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  • congenital deformity of sacrum and coccyx/tail bone removed/oxycodone addiction



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    Old 11-06-2008, 04:30 PM   #1
    Patty1982
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    Question congenital deformity of sacrum and coccyx/tail bone removed/oxycodone addiction

    Hello everybody! I found this sight yesterday and I'm very excited. I have read many of your stories and find it really moving and uplifting to know that there are others like me going through similar situations.
    Well, I will start off with my story because I need advice. I was born with a congenital deformity of my sacrum and coccyx. My tail bone was portruding out of my skin 2 years ago after I gave birth to my daughter. After seeing 10+ doctors in my area and being admitted into a top notch hospital in Chicago for two weeks I was left alone with no answers and no doctors that knew what to do. I did some research on the internet and found only one sight that dealt with coccyx issues. The closest doctor to me was in Detroit Michigan and I booked him. After a grueling 9 hour car ride he saw me and scheduled an immediate coccygectomy (tail bone removal) and sacrum shave down. Now, I am left disabled as the doctor took my tail bone off but didn't shave down my sacrum enough so, I now have a bone protuding out of the same area just a little higher and it's worse. I get bed soars, am in constant pain, have to sit and sleep on a boppy pillow, and every day normal activities are almost impossible. I have a GP here in Illinois and he is also my pain doctor. My problem is that I have been on 100mg control release oxycodone and 15mg immediate release oxy up to 5 times a day for almost a year now. This is the second time that my doctor has "up'd" the dose due to me running out early or just not getting enough pain releif. He says that "I'm not an addict. I have just built up a tollerance". Well, I think that is way far from the truth! I got my RX on the 24th of last month and I only have 8 control releases left and now I cant get a new RX until the 24th of this month. I am just besides myself and dont know what to do! Am I an addict? What do I do? I'm disabled and will need to be on meds for the rest of my life (supposedly! But I dont want to be!) and if I tell my doc the truth I am scared that he will just cut me off and make me detox because I signed a contract. Is there anybody who could give me some advice on what to do? I have detoxed before for 2 days before I got my RX and it was awful! I really felt like I was dyeing... Heart palipitations, passing out when I stood up, diareah etc....
    Thanks in advance for the advice!!!!!

     
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    Old 11-06-2008, 06:24 PM   #2
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    Re: congenital deformity of sacrum and coccyx/tail bone removed/oxycodone addiction

    Patty, I feel your pain. I have been diagnosed with coccyxdynia(which is a fancy way of saying tailbone pain) but my pain in the butt(so to speak) is in no way as bad as yours. I am on pain management for other things as well and will have to take pain meds the rest of my life. This isn't something I would have choosen, but it is what it is. I'm sorry your pain is not being covered. There is something called pseudo-addiction where a pain patient exhibits addictive behavior because they are not getting adequate pain control. Maybe this is what is going on. Only you know if you are taking the meds for pain or if you are taking them for other reasons. If you take them for pain only, then I would suggest trying to find a pain management doctor who understands tolerance. But please be careful, because you did sign a pain contract(and you probably will with a pain management doctor) and the docs take these very seriously.

    Now for the situation you are now in. What you have to consider is suffering for a few weeks until you can get your next refill, or going to your doc and risk him letting you go. If you are taking them for pain only, none of us get complete pain relief. I personally would do nothing to jeapordize the trust I have built up with my pain doc. I would suffer temporarily. I have been in bad pain and thought about taking one more to get better pain relief, but that would mean I would come up short and it just isn't worth it. Besides the point of pain management is to keep a steady level of pain meds in your system and if you keep taking them the way you are, your body cannot adjust and you are just making it worse on yourself.

    If you are taking them for other reasons and you think you are abusing them,(and I am not saying you are) you could try and find an addictionologist. From what you have said, you will need pain control and they are better equipped to deal with someone who has real pain and addiction issues.

    I can't really offer any help in the mean time as you will run out of meds. Others here should be able to help there. I am usually only on the chronic pain board, but your tail bone pain caught my eye since I have that too. It is very painful and I hope you can get some pain relief. It sounds to me like that pseudo-addiction, but you still have to be careful. A big red flag is running out early and most docs won't tolerate that especially with a pain contract.

