I met with my neurosurgeon again. He thinks surgery seems like the only option that would fully address the issues I am having, but that the chances of success are fairly low. He is presenting my case to other surgeons to see if anyone is working on some cutting edge research that could improve my odds. I have to say, I feel a bit disheartened. My condition isn’t technically fatal, but continually progresses with increased pain and loss of limb function to the point that many end up killing themselves. I have never been one to want to cut my own life short, but I sure don’t like the idea of this just getting worse and worse for the next 60 years. I really hope someone has a brilliant idea.
Im so sorry that sounds awful
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I hope they can help you. I really hope you live a good long life. Do you have people around you who can support you in addition to your immediate family? Also, are there support groups out there for your condition you can join? It’d be so helpful to talk to others going through the same thing
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Hey @Ninjastar . I’m not sure what to say after that op. I hope that they are able to come up with something that results in success. Don’t give up it’s not though. Who knows what options are on the horizon. Things advance all the time.
We are rooting for you.
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Urgh @Ninjastar I relate so much with this right now. I also have a “technically not fatal, continuously increased pain and loss of limb function” condition. It’s also incurable and I’m really hoping that someone would come up with a medication or a surgery method that would cure my genetic disease. Feels like I’m meeting an inevitable end of not being able to walk properly or be in extreme pain from spasticity. It also worsened my depression by twofold or probably more. I relate to your situation so much right now. Massive, massive hugs. Having a progressive condition really sucks. Lots of hugs.
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The only experience I have with something like that was with a friend of mine who had muscular dystrophy. But that’s fatal. He progressively lost limb function and had pain.
However, he never gave up. He was on pain killing meds up till the end.
He had personal assistants to do stuff for him that he couldn’t do and was in the local muscular dystrophy association.
He had a very sharp mind like you.
I’m not going to lie, you’ve been dealt a bad hand, but don’t give up. You still have a life to live.
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I don’t know what to say except I’m thinking of you and send a lot of hugs your way.
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Yes please don’t give up @Ninjastar
Listen to the doctors and carefully weigh your options.
Getting support from your partner is important
Sending hugs your way
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I have Parkinson’s from the meds I take. I don’t know if it will progress or not, but I plan on keeping going until I can no longer push my wheelchair I may or may not end up in.
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What is this condition, Ninja? Sounds like MS or ALS, but those are fatal as far as I remember. Maybe a benign brain tumor? Does it have anything to do with your recovering sight in one eye?
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Thanks, guys. I didn’t mean to give the impression I was contemplating suicide. I am not. I am just afraid of how my feelings might change over time. Maybe it would help to find a place like the Muscular Dystrophy Association, where I can get access to assistants and stuff.
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Yes and yes. It is a very long and in depth thing to explain, and I don’t fully understand the details myself. But that just about sums it up. It only affects specific nerves that pass near the tumor, and none of those control autonomic functions. So it will not be fatal. Just really unpleasant. When I tried to research my condition, the only result was a paper my doctor had written about me. It is apparently rare enough that even Google doesn’t know about it.
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I would just keep going and living your life like nothing has changed. If symptoms start showing up, just keep going as well, you will adapt. I’m only 25 and already have issues with walking straight, but I’m not going to let it stop me. Humans are very good at adapting to all sorts of circumstances.
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That would be ideal. Unfortunately, the symptoms are already pretty bad, and keep getting worse.
You are right that I can adapt to a lot. I will have to. The main struggle right now is the loss of independence. The pain to my ego is probably worse than the pain to my nerves, lol. Longtimers here know how much pride I have in my ability to do things, and how much I struggle with asking for help. Accepting limitations is something I have never been capable of, and that has led to me doing some incredible things. I guess this is just another chance to give statistical recovery odds the middle finger.
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Sorry to hear your symptoms are getting worse.
And yeah, I am a man with probably too big of an ego and I lost my independence to SZ. My family has to help me with a lot of things and I don’t like it either.
I’m sure defying the limitations just makes it that much more rewarding. 
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We shall see. I have finally broken down and accepted the concept of using the power scooters in stores, and that really helped me with getting back to my favorite hobby of baking. I can wear various mobility supports, and I have found some clever workarounds for being unable to use my hands precisely.
I suppose the last real hurdle for me is transportation, and self-driving cars are so close to being a reality. I don’t need to hold out for a cure. Just hold out for a fully automated chauffeur.
Thank you to everyone. I am glad you helped me refocus away from self-pity and onto practical solutions. This is why we built this place. This is why people on here tend to have higher quality of life. Because we remind each other to focus on what we can control to get as much as we can from the shitty hand we were dealt. It isn’t that false positivity bs where you pretend to feel grateful for the scraps you were given. It is actual positivity that can hold up to reality.
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Don’t know what to say.
Leaving the box of (((hugs))) open for you today.
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Science, technology, and medicine are advancing so fast these days that who knows what we’ll have available to us. That fact gives me hope of curing my SZ some day. But until then, I’m glad to have the medications available to us today. Better than nothing.
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OMG, that’s terrible. I’m so sorry, Ninja. I really hope the surgeon(s) are able to operate successfully. Keep us updated, but only if you want to. Sending love. 
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Fingers crossed they can do something for you @Ninjastar
Sorry to hear you have this going on 
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