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  • Hi all. I'm a newbie with questions about pain pump and thoracic problems

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    Old 12-23-2003, 11:04 AM   #1
    Kayley
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    Hi all. I'm a newbie with questions about pain pump and thoracic problems

    Hi All!
    I just joined today, but I've been reading posts here for several weeks. I've been in chronic pain for two and a half years. I'll try to make a long story as short as I can. It all started with severe pain in my chest wall on the right side. I had had a breast biopsy a few weeks before this started, so naturally I thought the pain was from that. So I went back to my surgeon, and he said I had mastitis. When the pain persisted, I went several surgeons, who were all puzzled as to what was wrong. I finally got a diagnosis of costochondritis. So I had intercostal blocks, which didn't help at all. Finally, I begged the surgeon who had diagnosed me to put me in the hospital so I could get tests without waiting so long because I was in agony. In the hospital, I had an mri, which showed a small herniation at t6 and t7. So I was put on pain meds. Now I knew the diagnosis of costochondritis was wrong. I went to several more surgeons and a pain clinic, and most of the doctors treated me like it was all in my head. Several said the herniation didn't line up with my pain. I had a mylogram, and was told I was not a surgical candidate. Finally, a surgeon recommended a spinal stimulator. The trial went great, I had 80% relief, so I went on to have the permanent one installed. I don't know why, but I was put to sleep for that surgery, and when I woke up, the stimulation was going toward my left chest wall, which didn't do much good, as most of my pain was on the right side. So the surgeon told me he could install a larger lead, which would give me more of a chance of success. So I went ahead with the third surgery. I had alot of post op pain after that in my upper back, but after a month, I seemed to be improving, so my primary doctor started tapering my pain meds. I went into withdrawal, so he suggested a rehab clinic. I went to the clinic, and they reduced my meds in there drastically, so I started having severe pain again. The rehab clinic sent me downstairs to the pain clinic, where I met the pain management doctor I still see. He told me I did not belong in rehab. He put me on methadone and oxycontin. When my upper back started worsening, he suggested taking the stimulator out. He thought maybe the stimulator was causing my upper back pain. So he removed the stimulator, but left the lead in, because he couldn't figure out how to remove it. I felt a little better for a short while, and was almost totally off the meds, when the pain started getting worse. So he increased my meds, and switched me to dilaudid, along with the methadone. This doctor believes my pain is from the herniation, which was caused by a large candy display falling on my chest at work. I saw a neurosurgeon who told me the only doctor that can help me is in Phoenix, AZ. because this type of herniation is very rare, and very few doctors work on this area. So I'm now trying to get insurance to approve me to go see him. My pain management doctor said if I decide against this surgery, or if it fails, he wants to install a morphine pump, which I am scared of, because everytime I get cut into, I seem to get worse. So I really don't think I want that. I am currently on 105 mg of methadone per day, and 12 mg dilaudid 3 or 4 times per day. Lately, the meds are no longer working well for me, so the doctor says the pump is my only option for pain relief. But as I said, I am so scared. So that is my story in a nutshell. I wonder if any of you have or know of anyone with thoracic herniations or pain. I have never heard of anyone else with this. Thank you for reading my story. Kaylee

     
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    Old 12-24-2003, 01:09 PM   #2
    cdaus
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    Re: Hi all. I'm a newbie with questions about pain pump and thoracic problems

    This is quite an ordeal you have been through. I don't have the answer but maybe somebody reading your post can come up with something. Good Luck

     
    Old 12-25-2003, 09:52 AM   #3
    Kayley
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    Re: Hi all. I'm a newbie with questions about pain pump and thoracic problems

    Sam,
    Thank you for replying to my message. I am so glad to finally meet someone with thoracic problems. Not that I'd wish it on anyone, it's just so rare, as you know. You said you have an implanted pump connected to a spinal catheter. I'm not very informed on these things. Is that the same as a pain pump? I also wondered if you have been able to increase your activity level. I am very limited in my activities, even riding in the car increases my pain. I will not consent to the pump until all avenues have been exhausted. I want to at least talk to the specialist in Phoenix, even if I don't have the surgery. And even then, I'm very scared of any invasive procedure because of the problems in the past. Thank you so much for the information. I hope you have a happy holiday season. Kayley

     
    Old 12-25-2003, 06:43 PM   #4
    Kayley
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    Re: Hi all. I'm a newbie with questions about pain pump and thoracic problems