    Take care
    Melissa

     
    Old 11-06-2008, 07:32 PM   #3
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    Re: congenital deformity of sacrum and coccyx/tail bone removed/oxycodone addiction

    Thank you for your reply. I too was diagnosed with coccydinia before my coccygectomy.
    I really dont want to go to another doctor for meds because I have a good relationship with mine. I have been very honest with him and the past two RX's I have recieved he has up'd the dose and increased the quantity. I just cant seem to stay on the right schedule per day. I see all of the pills in the bottle and think that I can take an extra one here or there and the next thing I know, I'm out of immediate releases and only have my control release med. I have thought about asking him to only give me a 2 week dose at a time instead of a whole month. I can then fill my daily RX layout to see that I only have so much and have to stick to my schedule. Does an addictionologist prescribe pain meds and help you stay on the right schedule? But, like I said I dont know if I am addicted mentally. I know that I am physically. That's why I have to take so much more for my pain to get relief. Anyways, thanks for your help!!!!!!! I think I will just suffer temporarily until I can get my RX. I'll just have to be honest with my doc when the time comes for dt's and am unable to handle it on my own. I refuse to go to these jerk ER doc's. It's not worth being called an addict and having something written in my file even though they can look @ my records and see my deformity on my past x-rays.
    HMMMMMMMMMMMMM.......................... .Mabey I need to go back to school and become a doctor that only specialises in the coccyx and sacrum area!!!!!!!!!!

     
    Old 11-07-2008, 10:29 AM   #4
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    Re: congenital deformity of sacrum and coccyx/tail bone removed/oxycodone addiction

    Patty,

    Holy Smokes what a burdon you bare! I am so sorry to hear you are going thru all of this. That is terrible.

    Sounds to me like you are doing a bit of self medicating when the pain is severe and what you were prescribed to take is not covering it... that is where it personally started for me... then turned into addiction. Now, I am not saying you are addicted.. just sounds similar to where I started out even though our situations are very different.

    I am a pain pill addict and have just completed my wean down program. I don't have to be on medication for my lifetime... I just unfortunetly really enjoyed taking them.. They made me feel like super wife, super worker, super woman really. It made me happy and I felt high and it turned into a BIG NASTY ADDICTION.. So.. what I can tell you is to BE CAREFUL... You are on a lot higher dose meds than what I was on but believe me.. if they would have upped mine I would have gladly taken it.. How pathetic is that. However, I chose to STOP and that is what i am doing.. Just watch yourself and take a GOOD look in the mirror and ask yourself... am I taking this to cover pain or am I taking this because I like the way it makes me feel mentally? I think that is where the difference was for me.
    Good luck to you and I will keep you in my prayers. Sounds like you have a lot on your plate.. Good luck to you and God Bless.
    ~Secrets

     
    Old 11-07-2008, 12:56 PM   #5
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    Re: congenital deformity of sacrum and coccyx/tail bone removed/oxycodone addiction

    Hey Patty, yeah an addictionologist will very carefully monitor your meds and keep you on a schedule. Your idea of going to 2 weeks is an option if your doc is willing to do that. Also on that note, if you tell him that you are struggling with your meds, and why you want to go to every 2 weeks, many docs will see that as a warning sign and either begin to wean you off or to drop you all together. And in todays climate it is so hard to find a good pain doc and you do not want anything on your record.

    I agree with you completely about the ER, that is not the place to go for pain of you are a pain patient on pain management. I unfortunately have to go often as I get huge kidney stones from my disease and I have no choice, but as the stones are easy to see, I don't get the drug seeking problem.

    So if you can, tough it out till you get your meds and then realize that by taking extra's you may be jeopardizing your pain management future. If what you have does not cover your pain, talk to your doc and if he will not help you, try and find a new one. If you still find yourself unable to follow the prescription, maybe then it is time to realize you are on shakey ground and get some help. I wish you all the best!

    Melissa

     
    Old 11-10-2008, 08:57 AM   #6
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    Re: congenital deformity of sacrum and coccyx/tail bone removed/oxycodone addiction

    Thank you both for your caring replies. I am not doing well at all. We were visiting my mother in law in Milwaukee over the weekend and my husband had to rush me to the ER. Like you Melissa, they thought I had a kidney stone but it turned out to be a BAD infection. I was basically urinating bright red! They gave me 15 5/325 percs but they are about gone. I am about ready to go to my Doc and tell him the truth. I've been going through withdrawl every night the past 3 nights and have been unable to sleep. But,if I go to the doc and tell him the truth I may have to face reality that he would wean me off and I'm scared of that as my pain is awful on a daily basis.
    Thanks for caring,
    Patty*
    P.S.Any ideas? I dont think I can continue going through withdrawl!

     
    Old 11-10-2008, 12:51 PM   #7
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    Re: congenital deformity of sacrum and coccyx/tail bone removed/oxycodone addiction

    Oh Patty,

    I am SO SORRY to hear what happened. I don't think that someone in your situation can be weaned off meds so you should be safe there.. You CAN'T be taken off meds when you have the issue's that you do have. I think that if you were honest with your Dr. maybe he/she could work closely with an addictionologist to better fill your needs.. I mean I don't know for sure but what I do know about are those HORRIBLE W/D! I am so sorry you are suffering right now.. It sounds to me like you have so much going on and you suffer enough as it is that I can't imagine you having to suffer more. I think you need to speak to your Dr. let them know your situation and tell them you need adjustments because what is occuring now is not working for you. They may wean you down to the dose they think you should be on BUT I couldn't imagine them taking you off meds completely.

