I Hate Dialysis Message Board
Off-Topic => Other Severe Medical Conditions => Topic started by: angela515 on August 07, 2007, 02:37:12 PM
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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... :rant;
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Angela,
That just sucks! I am so sorry. :cuddle;
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!
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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. :grouphug;
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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.
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Wow, Angela I'm sorry you are having so much pain.
I pray they can find something to help you.
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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! :cuddle;
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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
:grouphug;
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Thanks all :grouphug;
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Hang in there, ang!
:grouphug;
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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
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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*
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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. :banghead; :banghead; 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. :banghead;
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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Yes, it sucks!
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I'm so sorry angela515.
I hope they can find something that will give you some relief.
willieandwinnie
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Oh Ang. How frustrating. :banghead; 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.
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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 :grouphug; :grouphug;
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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.
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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. :cuddle;
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I agree with Rerun.
Hugs Angela :cuddle; :cuddle; :cuddle;
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I'm so sorry you have to go through this s_ _ _ Angela. Big hugs to you :grouphug;
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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.
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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. :cuddle;
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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. :grouphug;
Amanda
xxoo
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I'm so sorry you have to go through this in addition to everthing else! I will be praying for you! :grouphug;
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thinking of you Angela hang in there :cuddle;
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How ya doing Angela? Just thinking of you girlfriend and sending good thoughts and prayers your way :cuddle; I can imagine how frustrating it is having to go though all of this, i hope they do something to help you :2thumbsup;
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Found some old crutches of my moms, and used them some today my left ankle hurts so bad I can't barely put weight on it. I'm calling all dr's tmr and demanding something be started and it goes my way... i'm the patient, it should be MY choice! :(
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>:D Give 'em hell Angela!
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I agree with okarol... Give them hell for sure! I'm known for that at the hospital! ;D
Good luck. :cuddle;
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Go for it Angela!!! You are right, YOU are in charge, darn it, not them!!!! You have children, you don't NEED this sh&&!!!! Hang in there honey, you've got us rooting for you!!! :grouphug;
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I called my transplant team to try and help me, since every Dr I see about my ankles don't want to do anything.... they have finally come through (I hope) today. The nurse called me, and she is going to send me to Iowa Orthopedics. They recently sent another transplant patient there for AVN in his ankles describing pain like mine, and they did a surgery (she don't know exactly what they did, but she does know it wasn't a joint replacement), but he is now pain free.. So, it's definitely worth a shot to go see these people. She is calling to schedule an appointment and will call me back when she gets one. I'm sure it won't be until January unless I am just truly lucky, but I'm just glad she has found someone who will DO something.
I'll report back when I get more information. :grouphug;
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Oh man!! I hope it works for you Angela!
AND I hope it is SOON too!! January is
such a long time away when you're
in pain, darn it!! :grouphug;
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I have an appointment with the Pain dr for the surgeons group on Monday @3:00, and the Orthopedic surgeon on Wednesday @ 1:45. She called and squeezed me in, so I can't miss them or I will be re-scheduled in January or later.. soo.. I'm NOT mssing them. :lol;
I'm glad to get he process started of seeing what my options are. :thumbup;
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Angels, I am glad they are trying to find an answer for you. Keep us posted. Hope you have a little less pain in the meantime.
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I seen the pain doctor today. He wrote me a prescription for Fentanyl, which is a very strong pain medicine and it's a patch. You wear it for 72 hours at a time (3 days). I will pick it up tomorrow from my pharmacy, so tonight I will still take my morphine. Once I start the Fentanyl patch it takes 12 hours to start working, and I have to stop the morphine. He started me on the lowest dose there is, and after 2 patches, 6 days, I will call them and let them know if it is helping with my pain or not. If it's not, he will have me wear 2 patches at a time for 6 days and call again and so on, until we find the right dosage that works for me. Once we get the dosage that works for me he will then order the patches in that strength. I will be stopping the morphine because the Fentanyl is a pain medicine that continually goes into your body 24/7 and does not have ups and downs of wearing off and so forth.
I will work with this pain doctor until I have a fix for the pain, so basically he will be managing my pain until it is able to be fixed and gone. The good thing is the pain doctor and the surgeon all work in the same group, so they will be working together in managing my pain and fixing the problem.
I see the surgeon Wednesday, who may be able to help me, and if not he will make me an appt with the other guy in the group who does ankles only. I am seeing this guy because it was very short notice and they fit me in to see me. So I'll update this again Wednesday. :thumbup;
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Oh, hon. I'm just glad there is SOMETHING being done. First the pain, then we can start thinkng of Wednesday, and getting the ankles FIXED!!
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Good news Angela. I think the pain management doctor is a great idea. Hopefully, this will give you some much needed relief.
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Thank goodness there is something that will help with the pain. You have WAY too much on your plate. Good luck with this Angela.
