ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: ericday on December 26, 2024, 11:18:01 pm
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Hi! This is my first post.
I'm 57 and have had intermittent left-ear tinnitus my whole adult life. In 3/2024 I perceived some significant hearing loss on that side and was ultimately diagnosed with a 1.9 x 1.3 x 1.1 cm vestibular schwannoma (aka acoustic neuroma). In 5/2024 I underwent three rounds of CyberKnife radiation.
I felt completely fine (well, except for the hearing loss) until 10/2024, at which point I noticed intermittent mild dizziness and vertigo. I found that this prevented deep focus and concentration (essential for my line of work), so I went on a short-term medical leave. Subsequently I had a follow-up MRI which indicated that the tumor has not grown and shows sign of damage from the radiation. This was a relief.
I'm been seeing a vestibular physical therapist for the last 3+ weeks, and have a daily battery of exercises that I faithfully perform. I noticed my symptoms intensifying after I started therapy, and was told to expect that things would get worse before they get better. But my therapist seems to think that the increase is worse than what would be expected from just the therapy. So now I'm worried that my symptoms from the VS are worsening by themselves, and that the therapy may not be effective if my vestibular situation is a moving target.
Does anyone have any experience, insight, or wise words for me regarding this situation? It really seems like vestibular PT is successful in a great many cases, but I worry I may be an exception - unable to return to work and suffering permanent vertigo/dizziness.
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Eric, Welcome to the site. It is a great group. I had CK (one and done) for a VS Sept 2023. I cannot help you directly as I really never had balance issues. Three months after the CK I failed a stress test and started on the path to open heart surgery in March 2024. During the evaluation process I was consistency asked about balance issues. This long story is to let you know the current balance issues may not be related to the VS/AN. To this day both my ENT and Cardiologist ask me about balance issues. My come back now is if I have any balance issues are you going to take credit or blame the other guy.
I do not wish anyone any more medical issues but it is something to consider.
Best of luck in your recovery.
Dan
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Thanks, Dan. That is a very interesting point. I've been assuming that the symptoms are related to the VS - both due to the timing and the fact that my dizziness pulls me to the left (the side with the tumor). But as far as I know you're correct that they could have an unrelated cause!
I hope you're doing well with the recovery/treatment for your heart issues. :)
I'm interested in hearing from anyone who has experienced vertigo/dizziness after VS treatment, and whether/how vestibular therapy worked for them.
- Eric
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Hi it might be due to post radiation swelling causing some neuroinflammation. I had it very slightly after my CK but I took a low dose of diazepam (like 1 mg) and that helped - I only needed it once or twice : Diazepam is effective in treating vertigo, acute episodes in particular. It depresses all levels of the central nervous system.
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Thanks for the tips, Michele. :)
- Eric