Sidney's/Danielle's/Jesse's/Tahlia's moms--How are they doing?

[pmsmom]

How are your children coming along? I don't see too many posts from you all anymore, so I'm thinking that all is ok.

If I left anyone out whose child recently had surgery, please forgive me.

I'd love to hear from you, too!

Marian

[babachi]

Hi Marian,
I actually started to type an update last night, but had trouble with my computer.
Jesse's doing really well. He had an appointment 1/25 and has another one on 2/22. He's back at school. At first his teachers were loading him up with lots of make up work. I had a conversation with the guidance counselor and Jesse's responsibilities at this point are only to make up mid terms, no projects. I don't know how they thought he was going to make up 2nd term work, projects and midterms while staying on top of the new term's work. I had to explain, again, the severity of the surgery, the complications, etc. to get them to understand that this kid was in the hospital for 2 weeks, was on narcotics and had a grandfather die and was on bed rest.

As far as his physical healing, here's the scoop. Jesse has a "sagging" shoulder. This is because of all the muscles being shifted. He needs to work on doing shoulder shrugs with 1-2 pound weights. The doctor said it could take up to 2 years for that to work itself out. He went from a 9* tilt of his shoulders to 3*. It is more noticeable now than before surgery, but that is because he needs to build up his muscle tone.

My dad actually took Jesse to his last appointment. The doctor told my dad that Jesse had a 58* curve at the lower portion of his spine and 42* at the upper portion. (I was told several times the upper curve was 68*, so I'm thinking Dad misheard). Anyway, the doctor told me before surgery he was hoping for 30-50% correction with the surgery. Jesse now measures at 24* upper and 15* lower!! I am quite pleased with the results.

Jesse still has some numbness in areas and I was told it could take up to a year for the nerves to "wake up". He is getting better everyday. His restrictions at this point are no sports, rough stuff, or falling. He can slowly build up (over the next 3 months) to holding/carrying/lifting 20 pounds maximum. He can bend and turn as is comfortable.

Jesse's surgeon used stainless steel hardware. I had to double check that because I've heard titanium is used a lot and someone questioned me when I told them Jesse had stainless. The rods are 6.35 mm diameter (or approx. 1/4").

I am so relieved to be at this point, but I still do check out what's going on here.
I hope everyone is well.
Bethany

[pmsmom]

Thanks for the update, Bethany. It sounds like Jesse is doing quite well.

I don't think most people can appreciate the severity of the surgery, especially if Jesse looks and is doing well.

My dd's surgeon is also looking at using stainless steel. I have yet to ask him why he prefers that as two surgeons before him said they preferred titanium (although I'm discounting the first guy as he was not on target anyway).

Thanks for checking in.

Marian

[WNCmom]

Marian--

Sidney has just reached the 3-month mark and in fact today we were at a local hospital getting x-rays done to send up to the surgeon at Shriners in Philadelphia (we live in NC). S. had an in-person checkup there at 7.5 weeks, and all looked great, Dr. Cahill said. We hope to hear the same when he reviews the x-rays just taken. We'll go again for an in-person checkup at 6 months.

Sidney is still walking daily--up to 4 miles, and often it is hiking. The post-op restriction list we got at the hospital says he is now allowed to bend to 45 degrees, do light jogging, go to school dances, and swim, with more restrictions lifted at 6 months. However, we will wait until the surgeon reviews these x-rays and then ask for the go-ahead, just to be sure.

School has been fine; he went back at 4 weeks and is completely caught up (it helped that holiday break happened at 5 weeks post-op). He no longer takes a pillow with him to school. He is even able to sit through a 1.5 hour orchestra rehearsal (he plays violin) now without taking a break to rest his back. I think he is anxious to be able to move more. He's not a team athlete kind of guy, but I know he'd love to be able to play frisbee with his friends.

Bethany, I was interested to hear about Jesse's sagging shoulder, because Sidney has that, too. It worries me, and I was so glad to hear about specific exercises Jesse can do to even out the muscle tone. I have noticed that Sidney's neck/high shoulder muscles are significantly more developed on one side. I would be interested in more detail on the exercises. Where would the weights be--in his hands (I'm not very knowledgable about weight training)? It is actually good to know that his body can take years to adjust--that will help me be less anxious about it. Although Sidney seems to be fine, I still find myself very worried sometimes, as if I'm waiting for the other shoe to drop. Is there some kind of post-op stress syndrome for moms?

