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View Full Version : We have a surgery date



carolnj
12-09-2004, 08:38 PM
Well, we have a surgery date of June 22, 2005. It seems so far away and yet I know time will fly by. Alex, my son, is okay with it. I spoke with his guidance counselor who told me he mentioned it to her and seemed to have a good attitude.

Anyway, what I wanted to ask you is this - do you, or did you ever, feel that no one really understands how serious this surgery is and how hard it will be on the person undergoing it?

I told my manager today that we have a date and he remarked "So you aren't going to start worrying about it right away are you?" I know he didn't mean to offend me but all I could think of is, if it were his child, he wouldn't be so cavalier about it. Well, maybe I'm just a bit sensitive to it. It just seems no one really understands how serious it really is.

Well, thank you for listening. I imagine unless you or a loved one is facing this, its hard for someone to really empathize.

Gail
12-09-2004, 08:57 PM
I understand completely. You feel like your world has stopped and everyone else just keeps going.

Gail

jachar
12-09-2004, 09:32 PM
Carolnj,

I totally know what you mean about nobody (who has not experienced this) really understands or SEEMS to care! I was feeling that way too, prior to Nichole's surgery. It was a VERY serious thing to me and it felt like everyone else sort of brushed it off. That is, until it was surgery day, and then afterward when they all heard everything that was happening, etc, they woke up. But it is so frustrating because you are so concerned about your child and there are so many worries and questions going through your mind constantly, but nobody is there to listen...which is why this forum is so great! I feel that this was the best resource for support that I have found anywhere. It still is now even when we are post op. It helps to hear other stories, ideas, and words of encouragement. Anyway, good luck to you and keep this forum in mind whenever you are having your "stressed out" days from all that worrying that is inevitable!!

Jaci

celestin1170
12-10-2004, 08:36 AM
We also finally got a surgery date. Her surgery will take place on January 25th. It is a little farther away than what they had originally planned but they had a hard time getting it rescheduled.
Everyone here has been really thoughtful and concerned about Keri's surgery. My boss at work has been great. He told me to take whatever time I needed to be home with her, and told me not to worry about anything at work and just concentrate on her.
I'm so thankful for his and everone else's concerns and understanding. All my coworkers have shown alot of concern and one of them has even offered to donate blood for her.
Hang in there Carolnj, we are all here and WE understand!
Talk to you soon.

Kim
Keri's mom

Bill's mom
12-10-2004, 09:19 AM
carolnj

I have to admit before Bill was diagnosed with this, I didn't realize what serious surgery this was. I knew of people who had the surgery but never really gave it a second thought until we were confronted with it. So, I sort of understand people not getting it.

I did want to tell you that my boss was not particularly sympathetic either. (Of course the fact that at first I couldn't talk about it without crying probably made him uncomfortable.) But, I brought Bill's pre-surgery x-rays to work one day. When people saw how bad his curve was they seemed to understand how major this was going to be. It really helped communicate the situation.

How old is your son? Definitely fewer boys than girls get this. My son is 16. He never really wanted to talk about it or read about it, but he was really OK with it and has done very well. (Surgery was Nov. 3.) So if either of you have any questions that need to be addressed by a teenage boy or his mom, ask away.

Susan

pat
12-10-2004, 12:25 PM
Hi I absolutely agree! Before my daughter was diagnosed with scoli, I just assumed it's a "spine thing" and you have frequent check-ups, and that would be the end of it. It's a very small percentage that goes the last step/surgery. And then, it's serious! We're actually working on creating a support group at our hospital just for pre and post op surgery families. It's just so needed, and of course, this board is wonderful. But I think to know scoliosis, you have to live it.

Carmell
12-10-2004, 02:09 PM
I agree - even well-intended family members have no idea the emotions that the scoliosis patient and the immediate family goes through. Sometimes we get so worried and filled with anxiety that its hard to ignore insensitive comments. Most people don't intend their comments to be insensitive, but that's how they often come across.

Braydon has back surgery every 6 months. Most people have no idea what that means. Although minor in the procedure, it is STILL back surgery. My stress and anxiety is the same everytime - because its STILL surgery. I try to not let the ignorant comments get to me, but sometimes its hard. I am fortunate to have a good employer who will allow me to take the time I need to be with Braydon for his surgeries. I also use quite a bit of time for myself - thinking about absolutely nothing. Then, I can re-group and get back to my responsibilities as a mother.

I hope everyone is doing well. Please know that this board is filled with people who have been in similar shoes and are in various stages of scoliosis treatment - a great place to be for connecting with others who have BTDT.

My best!

Laken
12-10-2004, 02:29 PM
I have had two surgery's, and mom felt the same way. I hope everthing goes well with his surgery. If he needs some advice I would be glad to talk to him about it. I wish i had of known about this message board before my surgery. At least now may be I can help other ppl goin through the same thing i did.

carolnj
12-10-2004, 05:53 PM
Thank you all so much for your repllies. It really helps to know that we are not alone - that all of you have or are dealing with this very same thing and I can come here and be understood.

Laken, thank you for your comments.

Susan, my son is 16 and he is the same way as your Bill - he doesn't talk about it much and hasn't been interested in the forum boards I have sent him links to. But, I did speak with his guidance counselor because I needed to know the schedule for finals in June and she said he had mentioned it to her and had a really good attitude about it. He just says if he needs it, he wants to get it done and over with.

Carmell, I agree with your comments on the well-intended family members. My brother sent me an email that I know he was trying to be encouraging in, but he made the surgery sound so trite that I kinda jumped on him. Now I feel bad. :-(

Pat, I am sure you are right - its like that with anything if I think about it - you feel bad for whoever is going through whatever, but you don't truly understand unless it has hit you personally.

Kim, Jaci and Gail - thank you for your kind words. I was feeling so sad yesterday and the normal stresses seem even more significant when you are facing a serious personal situation.

Thanks again everyone! Carol