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 :)

[Laura P]

Thank you for the prayers our church has started praying too. It does bring a peace knowing so many prayers for our children and medical staff are being prayed. Good luck the next few days and we will be thinking of youall.

Laura P.

[Cheryl M]

My prayers for David, your family, his doctors and every single person who will be helping with the surgery and recovery. I pray that this Dr. will be surprised at the amount of correction he is actually able to achieve and that David will be balanced and looking straight by Monday afternoon. I pray for a hugely successful surgery and a speedy recovery and for mom to be strong. Remember to have him walk as much as you can. The PT's come and get them up, but we found that after that,the nurses left getting my daughter up to us. I firmly believe walking speeds up the recovery.

Luv
Cheryl

[dancermom]

You have my prayers too for David and all that are involved in his surgery. Take care of yourself through his healing process. I pray that his correction will be very good and you and David will be pleased.

Connie

[s&d]

God bless all of you. I will keep your advice in mind and your prayers in my heart. David, his dad, and I all thank you. :)

Ready for "takeoff" in a just a little while - finishing up last minute tasks.

SanD

[KRIS ATKINSON]

My prayers for David tomorrow! Kris

[Cheryl M]

David and family,
My prayers for you this morning. I pray for a successful surgery and a speedy recovery. I pray for good decisions by your surgeon and every caregiver that will be taking care of you today and all week. I pray for your mom and dad as I know what a tough day this is for a parent. I pray that God will give you peace and comfort today.

Cheryl

[AnnLF]

It's almost 8:30 a.m. as I write this and since we're on the same time zone, I'm thinking David is just getting started. You'll be in my prayers throughout the day. Ann

[Laura P]

S&D and David has been in my thoughts and prayers all day today. Can't wait to hear how good he is doing and how today has gone.

Laura P.

[Cheryl M]

S&D and David,

Continued prayers for you. Can't wait to hear from you.

Cheryl

[s&d]

I'll keep this short for now - exhausted, but pleased with everything.
We were released yesterday, Friday the 16th, after surgery on Monday the 12th! Everything has gone very, very well - even so, as many of you know, we are exhausted as I said. Can't say enough about Scottish Rite and I intend to write in more detail at a later date, but David was just amazed and touched by the level of care he received from all areas. (We just had one not-so-great nurse, but she wasn't with us for long.)

David's head does seem to be much more centered over his pelvis, and I've come to understand much more about this than I did after our pre-op appointment. After he was up and walking David said he felt more balanced. Some modest correction of his curves and we'll find out more about that in a couple of weeks when we go back.

No problems, only half a unit of blood lost, uneventful surgery, excellent progress since. Only real concern was temp of 101 last night, a bit more than they told us to expect. Called Scottish Rite after midnight and got immediate consultation with a nurse who cared for David and contacted the ortho on call. Gave a good sized dose of Tylenol and we're watching his temp closely, but everything else seems to be right on track.

I never could get on the computers that were available on our floor - didn't have much "down time" and when I did other parents were on them or some of the kids who are in long-term treatment were cramming for semester finals on all available computers, even after midnight.

More updates to follow, but until then God bless you all, and thank you again for your support, prayers and encouragement.

SanD (Sandy, Danny and David)

[nikyergen]

Sandy, So glad things went so well for David. Glad you are all home safe and sound. You are now on the other side. I read your post to my husband, who is a Scottish Rite Member, and he was so pleased to hear how pleased you were with David's care. It makes his fundraising efforts so worthwhile. I think every child gets one "no so great" nurse. We had one for Crystal, only once thank goodness. We called her seargent nurse (lol).

Keep us all posted on how David is doing. You will be surprised to how soon he will begin to feel better. Then, you have new worries. Like these kids feeling so good they want to do things they shouldn't do.

'til later,
Nikki

[KRIS ATKINSON]

S&D, congratulations and welcome to the other side! Glad surgery went well for David. Kris

[Laura P]

SanD,
How is David doing. Would love an update on dealing with pain and diff. things, since youall are right ahead of us. If you have time e-mail me at laura.pendergrass@comcast.net thanks. Do you think David will make it back to school next week? Just a few questions. Let us know how he is doing.

