i was told today i need surgery immediately or might lose my leg...
i went into shock...got real scared...cried...and tried to argue with the doc that my hands hurt more than my leg and that i am ok with staying in a wheel chair forever...but i dont want to risk dying or infection or cut nerves etc etc but he still insists it must be done
so i googled it...and came up with the link above. really sounds scarey to me...and i would love to hear from anyone who has had experiecne or has thoughts...i especailly dont understand what would make me need amputation?
i have so many questions and know the surgeon is important and his time is valuable but i am not getting my questions answerd in a way i can understand and i dont like being rushed into this
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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sparkle7
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Can you get a second opinion? Seems like they are scaring people into operations these days... look at Angelina Jolie. There's no way I would do that.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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lpkayak
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yes-i plan to get a second opinion. im a little worried about making the surgeon mad at me...i have had trouble with different docs and hospitals sharing records...but they are supposed to do it and if he gives me trouble...that means something too.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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sparkle7
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I think it would be considered unethical if he didn't allow for a second or third opinion. I wouldn't want some egomanic JA operating on my knee... Just my opinion.
Make sure to get a second opinion from someone with a different perspective. I know they can try to dissuade you but it's your knee & you will have to live with it.
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lpkayak
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or die...thats kinda whats freakin me out...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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sparkle7
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I don't like it when doctors play God. I would try to find someone else. They scare you because they can get a new Mercedes faster that way... How else would they be able to afford their extravagant lifestyles?
Who knows? Maybe he has a drug habit or gambling debt? Sorry - I don't mean to be so cynical but that's the reality of it at times. You have to research it.
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sparkle7
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What exactly did they say was wrong with your knee?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Carol in PA
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Woah there, back up a bit.
Why would you die without the surgery? Is there an infection that might spread throughout the body?
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Depending on who the doctor works for, they can be pushed by their employer to get more surgeries to do, and so they get desperate and try to rush you into surgery before another doctor can give you a 2nd opinion.
If they get insulted that you want a 2nd opinion, that is a good sign that you don't want to go with them.
Find a doctor that will take the time to answer your questions and will not rush you into surgery if it is not an emergency.
I have been through 7 surgeries between 2009 and 2011, and have met every kind. Don't let anyone operate on you that you don't know you can trust!
Posts: 123 | From Pawleys Island SC | Registered: Mar 2013
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I am an OR nurse and I work IN the OR. I have never heard that they would have to amputate someone's leg over a "revision".
Those are done if you are having pain, if there is infection or if you are unhappy with your mobility(which leads back to having pain usually).
Unless your blood vessels are being compromised or there is extensive nerve damage(and that one is questionable) there would be no need for amputation outside of infection they couldn't get under control. And they would not want to do a revision with infection present anyway.
They treat the infection first, almost always. I have been an OR nurse for 15 years with a strong background in ortho.
This is just my thoughts and opinion, but don't let a surgeon or anyone push you into something you are not comfortable with or don't understand. It is YOUR body!!!!
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lpkayak
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Orrn. i will pm you when I get back to my computer thanks to everyone here
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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i'm sorry i said some things wrong...the doc did say i would lose my leg if i didnt do surgery right away...he said that because going into that appointment my goal was to get a letter for my workers comp hearing tomorrow---and i was not prepared to hear i need surgery "now" so i kept refusing. he couldnt talk me into it so mentioned losing the leg.
after many hours on the phone yesterday with many staff i understand he did that to get my attention cuz i wasnt listening-what he meant was IF i dont get the surg THEN i would be in danger of losing the leg cuz when the knee slips and is in the wrong position it puts stress on the bone and either/or both: bone breaks down and gets unhelathy and fractures occur.
then it is much harder to do a successful revision.
