dealing with strong opinions from family

[marthak]

Hey all in NSF!

I'd love some calming advice on how to deal with family over the surgery issue. My husband's mom is phenomenally upset we are considering surgery for our 15 1/2 year old daughter. I think she isn't speaking to us at the moment. She herself has had three spinal fusions and is in a lot of pain. She never had scoliosis, her fusions were for strain and injury placed on her spine, but I fully appreciate how much living with pain has changed her life and her overwhelming fear of spinal surgeons.

Has anyone ever been yelled at for considering the surgery? This is a really hard choice to make, and I did not anticipate struggling with others ability to accept the options. I have explained to others what a progressing curve means and how it affects her left lung, keeping it from inflating fully and how that interacts with her asthma and her tendency to get pnuemonia (february is always rough). In addition to her ability to take in oxygen she has impact on her hip with running, which is one of her favorite things in life. I don't really think there is anything I can do to get my mother-in-law on board, she is in pain and that's what she sees. She denies the progressive nature of this condition, and acceptance is not her long suit. I'd love for everyone to be on the same positive page, so the decision to choose surgery or waiting becomes about our daughter and her back, and everyone pulls together, but I am unsure what to say to my mother-in-law. My husband is doing fine, I know it's rough for him to not have her support, but I also think he is used to that being the case. Parents, yikes, we ARE parents, lol...

- Martha K

[scoliboymom]

Hi Martha,
I'm not sure I have any calming advice for you but just want to let you know you are not alone as far as family members and their opinions go.
My aunt, who luckily lives on another continent, feels strongly that my son should not have surgery- and she has never even met him. She has all kinds of other "remedies" to cure scoliosis.
And my brother who lives close by also thinks that he should not have surgery. He only spoke once to me about this in the context of "if he was my son..... " and now I hear it second hand as he talks to everyone else in the family about this except me. He has not mentioned my sons condition to my face since last October not even to ask how he is doing although I send e-mail updates to all family members. The silence from him could be almost worse except I have enough support from the rest of my family to get me through this.
My mothers first reaction was that Patrick's scoliosis came from carrying heavy backpacks and/or sitting in front of the computer. And I know that merely telling her this was not the case would have been frowned upon. So I have since educated her by giving her literature to read that specifically address these issues. She has gotten away from these ideas now. And fully realizes the necessity of surgery.
So perhaps you could do the same and give your mother-in-law some things to read in her own time so that she will come to understand the need for surgery better.
Otherwise even if she doesn't come around, know that you are making the best decision for your daughter.

[Jacque's Mom]

I'm sorry you are having to deal with this on top of the concern of the surgery. Looking back, my mother (and I) went through the same thing. My mother was completely devastated when I was diagnosed in 1966 at age 12 and was very pro surgery for me when someone finally could help me (I suffered with pain from age 12 to when I had the surgery at age 27) yet I don't think my father was. He always suffered from back pain, not scoliosis, so in his mind was grin and bare it as he did with pain. People have said things from - "I have a curve and had four children, and I didn't have the surgery" or - "hang from a bar in the doorway and it will straighten out" to just totally against surgery. Even at family gatherings, instead of saying everything is going to be fine, I would hear "you poor thing" or "aren't you scared that something can happen", or "how are you going to be able to stay in that body cast for nine months" and it goes on and on. I know it's difficult but you have try to block them out. You know you have researched and have done your job as a parent. You are doing the right thing for your child. Unless someone has been through it or going through it, they just don't understand. Just know we are "family" on this site and are there for each other for suppport. Hang in there.

[Celia]

You're not alone! This kind of reaction from in laws who themselves may have scoliosis is very common! When my 19 month old daughter was diagnosed with a sixty degree curve, I found out through the internet that there is often a family connection. I don't have scoliosis, but I remembered the constant complaining by my MIL about her "back". Up until that time she always referred to her condition from everything from osteoporosis, osteoarthritis, knee problems the list goes on.... everything but the dreaded word "SCOLIOSIS" You could imagine how upset I was when I found out she did indeed have scoliosis all these years and never revealed it to me because I could have been on the look out for it in my kids. This was like the icing on top of the cake - as if most people need a reason to hate their mothers-in-law! My daughter had a life threatening condition and the end result could have been very serious because her life span could have been cut short. Anyway....it's water under the bridge now because my daughter is doing remarkably well after serial casting but let me tell you... my MIL was the strongest and loudest opponent to my decision for having my daughter in casts. She was appalled that I couldn't bathe my daughter and often asked how could I put my daughter in cement and was very very upset whenever we had family gatherings. My MIL never had surgery or treatment for her scoliosis and is currently in a wheelchair. I look at it this way, I faced my problems head on but my MIL is still in denial and is suffering for it.


