People who think they know....

[HGD24]

OK...I need to vent this. I was talking with someone from my husband's family the other night and after seeing my x-rays and showing them to thier boss who is a vet, this person insisted that I had to have been in a lot of pain throughout my life and wanted to know why I hadn't had the surgery sooner. When I told them that I was never in a pain from my scoliosis and that was part of why I waited, they insisted that I was in pain, I just didn't know it, going so far as to say, "Yes, you were" each time I would say that I wasn't in pain at any time in my life.

Why is it that people who aren't going through something feel that they can project their feelings and thoughts onto you and feel that they know what's best for you? This is the same person who 4 weeks into my recovery told me that I shouldn't be on any painkillers because it was all in my head (mind you, I was only taking them at night at that point, which I thought was pretty damn good!) and was comparing my fusion with thier daughter's heart valve replacement surgery. UGH! I just get so frustrated by people who do this and this person does this with everything, it's as if no one's feelings or opinions matter except for theirs. I'm so sorry to vent with you all, but I figured that if anyone would understand this, people here would.

Thanks for letting me get that out....

[Snoopy]

No need to apologize for venting. Don't you just love people who "know everything" when they really don't know anything about you or your back? My daughter's Scoliosis curve was 46* and her Kyhposis was about 71* or so at the time of surgery and she never had pain.

Why is it that people doubt you but then when you prove yourself, they turn around completely? Ex: my husband's mother told me she "knows" Jamie doesn't need surgery to correct an injury to her ankle. Now this was when Jamie first injured her ankle, nearly two months ago, but yet when I called her last week and told her she is still out of gym (for at least a total of 12 weeks) and the doctor wants to see her back in 6 weeks, now all of a sudden she tells me to prepare myself, 'cause she thinks Jamie needs surgery!!! And this is from a woman who hasn't seen my child since Christmas day and the injury happened New Year's Eve!!!

Continue to vent here and don't worry about what other people think. Who cares what they think! And don't feel bad about taking pain meds at 4 weeks at night. You are doing great. Keep up the good work.

Mary Lou

[Karen Ocker]

people who think they know/my experience

In 1956, when scoliosis surgery was so much more dangerous than now and I had a triple curve-100deg thoracic -people told my mom not to risk my life making me undergo the surgery. They advised her to "give her a good education(I probably wouldn't marry -so needed the education to support myself). My mom knew I would have no life with such a curve. The truth is I probably would have died a slow painful death.

At that time scoliosis surgery involved a gigantic split cast with a hinge on one side and a turnbuckle on the other. The turnbuckle got turned a little each day to reduce the curves by stretching my spine. After maximum correction was obtained they cut a hole in the back of the cast through which an un-instrumented fusion was performed in 2 stages. I stayed in that cast for 6 months at home--UNABLE TO WALK-. This was followed by another smaller cast for 4 months-after which came a "walking cast" which could be taken off. WITHOUT HARDWARE, A SCOLIOSIS PATIENT NEEDED TO STAY IN BED FOR A WHOLE YEAR AND LEARN TO WALK AGAIN for the fusion to heal.

This is what my dear parents endured with me and I went through it willingly.
I also got a decent result for the next 40 years. I became an RN and later a nurse-anesthetist.

My parents never heard a word again from the naysayers.

Parents, fellow scoliosis patients:IT'S NO ONE ELSE'S BUSINESS!!!

Karen

[sweetness514]

OK...I need to vent this. I was talking with someone from my husband's family the other night and after seeing my x-rays and showing them to thier boss who is a vet, this person insisted that I had to have been in a lot of pain throughout my life and wanted to know why I hadn't had the surgery sooner. When I told them that I was never in a pain from my scoliosis and that was part of why I waited, they insisted that I was in pain, I just didn't know it, going so far as to say, "Yes, you were" each time I would say that I wasn't in pain at any time in my life.

Why is it that people who aren't going through something feel that they can project their feelings and thoughts onto you and feel that they know what's best for you? This is the same person who 4 weeks into my recovery told me that I shouldn't be on any painkillers because it was all in my head (mind you, I was only taking them at night at that point, which I thought was pretty damn good!) and was comparing my fusion with thier daughter's heart valve replacement surgery. UGH! I just get so frustrated by people who do this and this person does this with everything, it's as if no one's feelings or opinions matter except for theirs. I'm so sorry to vent with you all, but I figured that if anyone would understand this, people here would.

Thanks for letting me get that out....

ITA with everything you said...I personally can't stand it when some say that since they did so and so at a certain time after surgery, they think that everybody else will as well, or take meds, or heal in the same amount of time, or never need surgery again..etc,etc. My ortho told me again that NOT ONE SCOLIOSIS is the same, and so is the surgical outcome of any patient. I know a man who has a 90 degree curve and he's living life. All my family and friends- EXCEPT for my dear husband who is realistic and lets me make my own decisions- told me that I SHOULD have had my surgery when I was 18 instead of at 26 like I did, but now that they see all that I've been through and how WRONG they were because ever since I've had my surgery, I've had a lot of problems and less than 8 years later I'm at my third surgery already, this by having had a great doctor and having a good outcome according to many orthos as far as the curve. I don't regret having the surgery when I did, because I took a leap of faith and was in some amount of pain, but at least I listened to myself and did it when I was ready. If I would have known what I know now, maybe I would have waited a few years since some surgical pocedures do evolve very quickly, but what's done is done. People need to mind their business and learn that many surgeries and diseases are complex and not all the outcomes and pains are the same.

That is pretty much with everything in life, but like you say more so with diseases and surgeries. Some people think they know it all and are bull headed. Like the outcome of people with MS, cancer, and the list goes on. Bottom line is listen to yourself and nobody else, but that goes for every aspect of our lives.