    Hi Sam, thank you for answering my questions. The doctor I'm trying to see in Phoenix is a neurosurgeon, and he specializes in thorasic herniations. It is just a lot of red tape trying to get my insurance company to approve it. So I don't know when that will be worked out. You have eased my mind some about the pump. I'm still afraid, but not so much as I was. And I will go to Phoenix first. Then if that fails, maybe try the pump. I've read that sometimes they send you to a psychologist before they will implant it. My doctor didn't say anything about that, so I don't know if he does that or not. Right not I don't think I would be mentally ready for it, but maybe later on that will change. Like I said, every time I get my back cut into, the pain increases. My back didn't even hurt at all before the stimulator surgery. My pain was only in my chest wall before that. So I think maybe part of the problem is muscle damage since there is so much muscle in that area. The doctors just don't know, but they do know the herniation is causing the wrap around pain. They tried "band-aid" surgery, but couldn't get in there because of all the arthritis thats developed. I'm glad you are getting so much relief and can do more since you got the pump. Take care

     
    Old 12-26-2003, 08:05 PM   #5
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    Re: Hi all. I'm a newbie with questions about pain pump and thoracic problems

    I had the pump implanted in July...it has greatly improved my quality of life and lowered my pain level drastically. Mine is for lumbar. The surgery was an easy recovery,too.
    Carol

     
    Old 12-26-2003, 08:43 PM   #6
    Kayley
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    Re: Hi all. I'm a newbie with questions about pain pump and thoracic problems

    Thank you for letting me know your experience, Carol. I'm so glad you are feeling better because of the pump. It helps me greatly to hear other peoples experiences. I have yet to make my decision, but your input helps.

     
    Old 12-28-2003, 07:25 PM   #7
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    Re: Hi all. I'm a newbie with questions about pain pump and thoracic problems

    You are welcome Kaylee. I would be glad to answer any questions about the pump that you might have or be worried about. It is a big step and knowledge is king! I wish you the very best of luck.
    Carol
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    Old 12-29-2003, 10:43 AM   #8
    pixiepoodle
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    Re: Hi all. I'm a newbie with questions about pain pump and thoracic problems

    Hi Kayley,
    One thing about the pump that was not mentioned is that before you get the implant, you would have a trial run to see if it works on your pain. There are 2 kinds of trials, both of which are done in the hospital so you can be monitored. The simple one, which I had, was getting an injection of morphine directly into my spinal area and I had immediate and complete relief of the pain I had that day. I think most people with pain from failed back surgeries or someone who has your type of pain gets the longer test, which involves a temporary pump being placed outside your body and having it pump the meds for at least 3 days or longer. There are people who have had that test who can tell you precisely what it involves, as I only vaguely remember reading what the long trial was like.

    Since my pain is from Fibromygia only, the pump eliminates about 90 to 95% of my pain except for when the barometer drops really low or a bad weather front comes thru - then I take an Ultram and Soma, which gets rid of most of the breakthru pain. The pump is definitely a Godsend for me and has given me my life back.

     
    Old 12-29-2003, 10:55 AM   #9
    Kayley
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    Re: Hi all. I'm a newbie with questions about pain pump and thoracic problems

    Thank you, Pixie. I appreciate the info. My doctor didn't say anything about a trial. Another concern I have is about withdrawal. If I get the pump and go off most of my pain meds, won't that put me into withdrawal since my brain won't be getting the meds anymore that it is used to? I'm really scared of that, as I've been in withdrawal before when I got better for a short while when I had the stimulator. I reduced my meds and withdrew and it was terrible. I am on 105 mg of methadone per day and 12 mg dilauded 3 times per day. I am happy for you that the pump helps, that's wonderful!

     
    Old 12-30-2003, 10:39 AM   #10
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    Re: Hi all. I'm a newbie with questions about pain pump and thoracic problems

    If you are going to have a trial for the pump, you will need time to wean off the methadone. It cannot be in your system when they do this...there would be no way of knowing how much help the pump is giving you. You will have to come off the methadone slowly...how do you take it? I was on a low dose, 5 mg x3, and had to wean by cutting one pill in half for 4 days, then cutting it in quarters. I had tried to cut 5 mg. at a time and it put me into WD's, but my system was very attuned to the meth. You may not have to taper as slowly. Because as you taper, the pain will get worse, your doc may allow you to take more bt meds to keep the pain under control. It isn't easy, but well worth it if the trial works out for you.
    Carol
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    Old 12-30-2003, 04:46 PM   #11
    Kayley
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    Re: Hi all. I'm a newbie with questions about pain pump and thoracic problems