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[Snoopy]

Oh Martha,

Your mother-in-law sounds so much like my mother-in-law! When I told her Jamie has Scoliosis, she thought we needed to keep it a secret. Her worst concern was that everyone would find out! I felt like yelling at her that EVERYONE NEEDS TO KNOW, but I didn't. For Jamie, I found out by doing my own research, that her Scoliosis may be caused by a muscular condition that runs through at least 3 generations in my mother-in-laws' family. Never did she tell me that Scoliosis could be a side effect of CMT (Charcot-Marie-Tooth). She refused to believe that Scoliosis was serious. You should have seen the look on her face when I took Jamie's Milwaukee brace to her house and showed it to her. The look on her face was priceless and I thought she finally understood. Wrong! She got worse when I told her Jamie needed surgery! She fought me every step of the way and now over 2 years later, she still fights me on Jamie's Scoliosis.

My best advice is to try to ignore her outbursts. You don't need the added stress. I'm sure your husband could try to talk to her, but it probably won't help. Comparing her fusions to your daughter's is like comparing apples to oranges. Yes, they are both fruits, and yet they are still very different. Try not to let her get to you. Feel free to vent here when she gets to you instead of getting into a fight with her. We understand and don't mind listening to you vent.

Mary Lou

[marthak]

Thanks guys, I can't believe you went through this too! Families can be challenging, lol.

I think I'll just let it go. How she loves Moriah and accepts her is her choice, building that relationship is half her and half Moriah, but its not really me or even my husband. I did bark at her, told her this was the toughest decision in my life and not an easy one as she stated, or the wrong one as she stated, but a gray one that may or may not be the "right" choice but was, no matter what, a rough choice. What choice is it to choose less lung space, less activity over time, maybe even growing pain OR an eight hour surgery that could have really, really terrible results, but at its best has a painful, long recovery and forever changes the spine she was born with. I want to move forward whichever path we choose, so it needs balance, not just acknowledging fears but nurturing hope as well. She could be straight, and healthy and never have trouble breathing again (maybe???), who knows?

I'll work on a way not to bite her head off, maybe I'll try my son's secret for telling his mom (me) the truth about his homework, take a full three seconds when I ask about homework and then tell me the truth because that is what I really want. It works, by the way. Seriously. So I'll try the 3-second pause, and remember that what someone says does not define how we feel, or what's going to happen, or even how we feel later. Right?

kk....working on it...lol

- Martha K

[Celia]

I really need to vent! Since we're on the topic of mothers in law....what really upsets me about my MIL is when I asked her shortly after my 9 year old son was born whether there was a family background of medical problems that I should be on the look out for, I remember as clear as day "no, there is nothing you have to worry about, our family is healthy and there are no medical problems you have to concern your self with" This conversation comes back to haunt me time and again as I look back at the last 5 years in the struggle I have gone through to keep my daughter healthy and live a full life!! This woman has the gall talk to me about her stomach upsets and gas for hours on end and she can't tell me she has scoliosis????? Many times she held Deirdre in her arms before she was diagnosed and one would think that she would recognize scoliosis in my child having had it herself and have the decency to alert me to the problem. I can never trust this woman, ever!


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[Karen Ocker]

Family members who do not understand

When I decided to have my revision at age 60 for progressive curves and decreasing lung capacity my mom(she was 85 at the time) thought I was doing it for cosmetic reasons. My physician cousin was very alarmed at my breathing problems and was supportive. My mom was pleasantly surprised with the result!!!

The answer to all that family opposition is IGNORANCE of what scoliosis can do to the human body unless stopped. Going to ignorant people for support is like going to an empty well for water.

When I was 14 in 1956 everyone told my mother not to let me have the surgery-give me an education instead. They were sure I would be paralyzed.
I was in terrible pain and basically had no teenage life. Without that surgery I could not have lived this long.

