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momw/scoli
03-21-2009, 02:53 AM
I was doing okay with our decision for my daughter to have surgery until my brother-in-law had to start saying things like once you have fusion you can never go back, if I were you I would take her to Mayo Clinic, her back will hurt when she is sitting in a chair where the hardware is, and last but not least T2 to T11 is a long fusion. He said all this in a family email. I replied we had two opinions from Scoliosis Research Society Doctors and they both recommended the same thing. She needs surgery. We could wait, but then she could possibly need a longer fusion if she waits too long.
My brother in law had a horrible car wreck in 1992 and had fusion done due to a car wreck. This was done in a small west Texas town without a spine specialist. I don't even know what vertebra were involved and why his hardware broke. It had nothing to do with scoliosis and now he's trying to give us advice? Isn't fusion due to a car wreck different than fusion for Scoliosis? I am so mad I could spit. What I need to hear from people right now is you are making the right decision and everything is going to be okay. Not one of my husband's family members have even called to see how Emily is doing since we made this decision. Sorry for the vent, but I can't sleep!
Becky
Mom to 14 year having surgery May 28, 51T and 43L compensatory curve.
She will be fused T2 to T11.

Pooka1
03-21-2009, 03:31 AM
Surgeons have the requisite training to advise you. Your brother-in-law clearly does not. Some more comments below...


I was doing okay with our decision for my daughter to have surgery until my brother-in-law had to start saying things like once you have fusion you can never go back,

My daughter would never choose to go back. She went into surgery curved and twisted with a curve that would not stop advancing. She came out with a 5* curve and almost no rotation, neither of which changed in the 8 months since the surgery. The important point though is she is NOT predisposed to any back problems over and above the general population despite having a block spine from T4 to L1 per her surgeon.

In other words, she was cured. Your daughter's fusion will end even higher; Based on my understanding, your daughter will also be back in the general population on future back issues after the fusion. In other words, she will be cured.

There is no parallel WHATSOEVER between a kid getting fusion surgery with pedicle screws NOW and someone having had back surgery for damage done in a car accident years ago. NONE.


if I were you I would take her to Mayo Clinic, her back will hurt when she is sitting in a chair where the hardware is,

This sounds like what he experienced and is irrelevant to your daughter. My daughter is pain free and has no issues like that as far as I know.


and last but not least T2 to T11 is a long fusion.

What matters more is where it ends. You daughter's fusion ends pretty high which makes it very unlikely she will ever need another operation to extend it or for any other reason. Our surgeon refers to it as "one stop shopping" for surgery on these kids and doesn't expect she will ever need more back surgery.


He said all this in a family email. I replied we had two opinions from Scoliosis Research Society Doctors and they both recommended the same thing. She needs surgery. We could wait, but then she could possibly need a longer fusion if she waits too long.

You are thinking correctly. Your brother-in-law does not have the training or relevant experience to be advising you.


Isn't fusion due to a car wreck different than fusion for Scoliosis?

Yes, for many reasons but mainly because the instrumentation today is much better.


I am so mad I could spit. What I need to hear from people right now is you are making the right decision and everything is going to be okay. Not one of my husband's family members have even called to see how Emily is doing since we made this decision. Sorry for the vent, but I can't sleep!

Sometimes folks get so caught up in taking care of their kids that they forget to take care of themselves. You don't need this ignorant nonsense now or ever. If two surgeons have advised you on the need for surgery now, then it's almost certainly the right decision. Your husband's family is probably worried that your daughter's situation is relevant to your brother-in-law's and are afraid for her. If so, they too are ignorant on this point.

Stick with the people who know what the heck they are talking about is my best advice.

Good luck.

scoliboymom
03-21-2009, 07:46 AM
Hi Becky
I had a similar experience with my brother who seemed to know all the answers and surgery was not one of them. My mother finally told him that since there could be a genetic component he better keep a careful watch on the spine of his own child.
Needless to say this brother never visited my son, never asked how he was doing , never said a word to him or me after the surgery. Too bad for him, and I do hope his sweet little boy never has to go through this.
Anyways on the positive side my son too says if he had to do it again YES he would. absolutely, no regrets. He no longer has any pain, he has the stamina to stand for long periods of time, walk endlessly. before the surgery this was very difficult for him. His curve was beyond 80 and with progression and no surgery your daughter would someday have these problems too if she doesn't already. You are making informed choices for your daughter and you wouldn't be doing this if you thought there was another option. Stick by the decision of you and her doctors.
Ramona

ddr
03-21-2009, 08:46 AM
Let me shed some light on the other side of the coin. I had a relative on my ex-husband's side of the family that had back surgery that led to many many other back surgery's. He was totally against back surgery and had good reasons for that. My sister had the same problem that he did with her back. She got two opinions, knew all about everything, had all the answers, didn't want any input from anyone and proceeded with the surgery. She has since had an additional 4-6 surgeries, and is addicted to prescription medicines. I regret not insisting that she speak to my husband's relative before she made her decision.

