Avascular Necrosis...(rant)

[angela515]

I am SO frustrated right now. I feel like I want to scream to GOD, "Why me??" and just give up.. the pain is almost not even worth being on this earth somedays.

Little back story... When I was 14-16 yrs old I got AVN in my ankles only, they got so bad the only thing the doctor could do was an ankle fusion. So I have 2 screws in each ankle, which when it was first done, all my pain went away... and only just started a year ago.

So, since a year ago the pain in my ankles have came back, and increasingly getting worse, AND my knees hurt the same... so I finally went to see the Rheumatogist a few month's ago and got diagnosed with AVN in my ankles again and now in my knees. He says I need total knee replacements in both knees and ankle replacements in both ankles, so he sends me off to the Orthopedic specialist in Iowa City(2 1/2 hours away). I seen him today... and I totally had a horrible day and cried. He says there is nothing he can do, and I need to see a Rheumatologist... WTF??? I'm not playing freakin' circle games here. I called the Rheumatologist and spoke with his nurse... I explained there is NO way I am going to b a 28yr old single mom trying to chase my kids around when I can hardly walk and I feel like I'm in an 80yr old body. She says there's nothing that can be done according to the Dr but put me on narcotics. I do NOT want to live on Narcotics. First off, there addictive and eventually won't help any.. which is already starting.

So I called my transplant clinic, told them what was going on, and told them the pain meds I was currently on was no longer helping, so she wrote me a new prescription, very much stronger until they can figure out what we can do for me. She mentioned physical therapy and pain meds.

So, I need to find me an ankle doctor here in town because physical therapy will NOT help my ankles, they are FUSED, they don't freakin' move. So the only fix for my ankles is a total ankle replacement... as for my knees, I will seek a second opinion from someone in town, but I'm telling ya... the pain is SO bad I don't know how much longer I can deal with it. I can tolerate pain pretty damn good... but this is ridiculous.

Sorry, needed to vent... 

[okarol]

Angela,
That just sucks! I am so sorry. 

My husband was on narcotics for his chronic back pain - he finally had to get off them because his pain level kept increasing - and that meant MORE narcotics, til he could hardly function! It's a vicious cycle - tough to be on long term. The only solution for him is to minimize activity - that's hard to do with having young children (well, we did, but he had me to do the running and driving them!)

I hope you can get some help soon!

[Sluff]

That's just what this site is about..a place to vent..no apologies needed. Wish there was something I could do..at least I can listen. Hope you find a way to cope.

[kitkatz]

This is what we are here for to listen when you vent. Lord knows I vent all of the time on here.  I hope things get better soon.

[Ohio Buckeye]

Wow, Angela I'm sorry you are having so much pain.
I pray they can find something to help you.

[Jill D.]

Angela - sorry you had such a crap day. How far are you from Mayo? I'm just wondering, since they help many people that can't get help other places. Just a thought. I found out since my transplant that I have hip dysplasia that I was born with that I will need to have surgery on (my hip has bothered me for years, but got much worse in the last couple of years...I'm sure the hyperparathyroid didn't help matters.) Anyway, I'm thinking that I will try and see an Orthopedic surgeon when I go back out to Mayo for my 1-year follow-up. They take more of a whole-body approach, which makes sense to me.
Anyway, I hope somehow, somewhere you can get some help!

[Amanda From OZ]

Crappy! I;m sorry to hear your having so much pain and discomfort.

I hope the doctors can find a good solution that suits you.

Thinking of you.

Amanda
xxoo

 

[angela515]

Thanks all 

[jbeany]

Hang in there, ang!
 

[okarol]

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a part of the Department of Health and Human Services --

Aside from injury, one of the most common causes of osteonecrosis is the use of corticosteroid medications such as prednisone. Corticosteroids are commonly used to treat inflammatory diseases such as systemic lupus erythematosus, rheumatoid arthritis, inflammatory bowl disease, severe asthma, and vasculitis. Studies suggest that long-term use of oral or intravenous (IV) corticosteroids is associated with nontraumatic osteonecrosis. Patients should discuss concerns about steroid use with their doctor.

Doctors are not sure exactly why the use of corticosteroids sometimes leads to osteonecrosis. They speculate that the drugs may interfere with the body’s ability to break down fatty substances called lipids. These substances then build up in and clog the blood vessels, causing them to narrow and to reduce the amount of blood that gets to the bone. Some studies suggest that corticosteroid-related osteonecrosis is more severe and more likely to affect both hips (when occurring in the hip) than osteonecrosis resulting from other causes.

