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Pooka1
03-18-2008, 05:08 PM
I just received the surgery info packet. We will see the surgeon on Monday for the pre-surgery prep.

Here are some points from the material:

1. Each child is in a private room with a sofa bed for a parent. That's great because I planned on being with S the whole time if she wants. It is "infrequent" that the child will be in ICU that night. So I will likely be with her that first night also.

2. The usual stay is 5-7 days. The surgeon told us about 5 days. The insurance okayed 5 days.

3. She will go home with some pain meds but can probably manage on OTC meds after they run out.

4. No PT needed at home.

5. Usually the child is able to go back to school 3 weeks after the surgery(!). An absence of 4 weeks is the usual criterion for obtaining homebound school instruction and most patients are back at school by that time. This is in keeping with what the surgeon told us... 3 weeks... but I didn't realize he was counting from the surgery date and not the date when she comes home!

6. One surgeon has NO restrictions on the weight of bad packs if they are carried close to the body (front or back) and both shoulder straps are used. Our surgeon limits it to 10 pounds using both straps.

7. PE to resume one year after surgery. This differs from what the surgeon told us (8 months). And I see in the discharge instructions it says 8 months.

8. Typically, a child will have enough energy to go back to school 3-4 weeks after surgery. In another month,they will feel back to normal. Gradually increasing walking is helpful. Walking one mile by the time of the first post-op visit (3-4 weeks after surgery) is a good goal.

So there you go. With one week being vacation, I may not need to get a tutor for S. Her sister W is in most of her classes (except elective) and can bring the work home.

Aussiemum
03-18-2008, 07:14 PM
That's great Sharon that they gave you a list - we received zip, zilch, nothing!!!! Please remember the Scoliosis Motto - Everyone is different!

Plan for the what if's so your prepared... such as - what if she does to ICU - where will you stay? (the hospital gave me a bed for the night in the paediatric ward).

School work - Elysia can't sit for hours on end hunched over school books - so we've stuck with the core subjects that make a big impact if missed out - like Maths!!!! We didn't sweat if we missed out other subjects.

Advice - Take your own pillow from home! The fold out beds for parents can be torture, at least make it tolerable by having your own pillow. I had pillows - 2 blankets, a lovely soft snuggle rug for Elysia and a wollen one for me - (I hate hospital blankets) and it made her room so much more personal to have some of our things.

Also she may not feel like full days back at school. Elysia looks fighting fit and well and overdoes things ALLLLLL the time and pays the price later. We went out to dinner last night with friends and Elysia had a great time but was so exhausted she was up to 4.30am with back and rib pain. So allow for easing back into school - play it by ear!

Good luck with everything, hope it all goes well!!!

Del
xx

txmarinemom
03-18-2008, 10:14 PM
Just a few comments ...


2. The usual stay is 5-7 days. The surgeon told us about 5 days. The insurance okayed 5 days.
I had to laugh when my insurance initially okayed THREE days (what?!?!). It's standard practice, so don't worry if she happens to need more time - they re-evaluate during the stay with nothing required from you. Mine ended up approving the entire 6 days.

One thing I wanted to note, hospital tend to rush you out when they get ready: If it's 11:00 a.m., and you're not ready to go, remember you've already paid for that day :). Technically, you've got until 11:59 p.m. to stroll out - LOL. (yes, most patients - and aprents who've been sleeping on a fold out chair in the room! - are ready to bust out as soon as they can ... just wanted to point out they charge your insurance for the full day whether you leave at 6:00 a.m. or 11:00 p.m).

A tip for you, those fold out chairs are normally quite reminiscent of your Aunt Bertha's sleeper sofa from 1962 (springs, bars, etc.). My mom insisted on staying with me the first night and we seriously had a giggling fit at the HUGE squeaking springs. It wasn't very funny when we discovered the springs stuck out (she was SO miserable, but wouldn't admit it).

You might want to pick up a two 1" full or queen size memory foam toppers (to double on wherever you're sleeping, and to double on her bed). They'll come in handy once you get home for bed, couch, wherever she wants to hang out.

And for your own comfort, a pillow from home never hurts!


3. She will go home with some pain meds but can probably manage on OTC meds after they run out.
That would be fantastic if she only needs OTC, but be sure to talk to your doctor (remember it's just a general guideline) and get a prescription for something stronger before you leave the hospital juuuuuust incase OTC doesn't cut it. There no shame in pain meds if you need 'em ... that's why they exist! :). Having script in hand before you head home ensures if she needs them after hours or on a weekend (I hope not), you aren't stuck trying to reach a doctor on call unfamilar with her case.

I've done that, and it's the pits.


4. No PT needed at home.
That's another one of those things that varies by doctor. I know several on here who had my *exact* surgery (some from even back in the December bunch), and they're just now doing PT. Hanson told me no PT in my future at ALL.


5. Usually the child is able to go back to school 3 weeks after the surgery(!). An absence of 4 weeks is the usual criterion for obtaining homebound school instruction and most patients are back at school by that time. This is in keeping with what the surgeon told us... 3 weeks... but I didn't realize he was counting from the surgery date and not the date when she comes home!
This is really, REALLY pushing it for most kids. I'm sure the moms will chime in, but full days at 3 weeks normally are out of the question, and a good portion of kids aren't even ready for part days by then.

Whenever she returns, don't forget that pillow. Hard back chairs and hardware don't mix well (to say the least).


6. One surgeon has NO restrictions on the weight of bad packs if they are carried close to the body (front or back) and both shoulder straps are used. Our surgeon limits it to 10 pounds using both straps.
10 lbs. at 3 weeks (assuming she's back by then) would scare me if it were my child, and honestly, Sharon, I would be surprised if she'll find humping 10 lbs. bearable that soon.

Have you considered a rolling backpack for that initial return period?


8. Typically, a child will have enough energy to go back to school 3-4 weeks after surgery. In another month,they will feel back to normal. Gradually increasing walking is helpful. Walking one mile by the time of the first post-op visit (3-4 weeks after surgery) is a good goal.
Walking is definitely the best rehab, but I still think 3-4 weeks from the day of surgery is optimistic (for full days of school). Kids and adults both get worn out easily the first 5-6 weeks. My recovery has been far more like that of an adolescent, and today marks 6 weeks for me: I can finally clean the house, do laundry, cook, mop, clean the car, do the grocery store, etc. without running out of gas, but only has that really changed in the last week .

Like I said, walking definitely builds endurance - and as you said starting gradually is he way to go. Every little bit helps - and some days in the beginning (when I was in fear of walking too far away from the house, getting stranded, and having the embarrassing pleasure of having to call a friend - LOL!), I'd just do a short walk a few times a day.

I think the most important thing to remember is every (kids and adults alike) are different. Different pain tolerances, different healing rates, and different times to regain normal energy and activity levels from such an extensive operation.

I haven't seen you say ... did she do an autologous donation?

Anyway, best wishes to you and your daughter. I'll be thinking of y'all on the 26th, and look forward to good news. May the surgery be succesful - and uneventful - and her recovery be a breeze!

Regards,
Pam

nate03
03-19-2008, 07:35 AM
Hi Sharon-
You must be glad to have gotten the packet of info - it is always helpful to have everything written out in front of you, knowing what to expect rather than wondering is always better.
I forget, who is the surgeon?
Also, any news regarding your other daughter?
Good luck,
Cara

Pooka1
03-19-2008, 12:21 PM
That's great Sharon that they gave you a list - we received zip, zilch, nothing!!!! Please remember the Scoliosis Motto - Everyone is different!

Yes that's right. When they say "infrequently," "usually," etc. I assume they are referring to the situation for all their patients they have done. So it's their best guess based on all their other patients in their dataset.

Plan for the what if's so your prepared... such as - what if she does to ICU - where will you stay? (the hospital gave me a bed for the night in the paediatric ward).

School work - Elysia can't sit for hours on end hunched over school books - so we've stuck with the core subjects that make a big impact if missed out - like Maths!!!! We didn't sweat if we missed out other subjects.

