Trying to figure out what to do and getting so confused and scared!

Discussion in 'Fibromyalgia Main Forum' started by Saoirse3, Sep 7, 2011.

  1. Saoirse3

    Saoirse3 Member

    I went to the ortho last week about my knee joints and he said my arthritis is "bone on bone" now. He wants to do a double knee replacement in a month, waving his hands airily about my concerns. "No problem! 4 days in the hospital and your back home!" To do WHAT - sign up for World Cup soccer,or maybe Dancing with the Stars? I'll be alone all day! But that isn't what worries me the most.

    I have a platelet count of 54. Last year I almost bled to death during an outpatient procedure, which the hospital didn't see as any big deal (thatt's a separate story in itself). Let's add diabetes, cirrhosis, gall bladder disease, osteoarthritis and, of course, THIS DD and the fact that I am allergic to almost every painkiller known to mankind. My closest trauma center is Seattle (I live in Alaska). If they don't have enough platelets in Anchorage, it would take them 3 hours to fly me to Seattle. Two years ago, when my gastro recommended gastric bypass for weight loss (thank God I passed on THAT one!), Wake Forest Medical Center said I was too big a risk. But suddenly it's cool to detach my legs? Did I MISS something?

    Lately my hip joint has been hurting so much that I am limping and putting weight on it makes me want to scream. If ONLY I could figure out a pain treatment that wasn't opiod related or didn't destroy my liver (thank you, Cymbalta and Vioxx!). I wake up at night crying, and that's WITH Lyrica, Ambien, and Ultram! Sometimes I get so angry I just MAKE myself do it and try to ignore the pain. But lately, it's like trying to ignore snow in January (which is about 100% certainty here!)

    I know there are no concrete answers, but thanks for letting me vent! Sigh...where's Harry Potter when I really need him?

  2. rockgor

    rockgor Well-Known Member

    I believe Harry Potter is singing and dancing on Broadway. You can see him on

    I think when your doctor said, "No problem," he was talking from his
    perspective, not yours. I have arthritis too, but it is non disabling. So far
    all it has done is enlarge my knuckles. (I have been forced to give up my
    dream of becoming a hand model.)

    I looked at your profile. I have Scotch-Irish ancestry too. Me great-great
    grandfather come from the Old Sod. BUT, he had a Scottish name. Kinda
    like John McCormack.

    Sad to say, I have no helpful suggestions for your medical problems. Some days
    I contemplate mine and get angry and/or depressed, but they are of small
    consequence in light of yours. If you ever want some social life or maybe some
    laughs, come visit the Chit Chat board.

    Best of luck

  3. 3gs

    3gs New Member

    I wish I could give you a hug. Understanding the concern with the doc,to bad he didnt smack himself upside the head when airily waving his hands around!!!!

    Are all pain meds opiated related? have you tried morphine? Perhaps a wheelchair would help?

    I do know what you are going thru,I too was told about both knees and hips needing replaced. Any kind of surgery is scary. I had half my teeth pulled needing the rest done but the damage they did and this dd,its not been possible. (not attractive either!)

    best wishes
  4. Mikie

    Mikie Moderator

    There can be significant blood loss during knee replacement surgery. For just one knee, one has to donate a pint of one's own blood just in case. Sending up a prayer for you that you and your doc can find a safe way to do this. The problem, which you are already suffering from, is that if knees are bone to bone, the gait is off and painful and that affects the hips and spine. Post surgery can be painful so I hope you can find something for the pain. These issues need to be settled and it doesn't sound as though your doc is taking them seriously. I'd get another opinion. In any case, best of luck to you.

    Love, Mikie
  5. Beadlady

    Beadlady Member

    I'm with Mikie-get a 2nd opinion--maybe even a 3rd and then weigh out all your possiblities.
  6. Saoirse3

    Saoirse3 Member

    Well, after a visit with my PCP (who really wants me to have the surgery, BTW) I AM getting a second opinion. The Synvisc is helping with my knees a little bit, but what I have noticed lately is that my left hip is in excruciating pain. Doc seems to think it's a pulled muscle and my knee is causing it, but it wasn't my left knee that was hurting to begin with! I know I have lumbar and cervical stenosis, and I went to the Alaska Spine Center. The doctor there thought he was some kind of god and ONLY his opinion mattered. After two epidurals, I thought he was a much lower ilk than "god status". And, no one ever mentioned my back again, even though **I** mentioned it to my doctor.

    To make a long story short, I don't think the pain is radiating UP from my knee, I think it is radiating DOWN from my back. My back hurts all the time, I have sciatica which is NOT a disease in itself, and my hip hurts when I put any weight on it. I'm not saying it's NOT a pulled muscle or my FM deciding it likes my hip this month (this guy gets around!), but before we go yanking out my knees, I want to know EXACTLY which part of my body needs the most attention. I want to go with the surgery that will give me the most relief. There is a new spine doctor who just moved here from TN and seems to have good credentials. I am going to try and get an appointment with him and see what he has to say about this, then weigh the options. I may not be a doctor, but I have to live in this body. And I'm paying THEM, not the other way around!

  7. Marta608

    Marta608 Member

    Stacey, I'm tiptoeing in with my story...... Last summer I was having bad knee pain. I heard that a group of sports medicine doctors were very good, so I made an appointment. You know the drill: xrays, exam that made my knee feel worse - and the doctor said "Bone on bone!" Except he told me to wait as long as I could since "of the over 300 (300!) knee replacements I do a year, some get infected and have to be done over." Great. (Hang on, it does get better.) He ordered PT.

    I limped home and called the physical therapy clinic, made an appointment, went. Even the doctor had said PT is a pain in the *ss and it is. Especially if we have other health conditions we're dealing with. I couldn't go the prescribed three days a week, only two, Tuesdays and Thursdays.

    The therapist said that I had over-developed my quads. I have used a Pilates bench (only lying down exercises) but, even without the bench, I understand this is not unusual. We use quads the most. He gave me exercises to develop my hamstrings. I did the ones that I could.

    Time passes. I meet a friend who just had rotator cuff surgery and loves his (local) doctor. He also said he'd had a cortisone shot in his knee and his knee was great! Hmm.

    I called the surgeon's office. Yes, I could have a cortisone shot. No, I didn't have to go there. So I called my friend's doctor's office and made an appointment.

    Got there. Filled out forms. Had xrays. Doctor examines knee. And says it's doing well. What about bone on bone? I ask., he said. It's not bone on bone and, yes, I can give you a cortisone shot. Which he proceeded to do.

    It gets better. The shot didn't do much BUT slooooowly my knee got better. Not 100% but well enough that I can move without much pain. Some days is worse, if I've jammed it into the mattress the night before, for example. But NOT BAD.

    The moral of the story: see if you can have a cortisone shot and consider a second opinion.

    Oh, and by the way, you might consider a good chiropractor. Mine adjusts my hip and back which makes it feel much better.

  8. canchaser3020

    canchaser3020 Member

    This is just my experience. In 1999 I injured my knee. Took 10 months to get to right ortho in Chicage to find I took a divit out of my femur in the joint. I had to have plugs of bone w. cartilage put in divit. Anyway the dr that did it also does cartilage transplants. He takes your cart. in first surgery, grows it in the lab then puts it in you in about 3weeks. Its worth investigating.
    But I am in agreement get 2 or 3 opinions, even if you have to have it done at the trauma center.
    I am a ways from good drs & hospitals also, but not as far as you. Its worth the travel to be at the right place for your surgery if you need it.

    Good luck to you,
    p.s. look up cartilage doc to start research[This Message was Edited on 09/13/2011]