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My story - It's slipping out of my hands
  1. #1
    DoctorsRDumb is offline New Member
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    Default My story - It's slipping out of my hands

    Hello,

    I just wanted to find a place where like minded people could read my story and perhaps lend a helping hand (or words so to speak) of advice. I just signed up for the forum, and have not read the rules - so if I break them with this post, please let me know politely, and know it was not on purpose.

    Back in October 2013 I weighed 352 and got weight loss surgery on the 21st of that month. Since that time I've lost 130 pounds, so all in all I'd say it was worth it. However, my current situation is a direct result of this surgery. As soon as I woke up I had a numb feeling in my left quad. Several weeks later, the numbness turned into pain, horrifying pain. The pain at the time was so bad I couldn't sleep. My primary care physician diagnosed me with something called meralgia paresthetica. Here's what I went through since that diagnosis -

    -First prescription was Gabapentin
    -This did nothing

    -Then I was prescribed 5mg Vicidon and was sent for an MRI
    -I started taking too many, and my doc found nothing on the MRI - helping to confirm his diagnosis

    -Was sent to a neurologist
    -Was given a an EMG - Nothing was found, the neurologist said that also helps confirm MP as MP is in small fiber nerves and the EMG would only pick up large fiber nerve damage (don't quote me on that)

    -Neurologist gave me an anti-convulsant med to which I had an allergic reaction

    -Primary care upped my vicidon to 10MG and gave me long acting 30 MG MS Contin
    -After maybe 2 months I told him to take me off the morphine (made me too groggy for work), but was still taking too much Vicidon

    -Primary care wrote me for 15mg oxycodone
    -started taking too many

    -Doc wrote me for 30mg oxycodone
    -called doc and said I was worried about these - he gave me 10MG percs to go with this to try to take less 30s

    -At this point, my sex life was non-existent (I'm engaged to a beautiful and patient woman, good thing)
    -Mood swings
    -Not a good outlook on life
    -Suffering at work
    -Constantly thinking about "Do I have enough" "What should I say to doc next when I run out"
    -Generally UNHAPPY

    -I gave my pills to my fiance and bought a safe, to which she has the only key
    -I told my parents (both medical professionals) how out of control I was getting
    -I started going to 12 step meetings

    -Now, I am prescribed 15mg oxycodones - 8 per day - to get down to this dose, I withdrew for about a week
    -Sad, as most people would be fine off 120 mg of oxy per day, I was still sick............

    -Today, we scaled from 2 ever 4 hours to 1.5 ever 4 hours, so now I'm at 6 per day
    -I'm sick, lethargic, and moody all day today
    -We're planning on reducing every week until we can get me back to regular Vicidon and I can get surgery

    -During all this medicating, I also received 4 LFCN "blocks, each gave me about 5 days of relief.

    -I meet the surgeon to talk about removing the LFCN nerve August 5th. I'm scared out of my mind for the surgery, because I think the whole process will start all over again with the meds. The post surgical pain could be terrible, or worse, something could go wrong....

    I just want my life back, and I wrote all this mostly for myself. It'd be nice to hear some words from people who have taken this path before me, but it's not necessary to reply. I just needed to get this all out. I appreciate anyone who felt my story warranted a read. Best of luck to anyone in a similar situation.

    One day at a time,

    -AS

  2. #2
    Thisweekforsure is offline Advanced Member
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    I don't know anything about your particular condition but I had a similar condition that is treated by nerve blocks and in extreme cases, removal of the nerve. Please, please do a lot of research on this surgery before you do it. Maybe it is right for you but I don't know. Look at all other alternatives.

    The problem with the opiates is that they treat pain but they also raise your tolerance and hence, the level of pain when you don't take them or grow tolerant to your dose. If you would like to try to get completely off the opiate and go through a few weeks to see if your body will start producing its own endorphins and your pain level may naturally go down. This happened with me but it took TWO YEARS. It requires patience and thank God I did not have the permanent nerve surgery.