Well I want her to do all the work she misses so she won't be at a disadvantage either at the end of the year or for next year. She definitely can't miss any math. School is the most important thing.

Advice - Take your own pillow from home! The fold out beds for parents can be torture, at least make it tolerable by having your own pillow. I had pillows - 2 blankets, a lovely soft snuggle rug for Elysia and a wollen one for me - (I hate hospital blankets) and it made her room so much more personal to have some of our things.

I will do that but it sounded okay... "small sofa bed."

Also she may not feel like full days back at school. Elysia looks fighting fit and well and overdoes things ALLLLLL the time and pays the price later. We went out to dinner last night with friends and Elysia had a great time but was so exhausted she was up to 4.30am with back and rib pain. So allow for easing back into school - play it by ear!

Wow. Well I'm going to get her a very portable pad she can carry between classes so she can be comfortable sitting. I may meet her at lunch and let her rest in our van if necessary. I'll make sure her sister or someone (maybe me) carry her bag if that helps her return to full days quicker. It kills me that she will miss any school.

Good luck with everything, hope it all goes well!!!

Thanks so much, Del. I appreciate your kind thoughts.

sharon
text text text text

Pooka1
03-19-2008, 12:24 PM
Hi Sharon-
You must be glad to have gotten the packet of info - it is always helpful to have everything written out in front of you, knowing what to expect rather than wondering is always better.
I forget, who is the surgeon?

I'll pm you.

Also, any news regarding your other daughter?

She is getting the night-time bending brace. It should have bene in last week but still isn't here. I have to call them.

Good luck,

Thanks so much, Cara.

sharon
text text text text

txmarinemom
03-19-2008, 03:10 PM
Well I want her to do all the work she misses so she won't be at a disadvantage either at the end of the year or for next year. She definitely can't miss any math. School is the most important thing.

Then perhaps you should reevaluate the timing of her surgery or explore other alternatives for her school work vs. planning her return so quickly. I'd think her health/comfort would be the most important thing. I also suspect math is the last thing she'll be up to in the first few weeks after surgery.


I may meet her at lunch and let her rest in our van if necessary. I'll make sure her sister or someone (maybe me) carry her bag if that helps her return to full days quicker. It kills me that she will miss any school.

Sharon, I'm fairly certain my time spent trying to be helpful is an an exercise in futility (especially since my previous post was completely ignored). I'm going to knowingly waste my time ONE more time to say I really don't think you understand the magnitude of what lies ahead.

Have you noticed no parents have contributed anything resembling agreement this timetable you've set is realistic? Del's the only one who's even come close to that, and Elysia is not the recovery norm (you know what I mean, Del - and certainly you know no offense).

I understand you think I'm clueless, and that's fine. You're not the first person, you won't be the last. At least I know I've tried to give you facts and help out.

As I've pointed out before, my recovery has been more along the lines of an adolescent than adult (both the parents and adult patients here can vouch for that). You've questioned every single thing I've tried to explain (actually almost everything *anyone's* answered since you joined this board. I've always been puzzled by people who ask questions, simply to argue/debate the answers. If a person knows the answers, why ask the questions?

Of course your daughter will heal, but return to school (even part time) at 3 weeks is unlikely, and a "rest in the van at lunch"?? A 1-2 hour nap is more like it.

You (understandably) can't fathom the way this surgery zaps you at first. There are *always* exceptions (I *am* one, in fact), and I hope your daughter's one. I *also* hope you haven't led her to believe a walk in the park awaits. You're both setting yourself up to be disillusioned with reality.

Out of curiousity, that post-op list you received ...

How many similar fusions a year are performed by that hospital, and how many by her surgeon?

Most of those instructions flag the sign of either that says "not many".


text text text text
*sigh.

mariaf
03-19-2008, 03:52 PM
Hi Sharon,

You stated:

"Well I want her to do all the work she misses so she won't be at a disadvantage either at the end of the year or for next year. She definitely can't miss any math. School is the most important thing.

Well I'm going to get her a very portable pad she can carry between classes so she can be comfortable sitting. I may meet her at lunch and let her rest in our van if necessary. I'll make sure her sister or someone (maybe me) carry her bag if that helps her return to full days quicker. It kills me that she will miss any school."

(sorry, but I couldn't do the "quote" thing the way you posted):

While I can understand anyone's concern when a child may miss weeks of school - and while I KNOW you want only the best for your daughter, it sounds to me like if she's going to need to rest at lunchtime, then maybe she wouldn't be ready to return at that point.

I'm not saying that school isn't important, but I know so many kids who have had fusion, missed weeks of school (it varies - could be 4, 6, 8 weeks) and they all caught up. What about getting a tutor at home? Most schools provide this.

One parent told me that even at 5-6 weeks post op, their child tired out just from having the tutor over for a few hours.

Of course, if your daughter's recovery moves a long quickly, then yes, why not let her return to school if SHE feels she can do it. But, please realize that missing even 4-6 weeks of school will not make a difference in the long run. These kids catch up quickly and when she's in college and you look back you'll see that in the grand scheme of things, missing an extra week or two didn't do any damage!

I also think Pam made a very good point - if you are very concerned about missed school work, is it feasible to do the surgery over summer break? This way you'll be less stressed over school and your daughter doesn't have to rush back before she's 100% recovered.

I hope you don't mind my candor - I think it's best to throw information and ideas out there in an effort to help others - I guess my feeling is that folks can take what they like and leave the rest.

Best of luck to your daughter. I wish her a very speedy recovery.

Pooka1
03-19-2008, 04:14 PM
While I can understand anyone's concern when a child may miss weeks of school - and while I KNOW you want only the best for your daughter, it sounds to me like if she's going to need to rest at lunchtime, then maybe she wouldn't be ready to return at that point.

I'm not saying that school isn't important, but I know so many kids who have had fusion, missed weeks of school (it varies - could be 4, 6, 8 weeks) and they all caught up. What about getting a tutor at home? Most schools provide this.

I'll type it exactly as it appears in the material...

Shall I arrange homebound school instruction for my child?

Usually your child is able to go back to school 3 weeks after the surgery. Occasionally, a parent may want to make homebound school instruction arrangements if the school is willing and or requires it. An absence of 4 weeks is the usual criterion for obtaining homebound school instruction and most patients are back at school by that time.



I also think Pam made a very good point - if you are very concerned about missed school work, is it feasible to do the surgery over summer break? This way you'll be less stressed over school and your daughter doesn't have to rush back before she's 100% recovered.

I asked if we could wait until summer break and the surgeon said no.


I hope you don't mind my candor - I think it's best to throw information and ideas out there in an effort to help others - I guess my feeling is that folks can take what they like and leave the rest.

Best of luck to your daughter. I wish her a very speedy recovery.

Thank you. I appreciate your candor and am grateful for advice on this.

Best regards,
sharon

Snoopy
03-19-2008, 04:37 PM
[QUOTE=txmarinemom]

Have you noticed no parents have contributed anything resembling agreement this timetable you've set is realistic? Del's the only one who's even come close to that, and Elysia is not the recovery norm (you know what I mean, Del - and certainly you know no offense).



Although my daughter was the exception to the rule, she was given permission to return to school after her 1st post-op visit. Had it not been Christmas break, she would have returned at about 3 1/2 weeks post-op, half days. By 4-4 1/2 weeks post-op, she was back to school 1/2 days and back full days by 6 weeks. As far as tutoring, my daughter was entitled to up to 30 hours of tutoring and only received less than 2 hours TOTAL. Turns out it is very hard to schedule tutoring over Christmas break--maybe that's something to think about when scheduling surgery. Having done all the work herself, she still made honor roll with all A's and 1 B. She was so frustrated after all the hard work, she missed distinquished honor roll by 1%!




Of course your daughter will heal, but return to school (even part time) at 3 weeks is unlikely, and a "rest in the van at lunch"?? A 1-2 hour nap is more like it.

My daughter was given permission to go to the nurse's office anytime she wanted to do so and never did. She never called me to pick her up early.

Is Sharon being unrealistic? Maybe, maybe not. Trust your instincts. You know your child best. It doesn't hurt to set the bar very high, but please remember, your daughter's health comes first.

