and provide an escort. I should tell her it is just like pressing the nurse button at Shriners, which she got good at in the middle of the night even. Kris