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I'm really sorry that your health is interfering with an activity that you are clearly so passionate about. As a fellow BJJ addict, I was incredibly frustrated and unhappy when I had to stop training for just three months because of a knee injury. I can only imagine how depressing it must be to contemplate having to give up BJJ forever. I hope that, in the foreseeable future, modern medicine will improve its understanding of your disease and find treatments that allow you to live your life however you want.
Unfortunately, for the time being, it seems fairly evident that trauma to your head and increases in blood pressure are causally related to retinal detachment. You don't need a study of BJJ athletes to draw the obvious inferences about how if you continue practicing the activity like a normal person, it could rob you of your vision. If it's true that your doctor has seen other patients with your condition lose their sight from BJJ, then it seems obvious that you can't continue training the way you have been if you are serious about preserving your vision.
That said, I would be very curious if your doctor had any further information about what steps the other BJJ athletes she treated took to try to protect themselves. It seems like you might be able to substantially decrease the risks through some combination of the following:
Even with the measures I just described, it would obviously be safer to just stop training altogether. And the changes you will have to make for BJJ to be safer for you will likely decrease how much you enjoy the activity. Whether the risk vs. reward ratio favors continued training is something that only you can decide. Your doctor and your family care about your welfare, but they can't appreciate how much BJJ means to you.
As much as I love BJJ, if I were in your position, I would probably give it up and force myself to pursue other hobbies. But it's entirely possible that after a few months, I would feel miserable about that decision and I'd have to come back and start trying to train again in some capacity.
Ultimately, it's your call, and it's not one that anyone here envies. I know we all wish you the best with your decision and your health.
Unfortunately, for the time being, it seems fairly evident that trauma to your head and increases in blood pressure are causally related to retinal detachment. You don't need a study of BJJ athletes to draw the obvious inferences about how if you continue practicing the activity like a normal person, it could rob you of your vision. If it's true that your doctor has seen other patients with your condition lose their sight from BJJ, then it seems obvious that you can't continue training the way you have been if you are serious about preserving your vision.
That said, I would be very curious if your doctor had any further information about what steps the other BJJ athletes she treated took to try to protect themselves. It seems like you might be able to substantially decrease the risks through some combination of the following:
1) Find/make some sort of helmet and headgear to protect yourself from direct trauma to your eyes. If you embrace that your condition will not allow you to train BJJ in a "normal" way, you should be able to explain the situation to your coaches and training partners and therefore use a level of protecting that would ordinarily be unacceptable on the mats. For the protection level you need, the gear is definitely going to interfere a lot, but I'm sure your training partners will be cool about it if they understand why you need to wear it. Just make sure it doesn't pose any safety hazards to them (e.g., nothing their fingers could get caught in) and don't use it as a weapon when rolling (e.g., don't grind it against their faces.)
2) Headgear of some kind will likely be able to stop direct trauma to your eyes, but it sounds like any hard impacts to your head could still potentially dislodge your retina. If that's true, you can no longer roll at a normal speed because you will inevitably catch knees/elbows to the head during scrambles. You'll have to find training partners who can actually stay at a slow, measured pace.
I sometimes have very technical rolls with the top guys at my school, while going maybe 1/2 to 3/4 speed and always staying completely under control. It's not what I would call a "flow roll," because both guys are trying to obtain dominant positions and catch submission, but they are forcing themselves to restrict the manner in which they accomplish that goal. Most guys — even senior belts — cannot resist the temptation to speed up or go harder, so you need to be extremely careful about who you try this kind of rolling with.
3) The previous two suggestions dealt with the risk of trauma, but they won't directly deal with the risk from chokes (unless, of course, your headgear makes it impossible to choke you.) If I understand the mechanism of action correctly, it sounds like the increased blood pressure in your head from having your arteries restricted and your neck squeezed could potentially contribute to retinal detachment.
The bluntest solution would be to just tell your training partners that they can't choke you. Obviously, that would transform sparring from a BJJ free roll to something not-quite-like BJJ. In essence, you would be doing a drill that forced your training partners to work on different parts of their games. When rolling with you, they would have to practice their sweeps, kimuras, leg locks, etc. Obviously, this would go over best if you didn't exploit the ruleset by leaving yourself wide open for chokes.
A less dramatic option would be to force yourself to always tap as soon as an opponent locked up a choke, even if isn't deep. You would have to actually abide by this rule, and I know that might be difficult because you would have to tap to a lot of chokes that you probably could have escaped if you tried to fight out of them. (That's especially true in the gi, where a lot of lapel chokes can make you feel arterial pressure without actually being tight enough to finish you.) But if you were consistent in tapping early and often, I doubt that the blood pressure in your head would every spike all that much. Of course, any intense exercise will cause a temporary increase in overall pressure as your heart rate increases.
2) Headgear of some kind will likely be able to stop direct trauma to your eyes, but it sounds like any hard impacts to your head could still potentially dislodge your retina. If that's true, you can no longer roll at a normal speed because you will inevitably catch knees/elbows to the head during scrambles. You'll have to find training partners who can actually stay at a slow, measured pace.
I sometimes have very technical rolls with the top guys at my school, while going maybe 1/2 to 3/4 speed and always staying completely under control. It's not what I would call a "flow roll," because both guys are trying to obtain dominant positions and catch submission, but they are forcing themselves to restrict the manner in which they accomplish that goal. Most guys — even senior belts — cannot resist the temptation to speed up or go harder, so you need to be extremely careful about who you try this kind of rolling with.
3) The previous two suggestions dealt with the risk of trauma, but they won't directly deal with the risk from chokes (unless, of course, your headgear makes it impossible to choke you.) If I understand the mechanism of action correctly, it sounds like the increased blood pressure in your head from having your arteries restricted and your neck squeezed could potentially contribute to retinal detachment.
The bluntest solution would be to just tell your training partners that they can't choke you. Obviously, that would transform sparring from a BJJ free roll to something not-quite-like BJJ. In essence, you would be doing a drill that forced your training partners to work on different parts of their games. When rolling with you, they would have to practice their sweeps, kimuras, leg locks, etc. Obviously, this would go over best if you didn't exploit the ruleset by leaving yourself wide open for chokes.
A less dramatic option would be to force yourself to always tap as soon as an opponent locked up a choke, even if isn't deep. You would have to actually abide by this rule, and I know that might be difficult because you would have to tap to a lot of chokes that you probably could have escaped if you tried to fight out of them. (That's especially true in the gi, where a lot of lapel chokes can make you feel arterial pressure without actually being tight enough to finish you.) But if you were consistent in tapping early and often, I doubt that the blood pressure in your head would every spike all that much. Of course, any intense exercise will cause a temporary increase in overall pressure as your heart rate increases.
Even with the measures I just described, it would obviously be safer to just stop training altogether. And the changes you will have to make for BJJ to be safer for you will likely decrease how much you enjoy the activity. Whether the risk vs. reward ratio favors continued training is something that only you can decide. Your doctor and your family care about your welfare, but they can't appreciate how much BJJ means to you.
As much as I love BJJ, if I were in your position, I would probably give it up and force myself to pursue other hobbies. But it's entirely possible that after a few months, I would feel miserable about that decision and I'd have to come back and start trying to train again in some capacity.
Ultimately, it's your call, and it's not one that anyone here envies. I know we all wish you the best with your decision and your health.
