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JenM
06-24-2010, 07:25 AM
Hi friends,

I just want to write alittle of my personal story about my immediate family (not my husband though) and their non-support of my scoliosis surgery and see if anyone else has experienced this with their family/friends. I had scoliosis since I was around 12 years old. At the time when I found out from the school nurse, my parents seems to do really nothing but ignore the situation. They just started taking me to a chiropractor because they do not like regular doctors. I think they really thought the chiropractor would really straighted my spine out. I went to a chirpractor for a few years and of course my back progressed and progressed. Then they took me to a SRS doctor by the time I was like 15, who then fitted me for a brace, but I cried so hard that I didn't want to wear it, so my dad said I didn't have to, and that was the end of that. (of course, now that I am older, I WISHED i wore the brace and could care less if people made fun of me in high school). He ended up giving the back brace back to the doctor. Anyway, fast forward to now where I am 31 years old....My parents/sister (who I am really close to) were not fond of me getting surgery. My grandmother never had the surgery and she lived to be 80 years old. Her curves were both in the 100 degree range. I feel that they think if my grandmother could live with it without pain, then I could. My grandma never even took anytype of medicine for her pain. I basically have had no support from them or my sister. When I told my sister back in November that I was getting scoliosis surgery, she made a comment about how I could get paralyzed!! My mom is always worrying about my kids (which I think is great and I love her for that and appreciate her watching my kids), but she really never asks how I'm doiing or feeling. The other day when the kids were acting up, she made a comment like, "See, having this type of surgery with 2 young kids wasn't a good idea....how are you going to handle this? The comments that she makes along with my sister make me want to cry.
THey always say the wrong thing about the surgery. After my surgery, my sister never even asked how I was feeling!!!

Anyway, i have alot of friends who are very, very supportive. Without them and this forum, I'd be lost. Why do family members just do not get it? All the support I have for this surgery is basically my husband, and all my friends.

Does anyone else have people in their lives that just don't understand why we need the surgery? I know it's an "elective surgery", but some of us really need it!!

Just wanted to see if any other people are in the same boat.

Thanks,
JenM

LynetteG
06-24-2010, 08:05 AM
JenM - I totally understand where you're coming from. I point blank told my family that if I didn't have the surgery, I'd end up in a wheelchair more than likely on oxygen. I told them that my stomach organs had already shifted, and that the doctor said they would shift more eventually possibly constricting my heart and lungs which could be devastating. Also when they saw I was in pain after walking a short distance, then they started to understand and encouraged me to have the surgery. My mum also adores my sons, and tends to put them first a lot of the time, which I don't mind because I love that she loves them so much, but she was very worried about how I would take care of the boys afterwards being a single mom. I have an aunt who has horrific scoliosis, she looks terribly deformed, and never had pain. So everyone used to compare me to her and say, well she's in her 90's now, and she never had surgery. However, all you can do is explain that everyone's scoliosis is different, what might be good for one person is not always good for another person. Maybe you can show your family this post, so that they can see others have experienced what you are, and that the best - the BEST thing you did, was to have the strength and courage to go through with this surgery, to enhance your life with your children in the future. Let them realize that it took a ton of guts and courage on your part to go through with this life changing surgery, and you didn't take that lightly. Right now - your family need to give you love and support to get through this time, to help you heal the best way possible. Negativity will not help you, it will only set you back. We are all here for you Jen, and we understand what you are going through, so please stay strong, and know that it WILL all feel so much better very very soon. Hugs to you.

Pooka1
06-24-2010, 08:19 AM
Why do family members just do not get it?

They are afraid for you out of ignorance of the actual risk of the procedure and the risk absent the surgery. Nobody is born knowing any particulars about any of this. Most, but not all, can be brought up to speed on this.


Does anyone else have people in their lives that just don't understand why we need the surgery? I know it's an "elective surgery", but some of us really need it!!


You were very brave to press ahead against that push back. I really admire that. The facts were on your side and knowledge is power.

I didn't run into that nor would I have spent a damn second dealing with ignorant push back on this surgical issue (or any issue whatsoever really) so I can't help there. But I was advocating for my kids so it was easier. I agree it might be harder when it is yourself.

Good work. :)

Doodles
06-24-2010, 12:46 PM
Jen--I thought you were writing my story there for a while including the chiros my parents took me to--which I still did for years--and crying about the brace and them giving in to not having me wear it. My parents thought it was too much of a surgery and shouldn't do it but came around. Other relatives just didn't get it and I think they thought I was vying for attention or something. Thank goodness for a super supportie husband and my 4 adult daughters. Janet

golfnut
06-24-2010, 02:34 PM
Jen,
It takes guts to have this surgery whether you have 100% agreement from friends and family members that it's the right thing to do. I'm sure it's hard when you have family members that just "don't get it." At least you have full support from your husband. My older brother (61) just said to me on Father's Day, that I should get a second opinion "because is Dallas they do these surgeries laproscopicly (sp.)" If that were the case, I don't think anyone would have the open back fusion surgery. I've had a few people look at me like I'm nuts to have the surgery because they see me playing golf 5 days a week. As far as not wearing the brace, it seems that there are many who still required surgery even after wearing a brace for 3 years. We can't look back anyway. Keep us posted on your continued recovery. I know you're happy with your new straight back.

