by ChrisR » Wed Apr 25, 2012 3:25 am
Hi coolbreeze_ca,
I don't post here often--just read a lot. But I did want to chime in.
First I want to say that I totally understand your remorse. My wife had surgery for what she was told was one brainstem CM by the go-to guy for brainstem CMs. She was warned by another surgeon that it was likely multiple CMs and not worth resecting after only one bleed. We went with the aggressive surgeon and it now looks like the thing may have grown back or wasn't fully resected. I'm worried all the time that we damaged the integrity of the lesion/made it harder to remove/put her in greater danger in addition to the few deficits (minor compared to yours) that the surgery caused. There's a lot of room for remorse.
However, we don't spend much time worrying if the surgery "was worth it." The answer is unknowable no matter how you feel today. If I recall correctly, a certain catcher for the BoSox had a minor bleed and before getting surgerized had another, much larger bleed that left him in bad shape. Maybe you caught the lesion right before a devastating event--there's just no way to know. And if the surgery was successful in completely removing the lesion than you have the gift of looking forward to improvement every day, whether that healing is physical or mental. Those of us with lesions in tact worry about getting worse all the time, and believe me it can be its own form of disability.
Do take advice from the membership here about therapy. The brain heals slowly, but it does heal. Not only that, it finds different pathways for navigating old tasks. This may take even longer. Therapy can push this process along faster, and you may look back one day and think, "wow, I can't believe how bad it was and how great I am now in comparison." I read quotes like that on here all the time.
Finally, this is not a push for or against surgery. But be fair and honest with yourself. Feeling really upset and angry is understandable, healthy, and therapeutic--to a degree. Just keep in mind that your current condition has nothing to do with your powers of reason or decisions that you made. You are not one of the greatest neurosurgeons in the world--your doctor is. He gave you advice and you took it. That's perfectly reasonable and the absolute best thing you could have done. Not because it turned out better or worse than the alternative (there's no way to know that), but because it was what you felt was right and you went through with it! Engineers don't make cerebral vascular treatment recommendations; neurosurgeons do. The neurosurgeon you picked is one of the best, working off of years worth of rigorous studies, practical experience, and a very impressive track record. I have 4 (four!) surgeons I consult with whenever we have an issue, and everyone has the highest praise for Dr. Steinberg. It wasn't blind trust you were going on, it was sound reasoning (no matter the outcome). My point is not that Steinberg did a good or bad job, or that you made the right or wrong decision, but that we do our very best to control for as many things as we can because the stakes are so high--and then at some point we have to let go and roll the dice. You know how surgery turned out; you have no idea how conservative management might have turned out. Maybe you're alive right now because of Steinberg, maybe you're unnecessarily disabled. You can't know for sure. But you can take heart knowing you made a perfectly reasonable and brave decision, and now have the tools for moving forward--even though it will be a challenge.
I have nothing but the most sincere empathy for your condition. I really do wish you the best. Dealing with this condition is hard enough on its own. Add personal life, work, and even citizenship and it becomes a total nightmare. I just want to offer some thoughts on regret, and maybe suggest thinking forward rather than backward if you can.
Very best