Pre-admission disappointment - need perspective

[s&d]

Really exhausted from a long, icy, disappointing trip. Maybe tomorrow will give me a better perspective, but that's also why I came here almost as soon as I walked in the door.

Won't bore you with ice tales - 2 hour hour trip took 5 hours.

We were disappointed that the doctor thinks he won't be able to correct the deformity very much - it's a very long explanation as to why - but that the idea is to stop the progression and retain as much mobility as possible. Because we got there an hour later than our scheduled appointment, we saw the surgeon right away as soon as we walked in before x-rays were done, so we don't have an update on the progression of his curves. (The surgeon does, but things were done rather out of order so we didn't get that information.) The surgeon isn't certain at this point that he will take ribs for bone grafts, he'll decide during surgery. So maybe the rib hump will be decreased, maybe not. David's rib hump is very long, the doctor said, and they can only take about 5 ribs. If those 5 are corrected, the remainder will leave an even more noticeable hump - that's what he said. So he may use allografts, instead.

Also, the thoracic curve, which was 68* in June - as I said above, don't know today's measurement - will at best be down to about 50*, which will balance it with the lumbar curve.

Maybe I'm just tired and overwrought, or just reacting to David's disappointment, but it sort of feels like bait-and-switch. Maybe all the great results I read about here and elsewhere did us a disservice, I don't know.

David is disappointed and clearly expressed that to the doctor...and others.

Surgery is scheduled for 8:00 Monday morning. He'll be admitted Sunday night. I need to feel better about this and be able to help David.

[Theresa]

Hi s&d,

I'm sorry that you had a disappointing office visit. My T curve was 79 and my lumbar curve was 44. My A/P surgery was meant to be a holding surgery only. The dr. said he didn't think that they would get much correction but at least it wouldn't get any worse. I am now 20 months post op from my original surgery. When surgery was first finished my T curve was down to 22 degrees. It has settled down in the 30 degree range. Also I didn't have the rib hump reduction surgery but it's like it's not there anymore! I know that I am still off but people don't notice. They only notice how much straighter I look. Hopefully the same will happen for your son.

[CurvySAT05]

I think the doctors usually give you the worst case scenario. I know that when I had my surgery the doctor wanted to reduce my curves by 50% from 45 degrees to maybe like 22* or 23* and he got it down to 14*. My lumbar is still about 20* but it is nothing to complain about. I hope that his surgery goes well on Monday and that the doctor gets more correction than he is expecting.

[Laura P]

Dear S&D,

I am thinking they are giving you worst case scenerio also. I have also read on here of the really good correction and our daughter is suppose to be corrected from 55t to25 so I am hoping it will be better. We are scheduled for next Fri the 16th. I am sorry you had a bad day and maybe things will be much better. Our prayers will be with you and David Mon. I know you are like me and ready to be on the other side with everyone else.
Laura P.

[Alison]

I had essentially a holding fusion (only a few degrees of correction)....curves are still around the 60's.

Whilst I would love dearly some days to have a straight spine...this is me and is the way I am :-)

As I see it, I would rather have a spine that is 'held' (ie fused), at a reasonable level, then to have an unfused spine, that would continue to more then likely increase...have a greater 'deformity'...........and all the associated problems that come with it.......and have bigger problems thus to deal with later on

Just wondering, has the surgeon done bending x-rays for your son yet (how flexible the spine is)

Alison

[nikyergen]

S&D, I am so sorry about your appointment. However, are you sure he didn't say a 50 percent correction, or did he say he could only be able to get it down to 50 degrees. We were never told degrees of correction, Crystal had an 88 degree curve and the doctor told us he was hoping for a 50 percent correction. That was her big curve, he left her lower curve as he didn't want to fuse her any farther and it is pretty mild. She is fused from T2-L2. After he got her out of surgery and saw us in recovery he told us he got over a 50 percent correction. I to this day don't even know what her degree was are after surgery. She was so pleased with her correction, it wasn't important to her. Call the nurse, or a care coordinator and ask them to send you a doctors report when you get it. She will also be able to tell you what the degree of the curves are. We found Crystal's doctor very cooperative with this stuff. I know how overwhelmed you are feeling right now. Call the nurse first thing in the a.m. and see if she can give you another run down. Explain you were uptight, scared, etc., and not sure what you heard or understood. The nurses are generally pretty good about go over things with you. Hey, I had three girls all diagnosed within 2 hours by the Ped.Ortho.Surgeon. One was scheduled for surgery, one put in a brace, and one was a wait and watch. Talk about get all three scenarios and scared. But, we got through it. Lost a lot of sleep and got really grouchy about things, but we survived. Try to put it in God's hands, I know how hard this is.