Laura P

[s&d]

Hi Laura,

I wish I had some really good advice for you. I think we've just been very lucky. David is doing very well, but he probably had a less extensive surgery than Jamie's. The doctor ended up just fusing to hold his major curve from T-5 to T-11, very little correction, no thoracoplasty (rib grafts). David's major curve is just too stiff to correct very much. His spine is still very much a backwards "S". The surgery did last about six hours and he's had some nerve/muscle spasms related to being supported on his hips and shoulders during the surgery, and also spasms from the shifting of his spine and ribs that did occur. David is very lean without much muscle mass and that probably works in his favor for now, since they didn't have to go through big, meaty muscles. The spasms are very painful but don't last too long and he's managed to get through them - how, I don't really know.

David was very determined to get off the narcotics as soon as possible because they caused him so much gastrointestinal trouble, which aggravated his back - so once he had that solved he really, really didn't want any more even though he did have some pain that was bad enough to warrant the use of the narcotic. The best thing at that time was a visit from a friend. They played on the XBox for a while and David said he was so distracted that he didn't feel any pain. David's sister who came home from college shortly after we got back from his surgery has also been a good distraction. (And God bless her, she has been a tremendous help to me!) He also says walking helps, even if it's hard to get going. The weather here has been warm and dry and that allowed him to get out in the yard some, but most of his walking has been in the house. He got a pedometer in his Christmas stocking and he's been doing 1 1/2 to 2 miles a day! This is a former couch potato!

We saw the doctor yesterday and he is thrilled with David's progress - the doctor was literally beaming! He says David's "ahead of schedule" and gave him permission return to school next week, half-days at first, then up to whatever he can tolerate. His physical activity is less limited now and he can do what he feels like doing short of "anything athletic" or that might involve lifting ten pounds or more. (Our cat weighs 8 lbs and David couldn't hold him for very long last night, but was glad to try.) Doctor said he can unload the dishwasher and such, but until David can reach a little better and move his neck more comfortably, I think I'll hold off on that. We're just thrilled that he can go to the bathroom by himself! Just a week ago that was not possible (well, lifting the seat and flushing wasn't). A week ago he always needed help sitting and getting up or adjusting himself in bed - now he manages that by himself just about all of the time.

At this point I feel compelled to say something like "your mileage may vary"...everybody's different and every body is different. And as I said above, David's surgery was T-5 to T-11, not as extensive as most here, it seems.

Bottom line, David says moving helps the most. Distraction in whatever form works...I like laughter, but I know David had to stifle his a bit because laughing normally hurt. He can laugh more now, but it's sort of a high giggle and not his former more boyish guffaw. Another thing that we needed to do quite a bit was help him focus on his progress overall, give him perspective when he got frustrated. I think after the visit with the doctor yesterday we might not need to do that too much.

I hope things get much, much better for you and Jamie very soon, just as they have for us. I keep you and everyone on this forum in my prayers and give thanks for the wonderful support I found here.

Sandy

[nikyergen]

Sandy, it is wonderful to hear about David's recovery. He is doing so well. Crystal would agree with him. She felt that walking and moving about did more for her healing than anything. Tell David to keep up the good work.

Nikki

[Laura P]

Sandy,
Glad to hear David is doing so good. I agree with you the more Jamie moves the better she feels. Her friends definately perk her up. She laughs and just beams when they are here and they are coming regularly which is good. She knows when she needs to lay down and just does and they are so good and helpful. She still hasn't let me fix her hair or put on makeup but she is shooting for Sat. All of her friends are coming over here for a party. They have played so many games it is so fun to hear them all laughing. Their favorite is Catch Phrase and Apples to Apples. Jamie can play even when she has to lay down. They have been so good to include her and we are so blessed. She walks ok not great. The pain med incident set her back a little because she slept most of yesterday but she did alot better today. Her smile is coming back which is great. Hope youall continue to do great. Our prayers continue to be with everyone. Happy New Year. 2006 will be good!

Laura P.
Jamie's Mom Fused T-2 to L1 12/16/05

[flowerpower]

Sandy,

I am so glad to hear how well David is doing. He sounds like my Joe, trying to exercise and get in a good couple of walks around the neighborhood every day. The pedometer was a good idea, wish I would have thought of that. Hope everything goes well and that he makes good, steady progress everyday.

Best Wishes for the New Year,

Renee