Sidney also has stainless steel rods. I have heard there are advantages and disadvantages to both stainless steel and titanium, and different surgeons have personal preferences. I think Sidney has numbness only around his scar, which is very long. He does complain that it itches a lot, and it's the kind of itching that scratching doesn't help. I've heard it described as "like trying to scratch an itch through cardboard." I understand this to be nerves waking up, and see it as a good sign. Sidney doesn't scratch, but wishes he could!

So Marian, I guess the short answer is that Sidney is doing very well--I'm the one who is not always calm, at least on the inside. I do still check in here on the forum about every day, but I don't post about Sidney because from day to day there's not much news. I will say that time seems to have flown since the surgery.

When we hear from the surgeon after he reviews the x-rays, I'll post again. Thanks for asking!

Mary Ellen

P.S. Bethany--I'm sorry to hear about the loss in your family. I don't know how that got by me. You've certainly had a full plate since Jesse's surgery date.

[laurieg6]

I just wanted to add to this conversation because my son's shoulders aren't even either. He's 1.5+ years post op and I still am encouraging him to straighten his shoulders. He's been going to physical therapy for about 9 months now and it while it has helped a lot with building up strength, it hasn't led to a complete evening out of Alexander's shoulders. Part of it is his love of the computer, I think, because he's a righty and uses the mouse with his right hand and I guess he's lifting his shoulder more than he should? He's been stretching, weight training, swimming, biking, walking, etc. and still doesn't have great posture so I'm trying to accept that there may not be much more that I can do. He can be straight and tall but he leans to one side, sort of on one hip more than the other if he doesn't think about standing straight. (Sorry to ramble on about this so much, I guess it does still worry/bother me).

On another subject, I agree, Marian, that there can be some kind of post-traumatic stress reaction after this surgery. It took me over a year post-op to really be almost fully calmed down and not constantly worry about everything he did. We have another orthopedic follow-up appt. next week and I always still am anxious about these visits.

I'm so glad all your children are over their surgery and back to their regular lives and that their outcomes have been so positive. It really does get easier to cope as time goes on. By the way, Alexander also has stainless steel rods and screws. Our surgeon said he felt they were stronger and less likely to break in a growing boy.

[pmsmom]

Hi, Mary Ellen. Hard to believe it's been 3 months. I'm glad that Sidney is doing well. It's good to know that he can do more and more each day!

Thanks too, Laurie, for posting about Alexander.

These stories have been so encouraging. We go back to the surgeon on the 18th. Dd's curve will be measured again. So we don't know what to expect--whether surgery will be needed this summer or not. Part of me wants to put it off as long as necessary, and the other part of me says to get it over with this summer and let her get on with her life.

I suppose it won't get any easier as time goes on. It would be so much easier to make this decision if she was in pain or something else was going on. I also want her to be covered under dh's insurance so she doesn't have to worry about this after she is out on her own.

Thanks for the updates and letting me vent my concerns!

Marian

[babachi]

Mary Ellen,
here's a link that describes shoulder shrugs. Jesse is starting out w/ 2 pound dumbbells (you can get them at Walmart, Target, Sears) that he holds in his hands. 20 shrugs, 2 times.
http://www.fullfitness.net/routines/shrug.html
you can also google shoulder shrug or trapezius exercises for more info.
Hope that helps.
Laurie, were Alexanders shoulders far off before surgery? Jesse's scapulas were noticeably off, but to look a him straight off, you couldn't see it.
Mary Ellen, thanks for the condolences. My father in law passed away 12/29. Just a couple days before Jesse got home (the 2nd time). He was very sick (congestive heart failure) and we knew it was coming. Doesn't make it easier, but as they say, at least he's not suffering anymore.
Bethany

[laurieg6]

Alexander's shoulders were uneven before surgery but we thought the surgery would "straighten him out" and we would never have to think "stand up straight". That's not what happened but he is definitely straighter and his overall back looks so much better.

