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wyarwehere

Looking for thoughts.

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hHi everyone, It's been a while, but school keeps me busy. Four weeks till finals are done. Can't wait. Anyways....

Let me give a short background, and then ask my question.

My sister is 23. Recently they did x-rays and realized her regular scoliosis has degenerated into double muscle scoliosis. In a nutshell, her pelvis is so messed up she won't be able to have kids naturally, and her ribs are pushing against her heart and lungs, giving her periods where it is difficult to breath. She's also experiencing periods where she will go partially numb. She is unable to ride in the car, play with the little sisters(8 and 12), or even tie her shoes. Her chiropractor is the one who did the x-rays and found this. Now he refuses to touch her.

He sent her to a scolosis clinic. She saw a PA there who said surgery was a last resort, the doctor took a look at the x-rays and said she needs surgery, and she needs it soon. Her PCP is sending her to PT, and to pain management. PT is making her hurt worse, and all pain management does is prescribe muscle relaxants. Those, combined with her being numb, have us afraid she will move wrong, and do serious damage, and won't realize it till too late. The rest of the doctors are giving her the run-around, sending her all over. In the meantime, her workplace refuses to let her back, meaning she has no income to pay for all of the additional copayments. They say she can come back after the surgery.

In my ward are several medical people, including an orthopedic surgeon, who is very well-known and very good. He's done surgery on different members, and has gone beyond regular duty. I was telling one of them about my sister, and she recommended I call him, because if I call the clinic, I'll never get thru to actually talk to him. Which I did, with some reservations. I know me, and what I would do were it reversed, but what do you think, is it wrong to ask someone like this for their help outside of convention? I don't want to overstep on his kindness, but at the same time, I almost hope my connections will help me sister. Make sense?

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I always have a hard time asking for help or opinions from someone that works in a particular field. I feel like it's taking unfair advantage of them when others have to pay for their services.

It's a tough one. I do understand wanting to find some kind of help for your sister.

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Not as far as I'm concerned it's not wrong. We did this just the other day on a medical matter. Several years ago DH was very sick and no medical person was able to find the answer. DH thought of a doctor he knew of and went right to the door and knocked on it. I would not get out of the car I was so embarrassed but the wife answered and told him to be at the office at a certain time and guess what? After others had failed this doctor found the problem!

Edited by Threadkiller

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Have you tried a chiropractor? I've had hip problems and then I got adjusted, but I was told because my muscles were so tight above my right hip that I needed some muscle therapy to strengthen the left side. If I didn't strengthen my left side my tight muscles would pull my right hip up.

Because of money, I never went back and that has happened. I also have noticed pain in my left knee because my left leg takes more impact when I walk run or jump.

I personally think that it is best to try the least invasive measures as much as possible. This would be one, and from what you described, be one I think would help. Surgery might make it so there is no chance for children but this would make it possible.

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Like I said earlier, the chiropractor doesn't want to touch her, he's afraid of making it worse. Plus there is the risk to her chest cavity because of how out of alignment it is. No doctor has even bothered ordering an MRI to see the extent of the damage/issue. My mother has started going to appointments to be an advocate since my sister isn't much of one

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oh sorry, i missed that line. I also had a cracked vertabrae from playing football, and the symptoms were similar(though the cause is obviously different), numbness particularly down my left leg, couldn't move my body in bed(had to turn on my side by using my arms and pulling my hips so it wouldn't hurt as bad), times when I could only move literally one inch forward at a time when I was walking, and I was incontinent. I did physical therapy to strengthen my muscles in my back and my core. When I did this the nerves, which were pinched, were alleviated. And my pain went down considerably until my back eventually healed during my mission.

I also had slight "muscle scoliosis" which was the result of me working out one side of my body a little two much and it pulled my spine out of alignment because the muscles were tighter.

What is the degree of the scoliosis 45 degrees? ACA - Scoliosis

Obviously you know the situation best but you could also find a new chiropractor to get a second opinion. Maybe he'd be willing to do spinal manipulation and work on muscle therapy. But as on the website if it's more than 45 degrees your more than likely going to be recommended for surgery.

As far as talking to the doctor, as long as you are up front with him wiith everything he is much less likely to have an issue with you calling him, if any. Tell him you were talking with a member who he had helped and she told you to call him specifically. I think at that point it isn't so much you've overstepped bounds but the member who gave you the suggestion. You are just following what you were told.

Best of luck to you! Back pain is no fun, and it sounds like she needs help, but I think she is gonna get what she needs.

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I don't think it is wrong to ask for help if you need it. Part of self reliance is knowing when to ask for help. Also we make covenants in the temple to use our talents to build up the kingdom of God. I know I have prayed for opportunities to use my talents to bless others. Maybe this doctor does the same?

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I asked, there's nothing he can do, scoliosis isn't in his area of specialty. And the only doctor in about a two hundred radius is out till February. So now' we're looking at the big hospitals about three hours away, Philly, Pittsburg, Baltimore, etc. If she has to go that far, my folks won't be able to stay with her. I'll probly leave school for a semester and make arrangement for my loans. Because I've been stuck for months in the hospital without my family, I refuse to allow that to happen to her.

If that happens, I don't know how I'll convince my mother

Edited by wyarwehere

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If the issue has gotten as severe as you say, it sounds like it's in a rare class that you will need to go to a large referral center. Pittsburgh, Baltimore, and Philly are good. Based on your geography, you may also look toward Vanderbilt (Nashville) and Cleveland*.

You need to get your local physicians to consult with more experienced physicians and find the right place to which to refer your sister.

* Full disclosure: I work for the Clinic. But our Orthopedics department is extremely good.

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Starting phone calls tomorrow, my sister found out today that because of the (mis)alignment of the rib cage, her esophagus is slowly starting to pinch off. My mom and I have had enough of these general doctors messing around. Two months ago they said surgery as soon as possible, now they're saying she has to wait another two and a half months to just see the specialist.

If the issue has gotten as severe as you say, it sounds like it's in a rare class that you will need to go to a large referral center. Pittsburgh, Baltimore, and Philly are good. Based on your geography, you may also look toward Vanderbilt (Nashville) and Cleveland*.

You need to get your local physicians to consult with more experienced physicians and find the right place to which to refer your sister.

* Full disclosure: I work for the Clinic. But our Orthopedics department is extremely good.

Do you know how Cleveland and/or Nashville would work with lodging. My friend in Baltimore said they have a place where you can sometimes stay, but they might not work for us since it's less than four hours one way. But that's still a long haul. Any my folks have a business and my younger sisters. Mine is the most flexible of schedules, but I'm not a parent, how would that work.?

And Gretchen, I don't have HT's. I've tried to get them a couple times, but I don't think the request has gotten to the right person yet.

Edited by wyarwehere

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