rohrer01
06-24-2010, 02:47 PM
The only one in my family that DOESN'T want me to have surgery is my hubby. I think he is afraid that I will die. My mom is worried that I will be handing myself over to a knife happy doctor out to make a buck. Other than that I think they all wish I would get it and get it over with just to shut me up!:rolleyes: I'm really scared and barely in surgical territory with the degree of curves that I have. Although, I have read quite a few with my degree of curvatures that have had surgery. That makes me feel better. It's hard having "silent" support of my hubby, knowing that he doesn't want me to do it. Oh, he will be there for me if I do. I just wish we were together on this decision and it wasn't just "my" decision, although I am the one who has to live with it. Sigh... I wish it were easier, as I know that I will be learning the new meaning of PAIN if/when I have surgery.

jsully
06-24-2010, 04:03 PM
MY family is the same way. My mother's sister had a 80 degree curve and is doing just fine. I did wear a brace many years but when surgery was spoken of, my mom ran for the hills. I was going to have surgery 7 years ago because my husbands family was very supportive. Then I found out I was pregnant with my next little guy and canceled. Since then his parents passed away. That is why I have waited till now, my boys are 6 & 7. My brother in law (husbands brother) and watched my kids the day of my surgery and the weekend after.
My mom however, went to a Brooks and Dunn concert, since she had tickets even before I scheuled surgery ya know. Luckily my Dad did travel 1 1/2 hr from Orlando to spend some time with my husband in the hospital. Another awesome thing my husband did was donate his blood for me. When I told my mom she said, "Oh I have that type of blood". I said good, but you have to donate in the next couple days so it will get to the hospital. She said "OH, well I don't have time for that" She has nothing but time, no kids at home a husband, a small house and easy job! So there is my 2 cents on iconsiderate families. Also, I have not seenmy own brother yet, who lives in town. Janet

LindaRacine
06-24-2010, 04:18 PM
Jen...

When you show them your postop xrays, they'll finally "get" it!

I think we forget that we have been "educated" gradually about the treatment of scoliosis. Our friends and relatives usually don't have that same experience. They know very little about the condition until they see us go through surgery.

So, hang in there. Believe me when I tell you that you'll feel a bit vindicated when they visit you in the hospital and/or see your postop films.

--Linda

Debra JGL
06-24-2010, 04:59 PM
Jen - It's so hard when you feel you want the support and it isn't there, but it's good you are able to reach out to those who can give you support. I think this surgery can dredge up alot of emotional issues, and family is ground zero. It sounds like your family has been in denial about your scoliosis for a long time. They probably want whats best for you, but don't understand what that is. Your success story will set them straight, hang in there. I did wear the brace, the first day on the way home I cried in the car, and my dad left me there and got out and never talked to me about it. My parents were separated at the time. I wore that brace for many years and it didn't work in the long run anyway. I haven't told anyone in my family yet about the surgery. My mom has been hospitalized alot though my life and I have never tried to lean on her. I often wish I had her to talk during trying times, but it just isn't so. After I get home from the hospital only my husband will help me, the kids and pets (grateful to have him!!). This is why too I've waited until my kids were a bit older and could do alot to help themselves, even though I know things worsened for me in the meanwhile. I think that I'm doing this for my kids too, I want them to see me being brave and having courage to face difficult things in life. Luckily we can start new traditions with our own children out of support, strength and understanding.

Back-out
06-24-2010, 05:49 PM
Jen - It's so hard when you feel you want the support and it isn't there, but it's good you are able to reach out to those who can give you support. I think this surgery can dredge up alot of emotional issues, and family is ground zero. It sounds like your family has been in denial about your scoliosis for a long time. They probably want whats best for you, but don't understand what that is. Your success story will set them straight, hang in there. I did wear the brace, the first day on the way home I cried in the car, and my dad left me there and got out and never talked to me about it. My parents were separated at the time. I wore that brace for many years and it didn't work in the long run anyway. I haven't told anyone in my family yet about the surgery. My mom has been hospitalized alot though my life and I have never tried to lean on her. I often wish I had her to talk during trying times, but it just isn't so. After I get home from the hospital only my husband will help me, the kids and pets (grateful to have him!!). This is why too I've waited until my kids were a bit older and could do alot to help themselves, even though I know things worsened for me in the meanwhile. I think that I'm doing this for my kids too, I want them to see me being brave and having courage to face difficult things in life. Luckily we can start new traditions with our own children out of support, strength and understanding.

Very well said, Debra! A mature approach from a real grown-up who understands that some of us weren't fortunate enough to have adult parents. Luckily, your children do - hopefully mine, as well.

Back-out
06-24-2010, 05:50 PM
JenM sorry for your family's lack of understanding. I can really identify. I think often they feel threatened. Accepting the seriousness of the problems we face, can seem to pose a demand. Many who feel they are already "just getting by", don't feel up to helping a close family member with a major problem. Results: redefine the problem as not major and with simpler answers!

