Jamie is 1 year post-op!!!!

[Mary Lou]

I can't believe today is Jamie's one year anniversary. What a differerence a year can make!

Thank you, everyone, for your support, information, prayers, and friendship Without the support of this forum, the journey with Jamie's Kyphoscoliosis would have been unbearable.

With this being her one year mark, it feels like we may be coming to the end of this journey and it feels so good to be at this point. Jamie says the end isn't here until she has her one year check-up, but thankfully that's only a few weeks away.


Again, thank you,
Mary Lou

[Sheena]

congratulations!!! im so happy that youve reached the end!!!!

[nikyergen]

Mary Lou & Jamie,
Congratulations on the one year mark. It's been a big long old year I bet. I know it has been with us. Thank you for being there for us when we have questions and just to listen.

Nikki

[Carmell]

Woo-Hoo for Jamie! and Mom too! These anniversaries are something to celebrate, that's for sure. Glad to hear she's doing well.

I agree (time and time again) that forums and messageboards are such a great way to get through the emotional load when dealing with serious things like scoliosis surgery. I don't know what I'd do without the support of so many people. It helps to know we aren't alone and that someone else really does understand what life is like. Even well-meaning family members can't always offer the support we need, sometimes.

Take care and here's to another great year post-op!

[Brenda]

Hello - I was wondering if there is anyone whose child has scoliosis that curves from the right to the left? I have read online that only 1-2% of the population with scoliosis has this kind of curve. My daughter is going for a MRI on Monday and I have been worried about her. My husband has scoliosis that curves from the right to the left and I am hoping she inherited it from him. Thanks

[Carmell]

Hi Brenda,

How old is your daughter? Does she have idiopathic (no known cause) or congenital (malformation of one or more vertebrae) scoliosis? My son, Braydon, is 10yrs old. He has congenital scoliosis. His curve is the a-typical kind like you mentioned. I think the statistics you read about (1-2% of scoliosis is right to left curve) is for typical adolescent idiopathic scoliosis. I don't know this for certain because I don't know the exact reference you read. I do know that if your daughter is under 10yrs old and has scoliosis, an MRI is not a bad idea. Scoliosis in young children is not common. Having an MRI to rule out any spinal cord issues is a good idea. Keep us posted on what they MRI shows and what the ortho recommends. Interesting your husband has scoliosis too.

[KRIS ATKINSON]

Mary Lou, congratulations! Kris

[Mary Lou]

Thanks for all the good wishes. We had a great day yesterday. We went all out with our celebration. Complete with a ride to and from school, balloons, cake, pizza in front of the TV while watching her favorite show and the best part for Jamie--she got her nails done for the first time. She was so excited!!!

I have great news for Jamie when she gets home--I got her an appointment with the surgeon for this Monday after school! (the office told me to call occasionally to see if they get a cancellation) That is a full month before her scheduled appointment. As long as he says it's okay, we'll probably go directly to Hersheypark to ride at least one rollercoaster. Yes, the park is still open. They do a great display of lights for Christmas and actually have several rides open.

Mary Lou

[mumof5]

Congrats on reaching the 1 year mark. I hope everything keeps going well. It really is amazing the difference a year can make.
Brenda, my daughters curve is also atypical. She is now 18 months post op.
Best wishes.
Cheryl

[KRIS ATKINSON]

Mary Lou, how close are you to Hershey, PA? My girl scout troop debated at long weekend trip to Hershey, primarily to hit the amusement park, a few years ago. We nixed the idea, partly because we went through the finances and chose to stay closer to home to spend our cookie money, and partly because my coleader (she's also my best friend, but of course we don't always agree), was more willing than some other parents, including me, to drive straight through going and returning, basically 11 hours each way, just for a day or two. I used to live in Ohio, but I have never been to Hershey. I have been to Erie, Pittsburgh, Philly, though. Guess my parents never had the undying urge to view the chocolate factory, or maybe that didn't offer tours in my the 1960's, when we toured everything between Ohio and any other vacation spot we went to when I was young. Have fun on those rides! My daughter felt sick to her stomach on the easier (non-jerky) rides at Carowinds in SC last week, as she went up in the air to swing/fly around with the girl scouts on a few rides. No back pain, but as she said, her stomach was uncomfortable. Have fun! Kris

[Mary Lou]

Kris,

We live about 25 minutes from Hersheypark and always had season passes every year. Not having them this year was hard on Jamie. The hospital where Jamie is treated is also located in Hershey.