Crystal had successful back surgery and is scheduled for two foot surgeries, middle daughter has been taken off of wait and watch and put as stable now, and the youngest gets her brace off in May. We are so thrilled with all of this. Why did I worry so much, because everything turned out great. I think it is just the nature of being a mom.

Lots of love and prayers to you guys this weekend and Monday.

'til later,
Nikki

[s&d]

First of all, thanks for the prayers. Just knowing you guys are remembering us in your prayers makes me stronger, David, too. All of you are in our prayers, as well.

Nikki, we had the doctor repeat it several times. 50*, not 50%. At last summer's visit I think we interpreted it to be 50%, which would have been a curve down in the 30's. The doctor spent a lot of time with us yesterday and at one point when he asked David how he was feeling, David said, "Well, I'm surprised that you can't fix it. I thought that's what we were doing. Why go through all of this just to keep things the way they are? I understand about not wanting it to get worse, but I thought we were going to correct it more than that." There were some other similar exchanges, each one of us expressing a similar thought. We know we have to stop the progression, so we're not thinking of changing our plans. We just had different expectations.

Bending x-rays were done yesterday. I think I remember that some were done a couple of years ago - back then they just vaguely mentioned that he had a pretty stiff curve.

I can't believe I have to go to work - I should have taken today off, too. But no subs are available today. Maybe the kids (at school) will provide a good distraction. They ususally do.

Thanks, I'll be checking in a few more times before Sunday. I forgot to ask about internet/computer availablility there. It would be nice if it's available.

SanD

[LindaRacine]

SanD...

I couldn't find anywhere where you posted the name of the surgeon. Would you mind telling us who it is?

--Linda

[s&d]

Karl Rathjen at Texas Scottish Rite Hospital

[mumof5]

I know how you must be feeling. It is so hard to watch not only the one with the scoloisis but the whole family go through the stress leading up to the surgery. I am thinking of you all.
Try to remember though, that everyone looks different with their curves. Some small curves are very noticable and there are some very large curves that people are surprised to find that they have.
When my daughters curves were in the 50's it was a surprise to us as we had thought that they would have been about half that. When they got into the high 60's and 70's that is when everyone couild tell that there was something wrong with her.
She is now 18 months post op. Her spine was pretty flexible and her curves are down to the high teens/ low 20's, but she looks straight. She has lost the rib hump that she had but her shoulder blade does stick out more than the other one does.
You don't know what the outcome will look like until they are on the other side and up and about. Try not to worry about it too much, easier said than done I know. They may get better correction than they hope for and it may just appear straighter than it really is.
Best wishes
Cheryl

[Carmell]

Hi SanD

Sending my best wishes to you and David and your family. I can only imagine the frustration and disappointment you all must be feeling after meeting with the surgeon. One thing to remember is that scoliosis patients do better in the long run when they have surgery to give their bodies a well-balanced outcome. That means the neck and pelvis are well-aligned, the rotation is reduced as much as possible (reducing the rib hump along the way) and keeping the shoulders and pelvis level. When surgeons think one-dimensionally and go for a STRAIGHT SPINE only, the patient usually has a worse outcome. Straight is good, but when the spine is straight and the rest of the body is out of alignment and balance, a domino-effect of problems can occur - does that make sense? Yes, David's spine may not be straighter than 50 degrees, but, if his overall body balance is much improved, he will be that much better off. And, it sounds like his curves are progressive curves - by having this repair surgery now, you are preventing future progression and worse surgical outcomes (IMHO).

Please keep us posted on how things go. Hopefully you'll be feeling much better about the whole thing soon!

[s&d]

Carmell, you have counselled me before, and always with great wisdom. You should/could start adding Ph.D and M.D. to your tag with your wealth of knowledge, experience and ability to communicate.

We are feeling better, having digested more information, just needed some Pepto-Bismol, I suppose. Thank you to all who supplied it. David is "on the runway, cleared for takeoff." (Funny, we were comparing our surgeon to some Blue Angels pilots we met - very similar in personality, appearance and demeanor - David likes that.) We leave tomorrow afternoon and this trip won't be the icy crawl to Dallas we had a couple of days ago. That will lower our stress level some.

Thank you to all for the information, advice and prayers. And while I'm at it, bless the internet, for I would be a basket case without this support.

T-minus 1 day, 22 hours, 24 minutes.
SanD

[Laura P]

Our prayers will be with you as we are right behind you. Good luck and keep the faith.

Laura P.

[flowerpower]

Prayers to your son and you for a successful, uncomplicated surgery & recovery.

Renee

[s&d]

Thank you Laura and Renee - you're in our prayers, too. Went to church tonight and I put this whole NSF community in our community prayers - and the priest added all the doctors and nurses, too