Mary Lou

Pooka1
03-19-2008, 04:50 PM
Is Sharon being unrealistic? Maybe, maybe not. Trust your instincts. You know your child best. It doesn't hurt to set the bar very high, but please remember, your daughter's health comes first.

In re whether or not I'm being unrealistic, don't most people use what the surgeon tells them as a guideline? I typed verbatim what was in the material about this issue.

I am still at a loss as to why the surgeon would say what he said and give me the printed material that he did if it isn't in fact the case that usually his patients return to school 3 weeks after surgery (as advertised).

Now that is no guarantee that my daughter will be the "usual" patient but I can't see taking issue with his statement that his usual patient returns to school three weeks after surgery.

Per what I was told, and what the material said, I am setting the bar at the AVERAGE height as far as I can tell. She may be back sooner or later than the average of course and we will adjust accordingly. But there is no evidence I have set the bar particularly high.

sharon

txmarinemom
03-19-2008, 05:00 PM
I am still at a loss as to why the surgeon would say what he said and give me the printed material that he did if it isn't in fact the case that usually his patients return to school 3 weeks after surgery (as advertised).

Sharon,

Out of curiousity (you haven't mentioned), is he a scoli - or even a spinal - ortho?

mariaf
03-19-2008, 05:13 PM
Sharon,

I'm glad you understood where my sentiments were coming from.

With regard to what is told to you by the surgeon, let me share this - We consulted with two surgeons re: VBS (Dr. Betz on the initial visit; and Dr. D'andrea, his colleague who ended up performing the surgery, subsequent to that).

They were two extremes. Dr. Betz said 2-3 days in the hospital for VBS. Dr. D'Andrea said some kids are there for 8 days (if there are minor complications). D'Andrea then explained that she always uses "worst case scenario" and see the glass half empty, whereas she said, Dr. Betz tends to see things half full. (I found in my further dealings with the two of them that this was true, and I always kept it in mind).

My point is, what a surgeon says may not be EXACTLY what your child experiences.

Again, good luck.

Pooka1
03-19-2008, 06:24 PM
(snip example of two surgeons giving wildly different length of hospital stays to the same patient)

My point is, what a surgeon says may not be EXACTLY what your child experiences.

Again, good luck.

Maria,

I realize what the surgeon said to me in person and what the material said may not be exactly what will happen with S. That has never been an issue.

The question on the table as I understand it (and I'm not sure I do!) is what is this surgeon's experience with kids with this curve in this situation and is he accurately representing that to patients?

It seems to me either 3 weeks is his ACTUAL "usual" or it isn't. If it isn't then I am at a loss to explain it. It seems more rational to think it actually is his "usual" patient experience. But we will see.

It further seems to me that certain folks do NOT believe this is his "usual" patient experience and think he is deliberately misrepresenting the "best case" as his "usual" case. I guess they get that from comparison to their experience but I think what we have to compare is other examples that are as close to my daughter's as possible, not random cases out there.

Thanks again.

sharon

mariaf
03-19-2008, 06:35 PM
It further seems to me that certain folks do NOT believe this is his "usual" patient experience and think he is deliberately misrepresenting the "best case" as his "usual" case.

Hi Sharon,

I"m not sure that anyone thinks he is deliberately misrepresenting things - I certainly doubt that he would do that deliberately. That's why I used the Dr. Betz comparison. I think when Dr. Betz said to me regarding VBS "2-3 days" in the hospital, he meant if everything goes perfectly. To him that may be the norm because he does not expect, going in, that say, the chest tube might have to remain a bit longer, etc. And there are a LOT of kids who do go home in 3 days - but the average stay (this is a guess) might be 4 days for example.

I think what people are trying to say (again I could be wrong) is that from all the parents we have heard from (and some of us, including myself, have been talking to scoli parents for several years) getting "almost back to normal" in three weeks after fusion just doesn't seem to be average. Could it happen? Of course! I think we just wanted to make sure you weren't setting yourself or your daughter up for disappointment.

What's that saying? Prepare for the worst but hope for the best!

txmarinemom
03-19-2008, 06:45 PM
It further seems to me that certain folks do NOT believe this is his "usual" patient experience and think he is deliberately misrepresenting the "best case" as his "usual" case. I guess they get that from comparison to their experience but I think what we have to compare is other examples that are as close to my daughter's as possible, not random cases out there.


Sharon, I have said nothing different than others, so enough with the "certain folks".

I never said he was "deliberately misrepresenting" anything, and I find it very strange you'd say so.

If he is a scoli surgeon he would certainly have "usual" cases, but you have never said he is one. That unanswered question ("Is he?") is the ONLY thing above that wasn't also written by someone else.

And (although I'm sure you don't see it that way) your limited exposure to - and understandably miniscule knowledge of what constitutes - typical, atypical, or "random cases" is exactly *why* people here (including myself) have willingly spent their time attempting to answer your questions.

Best of luck to you.

Regards,
Pam

nate03
03-19-2008, 06:49 PM
Hi Sharon,
Perhaps you could talk to some of his other patients who he thinks are similar to your daughter's situation? For me, this was VERY helpful in preparing for my son's surgery.

I think most doctors don't really know the details of what goes on once patients get home - they get a brief rundown at the 1 month or 6 week follow-up, but most of that time is spent with the dr answering patients questions - not discussing in detail their recovery so far. Just an idea.............
And we all hope your daughter has a very fast recovery - even quicker than "average"!!
-Cara

LorDon
03-19-2008, 06:50 PM
Hi ladies,
Just thought I'd throw in my 2 cents.....Maria, Pam and Mary Lou have made some great points. My son was in no position to return to school 3 weeks after his surgery. Having just gone through this surgery with my son 3 months ago, it's still quite fresh in my mind. Once I saw what he went through, returning to school was the LAST thing on my mind. I wasn't sending him back until he was 100%. His health was my ONLY priority. This surgery is HUGE and and if your surgeon has suggested that 3 weeks is the average for returning to school, I find that to be overly optimistic. Chris started his tutors at 3 weeks and he was wiped out after a 2 hour session. Certainly some kids might be ready to return at 3 weeks, but the average seems to be 4-6 weeks. I contacted his school prior to the surgery to set up homebound instruction which he was entitled to after being out for 5 consecutive days. He was entitled to 10 hours/week - 2 hours per subject. Quite frankly, he did better with the one on one instruction because he couldn't fall asleep like he would normally do when he was in school. ;) I also found that Chris' teachers were very lenient with him and let some things slide. It also doesn't hurt to show them the scar. :D

Sharon, if I remember correctly, your daughter is middle school age. Something else to consider is getting permission for her to leave class 5 minutes early to avoid the crowded halls and getting an extra set of books for home. Also, you want to make sure that she is accomodated during fire drills and other evacuation drills.


All the best to you. I will keep your family in my prayers.

Pooka1
03-19-2008, 06:56 PM
Hi Sharon,

I"m not sure that anyone thinks he is deliberately misrepresenting things - I certainly doubt that he would do that deliberately. That's why I used the Dr. Betz comparison. I think when Dr. Betz said to me regarding VBS "2-3 days" in the hospital, he meant if everything goes perfectly. To him that may be the norm because he does not expect, going in, that say, the chest tube might have to remain a bit longer, etc. And there are a LOT of kids who do go home in 3 days - but the average stay (this is a guess) might be 4 days for example.

Ah okay but do you see what you are saying? You are saying you think he in fact MEANS "best case" when he says 2-3 days. And you are probably right.

But I can only point to the wording of the material and what the surgeon told me. I think we can rule out that referring to a "best case" when he says, "Usually, your child is able to go back to school 3 weeks after the surgery." Do you think he would say that if he really meant "best case?" It sounds to me like he is reporting on the average outcome of his actual patients. We will see. And I will certainly ask him when I see him to clear this matter up.


I think what people are trying to say (again I could be wrong) is that from all the parents we have heard from (and some of us, including myself, have been talking to scoli parents for several years) getting "almost back to normal" in three weeks after fusion just doesn't seem to be average. Could it happen? Of course! I think we just wanted to make sure you weren't setting yourself or your daughter up for disappointment.