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I hope you keep pushing for a solution to your ankles. Long term pain medication is not good for you! :cuddle;
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I hope you keep pushing for a solution to your ankles. Long term pain medication is not good for you! :cuddle;
Yep, that's why I have an appt with the surgeon Wednesday. 8)
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Angela, I felt your pain, so sorry you have to go through it. I was dx'd with AVN back in '97, and subsequently had multiple joint replacements over the years including ankles and knees. I hope you don't mind me asking but where exactly is your pain? Are you considering joint replacement? I have total ankle replacements with my sub-talor joints partially fused. Enough about me, how was your meeting with your surgeon? What's he going to do for you? My thoughts and prayers are with you, hang in there. :cuddle; Peace, Frankie 8)
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Angela, I felt your pain, so sorry you have to go through it. I was dx'd with AVN back in '97, and subsequently had multiple joint replacements over the years including ankles and knees. I hope you don't mind me asking but where exactly is your pain? Are you considering joint replacement? I have total ankle replacements with my sub-talor joints partially fused. Enough about me, how was your meeting with your surgeon? What's he going to do for you? My thoughts and prayers are with you, hang in there. :cuddle; Peace, Frankie 8)
My pain is directly around my ankle joint where the ankle bends.. it's where I have my bilateral ankle fusion in both ankles. Right now, unless this surgeon says otherwise, a joint replacement don't seem to be an option from what I have been hearing b/c everyone who looks at my x-rays and all that says my fusion looks absolutely freakin' perfect, which it is.. and I love my surgeon who did it. According to the guy I saw the day before Thanksgiving, he says from what he see's on my tests is the pain is probably being caused by the joints around the fusion since the joint thats fused itself no longer moves the joints around it had to endure all the work for the last 12 years and they looks very run down with AVN and such. I see my new Ankle surgeon guy on Dec 11th... once I see him, I'll post what he says.
:grouphug;
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I went and saw the ankle doctor today (yes, even through the ice storm!!!).. I didn't get the news I hoped for, but I didfinally get an answer at least. I have 2 options. Option 1, they an fuse the remaining joints in my ankles that is causing the pain but if they do that I will never be able to walk again since all my joints in my ankles would be fused at that time. Secondly, there would be no guarantee the pain would be gone. Obviously, I am not choosing this option because I am only 29, and I have two small children to take care of, I need to walk. Option 2, they can fit me for a special brace specifically made to help take the pressure off the remaining joints and it's discreet enough that I would still be able to wear any shoe like usual and nobody would even know I was wearing a brace. This option also won't take away all the pain, so I will remain on pain management forever. This was my choice as obviously I need to walk and am way too young to not be walking.
I made this doctor call the surgeon in Florida so I could hear it from him that these were my only options, and he did that for me. If I were to find a doctor dumb enough to do a total ankle replacement on my fused ankles, there would be a 90% chance it wouldn't even work and I would end up with an ankle amputation as they wouldn't be able to refuse the ankles. So there is NO way I would ever choose this route. I was actually lucky enough, if you want to call it that, to speak with a patient currently there that day being scheduled for an amputation as he did choose that route from a different doctor. That right there was more than enough to seal my decision.
The doctor then numbed my right ankle with the freezing numbing spray and stuck a huge needle in my ankle and injected me with numbing medicine. He then waited 5 minutes for it to get around my whole ankle and asked my to walk around and see if I noticed any reduction in pain, I did. That means that a brace taking some pressure off those joints could most likely help with reducing my pain.
So, I have my prescription to go get myself measured and fitted for a brace and they will then make it and I will get to go get it a couple weeks after the initial visit and hopefully they help. I tried to go get it done today, but because of the ice storm the brace place was closed as most places were today, so I shall do it another day. I also got a new prescription for my Fentanyl that I will pick up tomorrow as the pharmacy was closed today also. My current dose of the Fentanyl is wearing 2 patches of 12mcgs. The new dose starting tomorrow is wearing 1 patch of 25mcgs and 1 patch of 12mcgs, I hope this helps.
Thats my update.
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Angela, I had wondered what you would find out and I'm glad it's something that's workable!!! And discreet....
You are so right, at 29, you do NOT need to have your ankles fused and unworkable, not with your two angels to look after!!!
Let us know how the measuring goes, and how the braces are when you get them!!! Heck, take a picture for us!!!
:cuddle;
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Just picked up this thread . . .
Angela, I'm so sorry to hear that you've been in so much pain for so long. It sounds awful. I wish you had more and better options, but I'm hoping that the brace will help. Hang in there until you get it, okay? I'll be thinking about you. :cuddle;
P.S. I hope the ice melts soon!!
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You sound like you have made a good choice for yourself. The best option out there for you right now. Who knows, maybe the future will bring new science technology. Hope the fitting goes well so you can be off to a good start in the new year.
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Thanks for the update. There were not a lot of good choices but it seems you made the one best for you. (Congrats on being so proactive in your care!! :clap; ) Orthotics/braces can make a huge difference. Keep us posted.
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Hope that brace works and brings you some relief from that pain your experiencing Angela :cuddle;
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:waving; Glad you will have some relief Angela. :cuddle;
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I got my braces today. They do take away almost all if not all sometimes, of my pain.. however, they hurt like a bitch. They are the type of braces that you have to break in, and it can takes weeks/months depending on how often you can wear them and how long of a time you can wear them at one time to break them in. I'm supposed to wear them 1 hour, and take them off for an hour, then wear them 1 hour + however long I can and break an hour (or longer, just always a min of 1 hour break..).. So far I have worn them 1 hour straight walking, and oh man did they hurt! The pain was all from "new brace pain rubbing my bones" though, and not my normal type of pain, so that is a great sign! I'm looking forward to updating this thread once I have broken them in and I can have great comments and little pain to give hope to anyone in my situation. Here is some pics of the braces:
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Kewl!!!! How do they work? Are they rigid all the way up your calf, or do you have some flexibility in your ankles?
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I still have what little flexability I had before putting on the braces, they take control when you stand on them and walk, they take all the pressure off of my joints that I have remaining so they aren't getting the brunt of all my weight and that helps with the pain.
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YAY!! That is wonderful.... when they finally get broken in!
They do look cool, not at all what I had envisioned!
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They are VERY discreet. They fit under my jeans or whatever I'm wearing and nobody even knows I am wearing them... which is what I like most, :lol;
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Hope the braces work and bring you some pain relief.
:cuddle;
Amanda
xxoo
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Yay! It sounds like this may work for you. I hope so. The braces need a little breaking in, then they should be confortable and get the job done.