The factory use to offer tour years ago, but for health reasons, they now have a place called Chocolate World that shows you how the chocolate is made, but it just isn't as good as a tour of the factory. I think everyone use to go on a field trip from school to the factory at least once.

Would I recommend driving 11 hours each way just to go to Hersheypark? I don't think I'd do it. The park is great, but not worth it to me to drive 11 hours each way unless I planned to visit a lot of other things in the area-like the Amish country, the museums in Harrisburg, etc. If you every decide to come to Hershey, let me know, we'll have to get together. Plus I'd be glad to suggest some things to do while here.

If Jamie decides to go to the park, I'll let you know how it goes. I'm glad your daughter had fun on the rides. Sorry to hear her stomach was upset though. I'm sure it was worth it though!

Mary Lou

[MATJESNIC]

Hi Mary Lou,
don't know why I am up so late. Anyway, I think you talked to my husband Ed back in Aug/Sept when Nicole first got diagnosed. You had told him about the support group. That was before we knew there was a support group right here in Phila at Shriner's. Neither of us have felt the need to go. Just being on this site and SpineKids has been all the therapy I have needed. I don't know what I would have done if I had not found these sites. Anyway, thanks so much for your support.
I was just looking through these posts tonight. That is great that Jamie is 1-year post-op. And I agree with you that Hersheypark's tours of the chocolate factory were amazing. How sad they did away with them. I love Hersheypark, but would not recommend driving more than a couple of hours to go there.
Did I understand you that Jamie is allowed on roller coasters? I thought after surgery you weren't allowed to go on roller coasters. I guess it depends on the individual, right? Anyway, thank you for all the support you give. If Nicole ever needs surgery, I will be so grateful to all who will continue to keep me grounded. Have a good night.


Melissa

[KRIS ATKINSON]

If I am correct, roller coasters are off-limits for the first year post-op. Kris

[Mary Lou]

Hi Melissa,

Yes, I've talked with your husband. I think it is great that he too gets involved directly with your daughter's Scoliosis. It seems like it is always the Moms who are looking for answers, new research, etc.

Our support group is going well. Like you, I found this forum and Jamie never wanted to attend a support group. But now, she loves talking to and helping others deal with their Scoliosis. She is especially good with helping others prepare for surgery.

Is Jamie allowed on rollercoasters? I'm assuming so, but we will ask the doctor on Monday. He told her at her six month check-up no amusement parks and no rollercoasters (among other things) and he said not until one year.

By the way, you are very welcome for the advice/support you receive here from all of us. What would we do without each other? Please keep your experiences coming with the SpineCor. There is a lot of talk about the brace, but not too many people willing to share their experiences. Thanks.

Mary Lou

[jc3]

hi marylou
sorry i missed jamie's one year anniversary just haven't checked in here in about a week. Congratulations to Jamie. Sounds like she had a great day. Let me know how the dr. appointment goes and what he says about going to hersey and riding on a rollercoaster. I think my dr. says that they can go on rides at one year, but no rollercoasters until 2 years, but every dr. is different.
Jennifer

[Mary Lou]

Jennifer,

Thanks for the good wishes.

How did the doctor appointment go? Not so good. In June, there was some Kyphosis from C6-T3 which had increased slightly. Well, it has increased again. It is now at about 39*. The doctor said if we need to do surgery (which I think that's where we're headed) he would want to fuse two vertebrae above the Kyphosis. That would mean she would be fused from C4-L2! I am physically ill right now. I knew the Kyphosis had increased, because I could see it but I was hoping it was just my imagination. Jamie is so upset right now, she can't even talk about it. We were hoping this would all be behind us and the doctor would just monitor her Spond.

There was some good news. Basically her restrictions were lifted. She is allowed to go hunting, dive into a swimming pool, ride our 4-wheeler and ride rollercoasters. Needless to say, with the news we received today, Jamie wasn't in the mood to go to Hersheypark.

