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Looking for Advice
An_223009 posted:
I'm not sure I'm in the right place or not, but this group was the closest to what I'm going through.

So, I had a surgery back in March 2009 to add inches to my lower left leg to correct a birth defect. I was under the impression that I would initially have the surgery and recover within 6 months tops. I had no idea that 21 months later, I would still be "recovering" from this event.
The first surgery in March went very well. I had an external fixator on my leg for 5 months, wore a cast for a month, then got my walking boot. Everything was supposed to get better and I should have been walking soon.
Unfortunetly a completely unforseen complication occured. During my rehabilitaion and recovery my leg was actually bending the opposite direction! I can't walk on a bent leg! there is no way! It took us (the doctor and myself) to determine that another surgery and more external fixators would have to be installed to correct the curveture in my leg.
June 2010 I had the surgery and shortly after, more complications. The pins supporting my leg had almost all become infected, and there was no real way to treat them. These wounds became larger and more inflamed and I was struggling every day to just make it through until the next. I had to keep the pins on until the bone healed and the pins could be removed, which meant 4 months wearing the fixator. This became more and more difficult for me to cope with since there was no way to treat the growing ulcers around the pins sights.
The end of Oct finally comes and we get to remove the pins!! I was excited to get rid of the damn metal gear and focus on my recovery, the only problem is my ankle still looks crooked to me. The doctor says it is because my muscles have tensed up in that position and need to relax in the straighter position. I can only really do that by standing on it, and that hurts since the muscles are so tense and I have lost ampel amounts of muscle in my lower leg.
I have been taking pain meds the whole time, but now he wants to cut me back, maybe even take me off of them completely and I'm not too confident that completely stopping the meds will be benificial to me. I only take one pill a day. Surprisingly that manages my pain. But if he wants me to continue to "straighten my own limb" I do not want to remove the meds completely.
I don't know what to do anymore. I can't work due to my condition, I haven't been able to do anything "fun" in almost 2 years, the meds are giving me mood swings, flu like symptoms from reducing my doseage and I feel utterly trapped.
Sorry this post was so long, I just wanted to explain the situation and possibly get some feedback.
Thanks for listening
bren_bren responded:
Hey Pixi,
Sounds like you have been down a rough road and the doctor doesn't no how to guide you to the proper way in your healing. I would let him know your average daily pain levels, when you need to take a pill, and the things you are able to do once you have the medication. You are taking very little, so I'm not certain why he is even discussing this. Surgeons don't like to prescribe long-term. That is usually addressed by a Pain Management specialist. Ask the doc that since your recovery has taken so long, if it would be beneficial to you...also have a talk about physical therapy/massage in order to get things back into place. I think passive interference is necessary along with your trying it on your own (in other words: someone forcing the leg/ankle to bend-passive).
I can relate in the lack of "fun" you describe that you have. It sucks. I can't go sit in a theatre, restaurant, and I get irritable waiting in line at the store. It is a dramatic lifestyle change. Just realize that there are others here to listen to you and you will be surprised at how much we all have in common.
Im here to offer support, if you decided to come back.
Much luck to you and your doctor. Peace, Bren
An_223010 replied to bren_bren's response:

Thank you for your advice. I will be seeing my doctor this week and hope to talk to him about a more agressive therapy treatment.
Things are difficult now, but it could be so much worse. I just have to count my blessings and make it through this ordeal.
I'll post a reply once I've seen my doctor.

Happy Holidays
bren_bren replied to An_223010's response:
hi there Pixi,
Sorry I haven't gotten back to you. I can't find enough time in the day to come to the board the majority of time.
I'm glad you found some insight in what I offered, and hope you are successful your next doc's visit. Please let us know how it goes and if you need some support. I know the changes you have had to make in your life can feel overwhelming. I moved at the time I was "trying" to work, but if I had stayed a little longer I am sure they would have dismissed me for absences beyond my control. I am even afraid to call back to get a reference from them because I barely worked for them the last year I was there. Pain will suck you dry: emotionally, physically, mentally...well, you get it. Just hang in there and rely on the element of distraction as much as possible. Treat yourself from time to time - good movie, great book, blast music in an otherwise empty house, eat a sundae or banana split, take a walk to the mailbox and back (if you can) over and point, find what works for you and what makes you feel better. Many people's pain is a result of an emotional response to the physical pain. I find that if I think about it too much, it hurts more. If I get sucked into a movie, I am more apt to ignore it.
Best wishes, and let me know what's up, Bren

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