What's that saying? Prepare for the worst but hope for the best!

See I don't equate "returning to school" with "almost back to normal" as you just did. I think I can help her at school (resting in the van at lunch, carrying her bag, etc.) so that she can comfortably return BEFORE being "almost back to normal." She is driven and I am going to make sure she doesn't overdo anything but she has certainly gone to school without being "almost back to normal before." This is a kid who was one of only ~10 kids out of ~450 to get all A's last year for her grade. She read the 3 weeks as an average and said she hoped she would be back at 2.5 weeks. Now I don't read it as an average but I do believe that the "usual" patient is back between 3-4 weeks. Call me crazy. :)

sharon

mariaf
03-19-2008, 07:04 PM
See I don't equate "returning to school" with "almost back to normal" as you just did. I think I can help her at school (resting in the van at lunch, carrying her bag, etc.) so that she can comfortably return BEFORE being "almost back to normal." She is driven and I am going to make sure she doesn't overdo anything but she has certainly gone to school without being "almost back to normal before."
sharon

Sharon,

You are absolutely correct - I DID equate returning to school with being "almost back to normal". I did this because that's how I would feel if it were my kid - if they weren't at least ALMOST themselves, I would not want them sitting in school feeling poorly, etc.

That's just me. Also, the last thing I would want would be my kid catching a virus or something ON TOP of recovering from fusion.

I admit I tend to err on the side of caution when it comes to my child's health - even over school, sports, etc.

Just last week David was getting over being sick, he was recovered for the most part but still coughing and he got mad because I made him miss his basketball game - I know basketball isn't school but believe me, it wouldn't have mattered, his health would still be first and foremost. The rest, I feel, they can make up for or catch up on.

That being said - those are just MY feelings, for MY kids - I am not trying to inflict my beliefs on anyone else and again, I wish your daughter all the best and a quick recovery.

Pooka1
03-19-2008, 07:10 PM
(snip Chris' experience...) I contacted his school prior to the surgery to set up homebound instruction which he was entitled to after being out for 5 consecutive days. He was entitled to 10 hours/week - 2 hours per subject.

Okay here I think the tutoring kicks in at a different point here. The orthopod said the county doesn't authorize tutoring unless the child is out 6 weeks. He said she would likely be out 4 weeks and wouldn't qualify. And my understanding of the printed material from the surgeon is that the child must be out 4 weeks to qualify and that since most kids are back by 3-4 weeks, they will not qualify for a tutor. (I typed it verbatim upthread... see what you think it means. Maybe I have misinterpreted it.)


Quite frankly, he did better with the one on one instruction because he couldn't fall asleep like he would normally do when he was in school. ;) I also found that Chris' teachers were very lenient with him and let some things slide. It also doesn't hurt to show them the scar. :D

But see she doesn't want to miss work and I don't want her to miss work. I don't want her excused... she needs to learn the material. And I think she can do this but we will see. I'm not going to let her push herself too much on this.


Sharon, if I remember correctly, your daughter is middle school age. Something else to consider is getting permission for her to leave class 5 minutes early to avoid the crowded halls and getting an extra set of books for home. Also, you want to make sure that she is accommodated during fire drills and other evacuation drills.


All the best to you. I will keep your family in my prayers.

Thanks for that advice. I'll remember to ask the school to make those accommodations. Her twin is in the same classes (except elective) so maybe they can just leave her set at home and use her sister's set at school.

Best regards,
sharon

Pooka1
03-19-2008, 07:14 PM
(snip)
That being said - those are just MY feelings, for MY kids - I am not trying to inflict my beliefs on anyone else and again, I wish your daughter all the best and a quick recovery.

Maria, I think I would feel that way if my kid was in grade school. But she is in seventh grade in advanced classes. They move quickly and I think she can catch up if I help her to physically get through the day.

sharon

LorDon
03-19-2008, 07:26 PM
I'm with you Maria. I, too, err on the side of caution which is why Chris didn't return to school until 7 weeks. He did 1/2 days for 2 weeks and returned full time at 9 weeks. Could he have returned sooner? Sure - but why would I rush him back? They need time to heal. This surgery shouldn't be underestimated. I can't stress that enough. Even though they START to feel better, their body is still healing and they shouldn't be overdoing anything.

I was also concerned that Chris would catch a virus because it was the middle of the winter. If he coughed or sneezed it was painful. I can't even imagine how horrible it would be if he caught a stomach virus and was vomiting.

txmarinemom
03-19-2008, 07:28 PM
This is a kid who was one of only ~10 kids out of ~450 to get all A's last year for her grade.

That's great, but how is it relevant to fusion surgery?

mariaf
03-19-2008, 07:48 PM
Maria, I think I would feel that way if my kid was in grade school. But she is in seventh grade in advanced classes. They move quickly and I think she can catch up if I help her to physically get through the day.

sharon

I don't think it has that much to do with age - at least not in my mind - my other two kids are in High School and College. And just yesterday I told my daughter to stay home because she had an awful headcold, cough, etc. So, again, being perhaps the overly protective mom, it would not make a difference to ME if my kid was in 4th grade like David or in 11th grade like his sister - I would still worry about health over schoolwork. Maybe I hear my mother's voice from when I was a kid saying "health comes first"!

LorDon
03-19-2008, 08:06 PM
Sharon,
6 weeks sounds like an awful long time to be out before being entitled to homebound instruction. You might want to check with your district about that.

I'm just curious whether you have asked your surgeon how many spinal fusions he has done. That was a big concern of mine when we were deciding on Chris' surgeon. He has been doing spinal fusions for 16 years and does 2-3 per week. I see that you are located in NC, may I ask who is performing her surgery?

Aussiemum
03-19-2008, 08:09 PM
I'm in a foul mood today and a gun in my hand would be a dangerous thing! I shouldn't be posting feeling like this because I may say something offensive!
Well here goes.....

What the hell!!!!! Why all the fuss about what the doctor or the literature says about when children "normally" return to school!!!! It's your child and SHE'LL be the one to tell you when she's feeling up to it! Unless of course your trying to organise time off work to be at home with your child then I can understand why you really need to get an indication of time off - I'm sure many people DO find themselves in this position if they're a working parent, so I sympathise if that's the case!

For me, yes, Elysia has recoved VERY quickly BUT...... there is no way she is returning to school until we see our Surgeon at the 6 week (which actually works out to 6 weeks and 6 days) appointment. We didn't go through all of this to go back to school too early and have some bozo kid come racing around a corner and knock her over and damage all the surgeon's hardwork! So precaution is my motto and I don't care what anyone says - I'm wrapping my child in cotton wool until I know this fusion is strong and ready to face the world! Child is ready but SPINE is not.

As for school work - she's been keeping up with the Maths work - she's probably going to go back to school and blitz the exams with all the one on one she's been receiving from me. She's only in her 2nd year of high, so there's no pressing exams around the corner for another 3 years for us! I think she'll manage to catch up on the 6 weeks that she's missed. Plus if you talk to anyone who home schools their child, you'll find they don't need 6 hours of lessons a day like a normal school day. Because it's one on one - 15 minutes equals a full school lesson because it's just you and them not 25 other kids.

Well that's my five cents worth - hope I haven't offended but Sharon I tore myself to shreds before this surgery looking at what was "normal" - nothing is "normal" when it comes to Scoliosis - the variables are many.

Hope everything works out perfectly for you all in the end.

Regards
Del

mariaf
03-19-2008, 08:20 PM
We didn't go through all of this to go back to school too early and have some bozo kid come racing around a corner and knock her over and damage all the surgeon's hardwork! So precaution is my motto and I don't care what anyone says - I'm wrapping my child in cotton wool until I know this fusion is strong and ready to face the world! Child is ready but SPINE is not.

Great post, Del,

I am glad I'm not the only one who stays up at night and worries about things like this - LOL!

I also think what you said about one-on-one help with schoolwork being so effective makes perfect sense.

