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Thread: Family Support With Scoliosis Surgery

  1. #1
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    Sep 2009
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    Family Support With Scoliosis Surgery

    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
    Surgery date: June 8, 2010 with Dr. Boachie
    Thoracic curve: 55 degrees, corrected to 25 degrees
    Lumbar curve: 58 degrees, corrected to 27 degrees
    Posterior-only surgery, Levels T3-L3
    31 year old mother of 2 young kids

  2. #2
    Join Date
    Feb 2010
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    460
    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.
    Lynette - 44 years old.

    Pre-surgery thoracic 55 degrees
    Pre-surgery lumbar 85 degrees

    Post-surgery thoracic 19 degrees
    Post-surgery lumbar 27 degrees

    Surgery April 1st 2010.

    Posterior spinal fusion from T9 to sacrum.
    Dr. Cronen at University Community Hospital - Tampa, FL.

  3. #3
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    Jan 2008
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    NC
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    Quote Originally Posted by JenM View Post
    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.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  4. #4
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    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
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  5. #5
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    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.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  6. #6
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    Mar 2010
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    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! 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.

  7. #7
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    Spring Hill, Florida
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    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
    36 year young cardiac RN
    old curve C 29, T 70, L 50
    new curve C 7, T 23, L 20
    Surgery June 11, UCH, Dr. Cronen T2-L5, posterior
    Revision December 20 L5-S1 with pelvic fixation
    and Osteotomy to L3 at Tampa General Hospital

  8. #8
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    Sep 2003
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    Northern California
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    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

  9. #9
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    Bucks County, PA
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    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.
    Debra
    Age 45
    Pre - surgery Thoracic 69, Lumbar 48
    Post-surgery Thoracic 37, Lumbar 39 (unfused)
    Fused T4-T12
    Milwaukee braced, 11 years old to 15 yo
    Surgery Sept. 1st, 2010 Dr. Boachie

  10. #10
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    Oct 2009
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    Quote Originally Posted by Debra JGL View Post
    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.
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  11. #11
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    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.
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  12. #12
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    May 2009
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    3,745
    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
    Last edited by jrnyc; 06-24-2010 at 06:15 PM.

  13. #13
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    Sacramento, CA area
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    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!
    Laurie
    Age 57
    Posterior fusion w/thoracoplasty T2-L3 Oct 1, 2010
    Thoracic curve corrected from 61* to 16*
    Lumbar curve, unknown measurement
    Disfiguring back hump GONE!!
    Dr Munish Gupta
    UC Davis Medical Center, Sacramento, CA

  14. #14
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    May 2008
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    Central NJ
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    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))
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  15. #15
    Join Date
    May 2010
    Location
    Indianapolis area
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    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
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

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