he can see the beginning of fractures on xray and i think bone scan. so soon is importatnt
what is maddening is this happened last nov . i have been trying to find answers since then. i had a major test done in january and the doc was not able to read it until yesterday ... the hosp that did the test was not cooperating with the doc cuz he didnt practice there...i suspect this is illeagal but i tried so hard to get this fixed and couldnt til yesterday. 7 months.
when he saw that he ordered specific xrays and had the whole pic
this doc is very good at what he does and i would say he is confident but not arrogant at all and not that egotistical...but you know-going into surg i want someone who is confident and a little ego is ok. he has never been arrogant like the many ducks we have all dealt with.
but i was fighting for 6 months to say "something is wrong-this is a big pain and i dont complain about little pain"-i often said it feels like it is going to break right here...i could have drawn a marker line exactly where-but without seeing the correct test results they kept saying...we dont see a way to fix this we dont see anything wrong...then when they finally got them i have been making it worse for 6 months cuz i kept hearing them say there is notheing wrong so i pushed thru
and the back PT i have had has made it worse. twice kicking put me in leg crisis...i kept telling them it had slipped...cuz an xray the back doc took showed that...but he only wrote orders for the back...did not mention the knee and sent me to knee doc again but it took months to get to him and to get tests readable.
also at rotator PT in december that gave me a steroid shot that put me in a flare of the leg...but no one seemed to put it together except i reacted wierd to therapy
i am slowly starting to trust myself and get all the orig docs comments about "it being in my head" out of my brain. twice now i have had fractured pelvis and docs said no. once aget 3 months i asked what if it is cancer...he finally took and xray and laughinly told me...well you did have a fracture about 3 months ago and it is healing fine...this after me pushing thru the pain all that time cuz they said nothing wrong. the secone dtime they did and xra and it was neg and again i pused thru pain and then months later an unrelated bone scan showed it..but the doc didnt tell me cuz he was looking at my knee not my pelvis!!!! i didnt know until i got the report in my hands and the guy who read it kept saying"theres no report of pevis pain but i cannot rule out fracture of pelvis " and he urged docs to follow up on this...but no---they are so focused...which makes them good at the particular task they do...they dont see what is right in front of them. '
i did call this doc on that...and i know he felt bad...i hope it will change his behavior in the future and save someone else
what a mess, huh? i went 15 yrs knowing i had lyme and unable to get docs to agree and treat...guess i shouldnt complain about 7 months.
thank you for your concern. im sorry i was an alarmist. i really didnt mean to be...i was upset-he exagerated and i didnthear him correctly cuz i was upset.
he never said anything about dying but i did. i hate it everytime you have surg you have to sigh its ok if you die. you wont hold anyone responsible. it happens. i hate that...ive had many surg's and always know i need my affairs in order cuz i might not come back...when i cried i dont want to die in front of him he was really taken aback...he visibally shuddered...that was me over reacting i guess. but i hate the truth that you can die from even the simplist surgery. but you can die on the road too i guess. so sorry about that part. my bad.
and again thx for the support.
i dont know if anyone will be bored enoguh to read all of this but that is my story...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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Orrn. when I get back thanks to thanks to everyonehere
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Kayak.. you are not an alarmist. You are human. All of that reaction is perfectly understandable in your situation!!
I hope you can get it all worked out. I will continue to keep you in my prayers.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sparkle7
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I'm not against surgery or anything that can be helpful - just study your options & consider it thoroughly.
Why did they wait so long to get your X-rays to your doctor - especially since it's so critical that you get treatment...?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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"... the hosp that did the test was not cooperating with the doc cuz he didnt practice there...i suspect this is illeagal but i tried so hard to get this fixed and couldnt til yesterday. 7 months."
She really got the run-around.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Carol in PA
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posted
I saw on the other thread that your knee surgery is scheduled for the middle of July, six weeks away.
What is the problem with the implant? Is the bone not holding it properly? Getting loose?
If that's the problem, you may be able to get the bone to grow stronger by treating it with magnetic pulses. This has been used extensively to help bone fractures heal quickly.
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