[crookedspine]

I agree...don't listen to anyone but your own heart...and those that truly love you! And I also agree...no two surgeries are alike, and no two recoveries are alike! Hang in there and remember....people who are "know-it-alls" really don't know much! Linda

[green m&m]

I get lots of pity party when people find out about my scoliosis and my genetic disorder.

They refuse to believe me when I tell them I haven't been 'damaged' emotionally by having chronic health problems. Actually my ex-therapist had problems understanding that I didn't dwell over it

[cathydownunder]

Hi Heidi
Pain and degree of curve do not automatically go together. My thoracolumbar curve is "only" 35 degrees but I have been in a lot of pain for a few years now. My problem is the damage the rotation has done to the discs and the DDD I have now. I must admit when I read on here of people with very large curves I sometimes wonder how they don't have the pain that I do with my smaller curve. I used to have a pretty high pain threshold (delivered 2 babies naturally, no pain relief) but I can't even straighten up after vacuuming now without involuntarily giving a little scream. I guess we're all different.

[bbest]

You mean to tell me this person is making statements about your health based on the opinion of a VET? I completely agree with Karen. It's no one else's business.

I had a similar experience with an in-law who upon learning of my diagnosis said " I read that scoliosis doesn't hurt" Implying that I must have been lying about the pain I had been in. I now know that some people are just like that. You can't change them. You can't educate them because they already know it all. That's what I love about this board, you can find people who know what you are experiencing.

[dying2die]

my doc

welll well well .. let alone a normal person .. i have my crazy doctor i went to hime yesterday and told him im in too much pain .. he says no ur not .. im like well i am inpain .. he says no ur not .. i was like well but i am ... " and he goes ok go swimming and cum to me after 6 months and if u still have pain i will do ur marrow scan .. and wjhile i was leaving he agasin says .. u dont have pain .. gosh .. i was liuke .. i wish he cud feel it for m e.. ppl are crazy .. ignore their negativities and accept the positive
God bless u .. amen

[Shari]

Hi HG,

We must be related!!! I think people with BIG mouths are just trying to hide their SMALL brains. It sounds to me like you're doing pretty darn good, so don't listen to them.

Shari

[LindaRacine]

OK...I need to vent this. I was talking with someone from my husband's family the other night and after seeing my x-rays and showing them to thier boss who is a vet, this person insisted that I had to have been in a lot of pain throughout my life and wanted to know why I hadn't had the surgery sooner. When I told them that I was never in a pain from my scoliosis and that was part of why I waited, they insisted that I was in pain, I just didn't know it, going so far as to say, "Yes, you were" each time I would say that I wasn't in pain at any time in my life.

Hi Heidi...

While it's ridiculous to think a vet knows anything about scoliosis (scoliosis is fairly rare in the animal world), I'd like to encourage you to look at this person's remarks from a different perspective. I think she may have been trying to be sympathetic to you, and might actually have been trying to compliment you by insinuating that you're braver than most.

Just a thought. :-)

Regards,
Linda

[HGD24]

Linda,
Thanks for the positive spin on this. I do see where you're coming from, but I've had other conversations like this in the past with this person; mostly during the first few weeks of my recovery where everything I did was no big deal because I should have been doing it all along anyway and the things I wasn't doing I should have been because it was time for me to "just get over it" (yes this person did say that to me at one point just a few weeks into my recovery when I was telling them about something that I wasn't able to do at that point). I learned real quick to only tell this person that I was feeling good anytime I talked to them. It saved me and my husband from getting the 3rd degree.

As for the vet angle...in this person's exact words "Vets are the elite in the medical field. People doctors are doctors who couldn't make it into veterinary school and settled for practicing on people instead." I'm a big talker and when this person said this to me...I could not even think of one thing to say in response. I can only imagine a ceramic plaque hanging over the front desk of the vet's office with that saying on it. I wonder if the vet puts that as his e-mail signature?

[JoAnn5]

Lol!! Some people you just have to laugh at and let continue in their own ignorance...

No need to 'cast pearls before swine'

[LindaRacine]

Hi Heidi...

I understand. My father's last wife was that sort of person. It took a long time, but I finally got to the point where nothing she said could get to me. When she said something, I just agreed. I didn't invest an ounce of care. She's a miserable, bitter person, and she didn't deserve to ever have the satisfaction of knowing that she got to me.

I actually believe vets are mostly really great doctors. I have several friends who are vets. Unless they specialize, they really have to know a lot, about a lot of different species of animals. It's a difficult job. However, I can guarantee that very few know much about the spine, let alone scoliosis.

So, just don't ever let this woman know that she can get to you. Be pleasant when you see her, but get away from her as fast as you can. :-)

Regards,
Linda

[sweetness514]

Wow..I wish I was at that stage, but my sister still gets to me, and I'm 35 I keep telling myself that I SHOULD get over all the nastiness and lack of compassion that comes from her, I'm getting there.. hehe. I try to not speak to or see her as much, too much negative energy.

As far as therapists, I went to see one at some point when my husband's health was not good after he had an accident and I was in a lot of pain at that time too, I just needed someone to talk to and who could tell me how to relax emotionally and not dwell on all the misfortune, but she kept on making me feel worse by saying that I NEEDED more friends and hobbies and we needed to go out as a couple a lot more, when at that point he really needed a lot of rest, he had suffered a head injury and had severe migraines and dizziness.

But I know that some therapists are good, it's just that a lot confuse you more at times. And speaking of vets, my cat died a few weeks ago, after we did everything we could to at least find out what was wrong with him, but after taking him to three vets; they all had different opinions. One said he had anemia, the other said possible kidney failure(wich I think b/c he was old and stopped eating many times, it was his time).

Anyway, I like this thread, and all the sharing Take it easy all