    In the long run the best thing is minimally invasive procedures, good nutrition and lifestyle, and no drugs, so that your body can manage it's own health. But the things you experience, mood swings, depression, constant thinking about the doses, are all very normal for someone in your situation. The opiates have a way of trapping you into one mode of handling it and sometimes this is necessary (saved me from suicide) but in the long run, after years, it becomes counterproductive and perhaps there are other ways.

    Don't know if this is helpful but my take on your story from what you said and from my experience with a similar condition. If it helps at all, you are not alone. I thought I was in H - E - L -L but it got much better with time. The nutrition for you is a challenge because of the WLS but you can pay special attention to high nutritionally dense minimally volume foods. Only one year out from the WLS? Your body has not adjusted!!! Maybe before more irreversible surgery, give it time to heal, sans drugs, big focus on nutrition and healing.

    PS, I would never have surgery without first trying chiropractic, seriously.
    Last edited by Anonymous; 07-29-2014 at 03:11 PM.

  3. #3
    DoctorsRDumb is offline New Member
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    Thank you very much for your reply thisweek4sure. I'm going to postpone the surgery, you're right. I think it's more important to get off the meds to see where I really stand. I still have the appointment with the surgeon on the 5th, and I'll use that to discuss the surgical options. However, I plan on being upfront with him about the pills and saying I won't make a decision until I get completely off. These past couple of weeks have been H E L L as well. Down to 6 15s now....even at that dose I'm still withdrawing, lathargic, not my self, snap quickly ---- I just want this chapter of my life to be over. Thanks again for reading and replying.

  4. #4
    Thisweekforsure is offline Advanced Member
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    That sounds like a good decision. Whenever they talk about removing nerves I always want to know if your body will regrow nerves around the removal, resulting in renewed pain in a couple years. A good question for surgeons: How many years will the benefit of this surgery last and is your answer backed up with studies? Often studies for these things only follow patients 5 years. You want the benefit to be more like 30 years, right? If this surgery has not even been being done for 30 years, what sort of guarantee do you have it's going to be a permanent solution? Do your research, not saying you shouldn't do it, but do your research.

    Yeah you are going to feel icky the whole time you're tapering down. You always have the option of jumping cold turkey from whatever dose you get down to, but in your case as in mine, you need to be very careful of your pain situation. Cold turkey triggers bad pain anyway, in normal people with no health problems. In a pain patient, it can trigger a severe resurgence of pain, in my opinion much safer to continue the slow taper even though it prolongs the agony. You stay in a kind of semi withdrawal all along instead of getting it out of the way in one week. For me, I got down to 20 mg per day and jumped from there. Still had cold turkey and it was awful and painful but perfectly doable and I have recovered (pain wise). Right now my levels of pain are no different than what they were when I was on 60 mg oxycodone per day! I was getting only an hour relief here and there where now I must do other things to get that hour relief like lie down to rest, but quality of life is about the same if not better. I was on them for four years this time and they were a huge help in the beginning. But in the long run, the help just fizzles out and then the side effects start to be worse than the benefits. Oh also because of your WLS is another reason I would avoid jumping cold turkey from any kind of high dose because you definitely want to avoid vomiting. Don't need to traumatize the pouch any more than necessary.

  5. #5
    DoctorsRDumb is offline New Member
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    Thanks man, and you are not lying in the case of feeling icky the whole time. I honestly just don't feel 100 percent, ever. I've got an arsenal of vitmans and minerals to help out, but even with the taper it's hard. I think it's probably best to not go cold-turkey in my pain case, and I will ask those questions on Tuesday and update you.

  6. #6
    DoctorsRDumb is offline New Member
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    Hey, just to update. I asked the surgeon a good amount of questions and came to the conclusion that I probably won't be going for it at this point. He wants me 100 percent off the narcs first, before he'd even make me a candidate. Then, on top of that, he said it's not really an effective surgery. People get their whole LFCN removed and still have pain. Speaking to my PC doc tomorrow, about continuing the taper off narcs and starting Cymbalta. From everything I've been reading it's worth a shot. People with FM are doing well, so I don't see why MP can't respond to it too. Hopefully my doc agrees - one things for certain, no more narcs after this taper -

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