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Thread: Dr. Boachie

  1. #61
    Join Date
    Mar 2010
    Posts
    2,748
    Hi, Mike.
    I've been following your story since I joined the forum. In fact, yours was the first one I read before I decided to join. I couldn't help but feel your pain. My curve is obviously not as bad as yours by a long shot. It is painful, however. I have periods of relatively little pain and periods of very intense pain. I've also been on very strong meds. At it's worst, I was on fentanyl, percocet, muscle relaxant, and a benzo. I don't want to be a drug addict, so I completely understand your desire to get rid of these meds. Often, I'm faced with the choice, meds or pain. I go off the meds for awhile or wean down to a lower level and then the pain drives me back onto the meds. It's quite frustrating. I woke up this morning without much pain, so I thought, "Why take a painkiller if I'm not in pain?" So I didn't. I usually have to take percocet just to be able to get out of bed. But this morning was much, much better so I didn't. I've been on this stupid drug for about three years straight now. Some days I would take maybe two pills and other days I'd need five or six pills. On average, I take three or four. I haven't increased my dose or asked my doctor to increase it, even though he tries to get me back on fentanyl when I have bad flare-ups. I've declined the last couple of times and managed through. Well back to this morning. By nine o'clock I was having chest pain and starting to sweat profusely on my arms and legs. I was finding it difficult to breathe comfortably and that "sick" feeling of withdrawal was setting in pretty hard. I waited until 10 o'clock when my benzo and heart medicine were due (I'm also weaning off the benzo) and took a percocet along with my other meds. I don't know if it was lack of narcotic or the fact that I'm weaning off the benzo. It felt like both. So, yes, it's awful to get off these drugs. I've done it too many times to count. I can't justify staying on them to feel normal when my pain is minimal. The key is to do it gradually. It sounds like you are at a point where you still need them. Unfortunately, as I'm sure you know, the longer you are on them, the less they actually help with the pain. It would be nice to have a non-addictive drug that your body wouldn't build a tolerance to. But, unfortunately, they don't. Not one that works on that severe pain anyway.

    I guess the reason I'm writing this to you is because it sounds like you are in a LOT of pain. Try not to feel guilty about needing the meds. I feel guilty, too. My doctor said that because I feel that way, he's not as worried that I will become addicted. There's a difference between psychological addiction and chemical dependence. We can't help the fact that our bodies adjust to the meds. We WILL go through a withdrawal period. That doesn't mean we are drug addicts simply by the fact we are willing to go through that in order to get off of the stuff. Wean off of them when you are better after your surgery. It's going to be rough, since you've been on them for so long. But if you reduce them gradually, and it can take a long time, it is much easier. You are also a very large man, so what may seem like a huge dose to some is probably not that much to you. Size matters when it comes to dosing meds. So don't base how you feel about your dose on what you hear other people are taking. You are probably at least twice the size as many of us.

    I hope you can get some help through the patient advocacy group. It's frustrating that help is so readily available for kids, but not for adults. Those kids grow up, and once we do, if we didn't have the surgery and find ourselves progressing, we are pretty much stuck in the mud. I've had roadblocks, too. I hope you can get the help you NEED and I wish you all the best!
    Last edited by rohrer01; 07-24-2012 at 11:52 AM.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  2. #62
    Join Date
    Aug 2009
    Location
    Wisconsin
    Posts
    184
    Hey everyone.. I haven't been in these forums for quite a while, mostly because nothing had changed with me. Until a week ago. A little over two years ago I had an opportunity to expand our company, and open an office in Wisconsin. Switching doctors was a little rough, I had to go without any pain meds for about a week, not long after I moved out here. But with the health care laws that have been enacted, I was finally able to get major medical insurance coverage. I met with a surgeon a little over a year ago, was told he didn't feel it was the right time for surgery. His reasoning was basically because I was still able to do so much, even with pain, I should wait. In the meantime, he wanted me to see a cardiologist, and get genetic testing to determine if I had Marfans syndrome. Genetic testing came back negative, and my heart is in pretty good shape, other than a very slightly enlarged aorta.

    A month or so ago my pain level started getting worse, to the point I started missing work. I made another appointment with that surgeon I saw, that was last Thursday. It's FINALLY going to happen. We discussed a plan, what to expect, everything. I literally cried in that room when he walked out. He's still working out his exact plan of attack, and I should know more in a month or so. I'm going to call and schedule a date for surgery tomorrow morning. I'm hoping for mid November.

    The doc is Clifford Tribus in Madison WI. I'm pretty sure I remember seeing his name on here a time or two in the past. One thing that surprised me a bit, is that he wants me in an in- patient therapy center for six weeks post-op. I'll be using a tilt table while I'm in there. Said some of his colleagues think that's a little overkill, but it makes sense.

    I'll certainly have a lot more details soon... And I think I forgot how great this forum is..
    Pre-surgery- 80+ thoracic/ 60+ lumbar
    Still unsure of post-op numbers
    37 yrs. old, 6'7" ish
    Scoli pics

  3. #63
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,297
    Holy cow it is really old home week here! You are the second person who signed back on after several years.

    Welcome back!

    I just wanted to mention that last I knew (several years ago), there is about a 10% false negative rate on the Marfans test. Ten percent of people have Marfans but test negative on that test. Pretty darn high in my mind. That is why I never got my twins tested although they show some skeletal features though they have no aortic enlargement or the lens problems. Because there is a 10% false negative, we can never stop monitoring their aortas even if they test negative. If they tested positive they we can never stop monitoring their aortas. Same course of action with both test results. So there was absolutely no reason to test my twins.

    Maybe the test has gotten better.

    Glad you are getting help. Good luck with everything.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  4. #64
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,365
    Welcome back Mike!

    Your curves are getting large now....sure would like to see your x-rays, your so big, I guess I will have to buy a large monitor. (smiley face)

    Im wondering about the tilt table? What did he say about this?

    It might not be a bad idea to start a new thread since your story has evolved into a new chapter.

    Ed
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  5. #65
    Join Date
    Aug 2009
    Location
    Wisconsin
    Posts
    184
    Quote Originally Posted by titaniumed View Post

    It might not be a bad idea to start a new thread since your story has evolved into a new chapter.

    Ed
    Definitely, will do soon......
    Pre-surgery- 80+ thoracic/ 60+ lumbar
    Still unsure of post-op numbers
    37 yrs. old, 6'7" ish
    Scoli pics

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