    Hang in there and keep us posted with how you are doing.. You will be in my prayers! God Bless..
    ~Secrets

     
    Old 11-10-2008, 06:06 PM   #8
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    Re: congenital deformity of sacrum and coccyx/tail bone removed/oxycodone addiction

    Well, tomorrow's the BIG day!!! I made a 10AM appt. to see my doctor. I have decided to be honest with him and explain everything! That is all I can do and will hope for the best! Thanks for the support and will update after my appt in the morning!
    Patty

     
    Old 11-11-2008, 09:00 AM   #9
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    Re: congenital deformity of sacrum and coccyx/tail bone removed/oxycodone addiction

    Patty,

    HOLY SMOKES GOOD FOR YOU!!! I am so happy for you. I am sure it will not be easy and it will take a lot of courage but I know you can do this.. I think it will help you big time and it will be like a HUGE weight has been lifted off your chest!

    Well, I think your appointment is this morning so I will be here when you get back and I wish you luck!!!

    Sincerely,
    Secrets

     
    Old 11-11-2008, 09:27 AM   #10
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    Re: congenital deformity of sacrum and coccyx/tail bone removed/oxycodone addiction

    We all hope your doc appt went well. Keep us posted and you are in our thoughts.

     
    Old 11-11-2008, 02:36 PM   #11
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    Re: congenital deformity of sacrum and coccyx/tail bone removed/oxycodone addiction

    You back on yet Patty? Just was thinking about you and wondering how your appointment went! You are in my thoughts! Hope to hear from you soon!
    ~Secrets

     
    Old 11-11-2008, 06:24 PM   #12
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    Re: congenital deformity of sacrum and coccyx/tail bone removed/oxycodone addiction

    Patty, I just read your last post and sorry you had to go to the ER. I hope your appointment went well. Just so you know, there are docs out there who believe just because you have an addiction to pain meds that you shouldn't have to suffer. If your current doc decides he no longer wants to work with you, I suggest first off looking for an addictionologist and if you can't find one, keep looking for someone who is willing to treat your pain. I know it won't be easy and may take a long time,but as long as you are always honest, I think you will be OK.

    I don't remember if you mentioned this, but you may also want to try other ways, ways without pain meds to see if it helps. I would bet a lot of us use other ways in addition to the pain meds to help manage the pain as well. I hope your doc was nice to you and if not willing to continue prescribing, will taper you so you have some time to look at other options. I'm so sorry you are going through this and I know it may seem hopeless, but I have been using a mantra when my pain is so bad or my illness is acting up beyond what I think I can tolerate and that is, this will pass. It will get better, maybe not as soon as I want or how I want, but it ALWAYS gets better.

    Let us know how it wnet, we're thinking about you!
    Melissa

     
    Old 11-14-2008, 08:49 PM   #13
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    Re: congenital deformity of sacrum and coccyx/tail bone removed/oxycodone addiction

    Well,my doc decided to tell me that he wanted to start me on the fentanil patch but wouldnt write the script until my oxy script was due. So, needless to say, I admitted myself into a drug center to be detoxed. My doctor wanted me to go home with a Zanax script and detox on my own. I knew that I would be unable to do this in front of my two kids but he didnt care. He was too scared the DEA would catch the high amounts and quantities that he was prescribing to me. I am so glad that I detoxed there. I now have an addictionologist that is taking care of me and I have learned that my doctor no longer deserves my money or me as his patient. My papers that were sent back to him states "Pt was under detox protocol and was discharged with completing. She is not recommended for substance abuse treatment as she was unintentionally using at high levels her prescribed medications with amounts provided. She also indicated that she recognized her dependency on her medications prior, and had asked to discontinue these medications."
    If that doesnt say something to my doc, I dont know what will. I just hope that he doesnt do this to anyone else. My husband and I allready have a plan to sit down and talk with his boss on Monday(whom I am very close with). So, I'm sure the DEA will be involved in looking at his other cases also. I am going 2 be with hubby now. Will respond tomorrow 2 u all. Thanks 4 the support. It was nice coming home to that.
    Patty*

     
    Old 11-25-2008, 09:21 AM   #14
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    Re: congenital deformity of sacrum and coccyx/tail bone removed/oxycodone addiction

    Patty,

    Holy Smokes!!! I am so happy for you! I bet detox was not fun but I bet you feel great that you did it. I am so very proud of you for having the courage to do so. I think working a long with an addictionologist and a medical Dr. would be a great thing for you! I am just so happy for you and you sound so relieved!

    Obviously, that Dr. knew he was giving you too many meds if he requested you detox at home.

    The most important thing here is that you have gotten yourself to the level of meds you need to be on. You will probably feel much better even though you still have pain. Now.. the battle begins of will power and self control. At least that is how it worked for me. Once I got off all my meds it was so scary.

    I wish you so much success and happiness and of course some PAIN FREE DAYS! It doesn't sound like you get any of those... You will be in my thoughts and prayers!
    ~Secrets

     
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