Mary Lou

[ProudParents]

I’m really sorry to hear your situation of possibly facing additional surgery so soon. Hang in there. You did such a good job helping your daughter recover, you didn’t deserve that news. While I was researching prior cases a few months ago, I stumbled on a case where a girl had kyphosis develop above her fusion, and Dr. Lonner (he wasn’t the first surgeon), only needed to fuse one additional vertebra as a revision. Of course your case could be much different, however it may be worth a trip to New York or Shriner’s in Philly for a second opinion.

Mark

[nicoles mom]

Mary Lou
Hi Just Got Back From Vacation And Was Reading Your Post. Jamie Congrats On Your One Year Mark. Sorry To Heard About Your Doctors Appointment. My Nicole Also Faces A Second Surgery If The Brace Doesn't Hold Her Lumbar. Marylou I Know That Feeling Each Time We Go I Pray It Doesn't Get Worse. Keep Your Head Up Your Love And Support Will Get You Throught.
Lots Of Hugs To You And Jamie
Theresa

[nikyergen]

Mary Lou and Jaimie,
Give each other a hug for me. You have been so supportive to us. I was saddened by your report from the doctor. I am continually looking at Crystal's back to make sure she doesn't develop more kyphosis above the rods. She did develop a scoli curve at the bottom of her fusion. However, the doctor said it shouldn't get any worse than it is. He also doesn't want to fuse the scoli curve because she will loose what flexibility she has.

I know you know what I am going to say "God doesn't give you anything you can't handle." I am to the point I dislike that line, but it is so true. I guess I don't dislike that line, I just dislike being able to handle so darned much. Hang in there, God will be at your side as you go through all of this. You already know all of that, but just wanted to reassure you. Sometimes we want to give up all faith, when we just need to dig our shovels in to get more faith.

Chins up now, and we are all by your side.

Love and prayers to you both.
Nikki

[Mary Lou]

Mark,
Thanks for the information and suggestions. I doubt we will seek a second opinion. Before Jamie's surgery, we took her to five different doctors-one of which was Dr. Betz at the Shriner's Hospital of Philly-and he told us the same thing Dr. Segal has always told us. We trust Dr. Segal and he did tell us before surgery that Kyphosis above the fusion was a possibility. I will keep your thoughts in mind.

Theresa and Nikki,
Thank you. Your thoughts and prayers will be a big part of what helps us get through this. I know we will get through this, but the news was just devestating last night. We had such high hopes of putting all of this behind us. I do know that God only gives us what we can handle and we will handle it like always.

I hope Crystal's scoli stays stable below her fusion. I guess Kyphosis and Scoliois above and/or below fusion is more common than we realize.

Mary Lou

[Laura P]

Marylou,

Did you get my last post on Jamie is home? Had a couple of questions about your support group. I don't know if I could get it going but just wondering how youall got it started. Happy holiday.

Laura P.

[lorrie]

Hi Marylou
Just to say we're thinking of you and Jamie and you're in our prayers.
Lorrie

[Mary Lou]

Laura,

I'm sorry, I didn't see your post on Jamie's home. Feel free to contact me @ Spinesupport05@aol.com. I think that'll be easier than posting everything here.

Lorrie,

Thanks for your prayers.

I received a copy of the doctor's report from her last appointment and this is what he says, "We will carefully follow her junctional Kyphosis and as discussed if pain, if increase in clinical deformity, or increase in radiographical deformity, we will consider doing a fusion proximal to the current fusion."

Mary Lou

[mariaf]

Hi Mary Lou,

I just happened to read your recent posts and I'm so sorry to hear that you did not get very good news at the doctors. I think most of us know what that's like (it stinks) - and I also know you and Jamie are very strong and will get through this. One day it WILL all be over. Hang in there. I'll keep you guys in my prayers,

Maria

[Celia]

Mary Lou,

So sorry about the latest news, I vaguely recall that this thread started out on a positive note and I'm sorry it didn't stay that way. I don't have any words of wisdom to offer, only a shoulder to lean on....