I'm not saying any of this is the same. I do think your brother-in-law had a lot of guts to speak up even though it wasn't his business. He probably did so because he cares.

It's not too late to have a conversation with him, maybe changing your mind or making it even clearer that you are doing the right thing. Your own common sense is more important than what your brother says or what your doctors say.

All I'm saying is keep an open mind, weigh all the facts, make sure you have no regrets and make your decision.

Snoopy
03-21-2009, 09:12 AM
Becky,

My first thought was what an a**! Why would he do this to you especially in a family e-mail!? I've camled down now and here's my two cents worth:

Did he go to the Mayo Clinic after his fusion failed? If so, did they do any surgery on him? Did he research doctors before his surgery? Does his back hurt when sitting in a chair? Find out how long his fusion is so you know why he thinks T2-T11 is a long fusion. Maybe to him it is if he only has one or two vertebrea fused. My dad had I think 3 or 4 vertebra fused and therefore thinks my daughter's fusion (T3-L2) is a long fusion. Remember, his surgery was in 1992, a lot of things have changed since then.

My daughter will be five years post-op this year and yes, she is uncomfortable when sitting in an auditorium chair that has a hard back. I think the reason for that is the curved shape of the chair back doesn't fit her straight back and nothing else. She simply turns herself a little to one side and is fine. I asked Jamie within a day or two after surgery if she regretted our decision for surgery and she said no. That answer has never changed.

Feel free to spit if it'll make you feel better. :)To keep the family peace, though, I'd suggest you vent to us instead of causing family problems. Don't doubt yourself because of your in-laws. Trust yourself that you've made the right decision and stick with it.

Mary Lou

debbei
03-21-2009, 09:35 AM
Becky,

I know it's different for everyone, but for what it's worth, I have NEVER felt the hardware in my back when sitting in a chair. Now at 5 months post-op, I can sit comfortably in almost any kind of chair. T2 to T11 sounds like a dream to me, as I am fused 13 levels. Even so, right now I don't' feel any limitations for things I want to do. I know I can't go back, but that's ok--I'd rather not go back to the pre-op pain.

Your brother-in-law may have good intentions but he sure comes across as a know-it-all jerk. If different SRS docs all recommend the same thing, I would trust their opinions.

Good luck mom--I know the worrying must be horrible. ((hugs))

This reminds me of pre-op, once I was feeling as OK as I could about the surgery, I began telling close friends. So many of them gave me the 'what are you going to do to yourself, it's crazy' speach. It just broke my heart. Eventually they came around as I had to 'educate' them.

txmarinemom
03-21-2009, 09:47 AM
What I need to hear from people right now is you are making the right decision and everything is going to be okay.

You are making the right decision and everything is going to be okay.

You have the weight of expert medical advice FOR THIS SCENARIO on your side. He doesn't.

You know that modern scoliosis fusion surgery is different than for fusion surgery performed in 1992 for trauma. He apparently doesn't.

You have your daughter's best treatment and welfare at heart. He just wants to be right.

ddr, I have to disagree he "had the guts" to speak up because he "cares". If he really cared, why isn't he there now? Because his "well-meaning advice" wasn't taken? Please.

Becky, you've done your homework. None of what he said to you is correct. Like Sharon's daughter, I'm fused T4-L1 (and I'd do it again, BTW): She brings up a very good point that the bottom level of the fusion is more limiting than the overall length of the fusion. That said, many kids like Mary Lou's Jamie and Ramona's Patrick DO have longer fusions and do fantastically.

I agree 100% with Mary Lou that the place to vent is here. He doesn't get it, and he *won't* get it even if you talk until you're blue in the face. You don't have to convince him, and you're truly better off without him and his negativity in your life as y'all gear up for surgery. It's unfortunate, but if the rest of your family want to stick with him, they need to go too. It's not their battle.

You're doing what you believe to be in your daughter's best interest - and what the SRS docs believe to be in her best interest.

Hang in there, hon.

Regards,
Pam

momw/scoli
03-21-2009, 12:00 PM
WOW! Thank you for all the replies and support! You told me exactly what we need to hear right now! I know we are making the right decision.
Everything is going to be okay.
Becky
Mom to Emily 14, 51T having surgery May 28

Pooka1
03-21-2009, 02:44 PM
WOW! Thank you for all the replies and support! You told me exactly what we need to hear right now! I know we are making the right decision.
Everything is going to be okay.

The odds certainly are on your side that everything will be okay. Extremely on your side. We are lucky to have the instrumentation and techniques that are available now.

Good luck.

LynnMarie74
03-21-2009, 07:52 PM
Just like everyone else said, sounds like your brother was just frustrated w/his own experiance & doesnt realize that his accident and your daughters scoli are 2 different things. And yes of course a ton has changed since 1992...and things Im sure, will continue to change & progress in that area of medicine. No one wants to endure a fusion surgery regardless of how lengthy it will be...but she will be just fine. She will recovery quicky as she is young and will be super happy that she did what she did & didnt wait to have it dont as an adult...like alot of us did on here. I have a 12 level fusion...which is pretty long in my eyes, and honestly....after 9 weeks, I feel SUPER! Ive been off my medication for a few weeks now and really, the only discomfort I feel is at night. Sleeping is not one of my favorite things right now. Im sure that too will pass, but all in all, I would do it all over again in a heart beat! Speaking of heartbeat......follow your heart as to what to do...I think you already know what the best choice is for you & your family.

