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chikititalinda
01-24-2011, 10:33 AM
I have not posted here on a while, sorry just been reading alot trying to learn as much as I can about this horrible "thing" we have : (
I need to vent, as I dont think too many people understand what we are feeling, its good to have a place to come to where there is understanding and compassion and best of all information.
Im not sure what to think anymore. The first time I went to the Rothman Institute they were great, took their time with me and explained everything. Told me I was not a candidate for surgery for my Avascular Necrosis on my knee because of my blood clotting condition along with all my other health conditions. I went back a couple of weeks ago and all of a sudden he tells me he wants to do surgery (some kind of decompression) to restore the blood flow. When I told him he had specifically said no surgery because my clotting condition (factor V liedin) he said no it wasn't because of that its that we're not 100% it will work becuase there's extensive damage to the bones. I mean WTF???? make up your mind, they're suppose to be topnotch and I do like them, but not sure what to do. meanwhile my pain is getting worse and all the research I've been doing, leads to needing surgery. im really stressed out about all this : (

tgal
01-24-2011, 10:55 AM
You are right. This is the perfect place to come and vent! We have all done it at one time or another.

I think you are doing the only thing you can do which is educating yourself. I can't count the times one doctor has completed changed what another said and told me "no, that is not what he meant". YES IT WAS. I was there and I took notes! I know this is so frustrating and it is really hard to deal with but you are doing the right thing. Top notch or bottom of the barrel you can still get an idiot!

Wish I could help more but I just wanted you to know that I am here for you

magistramarla
01-24-2011, 10:56 AM
Hi Linda,
I read your post and just had to write back quickly. I also have AVN in my knee.
I was also given the run-around. The first ortho that I saw had a wait and see attitude. The second one did arthrosurgery. He trimmed the meniscus and shaved back the damaged bone.
I wasn't pain-free after six weeks as he expected, since I'm also dealing with RA and Psoriatic Arthritis, but it has helped.
From my research, I think that I'll eventually need more surgery, but at least I've been able to put it off.

Have you found the AVN online support group? Here's the site:
http://health.groups.yahoo.com/group/avnsupportgroupinternational/

The founder/moderator there is Marie. She is a lot like our own SaySusie. You can find some great info and advice about AVN there.

Good luck, and keep in touch with me. I definitely understand what you're going through.
Lots of Gentle Hugs,
Marla

chikititalinda
01-24-2011, 12:03 PM
Thanks Ladies...I found a support group for AVN but I had to pay, it wasn't alot, but none the less and I still couldn't find the answer as to why the pain comes and goes....Thanks for that link though, I'm going to check it out.

Angel Oliver
01-24-2011, 12:29 PM
Sorry you are going through this and so hope you get the right help soon.Lots of love.
Amanda.xxxx

chikititalinda
01-24-2011, 04:24 PM
Thanks Amanda