Whether it be a mom who home-schools or a tutor - it's a big difference from the classroom.

I know it is different, but my daughter really struggled with math her first year of HS. Seems that her grade school did not prepare her properly. She got some tutoring and caught up in no time and I can tell you it was the one-on-one aspect that made the difference - in just an hour or two a week!

Pooka1
03-19-2008, 08:20 PM
Sharon,
6 weeks sounds like an awful long time to be out before being entitled to homebound instruction. You might want to check with your district about that.

I'm just curious whether you have asked your surgeon how many spinal fusions he has done. That was a big concern of mine when we were deciding on Chris' surgeon. He has been doing spinal fusions for 16 years and does 2-3 per week. I see that you are located in NC, may I ask who is performing her surgery?

I asked him how many spinal fusions for AIS he as done. He said hundreds.

He also has some experience with the minimally invasive technique and said he didn't think it was ready yet in terms of instrumentation.

Are you familiar with surgeons in NC?

sharon

Pooka1
03-19-2008, 08:27 PM
(snip some straight talk!)
Well that's my five cents worth - hope I haven't offended but Sharon I tore myself to shreds before this surgery looking at what was "normal" - nothing is "normal" when it comes to Scoliosis - the variables are many.

Hope everything works out perfectly for you all in the end.

Regards
Del

Thanks Del for that! I know S may not be "normal" in terms of recovery time. That's why all I can go on at the moment is the surgeon's representation of his other patients, especially those whose cases most resemble my daughter's case. For now. We'll see if he is correct.

Best regards,
sharon

txmarinemom
03-19-2008, 08:28 PM
I asked him how many spinal fusions for AIS he as done. He said hundreds.

He also has some experience with the minimally invasive technique and said he didn't think it was ready yet in terms of instrumentation.

Are you familiar with surgeons in NC?

sharon

Wow ... hundreds!

That's pretty amazing since the two main surgeons in Houston probably don't do that many at Methodist and Shriners each!

I'm sure you spoke with several of his previous patients: Their fusions he performed went well?

Snoopy
03-19-2008, 08:37 PM
Since Jamie is one of the few kids who returned to school so early, I think I better explain her situation a little better. Jamie was 13 y.o. and in 8th grade when she had her surgery done. For us, timing was everything. By that I mean we wanted the progression to stop but also we couldn't imagine having this surgery done once she started High School.

We were lucky in the way the school day was set up. Every other day, they had their core classs in the morning and the next day, they are in the afternoon. This meant that every other day Jamie didn't even get out of bed before 9 or 10 a.m.! Jamie has always taken advanced classes but we had to make some sacrifices during 8th grade. One thing we dropped was Spanish. Who needs Spanish? (No offense!) She never started taking Spanish until her Sophomore year and hasn't suffered at all.

I spent a lot of time talking to the school before we even had a surgery date for Jamie and I'm glad I did. I had everything in place from a set of books in the classroom, a set of books at home, allowing her to leave class early to avoid crowds, to having her sent to the office before a fire drill. I was VERY cautious.

I'll admit that Jamie wasn't totally caught up with her work when she returned to school but she was able to catch up very quickly. For us, it was more Jamie wanting to get back to school than it was for me to want her to go back just to stay caught up.

Jamie is a very driven young lady and always has been. She also has a VERY high tolerance for pain. During her 6 day hospital stay, the highest number she ever gave for her pain was a 3 or 4. Because of her high tolerance for pain Jamie was off ALL prescription pain meds within 2 weeks or so post-op. Do I recommend that? No. Was I comfortable with Jamie being off pain meds in such a short period of time, yes. But I've learned that most kids need the pain meds and recovery time for a longer period of time. She took meds when she needed them. I made her take Tylenol every day before school just as a precaution.

I hope I made our situation clear to everyone. Jamie is the exception from the time she came off pain meds and returned to school. Every child is different and will recovery differently. Also, I think the length of fusion and the number of hours in the O.R. have a lot to do with how some kids recover (although it doesn't apply to Jamie as she has a long fusion and was in the O.R. for a really loooong time).

Mary Lou

Pooka1
03-19-2008, 08:41 PM
Since Jamie is one of the few kids who returned to school so early, I think I better explain her situation a little better. Jamie was 13 y.o. and in 8th grade when she had her surgery done. For us, timing was everything. By that I mean we wanted the progression to stop but also we couldn't imagine having this surgery done once she started High School.
(snip)


Mary Lou,

I think I missed your mention... how long was she out of school?

sharon

nate03
03-19-2008, 08:57 PM
OK, So, clearly there are some serious Red Flags raised by the info you are posting. I hope you can see that the people questioning "you" are looking out for you..............They have been through this same surgery & none of their experiences are meshing with the info you are getting - obviously this is concerning to everyone. It is not a second guess on you - but in light of all this I really hope you would consider getting a second opinion from another dr not connected to the one you are currently seeing............
It can't hurt - and hopefully you will be able to go into your daughter's surgery completely confident that she is getting the best care possible.
-Cara

Pooka1
03-19-2008, 09:04 PM
OK, So, clearly there are some serious Red Flags raised by the info you are posting. I hope you can see that the people questioning "you" are looking out for you..............They have been through this same surgery & none of their experiences are meshing with the info you are getting - obviously this is concerning to everyone. It is not a second guess on you - but in light of all this I really hope you would consider getting a second opinion from another dr not connected to the one you are currently seeing............
It can't hurt - and hopefully you will be able to go into your daughter's surgery completely confident that she is getting the best care possible.
-Cara

I explained why this surgeon is the right guy in an earlier thread. What specifically about that is a "red flag?"

sharon

txmarinemom
03-19-2008, 09:29 PM
I explained why this surgeon is the right guy in an earlier thread. What specifically about that is a "red flag?"

sharon

Sharon, read back over what people have said. Nothing matches with much of anything the people who have posted have LIVED.

Cara's right ... people are trying to look out for you and your daughter's interests, and I'm not sure why you seem to have blinders on to everything that's pointed out.

You post things like "he does HUNDREDS of surgeries a year", and that's a MAJOR red flag.

You answer questions with questions, and you post instructions no one's ever seen. The kind of instructions that mark an inexperienced/underexperienced facility/surgeon.

You've never named this anonymous surgeon who does hundreds of surgeries a year. He must be quite famous; he's incredibly prolific.

I asked a simple question whether he was a scoli specialist or spinal ortho - and you avoided an answer (and with someone else, if I recall).

Please, please, please tell me he isn't a *regular* ortho. The stuff you are being told smacks of someone who does not do many spinal fusions (much less HUNDREDS) a year.

sccrm08
03-19-2008, 10:13 PM
I think I missed something, I read Pooka1 post as saying the Dr. has done 100s of these surgerys, not that he does 100s a year, correct me if I'm wrong.

flowerpower
03-19-2008, 10:29 PM
I read it the same way you did Patty.

txmarinemom
03-19-2008, 10:31 PM
I think I missed something, I read Pooka1 post as saying the Dr. has done 100s of these surgerys, not that he does 100s a year, correct me if I'm wrong.

You are correct, Patty ... my bad!

The other concerns are, well ... still concerns.

Carmell
03-19-2008, 11:51 PM
Sharon,

Please know (like the others have said) that the posts are meant to help you plan and prepare for this HUGE surgery. Scoliosis surgery is equivalent to your body being hit by a MACK truck. The manipulation and "construction" that goes on during scoliosis surgery (not a gentle surgery) is huge. Her body needs time to recover. I certainly hope (and pray) she is one who can go back to school at 3 weeks without looking back. Here are my thoughts...

1. PLEASE contact the school and/or district about homebound policies. The orthopods office is not the place to dictate policy, I'm sure. His office may be correct, but this is something you need to look into personally.

2. On a similar note, please talk with her school and plan carefully for her return. Mary Lou did a great job to plan, discuss, and plan some more for her daughter's return. This can only help her returning to school. Please talk to the administration (again, if you have already) and put a plan into place. Would you consider a 504 plan if (Heaven forbid) her recovery isn't as rapid as you plan?

