Mayo Clinic Connect
I would like to connect with anyone who has an optic nerve meningioma and underwent surgery to resect this type of benign tumor.
Liked by mrector, paulaakelley70, lynzee, Melissa Kimbrel-James
@mrector It sounds like we were hospitalized around the same time! I was in from July 31-August 6. As I said in my message to Kelle; My surgery was done by a team of neurosurgeons at Tuft's in Massachusetts. Every day I was there the entire team would come in to check in on me; as this condition, as I'm sure you're aware, is so rarely seen.
I totally get the way you feel… I just spoke with my Long Term Disability Insurance company's attorney to start the process of applying for SSI….I know that supposedly the universe doesn't give you more than you can handle… But I tell you what, my fingertips are about worn out and I think I'm starting to lose my grip. 😭
What symptoms are you having at this point? I'd like to compare, just out of curiosity. 🤔
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I had my surgery in Columbia, South Carolina and had a great team of doctors. The vision loss is my main obstacle. I also have trouble trying to hold conversation. It's like I know what I want to say but it doesn't come out right. I have to concentrate on trying to say what I'm thinking. I still have some dizziness but not as bad as it was. I guess I just don't feel like I'm the person I used to be if that makes sense.
I 1,000% understand all that too!!! I was so frustrated one day that I wrote out everything I was experiencing (and shared it with my family and doctors) because when having an in the moment conversation, it's like my brain would freeze up. I would know what I wanted to say was in there but couldn't get the words straight.
My Oncologist has had me on steroids since radiation and my neurosurgeon had me on them for 2 months-ish after surgery; thankfully, we are FINALLY down to 2 MG every 2 days. To add to everything else, I have also put on about 40 pounds… The mix of the inability to be physically active and those meds, really, didn't do me ANY favors…
I tried so hard to work. So hard that I literally was making myself sick because I wasn't listening to my body saying "REST!!!" I've been a hard worker for the almost 38 years I've been on this Earth… it took my management telling me to "STOP WORKING AND GET HEALTHY!" They, of course, couldn't hold my position forever; We just recently decided it was time to end on good terms. :'( I LOVED my job but it involved all the skills the "Old Lindsey" was a pro at. This "New Lindsey", well, apparently, she's also part of the "New Normal."
Liked by mrector
I hate to hear you are going through the same thing but it does help me to know that I'm not alone. I was a nail Technician and can't see well enough to do nails anymore. I completely understand the "new" normal. I live one day at a time and do the best I can to try and stay positive.
Liked by lynzee
Im so glad I found this site.. I haven't had anyone around here that has had the problems that I do. They just dont understand. After trying to work this last week, Im a nail technician, I almost decided that there isn't anyway to keep doing that. After a day of trying to see where to place the brush, my headaches are horrible. So disappointed that the removal of this didn't help with my vision and somedays I think it is getting worse. I to am trying to stay positive and I know its only been a short time. But, this is really starting to work on me. Thanks for listening/reading.
Liked by Colleen Young, Connect Director, mrector
I'm also having hand tremors since the surgery, so with those combined with vision loss there is no way I can do nails. It's so frustrating. Does the dr say if your vision will improve? My neurosurgeon says I will be completely blind in my left eye eventually. The remaining part of my tumor is still wrapped around my optic nerve and there is no way to remove it. He tried to remove as much of the tumor during surgery but the risks were to great to continue. I have brain MRI's every 6 months to monitor it.
@mrector and @kelleroberts Wow, as much as it pains us to learn that there are others dealing with this, it almost is a relief too. Just knowing that there are others who understand; especially when no one else does. But, how could they, right?
I totally get the pain after TRYING to focus on something. Oh my goodness, especially after vision testing, it hurts so badly the rest of the day. Bright light, reading, using electronics, you name it, I pay in the end. 🙁 I've tried eye patches, a bandana, etc. It would help some to keep it covered, but the fabrics irritate my eye, argh! So, now I just close my left eye when I'm doing things or it is bothering me.
I am at the point where I just want them to take the dang thing out. I even asked my optometrist if she could find me a "black out" contact for my left eye. Unfortunately, they cost around $200! 😲
I close my left eye too quite often. My neurosurgeon stopped my surgery before I was blind that day, but I almost think it would have been better to be completely blind all the sudden instead of losing vision slowly.
My sister works for my ophthalmologist.. I ask all the time if they could just pop my eye out and be done with it..I also have tried cover my eye, but sometimes that is worse. I have also rodeo'd my entire life, barrel racing, I am struggling with that now also as I have zero depth perception. have any of you done the radiation treatments? That is what they are thinking of next. My next appt is the end of June, so I guess we will see. Thank you for sharing with me. It does help knowing that others understand what I am going through.
Liked by mrector, lynzee
My depth perception is bad as well. My neurosurgeon told me if my remaining tumor starts growing that I will have to do radiation. I go back in September for another MRI and checkup.
My tumor is growing around my left optical nerve. I do need a surgery but some NS warned me that I might not be able to keep my vision. Where did you have your operation?
I had one surrounding my left optic nerve. I was unable to keep the vision as they had to remove the entire optic nerve.
I am so sorry to hear that. The same thing happened to my brother, same eye as yours. We found it weird that a brother and a sister with two different fathers both had meningiomas. I had many and he had one, but he is blind in his left eye. I need another surgery on my right eye and I'm so afraid that I will completely lose my vision in that eye. My brother has adapted well, he can drive, hunt, etc. all the things he enjoys doing, and I'm hoping you can as well. My best wishes. peg
Hey guys, been a while. Had a follow up MRI done and the tumor has progressed into the soft tissue. We also found that the tumor in my brain has regressed, at least that's good news. I am still struggling with the doctors in my area as none of them know what to do. I am beyond frustrated. I still have constant discomfort; I limit my daily activities or else risk having to lay in bed, sobbing, because the pain is so much. I have relayed this information to doctors, and still, they will not provide me with anything for pain relief. I am currently on gabapentin and Celebrex. They help to an extent, however, when it gets really bad, it doesn't help at all.
I have had several vision tests done and the results vary. I keep asking if they want me to strain or not to see (which causes more pain from trying to focus) and they won't give me a solid yes or no. So, it seems to run anywhere from 70/20-90/20.
@andavis1189 when was the decision made to remove that nerve? I have mentioned several times to doctors that I'm at the point of just one of the eye removed.
Liked by Colleen Young, Connect Director
Out of all of the replies on this thread was anyone diagnosed as a teenager, and in their late 20's early 30's now? I struggle with the fact that I haven't met anyone my age that has been through this and would like to connect.
I was not diagnosed as a teenager but looking back I believe I probably had the tumors then, a slight eye bulge, etc. but didn't get diagnosed until 2010 at age 60. When I look back on my pictures one eye is definitely a bit different than the other. I am sorry to hear that you are going through this, but we're here for you. Wishing you all the best. Peg
Liked by andavis1189
@andavis1189 Not knowing another person with a particular medical condition seems very hard to take. I feel the same way. In my case it's "burning mouth syndrome" (or something like that). It's daily torture, no real treatment, numerous docs know nothing about it, and those that do offer no cure and barely any relief. This topic comes up on Mayo discussion line, but I have never met or heard personally about anyone with it.
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