It takes a long time for even kids to fully recover from the surgery. Only recently though, our physical therapist commented that Alexander is probably right in the middle of his age group - strengthwise. But this took over a year to achieve. Maybe it's a boy thing to not have such great posture post-op. I know that many boys tend to be less flexible than girls and Alexander was described by his PT as the "2nd least flexible person" he'd ever met.

Well, I've been following all your surgeries and I hope your kids continue on their challenging but amazing recoveries.

[Kitty]

How are your children coming along? I don't see too many posts from you all anymore, so I'm thinking that all is ok.

If I left anyone out whose child recently had surgery, please forgive me.

I'd love to hear from you, too!

Marian

Awwwwwww....so nice to know people are thinking of me and Tahlia. I've only just logged in today after several weeks away, so good timing I think.

Yes, things are okay. Tahlia had an appt with the surgeon about 4 weeks ago and all was okay. He was happy with x-rays and we see him again in 3 months. Tahlia is now 3 months post-op (I still can't believe it) and she is back at school. Returning to school was VERY VERY stressful and I've been an over-protective mum i know and Tahlia thinks i'm a nag. I've been to the school to inform them that she can't do sport for 6 months and they've re-organised classes for her so that's good, but she was supposed to get a locker, so she didn't have to cart all her books and things around in her bag, as i was sooooooo stressed about her overdoing it and OMG!!! the first day back, just seeing her with this bag on her spine and my visualising all sorts of wear and tear and strain on her poor little back with those rods just barely taking, i couldn't cope!!!! I was such a mess!!!! Anyway, Tahlia finally got her locker, but now doesn't have a lock. Uggh!!! Sorry, just venting.

I spoke to the orthotist on thephone the other day just to clarify the bending/twisint/weights restrictions etc., so I could make sure i wasn't over-reacting to things and she basically said that Tahlia could bend as she liked because the brace would prevent her doing any harm. She is allowed to bend at the hips and knees so Tahlia's been doing a little bending, but taking it easy anyway, so no major dramas there. Her orthotist said she should carry no more than 5kg in her backpack to school and having spoken to you guys previously, that is what i was sort of limiting it to anyway. But basically, that means i've had to have one set of books at school and one at home, but that's okay if it takes the weight off.

Bethany & Mary Ellen, Tahlia also has numbness in her back and our surgeon said this was normal also. Tahlia occasionally has tingling also and says it feels like the itch is like when you put two wires together that create a "spark" but when she scratches it, it doesn't relieve the itch, because it's too far inside her body. She also says that she likes it when it does itch, because she feels that it means she's healing and the sensations/feelings are gradually coming back into her body (back). She still can't feel down the left side of her back also. But i'm not worried, i know this will heal and repair itsefl in time.
I hope that you and your kiddies are doing well and getting stronger each day and i wish you all the best and once agian thank you all so much for your kind thoughts and support when we were going through this.

Lotsa love
Lisa

[pmsmom]

Thanks for the update, Lisa.

I'm glad Tahlia is doing so well!

Take care,
Marian

[WNCmom]

Just a note to say that yesterday we heard from the surgeon that Sidney's 3-month x-rays look good and that his is now allowed to bend to 45 degrees, jog (lightly), swim, bicycle, stretch, throw a frisbee, and attend school dances if he wants. Still no lifting over 5 lb. Dr. Cahill reiterated that many posture issues take 6-9 months to resolve, so it's just "tincture of time," and patience on my part. Stay tuned....

Mary Ellen

[pmsmom]

Just a note to say that yesterday we heard from the surgeon that Sidney's 3-month x-rays look good and that his is now allowed to bend to 45 degrees, jog (lightly), swim, bicycle, stretch, throw a frisbee, and attend school dances if he wants. Still no lifting over 5 lb. Dr. Cahill reiterated that many posture issues take 6-9 months to resolve, so it's just "tincture of time," and patience on my part. Stay tuned....

Mary Ellen

Congratulations!

How well is Sidney able to comply with the doctor's instructions? I know my dd will be extremely frustrated to be so limited.

It seems like we will never get there so I hope you all keep posting. Your posts are always so encouraging!

Marian