3. Why does she have to have surgery immediately? What is the ortho's reasoning? Scoliosis is rarely an emergency situation. Is it because his schedule is booked already in June (many scoliosis docs have June/July scheduled up to a year in advance, for this very school issue). Have you had at least one other opinion on the recommended surgery for her? This is a topic for a whole other thread, but as young as she is, I'm worried about her body not being close to skeletal maturity and her having fusion surgery. What are the risks of future complications? Next thread, possibly...

4. If I were in middle school and my mom came to school with me to carry my books, I may be highly embarrassed at that age. Again, the school should be making accommodations for this very thing. Like the others mentioned, arranging for a second set of books to be at home is a necessity. Also, arranging for her to have a hall pass so she can get out a stretch for a bit, or more importantly, leave class 5 mins early so she misses the "salmon run" between classes. My concerns would be someone hitting her with a backpack or pushing her down because she won't be fast enough to keep up with the masses. She may also need that hall pass to use the restroom without permission until she's recovered enough.

5. Remember during the post-op period, and until the doc says her fusion is solid, no BLTs - no bending, no lifting, no twisting. This is very important, especially when she DOES feel better and wants to do more active things than she should. If she has even one area of failed fusion, it can be disastrous in the future.

I am offering comments based on my experience as a parent with a child who has had multiple scoliosis surgeries (anterior/posterior fusion as an infant, expandable rod placement at age 6yrs old, repeated expansion surgeries since, 2 tethered cord release surgeries, etc.). Through all of that, Braydon is a healthy pre-teen (teenager in May - YIKES!) who lives life to the fullest. He attended middle school successfully last year (out this year for other reasons) and has many friends who look out for him (he doesn't like the group of girls who "mother" him). Life is great. Our children's health and well-being is most important. I'm sure having a twin will help encourage her to progress in her recovery. Hopefully it won't set her back. My sincerest best wishes to you. If Dr. Hey is your surgeon, he is good at what he does, but I've heard from a couple of other parents that he is lax on details. Surgeons are just that - surgeons. They do their best work in the operating room. It's the parent's job to make sure the post-op details are worked out in their child's best interest. Sad, but true. Good luck.

Snoopy
03-20-2008, 05:40 AM
Mary Lou,

I think I missed your mention... how long was she out of school?

sharon

Jamie returned to school 1/2 days when she was about 4 weeks post-op. What I forgot to mention last night when I explained that she only went half days, was that she only attended her core classes....English, History, Math and Science. At about 6 weeks she returned full-time. She wasn't allowed to take gym until the following school year so she was given permission to go to the library (she didn't stay in the gym for fear that she'd be hit by a ball or another child) and she used that time to get caught up on her work.

Hi Carmell! You were around this forum when I was planning for Jamie's surgery. I'm sure you remember how CRAZED I was about making sure everything was done well in advance and to my satisfaction. I'm sure I drove the school crazy, (and some forum members :D ) with my questions but everything worked perfectly for Jamie and I'm so glad I planned, planned, and planned some more!


Mary Lou

Pooka1
03-20-2008, 06:08 AM
You post things like "he does HUNDREDS of surgeries a year", and that's a MAJOR red flag.



LIAR.

What the hell is the matter with you?

Pooka1
03-20-2008, 06:21 AM
3. Why does she have to have surgery immediately? What is the ortho's reasoning? Scoliosis is rarely an emergency situation. Is it because his schedule is booked already in June (many scoliosis docs have June/July scheduled up to a year in advance, for this very school issue).

I assume it is because her curve moved so quickly. She was measured at ~48* in Feb and I'm guessing it is already much higher. She is more and more misshapen.

If it is because he is already booked for June/July I am going to be beyond mad.

There are some cases that can wait maybe. But as I wrote in an earlier thread, S is now getting daily back pain near where her shoulder blade is protruding. She didn't have constant pain until several days ago. Her rotation appears worse and worse. I'm guessing if we wait, the correction will be harder and she won't get as good a result but I will ask.

I've saved the rest of your advice into a file that I will use. Thanks for typing it out.

sharon

Susie*Bee
03-20-2008, 09:23 AM
From reading posts for awhile, this seems to be another area that doctors vary on their recommendations. Only a few weeks ago, it was Hailey/beach_chikie who said her doctor wanted her back at school at 3 weeks post-op. Here's the thread:

http://www.scoliosis.org/forum/showthread.php?t=6895

I think she ended up going half days for a week or two, and then full time. But I also think she said it was very tiring.

Pooka1-- I'll be praying for S on the 26th. Also-- my opinion (for what it's worth) -- after she returns to school, I think it would be more comfortable for her to rest lying down in the nurse's office than in the van-- but maybe your van is more comfortable than mine! Hugs.

mariaf
03-20-2008, 10:01 AM
OK, my two cents - I think what is adding to everyone's questioning of information the surgeon gave that is not what they have EXPERIENCED to be customary (either with their own surgery or that of their child), is the mystery surrounding WHO the surgeon is. Normally, that's the first bit of information folks post. Heck, it's often in the signature because it is a big part of the story.

Is there any particular reason, Sharon, that you don't wish to share his name with us?

And as someone said, no matter how good the first surgeon you consult with is, most parents I know (in fact almost ALL of them) get second, third and fourth opinions. That doesn't mean they didn't like the first doctor - they may very well end up choosing him or her - but it's THAT big of a surgery and THAT important to be with the right surgeon.

Good luck.

Pooka1
03-20-2008, 03:30 PM
From reading posts for awhile, this seems to be another area that doctors vary on their recommendations. Only a few weeks ago, it was Hailey/beach_chikie who said her doctor wanted her back at school at 3 weeks post-op. Here's the thread:

http://www.scoliosis.org/forum/showthread.php?t=6895

I think she ended up going half days for a week or two, and then full time. But I also think she said it was very tiring.

Pooka1-- I'll be praying for S on the 26th. Also-- my opinion (for what it's worth) -- after she returns to school, I think it would be more comfortable for her to rest lying down in the nurse's office than in the van-- but maybe your van is more comfortable than mine! Hugs.

Thanks, Susie.

Not only that child but also Swimbum (sp?) recovered quickly. And the child on spinekids who left the hospital after 3 days.

I don't understand the need by some to deny these testimonials. Maybe they are all lying. :rolleyes:

These are all consistent with what the surgeon is telling us.

I'm not saying I know my child will recover quicker than average. I'm not counting on that. I'm just saying it isn't obvious that she won't recover on the same schedule as these other children.

sharon

Pooka1
03-20-2008, 03:33 PM
Is there any particular reason, Sharon, that you don't wish to share his name with us?



Because folks here will pretend to know the surgeon and make stuff up just like they make up "direct" quotes.

sharon

mariaf
03-20-2008, 04:10 PM
Because folks here will pretend to know the surgeon and make stuff up just like they make up "direct" quotes.

sharon

What would they make up? I am truly confused by that statement. Reason being, I have been on this board a couple of years and I have never witnessed that happening.

In fact, most of the time, when someone talks about one surgeon or another, they have had personal experience with him or her.

Are you saying you think someone will pretend that they used him when they didn't?

If so, again, I have NEVER seen that and I've been around here a while.

For instance, Dr. D'Andrea did David's surgery. Now we see Dr. Betz. What could anyone say about them that would upset me???

I'm sorry I just don't understand your fear of divulging his name - unless there is something I am not privy to.

mariaf
03-20-2008, 04:15 PM
I don't understand the need by some to deny these testimonials. Maybe they are all lying. :rolleyes:

Sharon,

If that is true, then aren't you denying "testimonials" by parents who said it took their kids 6 or 7 weeks, or more, to return to school full time?

ElleBelleCurvz
03-20-2008, 04:30 PM
Hey Pooka, if your concerned about your surgeon's experience, you could always google the doctor, i did this for fun for my doctor and it says he does about 140/yr and hes horridly busy, so i do find hundreds (if you mean a year) a lot...but i would suggest you do a bit of researching thru the net to see if his claims are valid...