Sometimes there can even be anger attached to learning of such difficulties, I've experienced that. Most people want to see themselves as good-hearted and generous. When they're presented with an undeniable need, they may feel they've been tested (and failed) if they don't come through as they feel they ought to. They don't even really want to be educated about special needs. Proof can just make them feel more inadequate. Voluntary promises are being broken around me right and left right now. I didn't even ask - but I DID count on them once they offered to help. :(

jrnyc
06-24-2010, 06:09 PM
i think many of us do not have parents around to help.. some may have lost parents at a young age...others do not have relatives around for other reasons...

Jen, i hope you can look past the lack of understanding on the part of family members at some point...just for your own well being and healing...
i do know that sometimes people say the wrong things for the right reasons...and i know that many warn some of us about this surgery because they know someone who had a bad outcome years ago...trying to explain how much the surgery has changed over the years often falls on deaf ears...

ultimately, we all make the best decision for ourselves...and we are the ones who will suffer or benefit from that decision...whether we have supportive family or friends or not...

with all that said...i am really sorry that your family still "doesnt get it"...i know it makes everything tougher! i also know that sometimes, as they say in 12 step (and lots of other places) sometimes you just have to let go...detach from it...for your own good!

jess

lray
06-24-2010, 10:02 PM
I surely can understand the lack of family support. Like someone else here on the thread mentioned, some of us do not have our parents anymore at this age. However, I do remember when I was first diagnosed at the age of 10 or 11 that my dad never took me to one dr's appointment. It was always my mom asking a neighbor to drive us (because she didn't drive) or we would take the bus. I didn't think about it at the time, but looking back I realize that he probably felt very guilty. He had scoliosis too, and in my adult years he told me how badly he felt that I "got it", that is wasn't fair, especially since my two older brothers didn't get scoliosis.

So I do understand the lack of support in the family. However, if my dad was alive today and he saw that there was hope now when there really wasn't any in his day, he may be less guilty.

Basically we have to rely on our inner strength and find support with those who will be there for us, and understand that some people just can't deal with it, for whatever reason. It's ok, we're the ones who have to deal with this!

debbei
06-25-2010, 06:40 AM
Jen,
I'm sorry that you are not getting any understanding or support from your family. I guess not everyone has compassion in them. Maybe part of the attitude is that they feel guilty that your back got so bad due to their NEGLECT and they are just trying to forget about it? Everyone handles confusing emotions differently. Just try not to let them and their attitudes affect your recovery. A happy brain is good for recovery. Don't fret over their ignorance and lack of compassion.

((Hugs))

Confusedmom
06-25-2010, 04:26 PM
Jen,

I'd like to think Sharon is right--they were negative before surgery because they were scared of what might happen to you. Esp. your sister being worried you might be paralyzed.

I have gotten some pushback from my in-laws, I think because my father-in-law just went through open-heart surgery and they both had a difficult time with the recovery. Anyway, I bought the Wolpert book for them and my mom, and it seems to be helping them figure this out--why people do it, how serious it is, and what kind of support they can give. I think Wolpert is going to have to start giving me a commission for recommending his book. ;)

Evelyn

mbeckoff
06-25-2010, 06:11 PM
At least you all have family that care and love you. I have no relatives. I have a brother who has been suing me since 2006 over my fathers money. I have no aunts, uncles or cousins.

I went through this with only my husband . He was there for me for one month but now he is leaving me something I wish he had done years ago.

Except for one friend who came down from NJ to NC for me I have no one to lean on in any manner shape or form. I have 2 children; both of which are special needs. They are 15 and 17. They still need me.

I feel very alone right now after reading your posts and just want you to appreciate your families that you have

jrnyc
06-25-2010, 07:24 PM
hi Melissa
i am so sorry that you dont have family...i wish you did...

just wanted to say that i have no aunts or uncles left..my last uncle and aunt died this year...and i have cousins i never ever see! some live in CA, some other places...they have never really cared to be in touch...i always say i only see them at weddings and funerals...and then not always :rolleyes:
and not all sisters are close...soooooo...i guess i'm trying to say that having family doesnt mean they talk... or write.....or anything....
this has been true all my life...so.i dont let it bother me too much anymore..

i hope you feel better really soon!

jess

naptown78
06-26-2010, 12:25 AM
I was lucky. My mother had scoliosis surgery when she was young and again when she was 68 so she very much understood the reason I needed to have mine done. My hubby has been my rock.....The only thing I have noticed that bothers me is that it seems that people don't understand how long the recovery period is for this surgery. I feel like some of my friends might think I need to be more back on my feet than I am...I don't know. Maybe just my imagination. I am doing well but at the same time the endurance level is still low and it feels like that is a hard thing for people to understand once you are out of the acute recovery period.

Karen Ocker
06-26-2010, 04:32 PM
Some members took digital photos of their pre-op x-rays. That enlightened some family members as to the severity of their curves.:p