Avascular Necrosis...(rant)

[goofynina]

How ya doing Angela?  Just thinking of you girlfriend and sending good thoughts and prayers your way    I can imagine how frustrating it is having to go though all of this, i hope they do something to help you 

[angela515]

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!

[okarol]

  Give 'em hell Angela!

[Amanda From OZ]

I agree with okarol... Give them hell for sure! I'm known for that at the hospital! 

Good luck. 

[MyssAnne]

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!!!

[angela515]

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. 

[MyssAnne]

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!!   

[angela515]

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. 

I'm glad to get he process started of seeing what my options are.

[paris]

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.

[angela515]

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. 

[MyssAnne]

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!!

[paris]

Good news Angela.  I think the pain management doctor is a great idea.  Hopefully, this will give you some much needed relief.

[Red from Canada]

Thank goodness there is something that will help with the pain.  You have WAY too much on your plate.  Good luck with this Angela.

[okarol]

I hope you keep pushing for a solution to your ankles. Long term pain medication is not good for you! 

[angela515]

I hope you keep pushing for a solution to your ankles. Long term pain medication is not good for you! 

Yep, that's why I have an appt with the surgeon Wednesday. 

[frankieb]

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.     Peace,  Frankie   
                                                             

[angela515]

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.     Peace,  Frankie   
                                                             

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.

 

[angela515]

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.

[MyssAnne]

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!!!

 

[xtrememoosetrax]

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.   

P.S.  I hope the ice melts soon!!

[Sunny]

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.

[Black]

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!! )  Orthotics/braces can make a huge difference.  Keep us posted.

[goofynina]

Hope that brace works and brings you some relief from that pain your experiencing Angela 

[okarol]

  Glad you will have some relief Angela. 

[angela515]

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: