ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: chrystland on July 07, 2022, 01:27:37 am
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I had surgery Dec. 2, 2020 to remove my tumor. There was a CSF leak and I had a second surgery to fill my Eustachian tube with fat from my belly. It took a while for me to heal. After about 8 months, I started jogging and noticed that it would cause the side I had my operation on to start leaking fluid through that side of my nose and my right eye would tear. My doctor had me give a sample from my nose dripping and it came back negative of beta 2? Not exactly sure what it was called, but I was negative for CSF leak. However, my runny nose and teary eye still persists when I exercise. My ENT has given me allergy nasal sprays to use for more than 3 months. Now the doctor wants to inject me with dye in my spine to see if there is a CSF leak. Has anyone had a similar experience while exercising? What was the cause? How did you fix it?
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Thank you, chrystland, for sharing your experience. That is one of the benefit of the ANA Forums. We can share our experiences with one another, and we can learn from each other. Even though I haven't experienced what you have, I still am eager to hear if anyone else has experienced this while exercising and what they did to fix it.
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Hi Chrystland, I had my tumor removed 30 years ago this past June. My nose runs and my eye waters on my surgery side when I exercise or work hard enough to sweat. I've never tried to do anything to fix it, just another side affect of the surgery. I didn't have a CSF leak so I'm not sure there's a connection to having your nose run and eye water with the CSF leak you had. I'm glad you posted as I've found that those that have had tumors have a lot of helpful information that doctors can't provide because they haven't experienced it themselves. Jill
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Hi Chrysland, I had my surgery in 2011 ,, and I have a runny nose/watery eye also when I get hot,, Working outside, walking for exercise, or even shopping in a store that is too warm.
I never had a CFS leak either so can’t speak to that. I did have my facial nerve severed during surgery and a second surgery 4 days later to reconnect it to my tongue nerve which gave me some facial movement and tone.
I have not had anything else done to “ fix” it,, it’s just another lovely issue along my journey. It’s frustrating for sure,, but I’ve learned to keep a hanky or tissue with me.
I agree with Jill Marie and Donjehle that this forum is a wonderful resource for AN patients to find answers to questions and issues,, so many doctors have very little experience with these tumors and therefore very little truly helpful advice. Not a slam on doctors,, just the truth concerning these tumors.
Good luck on your journey.
Jane
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Hi,
I also get runny nose and watery eye, but from when I eat something acidic or spicy. I also did not have a CSF leak, although they checked for it at the hospital. What my doc/surgeon told me is that removal of the tumor causes some trauma or damage to that facial nerve (the 8th cranial nerve, which controls lots of facial functions) and that sometimes when the nerve heals, they neurons reconnect in new ways that can cause these problems. He said he had a patient who would sweat on one side every time they were eating.
Obviously, I'm not a doctor, but it could be that when excersizing you're body is telling itself to sweat, but the signals get crossed and it comes out as runny nose and eye instead.
good luck
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Many many of us have the nose drip and eye water when warm and active. Happens for many with eating too. Puffs are my best friend and not fun to deal with.
I am many years past surgery on both sides due to NF2 so I get it on both sides,
Cheryl R
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GL,
I did not have surgery, but the radiation did give me synkinesis and the doctors told me that many times the nerves when shocked/damaged will stop, and start to send signals again, but incorrectly. Depending on how the nerves start up again, you could have something mapped very differently.
Salivary gland to your tear duct. Smell something and your eye starts to water.
My eye also waters when I exercise as well, but I think that might just be something that happens on our AN side. I notice many below have the same issue.
Good luck and I know it is frustrating, but you got this.
v/r GB