More info about symptoms and treatment here: http://www.niams.nih.gov/hi/topics/osteonecrosis/index.htm

[angela515]

Yeah.... the doctor's don't want to do a knee replacement because of my age... should be MY choice.... I don't wanna be living on these damn painkillers. I ain't seen the ankle doctor yet, but since I have my ankles fused I can't do PT for my ankles cause they don't bend... so they will most likely (I Hope) have to do ankle replacements no matter my age. *crosses fingers*

[angela515]

I am very frustrated. I don't know if I want to scream or just break down and cry, maybe both.

I went and saw an ankle specialist Monday. He did x-rays, and seen my ankle fusion, commented on how perfectly done it was and how he has never seen one done so well. He asked who did it, I said his name, he said wow, your lucky to have gotten him, he's one of the best in the country... I was like, I know. He then told me he don't want to do an ankle replacement on me because the fusion is so perfect, he don't want to mess with it. This made my heart sink. I almost wanted to break down and cry right there. I told him, look.. SOMETHING needs to be done.. yes, the fusion was perfect, and yes it did take away my pain for 11 years, however, my AVN is back, and doing it's thing again and now I am in pain.. so much pain I cannot go without pain medications, and the one's I am taking now, do not even do anything for me really, and I am taking MORPHINE. I told him I cannot and will not live on pain killers, especially when they are doing more damage then good. He then said he wanted copy's of my DEXA scan I had done to actually see the damage the AVN is doing (because that don't show up on x-rays) and then we would go from there. He says he will most likely want to start with an ankle braces to see if that will help me. 

I almost am thinking about talking to my transplant surgeon my next visit to see if he can put me on prednisone for a couple weeks to see if it takes the pain away, even though it also will worsen my AVN in the long run, it's going to get worse on it's own anyway, I would rather be able to walk without wanting to cry for awhile if I can.

I just don't know what to do right now.... I am going to be calling Medicare and find out if I pay for my own way to Florida would Medicare cover my Dr visit since Medicare is a government program and in every state... it's not a local insurance. If they will, I will be making an appt with the Dr who did my fusion and see what he suggests to do b/c I cannot live with this pain much longer... I have 2 kids I have to take care of... and I can barely walk to my own bathroom half the time without crying from hurting so bad.


THIS SUCKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[kitkatz]

Yes, it sucks!

[willieandwinnie]

I'm so sorry angela515.

I hope they can find something that will give you some relief.

willieandwinnie

[MyssAnne]

Oh Ang. How frustrating. I cannot imagine how painful that must be, to be on morphine.  Man, I hope you get some relief, and soon. Let us know what you find out, honey.

[paris]

I am sorry Angela.  I want to cry with you. We can feel how much pain you are in.  Can you call the dr. in Florida and at least talk to him?  You have been through so much

[Black]

Oh, that is awful.  I know you were hoping for good news.  Looks like you are checking all of the options.  Maybe the doc in FL can help but the Mayo suggestion looked good to me - Dad has been to Mayo twice and they were WONDERFUL both times.  Please keep us posted and you will be on my prayers.

[Rerun]

I would insist on seeing the guy who did the fusion.  He must have some ideas on how to fix this.

I would be crying too.   

[Wattle]

I agree with Rerun.

Hugs Angela   

[Jill D.]

I'm so sorry you have to go through this s_ _ _ Angela. Big hugs to you 

[Sunny]

Angela, I'm so sorry for your pain. Following up with the doctor who did the initial ankle fusion sounds like a good way to proceed.I hope that works out. If not, second opinions from somewhere! There's got to be a better answer for you from the medical profession. I cannot imagine what it is like to chase after young kids with the kind of pain you describe. Your kids are very lucky you are so caring. Hang in there.

[lola]

Ang so sorry Hun. I know when Otto's hips got bad he was 23 and nobody wanted to do a hip replacement because of his age, but there were no other options he could barely walk. He had them re-done when he was 32 they say they last 10 yrs. If you want the replacement stay on them and let them know if you become addicted to pain meds they can care for your kids when you go into rehab(hehe) bet they'll listen then.

[Amanda From OZ]

Angela I'm so sorry you have to go through that pain., You have been through so much.. you don't need this... its not fair.

I hope things somehow improve. 

Amanda
xxoo

[Krisna]

I'm so sorry you have to go through this in addition to everthing else!  I will be praying for you!   

[charee]

thinking of you Angela hang in there