Monday, September 20, 2010

Nashville and some realizations

I am writing from the airport in Nashville, Tennessee. I made the trip out here to visit Dr. Byrd in the hope that he could add some clarity on the question of what to do with my hip(s). Over the last month, I’ve been in a “wait and see” and information gathering mode. A couple of weeks ago I went to visit Dr. Sampson to see if he could help me to determine whether Dr. Safran or Dr. Philippon had the right approach to address the ongoing looseness in my left hip. Dr. Sampson, like Dr. Philippon, is of the opinion that simply tightening my joint capsule won’t solve the problem of looseness. He proposes reconstructing the labrum, though he would use a part of my joint capsule itself as the graft, while Dr. Philippon would use a graft from my IT band. Dr. Sampson also questioned whether it would even be possible to simply go in and “sew up” my joint capsule, since there is apparently still a hole there. Dr. Sampson also suggested that I don’t do anything quite yet – but instead give it more time – at least six months from the surgery date. If it is getting better, even slowly, that is a good sign. Since my clavicle is still flexing (major sad face) I don’t really have much choice but to wait, so I am definitely open to this. On Oct. 9, it will have been 6 months since surgery on my hip.

I was a bit indecisive about coming out to see Dr. Byrd. I had sent him my films and op report in the hopes he could give his opinion over the phone, but he wanted to see me before giving any kind of opinion. After seeing Dr. Sampson, I had a 2 against 1 situation – and the 2 didn’t even agree entirely. Did I really want a 4th opinion? And even if he agreed with one of the other three, do I really want to make my decision based on the popular vote? Well, I’m glad I made the decision to come out. Dr. Byrd didn’t actually give me any sort of direction at this point. He was very honest in saying that any one of the three proposals given by the other doctors might well be the correct route, and he was not going to add yet another opinion to the mix, or tell me – yes I should absolutely go with ‘x’. Instead, he was quite honest in saying that none of them really know. I had suspected this, but it was really actually helpful to hear it. It doesn’t make it any happier or easier, but it takes the pressure off of finding the “right” answer. There is no way to know at this point. Its not like there is some piece of information out there that I just haven’t found that would show me the correct answer.

Dr. Byrd was kind, listened, and was thoughtful in his advice. He acknowledged that each of the surgeons I have talked to are intelligent, skilled, and are giving me the best advice they can. And, he said that the reason that I’m getting a different opinion from each of them is that at the moment, no one really knows the answer. He said maybe in 3 or 4 years, they will have a better idea, but for now, they are just feeling around in the dark. While they are the leaders in the field, they only know a little bit more than the rest of the surgeons out there. I appreciated his candor. I had hoped he would tell me that yes, I’ve had a patient (or 10) with exactly this situation, we did X and it solved the problem! But, he said the opposite. He’s never had a patient with this problem and is only aware of one other instance where a surgeon dealt with instability from a hole in joint capsule. He is going to call him to find out what he did and the results. He is also going to “think on it” and get back to me on what he would do.

He, like Sampson, suggested that I wait and see, and not jump into another surgery. Essentially, the message was that – whatever route I choose – tightening the capsule or reconstructing the labrum (with whichever of the methods proposed) – may or may not work. I may be faced afterwards with wondering if I should do something more, or if I should have done something different. That is, the situation may not be better, and may be worse than it is now. He also didn’t think it was wise to move ahead and do surgery on the right hip until we had positive results from the left. Unfortunately, I don’t think he realizes what a negative and depressing impact this is having on my life. Waiting is not a neutral decision. It is painful, physically, emotionally, and mentally every day. I think I need to move ahead with surgery on the right hip, and hope for the best – while covering all of my basis – i.e. make sure the labrum is not removed if at all possible and closing the joint capsule on the way out. At the moment, it is my right hip more than my left that holds me back physically – the one that hurts when I kick in the pool, aches on the bike, and protests just walking sometimes. I may be able to live with the limitations that the looseness imposes, but I can’t live with the limitations of the pain my right hip inflicts.

After visiting with Dr. Byrd he had me meet with his physical therapist, Erica, just to see if there were any additional exercises I might do or try. She had me do a bunch of things and moved my leg around a bunch and gave me some suggestions for additional strengthening work I can do – though it sounds like I’m doing most of what she could think of. She thinks that some of the pain I’m having can be improved by joint mobilizations in the hip – to break up scar tissue, and loosen up the joint capsule. This is something my P.T. consciously did not do much of because she really wanted to allow my joint capsule to tighten, rather than work on stretching it out. I think I will return to P.T. and see if the mobilizations help with the pain and range of motion, while I wait and see if the joint tightens. Some days I do feel like my hip is making progress to being tighter. Other days it feels quite loose. Maybe this is just a matter of waiting – and like everything else is just a situation of 2 steps forward, one step back. I hope that is the case.

At times it makes me so sad that I am still dealing with this. I am so sick of thinking about it, talking about it, complaining, wondering, waiting, being sad and discouraged, spending so much time and month and mental energy on it. I guess I thought that I’d deal with the emotional struggle during the laid up and recovery stage, but I was not really prepared that maybe I’d just have to learn to adjust to a new reality – with real physical limitations. I used to think that with the right surgeon, anything could be fixed. But, I’m coming to realize that is not the case. And, I’m realizing that I might just have to adjust my life to this new reality. I know that many people lead fulfilling and happy lives with much larger disabilities than the one’s I’m facing. I just am having a hard time figuring out how I might do that. I don’t want to have to figure out how to do it. But, I realize, I am already figuring out how to do it. I am doing it, whether I like it or not.

They say there are 5 stages of grief: denial, anger, bargaining, depression and acceptance. If I don’t accept it, does that mean I’m stuck in depression? Can I accept what is, without giving up on what might be? Without dragging myself down so much by fighting it? It is all so tiring and so not how I want to be spending months or years of my life.

More positive post coming in the near future, I hope!

2 comments:

  1. Hi Virginia,
    I'm so sorry to hear what you're going through and the frustration and struggle of having no clear answers. And I'm sorry I don't have any real suggestions. But with respect to the five stages of grief (and I'll disclaim this statement with the fact that I don't know anything about psychology or grief counseling, etc.) but I don't think that the stage of acceptance means giving up on trying to heal, or on making the best of your life given the limitations you've got currently. I think it's somehow accepting that for the things that are within your control, you can and must do what it takes to improve your quality of life, but coming to peace with the fact that the other things are out of your control. You make the best decision you can based on the information you've got, and you can't second guess yourself after-the-fact because at that point, you've got different information than you had when you made the original decision.
    I don't believe that the five stages are always linear either. I know with my own experience, I feel like I've been going back and forth between denial, depression, and bargaining. On occasion, there's a glimpse of acceptance, but then I go back into denial.
    The only real piece of advice I have for you is to let yourself feel whatever it is you feel whenever you feel it, without judging yourself for not feeling a different way. Be gentle and kind to yourself with your own thoughts, and know that whatever life throws at you, you've got the strength to endure.

    ReplyDelete
  2. Thank you so much Janet. I really appreciate the thoughtful advice and perspective. I'm hoping things are going well for you too.
    Take care, Virginia

    ReplyDelete