In the end, this probably isn't a big deal. My appointment was moved back by three days. I have been suffering with this depression for at least 9 years now, and if I do get approved for one of these studies, it may be months, or years, before I notice an improvement. The statistics on DBS show that it can take up to as much as five years before it is effective. It can be as quick as someone flicking on a switch, but it can also take time to program the device to get just the right settings so that an effect is felt. On the other hand, FUS is just a big unknown. They don't really know how long that will take to work, if it will work at all. So, in the big picture moving this appointment by three days won't really make much of a difference. It is just that I am feeling so desperate to get a cure that every day seems like an insurmountable obstacle. I wish that I could have the surgery today!
I am reminded of something that I was told recently. I have been contacting people that have had DBS surgery for depression to see how the surgery went for them, whether it was successful and what kinds of side effects they had. For the most part people are pretty positive about the surgery and the effect that it has had on their lives. Some people have had more of an improvement than others, but that's to be expected. One woman that I contacted had some pretty sound advice:
I was one of the earliest DBS patients in Toronto and have been living joyfully and depression-free for over a decade. It's important to have realistic expectations. The surgery itself is almost the easy part and only the first step. Recovery, re-building your life, and learning to live with the full spectrum of emotions is a much more difficult process than most people imagine.I have been really focused on getting the surgery (either DBS or FUS), but like she said, that is almost the easy part and only the first step. There's going to be a long period of recovery and re-building my life even after I hopefully get better (which itself can take years) before I can become the person that I once was again.
It's kind of like when two people get married, all of the focus is on the wedding day, when in reality, that day doesn't matter too much. It's how you deal with the following years of marriage that really matter. Similarly, when young couples have a new baby, the birth of their new child is a cause for great celebration, while it can also be a very difficult and anxious time for the new parents. Again, though, the birth day is the easy part. The next 19+ years of parenting are what will make you parents.
So, I shouldn't get too worked up about a three day delay in my appointment. There's still a long road ahead.
For what it is worth, my experiences even with the same doctor have been varied. One time an appointment will be delayed for a few weeks for unspecified reasons and another time the same doctor will admit me to the hospital, do the needed surgery by staying late that same day, and then release me, all in one day, which essentially NEVER happens. Most of the time though, appointments are kept and normal things happen.
ReplyDeleteWith another pair of doctors, one fixed my acute condition and was great at that and another fixed my acute condition but offered to help fix things so my condition would happen much less often.
With another pair, one sent me home with some pills to better handle my condition but not fix it while another offered to refer me to fix my condition. Needless to say, I jumped at the second offer.