Pooka1
03-20-2008, 06:08 PM
Hey Pooka, if your concerned about your surgeon's experience, you could always google the doctor, i did this for fun for my doctor and it says he does about 140/yr and hes horridly busy, so i do find hundreds (if you mean a year) a lot...but i would suggest you do a bit of researching thru the net to see if his claims are valid...

I'm not concerned. I researched the surgeon. There is nobody better to do this surgery within some large radius.

Other folks appear to be concerned although they should be working on their quoting skills instead.

sharon

Pooka1
03-20-2008, 06:10 PM
Sharon,

If that is true, then aren't you denying "testimonials" by parents who said it took their kids 6 or 7 weeks, or more, to return to school full time?

No. I am saying there is no reason to think those recovery trajectories are relevant to my child's situation as opposed to the other trajectories.

sharon

Pooka1
03-20-2008, 06:13 PM
What would they make up? I am truly confused by that statement. Reason being, I have been on this board a couple of years and I have never witnessed that happening.

In fact, most of the time, when someone talks about one surgeon or another, they have had personal experience with him or her.

Are you saying you think someone will pretend that they used him when they didn't?

If so, again, I have NEVER seen that and I've been around here a while.

For instance, Dr. D'Andrea did David's surgery. Now we see Dr. Betz. What could anyone say about them that would upset me???

I'm sorry I just don't understand your fear of divulging his name - unless there is something I am not privy to.

There is nothing you aren't privy to since I sent you the name. That surgeon is as advertised.

But when you have folks pretending to direct quote others (complete with quote marks), anything is possible. They are reckless.

This is why I like the newsgroup format better... you can killfile dishonest folks who deliberately misquote, lie, etc..

sharon

mariaf
03-20-2008, 06:26 PM
Sharon,

I think you may have me confused with someone else. You didn't send me his name.

If you did I would not have asked who he was. I still don't know and at this point it doesn't matter to me - I just think that when something is kept secret it makes people all the more curious. That just happens to be human nature.

(and you never told me what makes you think other forum members would fabricate stuff about him if they knew who he was. can you point out another instance on this forum where that happened? I really would be interested).

Pooka1
03-20-2008, 06:42 PM
Sharon,

I think you may have me confused with someone else. You didn't send me his name.

Yes you're right. I was mistaken. I just checked my outbox and see I sent it to someone else.


If you did I would not have asked who he was. I still don't know and at this point it doesn't matter to me - I just think that when something is kept secret it makes people all the more curious. That just happens to be human nature.

(and you never told me what makes you think other forum members would fabricate stuff about him if they knew who he was. can you point out another instance on this forum where that happened? I really would be interested).

I cite the behavior of a respondent in this thread as being reckless.

sharon

Aussiemum
03-20-2008, 06:44 PM
The problem with posting on forums, sending emails, letters, etc - is that quite often things can be taken the wrong way because we are only read words and don't have the associated tones with a face to face conversation.

Sometimes there's lots to read on the forums and you can misread information plus VERY easy to also get confused with what you've read in a previous thread. I've done that - and felt very embarrassed or called someone the wrong name.

Why do people come on here?? To get clarification of the information that they are being told. To get information from others of their experiences. To compare notes and get advice.

Post-op surgery members - are so grateful for all the help that they received for themselves or their child prior to the surgery that like myself they want to see if they can't repay that debt by "passing it forward" the wonderful advice and friendship that has been given.

We don't need to argue over an honest mistake, forgive and forget and move on. Too much hate and anger in the world already and we're all big enough to move on.

Let's stick to helping each other out with advice and friendship both pre and post surgery. Have a laugh along the way to relieve the ENORMOUS stress ball that we all go through prior to this big event either for ourselves or our precious kids!

Big group hug now!
Aunty Del
xx

(See I'm in a better mood today!)

Susie*Bee
03-20-2008, 06:56 PM
You get the award for trying to smooth things over and lighten things up a bit... "Aunty Del" and her big group hug. ;) That made me chuckle for awhile. Thanks!

By the way, those were impressive before and after pics of Elysia's back.

Pooka1
04-02-2008, 12:12 AM
5. Usually the child is able to go back to school 3 weeks after the surgery(!). An absence of 4 weeks is the usual criterion for obtaining homebound school instruction and most patients are back at school by that time. This is in keeping with what the surgeon told us... 3 weeks... but I didn't realize he was counting from the surgery date and not the date when she comes home!

From a page on the Scottish Rite web site... this group claims the following:

http://www.tsrhc.org/default.asp?contentID=31

"Texas Scottish Rite Hospital for Children is a world leader in the treatment of pediatric orthopedic conditions."

http://www.tsrhc.org/default.asp?contentID=102

"Scoliosis surgery usually takes several hours. Most children go home within a week of surgery and donít need postoperative bracing or casting. They can usually return to school three weeks after the surgery and should be able to resume all regular activities within six months."

It's too early to tell if Savannah will return at about three weeks. I'm very curious at this point what will happen after all the back and forth on this topic. Most of everything else from our surgeon has been as advertised (or better as appears to be the case of the de-rotation) so I'm hoping this will be also.

sharon

KJUNGRL2
04-02-2008, 12:16 PM
The problem with posting on forums, sending emails, letters, etc - is that quite often things can be taken the wrong way because we are only read words and don't have the associated tones with a face to face conversation.

Sometimes there's lots to read on the forums and you can misread information plus VERY easy to also get confused with what you've read in a previous thread. I've done that - and felt very embarrassed or called someone the wrong name.

Why do people come on here?? To get clarification of the information that they are being told. To get information from others of their experiences. To compare notes and get advice.

Post-op surgery members - are so grateful for all the help that they received for themselves or their child prior to the surgery that like myself they want to see if they can't repay that debt by "passing it forward" the wonderful advice and friendship that has been given.

We don't need to argue over an honest mistake, forgive and forget and move on. Too much hate and anger in the world already and we're all big enough to move on.

Let's stick to helping each other out with advice and friendship both pre and post surgery. Have a laugh along the way to relieve the ENORMOUS stress ball that we all go through prior to this big event either for ourselves or our precious kids!

Big group hug now!
Aunty Del
xx

(See I'm in a better mood today!)



I know I am new here! But I totaally agree. Let's not argue the point here. Different Dr's have different opinions. Every person is different. ;)

Pooka1
04-02-2008, 12:37 PM
I know I am new here! But I totally agree. Let's not argue the point here. Different Dr's have different opinions. Every person is different. ;)

Yes they do. It wouldn't make much sense to suggest otherwise.

I think it would help if there was some resource about the ranges of these things done by different doctors. Then folks would have a better sense of the variation out there which would hopefully head off some specious conclusions (or at least many posts in this thread!).

sharon

Pooka1
04-03-2008, 05:24 PM
The wacky bunch at the Scoliosis Research Society state the following on their web site...

http://www.srs.org/patients/adolescent/idiopathic/treatment.php

The patient can perform regular daily activities and generally returns to school in 3-4 weeks.

So in addition to our surgeon, we see the good folks at both Scottish Rite and at SRS appear to think kids "usually" and "generally" return to school in 3-4 weeks. Additionally, our orthopod, who did some training at Scottish rite and is a member of the SRS told us a similar time frame. Despite not being a member of the SRS, our surgeon also agrees. He was recommended by our orthopod and indeed, he appears on recent list of doctors who other doctors would go to themselves. That is in keeping with fact that our surgeon is treating our orthopod's daughter for scoliosis.

So other than some testimonials here, it all appears to be consistent with the 3-4 week time frame. I don't understand the longer trajectories as posted on this site in light of all these claims to shorter trajectories by folks who do so many surgeries. It doesn't seem to be due to complications so I'm at a loss.

Yesterday, one week out, Savannah walked a mile and then sat for an hour at the computer. I'm guessing the key to a quick recovery might be walking (as opposed to sitting at the computer!). Or so it seems. We will see how things play out.

sharon

ca-native
04-03-2008, 05:58 PM
The wacky bunch at the Scoliosis Research Society state the following on their web site...

http://www.srs.org/patients/adolescent/idiopathic/treatment.php

The patient can perform regular daily activities and generally returns to school in 3-4 weeks.

