Author Topic: UPDATES & Questions  (Read 1097 times)


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UPDATES & Questions
« on: July 20, 2023, 11:29:12 am »
Hi to whoever reads this I have had several of you comment on my posts so I hope you see this update. I went to NYU few months back for the botox and I have new movement over my right eye, tumor removal side which has been mostly frozen since surgery. I did notice a few wrinkles on that side which was weird as I only get them on non surgery side. I can lift the brow alittle and the synknesis seems alittle better. Anyway, she didnt inject any botox around that area this time as she didnt want to upset any progress. She lept staring at me saying she has never seen that progression in someone years out, removal was 2017. Hopefully there will be more positive changes to come
Another reason for writing:
SURGEY REMOVAL 2017 I STILL GET OFF BALANCE IS THIS NORMAL YEARS LATER??? I know my balance nerve was lost on that side but they said the other side takes over to compensate so I dont know if this is normal. Cant speak for all of you but I definitely have PTSD from this and every little headache or off balance I am worried for another tumor. I get headaches in the occipital area on surgery side and probably wont be satisfied until I get an MRI. I just had one this time last year and all was good.


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Re: UPDATES & Questions
« Reply #1 on: July 28, 2023, 11:09:51 am »
Hi Kaci,

It's coming up on 11 years since my trans lab surgery and I still have balance issues from time to time. As a balance therapist explained (patiently) to me there are three components of balance: the nerve, eyesight, and touch. Whenever I do a rapid change of head position, such as leaning over to upright, I've got to grab something. Any dark environment with an uneven surface is especially challenging. I walked a labyrinth a couple of years ago and a walking stick was a must. Multi-story elevator rides also mess with my head.

Having said all that I have gradually improved over the years but have come to accept that I will never regain everything that I used to have. It still beats having a tumor growing into my brain!

Best of luck in your continued recovery.



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Re: UPDATES & Questions
« Reply #2 on: September 27, 2023, 12:45:20 pm »
I have had just my first two physical therapy/vestibular rehab appointments, in the last two weeks, and I recommend seeking out a specialist in vestibular rehab. It's already helped me with balance -- and with my morale.

I have learned a lot, and I agree with all that Tom said, above.

I also recommend getting personalized exercises to do at home from the PT professional, as they have "tricks"/exercises to help your brain learn how best to work with the balance signals and info that we do have left after ANs.

I wish I had visited with the PT person 2 years ago, but it's never the wrong time to start!