    Oh, my gosh Carol. I had no idea I would have to wean off the methadone first. My doctor is bad about giving me all the information I need. I've had that experience with him in the past. I don't think I can handle that, because my pain is so bad. And the withdrawals will just make it worse. I was looking in some past posts, and I read where Shore said the pump does not usually work too well for people with nerve pain. I have nerve pain, muscle pain, and arthritis. I'm leaning towards not having it done lately. I appreciate the information you've given me very much. I hope you have a Happy New Year!
    Kayley

     
    Old 12-30-2003, 04:56 PM   #12
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    Re: Hi all. I'm a newbie with questions about pain pump and thoracic problems

    Oh I'm sorry, I didn't answer you question as to how much methadone I'm on. I take 35 mg. 3 times a day. Of course I didn't start on that amount. I think I started on 10 mg. 3 times a day. So it would be real hard to wean off it, probably impossible with the amount of pain I'm in

     
    Old 01-03-2004, 10:27 AM   #13
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    Re: Hi all. I'm a newbie with questions about pain pump and thoracic problems

    Hi Kayley,
    Since my pain is caused by Fibromylgia (which feels like horrible muscle spasms in various parts of my body), it is different than the pain you are enduring. I was taking Ultram and Soma at the time of my trial which I had taken for 7 yrs. and it barely took the edge off my pain. A few mos. before my trial my dr. tried me on morphine which took my pain away, but I could not stay awake or function at work so the day I stopped, I started taking the Ultram and Soma again (with no withdrawal since by brain accepted the Soma in place of the morphine). Since Ultram and Soma are mild compared to what you are taking, I didn't have to wean off them and even took a Soma the day of the trial. When I got my pump in, I was given Vicodin for 1 mo. for the post op pain and when I stopped that, I had no withdrawal at all other than a rebound headache which ibrophen took care of.

    I wrote all of this so you would see that my situation is totally different than yours and I wouldn't necessarily give up on the idea of a pump until you call and talk with the manufacturer of the pump, Medtronics, because they can answer all your questions. I called them a few times to ask them questions that I felt my dr. wouldn't give me an honest answer or he would wonder why I was asking such questions in the first place. So if you haven't ever checked out their website, now would be a good time to do so.

    Good luck to you in 2004 with your search to ease your pain.

     
    Old 03-09-2004, 02:02 PM   #14
    killiangirl2004
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    Re: Hi all. I'm a newbie with questions about pain pump and thoracic problems

    Kaley,

    My name is Linda. I am interested in finding out about your receiving Social Security Disability. I have had an implanted morphine pump for 3 yrs. I applied in Florida, was denied X 2 then went before the judge. I was turned down. My attorney told me he thinks the reasron was the doctor would not fill out some form SS sent them unless I paid a $250.00 fee. At the time, my husband had walked out to live with his secretary, after 28+ yrs of marriage. He is still not supporting me. I have since moved to Alabama, my 23 yr. old daughter is my sole 100% support. My divorce attorney lead me to this sight to get info & input from others in my situation. My PM dr. sent me to an Occupational dr. to evaluate me. I can only lift up to 10#, can not climb, use stairs over 6 deep, twist ect. Says I must do SEDENTARY work. I am an RN, who will hire me? So i reapplied last week for SSD/SSI, also medicaid.

    I would appreciate any info on getting SSD/SSI and the process that may have helped you best. I am in the process of finding an attorney that has dealt with a morphine pump and SSD in the past with success. Thanks for listening, I use the public library and am limited to 1 hr per day,so my response may be a few days slow. I also contact my divorce atty this way cause he is in Florida & I'm in AL. Hope to hear from you soon!
    Linda

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    Old 03-09-2004, 02:21 PM   #15
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    Re: Hi all. I'm a newbie with questions about pain pump and thoracic problems

    Hi Kayley,

    As I mentioned in a previous post, I had the morphine pump put in and due to complications, had it removed.

    Do a search in the search field for "pump" or "morphine pump" and you will find all the information you could possibly want and then some! Mine was a play-by-play because another poster, Tiddgys, wanted to know everything about my ordeal as she was the next one to have the pump implanted. I must warn you that mine was not a normal experience. Quite the contrary. So if you look up the info ( from June, July & Aug. '03), I don't want my situation to dissuade you. Please read some of the other posts that have been success stories too.

    If you need answers to more specific questions, just let me know. Take care and good luck! Linda

     
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