Jamie is 1 year post-op!!!!

[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