Best of Luck!!

Lynn

smileyskl
03-23-2009, 01:14 AM
Becky,

I have a cousin who's a Chiropracter and as you would guess he basically told me and most of the family what a bad decision we were making for my daughter. Don't sell yourself short - you have done your research - you have specialists opinions - and up until his comments, you felt confident with your decision. Don't let him shake you up - you have much more important things to think about. I finally told my cousin thanks for his help and then didn't discuss it with him again. As far as my opinion - He is a Chiroprater and my daughters doctor is a reputable and highly recommended Pediactric Orthepedic Specialist specializing in scoliosis so it was a no-brainer which opinion I was going to go with. Everyones experience is different and you can't base how your daughters will be on what someone else says. For what it's worth - my daughters fused t-1 - t-12 and she is doing great after only six weeks. If it weren't for her restrictions, she feels like she could do anything she wants. She says she can't feel her rods at all and she is a very skinny girl. Hang in there and vent whenever you want.

Sharon

The Slice
03-23-2009, 09:03 AM
I can't resist adding my two cents here. First of all, your brother in-law's surgery was done at a small town hospital without the benefit of a spine specialist to do the surgery, is it possible that the reason he is having pain could be attributed to a poorly done procedure due to a lack of experience/knowledge on the part of the surgeon? Second, if you have concerns, why not just contact the surgeon who is planning to do the surgeon and discuss the situation with him/her? You may feel embarrassed/uncomfortable with doing this as you might think that you're asking dumb questions. The reason you might think that is not knowing what anyone else asks their doctor. Hey, what can it hurt to get some peace of mind?

laurieg6
03-23-2009, 12:31 PM
Before my son's surgery, we had plenty of negativity about it from "well-meaning" relatives too. Everyone thinks they're an expert or they know an expert who can fix things they know relatively little about.

My son is so happy he had the surgery. He can be a regular kid now, without a brace and without constant appointments to try to fix his curves without an operation. He can do anything he wants to do now. Since he doesn't like organized sports, I take him to the gym twice a week where he swims or lifts weights and uses any aerobic machine he wants. He rides his bike, takes long walks, participates normally in PE (except for sit ups), ie. he can run, jump, play any game, etc. His physical therapist says he is probably stronger now than at least half of his age group. Alexander says that he never feels his rods, except when leaning on something hard. He says this doesn't bother him and he is fine. He has NO pain whatsoever. I know he would never want to go back from the surgery.

It sounds like you're making the right decision for your child.

Good luck with everything.

txmarinemom
03-23-2009, 12:54 PM
Laurieg mentioned how Alexander can feel his if he leans against something hard ...

I'm the same if I lie on the floor on my back (I have hardwoods - not the most comfortable position with or without instrumentation, and not one I willingly chose *before* surgery), and occasionally in a hard backed chair if I don't shift slightly to the side. It's not painful, though, momw/scoli ... it's merely an annoyance. I hadn't even really thought about it until Laurieg's post, so that should give you an idea of how (in)significant it is.

It seems that smaller framed people with thoracic fusions have a tendency to feel the hardware more (although some don't at all) just because of the proximity to the skin surface. Lumbar hardware tends to be deeper and more well covered.

Just another .02 in the kitty. If your daughter is one of us that feels her hardware, she'll easily adapt. It's really a minor thing.

Regards,
Pam

Jennybear
03-25-2009, 09:29 PM
WOW! I couldnt believe what I just read, my initial thought was also what a jerk lol. My father had an accident as well and he snapped his spinal cord, and is now in a wheelchair and has been for over 7 years. I love him dearly but he was the one who was mostly opposed to my surgery because he has metal rods and goes through alot of pain, but there is a major difference between the two surgeries. I know he was just worried and recently alot of people who dont go through this surgery I sometimes find ignorant, and well annoying lol. I dont feel my rods, but im still numb and have little to no pain. My surgery was a complete success and I couldnt be happier. In a split second I would do it again.

Your brother in laws surgery was such a long time ago and medicine has changed a great bit since then. I know of a man who had surgery at 13 and was in the hospital for months and months and couldnt even move. He is now about 40 years old. And i will tell you that a whole lot has changed since then :)
You know what's right in your heart and so does your daughter. I think what influenced my decision the most was what i would look like down the road because i had a rib hump.
This surgery is always best looked at when your on the other side of the hill, I remember being where you are about a year ago and man I would never go back.:)

momw/scoli
03-27-2009, 10:28 AM
Thanks for all of your stories. They are making my family stronger and more determined!
Becky mom to Emily having surgery May 28