So other than some testimonials here, it all appears to be consistent with the 3-4 week time frame. I don't understand the longer trajectories as posted on this site in light of all these claims to shorter trajectories by folks who do so many surgeries. It doesn't seem to be due to complications so I'm at a loss.
sharon

Hi Sharon,

Everyone is different. If you look in a thread I started a few weeks ago "How Long Before Back to Norm?" you'll see that the time frame varies greatly for when children return to school. Personally, I would much rather listen to other parents who have walked this path with their kids. In short, the 3-4 weeks stated above is only a guideline.

Please stop questioning why recovery takes longer for other people, because for many people it does. Kim could go back to school part-time today, two weeks post-op. Some kids take three months. It doesn't mean anything, it's just that everyone is different.

So to put it bluntly, it doesn't matter what the guideline says, it only matters how Savannah does and as her parent you ensure that she returns to school when it is right in her recovery.

Obviously you care greatly for your children and I have complete faith that you will guide her back to the appropriate activities when the time is right.

My best wishes to your family during this recovery period,

Aussiemum
04-03-2008, 06:29 PM
I couldn't agree more Elaine,

Elysia is back to school at 7 weeks post-op and I don't regret her time off one bit!!!!

WE had a lovely time off together, we home schooled, went to the librarys, the parks, one day went for a few hours to the children's musuem!

She is back at school this week, no pillow, no trolleys, carrying her bag on her back, travelling to sport by bus, (not participating, but helping out by scoring for the games.) She has returned with me being able to relax that everything is fine. Her back gives her no trouble, ribs a little bit and that's it.

She has a maths test today and I know she knows all the work and is going to blitz the exam and shock the socks off her teacher.

Her English teacher was amazed at the novel that she has almost completed writing about her story.

So for those that go back to school 2 weeks - Congratulations.
For those that go back to school 2 months - Congratulations.

Cheers
Del

Pooka1
04-03-2008, 08:40 PM
So to put it bluntly, it doesn't matter what the guideline says, it only matters how Savannah does and as her parent you ensure that she returns to school when it is right in her recovery.

Yes of course. This isn't actually/mostly about Savannah or the other kids at this point.

I now have an academic curiosity about the large differential between what the top-shelf scoliosis sites claim and reality as experienced on this forum. Is nobody else even a little curious about how different the two things are?

I can tell you if there was some large discrepancy like this on some topic in my research field, I would be trying to figure it out, if only out of curiosity.

Maybe the issue is too small a sample size here... that's my candidate hypothesis now.

I can say that if the 3-4 week time frame is off for Savannah, I'm going to be in the office asking what in particular about her case might have caused that. If there was something we could have done but failed to do, or something we did that we shouldn't have done, then I'll post it for other parents facing this. I certainly would appreciate knowing that before going into the recovery period.

Thanks for your thoughts on this.

Best regards,
sharon

Aussiemum
04-03-2008, 09:57 PM
Sigh............. am I going to regret posting this? I hope not!

Sharon, come join me in evening art classes (I start next week) and stop worrying about who, what when and why some kids recover faster than others.

I'm going to go out on a limb here and state up front, that I did not go to University or have any Tertiary education so I hope my ignorance doesn't show too much but.... it's pretty obvious why there is a variation.

Some kids (and adults) are fit before surgery, others aren't.
Some kids have minor complications - others don't.
Some kids have Posterior surgeries - others don't.
Some kids have Anterior surgeries - others don't.
Some kids have Thoracoplasty - others don't.
Some kids are fused T5-L1 - others T1 - L5.

This list can be 5 miles long - but my point that I'm trying to make is....
A surgeon can only give out a general guideline as to a recovery period.
How could they possibly tell a recovery period other than just give out a standard time frame. What they do provide accurately is a time frame for the Do's and Don'ts of the Lifting, bending etc and even then they all seem to have their own opinions on that as well.

Also - I don't know about your surgeons in the States... but I didn't see a questionnaire from ours when we went to see him as..

So? When did Elysia start back at school?
At what stage did Elysia come off meds?
At what stage was she sleeping in her own bed?
Etc etc

My personal observation from my experience and chatting with others is these surgeons don't really know much about the post-op care and what's involved. They are there to do a job and that's carry out the surgery. They presume there's no problems after your discharged from hospital if they don't get a phone call.

When we saw our second opinion Surgeon, he asked me "How's Elysia's health?" I replied - Great! He said "Health check over". Huh?? He explained, Mothers know their kids best and know when they're sick - I agree. We're the best to judge when the child is ready to go back to school.

Okay - I'm dismounting from my high horse now and gunna go pack my brushes and paints.

Cheers
Del

Pooka1
04-04-2008, 06:54 AM
Del,

Maybe I should just go to art class with you instead of getting sucked into esoteric side issues!

I can only assume all those surgeons averaged over all the case types (the ones you listed and the rest of the 5 miles) and came up with the 3-4 week range. Otherwise it would be so useless as to be equivalent to not stating any typical recovery time at all. And I must say, based on the testimonials here, it certainly appears completely useless at this point.

And I think you are right that surgeons aren't necessarily particularly careful in collecting data like time to return school. But then I wonder why those sites I posted all seem to converge on the same time range if not from patient data. Seems like more than a coincidence.

sharon

Susie*Bee
04-04-2008, 07:16 AM
Well said, Del. Same goes for adult recoveries. There are so many varying aspects of the surgeries coupled with the overall health of the patient, that no two recoveries are alike. Length of recovery can't be predicted accurately because of those differences. Quicker recovery doesn't make anyone a better person, just as the flip side doesn't mean they're problematic, lazy, out of shape or whatever. That's why it doesn't help to try to compare. We are all winners by getting through the surgery and plowing on with our lives.

Sharon-- I agree with you about heading off to art class! Don't get sucked in... and if it still really bothers you, you could always contact the site(s) and ask how they determined the time frame they give. My guess (yes, just a guess) is that is a best-case scenario based on an average simple (ha!-- maybe "straightforward" is a better word here) scoli surgery that probably isn't one of the lengthy ones--by that I mean fewer levels being fused, no other problems, etc. Again, our surgeries are like our fingerprints... there would be way too many t-factors to figure in to come up with any viable data-- in my opinion.

Since this isn't going anywhere, it's probably time to let this horse die... it just isn't that important. Taking care of your kids is, and the parents on this forum obviously care enough about their children to know what is best for them concerning returning to school, etc. Take care.

Pooka1
04-04-2008, 07:44 AM
Sharon-- I agree with you about heading off to art class! Don't get sucked in... and if it still really bothers you, you could always contact the site(s) and ask how they determined the time frame they give.

I take your point but I think at least some parents including me would have given much more thought to having surgery during the school year if all these surgeons said (admitted?) the typical/general/usual return to school was 6-7 weeks as opposed to 3-4 weeks. I personally would have pressed our surgeon FAR more (I didn't press him at all) about the risks of waiting until the end of the school year or at least to the last month of the school year (a delay of only 2 months in our case) if I had known the typical recovery period was DOUBLE that advertised let's say.

Call me crazy.

sharon

amandap
04-04-2008, 09:07 AM
I don't post much usually just read but I've got to say something.

I'm going on on a limb here because this subject is RIDICULOUSLY STUPID!!!

Sharon ~ let it go already no one child is exacly like another child before/during/or after surgery there will be several variables and that is it.

You are actually insulting those who don't do as well as your daughter ~ Yes I'm glad she is doing well and I hope that continues but ENOUGH already.

Yes you are CRAZY ~ otherwise you would have never brought it up again ~ You have absolutely nothing to prove to anyone. What you are doing is not at all the least bit constructive nor does it offer support to anyone now or anyone reading in the future.

For someone who is as educated as you say you are you really are dumb in not realizing how insensitive you are being to other parents/children reading who may not be doing as well.

FOR ALL OF OUR SAKES ~ LET IT GO!!

Respectfully, Amanda

No need to reply just let this post fade away ~ Thank you