For those suffering through this you can get all the support you need from us right here.

[tonibunny]

Sorry for jumping into this thread, but I just wanted to say that it makes me MAD when I hear that people think it is "cruel" to put an infant with scoliosis into a plaster bodycast.

NO IT IS NOT. It's MUCH crueller to "watch and wait" and let that child's scoliosis progress.

Children wearing plaster casts from infancy are generally fine with it, they grow up wearing the casts and it's just a normal part of life for them. They just get on with it. I KNOW, I was one of them (cast from 6 months to the age of 10, alternating with Milwaukee braces from the age of about 4 in the summer months).

I am eternally thankful that my parents had the sense to agree to me being put into a cast as soon as my 64/40 degree idiopathic double curve was diagnosed when I was a baby.

[Celia]

Karen,

You have a way of making everything so clear! That's the answer I needed....my MIL is ignorant and knows nothing about scoliosis.

Toni,

Casting is definitely not barbaric - not by any stretch of the imagination when one considers the alternative.

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[karen2447]

Martha,

How horrible for anyone to give you grief on top of what you're already going through.

Dealing with the issues that constantly arise with scoliosis and bracing- ranging from dealing with friendships and relationships, clothing options, being able to sit for long periods of time in school, etc. is overwhelming in itself- let alone having to deal with ignorance and unnecessary attitudes. That is just ridiculous and unfair.

You're making an informed, educated decision that is in the best interest of your child. Keep that in mind. Anyone who doesn't respect that can go- let's see how can I say this nicely- can go "jump in a lake."

My daughter was just diagnosed with scoliosis a few months ago. She wears a Boston Brace 16 hours a day. She's 10-1/2 and is dealing with all the issues you'd expect. She couldn't sleep, sit in class, I had to rub her back in the middle of the night, her straight A's all dropped to Bs and B- for a marking period. It was horrible for about 3 months.

Just to make you laugh, my own ignorant, thinks she knows it all sister-in-law told me, "I'll ask my friend if she can give you any advice, but they don't wear braces in New York." Got that? So, darn it. I live in New Jersey. If only I moved to New York, my poor daughter with a 36/29 curve wouldn't need a brace. Sometimes you just have to laugh at the ignorance and ridiculous-ness of people.

Martha, you do what you know in your heart is best for your daughter and her situation! May God Bless You All.

Karen

[rainbow2010]

What you are going through is rough. Some of your mother-in-law's problems with her surgery could be bad doctors. Doctors who treat scoliosis have been trained and in most cases are good at what they do (I ran across one who didn't do a couple of things he should have and went to another doctor.) I was told before my original surgery that it would continue to progress and at the rate I was going, I would be dead by age 30. I had a friend who did not have the surgery and he died in his late 20s. All you can do is try to reassure her that your daughter will have a better life if she gets this surgery.

[sparks42]

Maybe stress to your husbands mother that everyone heals differntly.

I don't know when she had these surgeries....but as time goes along.....the surgeries get better. And just because she had a lot of pain and trouble....well.....everyone heal differntly.

I had spinal fusion and I was in pain for maybe a week???? That was 3 years and and I don't experience ANY pain.

[The Slice]

MarthaK, the reasons that your daughter is having, and your MIL had spinal fusions are two different things entirely. From what you have said, it sounds as if having this surgery may keep her from permanent disability, if not save her life. Let your MIL rant all she wants to and behave as she wants to, but know that you are doing the right thing. Think about how ludicris it would be to not have her treated because your MIL is not talking to you and your daughter ends up with permanent disability, or dies from complications of the scoliosis. While it may not be pleasant to hear this stuff from her, the bottom line here is that your daughter is YOUR daughter not hers and it is YOUR legal and moral responsibility to do what's best for her.

[cameol998]

Hi everyone.

Martha, I would just like to say, I am so glad my parents had the knowledge back in the 70's to find the right doctor to treat my 59 degree scoliosis. Because they fused my spine and put a herrington rod in my back at the age of 12, I was able to live a very normal life. I carried two full term pregnancies and that alone was worth the surgery and a year in a body cast. I am now 48 and I just started having pain about 2 years ago. I dont know what is going to happen to my back in the future, but I do know that because of the surgery, my past was wonderful. I hope this helps you. I know it is a big decision for you.