Wednesday, February 24, 2010

Surgeon Appt.

I had my appt today with the surgeon.  He did the standard history on me, and the treatment and therapies we have already tried.  He also measured the degree radius of my elbow and wrists. I told him about the burning in my two fingers so he asked if we did any nerve tests yet. We told him no, and he did a few basic ones. Then he left the room to look at the MRI scans we brought.  A few moments later he returned and told me that he needed me to get some more X-Rays because he wanted to see the bone damage.  Luckily I was able to do the x-rays right there in his office.  After the x-rays he came back and told us his findings.  My tendons and ligaments are destroyed.  Basically all my connective tissue is destroyed.  However, so is most of my bone.  I have massive bone degeneration.  At this point the only surgical option would be complete and total wrist replacement surgery.  My elbow will also need to be replaced but he thinks they may be able to hold off 4-5 years before replacing it by cleaning it up and removing the damaged spots in a less invasive surgery.  Because of my age he is hesitant to do the surgery.  He thinks there may be other options we haven't exhausted yet.  I asked him if those options would repair my bone or tendons, and he said they wouldn't but they MAY reduce pain, and MAY slightly increase mobility.  I told him I'd rather have the surgery if that was the best chance I had without it.  He said he understood but there would be limitations with wrist replacement.  I wouldn't be able to lift more than 15 lbs, I'd have about 30 degrees of mobility in both directions, and may or may not have side to side movement in my wrists.  I explained that currently I can't even lift a jar of peanut butter, have nearly no mobility in my wrists, and  can't move side to side at all.  He wants to talk to my Rheumatologist first and he wants me to undergo an EMG because he thinks I have nerve damage which is why my fingers burn.  So basically, I have a connective tissue disorder, a bone degeneration disorder, and possibly a nerve disorder.  As of right now the surgery is a no go but I'm really going to push for it.  I understand joint replacement shouldn't be taken lightly, and I'm not.  I can't do anything with my arms right now, to me this seems like a great option.  The pain relief will be immediate with a wrist replacement surgery.  He can't repair my tendons, he said, without this surgery because the bone damage would just cause them to become destroyed again. So basically he told us that this surgery was pretty much my only option for pain and relief as well as mobility - but because of my age he doesn't want to do it.

I go on March 9th for the nerve test, and back to see him on the 11th.


  1. ((Hugs)) Honestly, I see it the other way around. Because of your age, I think he should do it! You're too young to have to continue to suffer from this and have it hinder your life. Sure a 15 lb weight limit and limited mobility sucks but like you said it's more than you can do now. If only you could just give it to him for a day, along with children and a life to care for and re-discuss it the next day. Sheesh.

  2. Big hugs. I am so, so sorry to hear this. If I were you, I would probably be calling him every single day asking him to reconsider surgery and letting him know that you still believe it's the best option for you. Are there any other surgeons you can talk to? If there aren't any in the area that work with your insurance, is traveling to one somewhere else an option? Or calling the insurance company and explaining that you were unsatisfied with his rather arbitrary decision and see if they would pay for a visit to an out of network surgeon for a second opinion at least? Is this damage all due to EDS or is there anything else causing it as well?

  3. (hug) Keep pushing - he really sounds like he's 90% there in understanding this is your only option... he just needs a shove to understand that his standard policy doesn't apply here. Use your medical support staff to talk to him peer to peer if necessary, to let him know what they have experienced regarding your past efforts and commitment to improvement(some doctors just don't get that talking to someone in a lot of physical and emotional pain and exhaustion is talking to someone STRONG not weak and can start acting like they know your mind better than you do).

    Yes, replacement means permanent changes in how you treat the limb - but what he's saying is the equivalent of warning you that a house has small closets when you're trying to replace on that burned down. Not optimal, but an improvement and if he's got nothing better to offer, then he's got to knwo your young age means you can't possibly be expected to carry on as you are no with no improvement in sight.

    Take care of yourself today and get your crew of support around you to fight the next round - it'll happen, don't give up. ~ Mom

  4. I'm sorry to hear it didn't go as well as you wanted. I have to agree with you and everyone else- SOME relief is better than NONE.

  5. I have to agree with Amy. I think you should keep pushing for it. You've got a lot going on and you need the mobility, even if it's limited. It would still be more than you can do currently.

    I'm praying for you.

  6. Bethie, all I can say right now is I feel for you and I'll pray for you sweetie. Life doesn't always go according to plan and no matter how kind the support, I'm sure it doesn't offset how you feel right now. I'll be thinking about you.