[jc3]

hi marylou
i don't know why i didn't see that last post you wrote about jamie maybe needing further surgery until today. I feel really bad. How are you doing??
write me back if you get a chance and let me know what is going on.
Jennifer

[Mary Lou]

Maria, Celia, and Jennifer,

Thanks for all your support. I think the worst part of all of this was the fact we were hoping to put this all behind us and now we can't do that. The thought of more surgery needless to say knocked the wind out of us for a day or so. As a family we've tried to put it on a back burner and let Jamie enjoy her freedom for now. For me, it is always on my mind. I really don't think I can wait six months to see if it progresses. I think I'll be contacting the doctor after the holidays and see if we can move her appt. up.

Jamie and I haven't discussed her last appt. too much after the first few days. However, I finally convinced her recently to join SpineKids and I noticed she's been talking about it on there. I'm glad she has a place of her own to get support.

I don't know what I would do without all of you on this forum. Thanks.

Mary Lou

[KRIS ATKINSON]

Mary Lou, hang in there! I'm praying for you all. Did you get snow? We visited Ohio for Christmas and Erica enjoyed some snowball fights with her brothers. She also went swimming for the first time after her surgery last July. You may live more in the brunt of the snow than my mother, so I wonder how it affected you. Take care, Kris

[flowerpower]

MaryLou,

I am just catching up on the posts - I am so sorry to hear about Jamie's last appt., last time I read up you sounded so happy. I am praying for you.

Renee

[Mary Lou]

Thanks Renee. I just seems like we are on a never ending rollercoaster ride!

Kris,

We got about 8 inches of snow a few weeks ago, but none over Christmas. It seems like we don't get much snow anymore. The kids didn't use an snow days last year, however they've already had one day off and one delay so maybe we're in for it this year? I promised myself that I wouldn't complain this year no matter how much snow we get because we were so blessed last year while Jamie was in the hospital. We didn't have so much as a delay last December, so I'm grateful for even the small things in life.

How did it feel for Erica to go swimming? Doesn't it feel good to be able to sit back and watch your kids have fun and be kids again?

Thanks again,
Mary Lou

[jc3]

marylou
I know what you mean about not wanting to have to go through another surgery. Keep me posted as to what happens. I'll be thinking about you guys and saying a prayer. Once was definitely enough. We go back on January 12th.
Jennifer

[Mary Lou]

Just wanted to update you all on the latest....Jamie and I started our New Year's Eve out at the ER! Of course we were hosting a New Year's party and didn't arrive to our own party until two hours after our guests. Anyway, the x-ray doesn't show a fracture (just a sprained ankle), but the doctor did say there is a bone chip in her foot and he isn't sure if it is from this incident or from some other time. She was on crutches for two days and refused to use them today at school. Her ankle is still really swollen, black and blue and very painful. I'll keep you posted!

I hope everyone else's New Year started out better than ours!! :)

Mary Lou

[Laura P]

Mary Lou,

Did I miss something? How did Jamie hurt her ankle. Will continue to keep you in our prayers.

Laura P.

[nikyergen]

Mary Lou, I think we need to wrap Jamie in Bubble Wrap, if we could keep her from popping the bubbles. How did she twister her ankle? Did the doctor want to do anything about the chip that is currently there. Chips can be painful if they don't calcify to the bone and are left to float around. I am so sorry to hear of Jamies accident. Give her my love and prayers. But, I am voting for bubble wrap right now. Nikki

[Mary Lou]

Laura and Nikki,

Jamie was playing soccer in the garage with her sister and stepped on the spot where the black top from the driveway meets the concrete floor of the garage. The ER doctor wasn't concerned about the bone chip because he said it didn't have any rough or jagged edges. I called the orthopedic doctor that we usually use and asked if they would look at her x-rays and just reassure me that everything is okay. The receptionist said they would gladly do that, but I needed to make an appointment. I think I might call the ortho. that did her back surgery and see if he will look at the x-rays. I think I just need reassurance that the ankle/foot isn't broken and that the bone chip isn't going to cause her any problems.

I agree with the bubble wrap and I've threatened to do that! A few years ago, it was a broken wrist on Memorial Day for Jamie; a few years before that it was Fourth of July for Tracy and now New Year's Eve!

Thanks for listening.

Mary Lou