This is a complicated topic, and I want to start by reminding you to always take concerns to your doctor. You know your body best, and if something does not feel right in your body, always inform your doctor. I sometimes gaslight myself, worrying I am being ridiculous or hypochondriacal. But throughout my brain tumor journey I have become very in tune with my body, and I have learned to pay attention. I have realized how important it is to advocate and listen to my body and not wait for things to get worse.

So let’s say you have been doing pretty well and you start seeing an increase in your acoustic neuroma side effects. This does not necessarily mean that there is concern for tumor growth. Sometimes, when symptoms come back after going away or suddenly get worse, that is indeed because you have growth. But it isn’t always a direct correlation. I know that perhaps that isn’t a very helpful answer, but it is the reality.

At times, small tumors are really symptomatic, and sometimes, large tumors aren’t very symptomatic. But the reverse is also true. I have talked to people with 4 mm tumors and lots of symptoms, and I have talked to people with 2.5 cm tumors who have minimal symptoms. Tumor growth is not a straightforward equation for symptoms.

I know that my hearing felt fine and then very suddenly was not fine in my tumor ear. My doctor said that the nerve can be really resilient until suddenly it is pushed too far and gives up. That seemed to be the case with me, as they saw my hearing nerve was barely hanging on when they went in for my tumor removal surgery. However, despite my larger tumor at 3 cm, I was having minimal balance issues. The doctors suspect that my brain was slowly acclimating to the impact on my balance nerve, and that was why those symptoms weren’t worse.

I have also learned that since treatment, my body works hard to compensate for my after-effects from the tumor and the surgery. For example, I need a lot of concentration for things like balance and hearing, and I know fatigue impacts my ability. I have realized that when I am under the weather, for whatever reason, my ability to mask my symptoms is greatly reduced. This can then feel like I am having an increase in symptoms, but it is actually just a decrease in resilience. The first few times it happened, I was terrified it meant tumor growth. Now I know to wait until the illness or other challenges subside and see if I am still experiencing the issue.

An example of this occurred a couple of years ago. I did not experience any facial paralysis after surgery, but I have had occasional issues with eye twitching, especially when I am under the weather. I had 2 days where my eye would not stop twitching, and it was both annoying me and making me anxious. I ended up in the emergency room the following morning with appendicitis. As soon as I was through the surgery, the eye twitch was gone as if it had never been. I certainly did not expect that an eye twitch meant appendicitis. But I have realized that sometimes a sudden reoccurrence of acoustic neuroma symptoms is a warning flag that my body is struggling with something.

I have also learned that acoustic neuroma symptoms can be caused by different medical issues. For example, I had a sudden increase with tinnitus in my hearing ear. Like everyone else who has had an acoustic neuroma, I am very protective of my hearing ear. So, this increase in tinnitus was very scary. However, I learned that cardiovascular issues can impact tinnitus. I was struggling with blood loss at the time, and as soon as it was resolved, the tinnitus was also gone.

Experiencing an increase in symptoms is definitely going to elevate your anxiety. That is totally normal and understandable. If you are having an increase in symptoms,  expect that you will need to lean into tools to help your anxiety, whatever that may look like. For me, that means I need to make sure I get regular exercise, eat healthy, have a consistent sleep schedule, spend time outside, talk with friends, and read some escapism books. Your list may look very different. But if you are struggling with symptoms, please give yourself some grace and extra care. https://luckybraintumor.com/2024/01/03/anxiety-a-brain-tumor-journey-companion/

Also, keep in mind that a short-term incident is very different from ongoing symptoms. If you noticed a symptom was elevated for a day or two, I wouldn’t be as concerned as if it has been plaguing you for weeks or months.  Make sure you are keeping your doctor in the loop and attending your follow-up appointments.  If you aren’t sure if it is happening regularly, maybe keep a journal or log in your phone of what symptoms you are experiencing and when.

Symptoms can mean growth, but they certainly don’t always. The most important things are to listen to your body and keep your medical care team informed. If you are experiencing symptoms but are waiting for scans and more information, try to be gracious with yourself. It is so easy to fall into an anxiety spiral, but those spirals don’t help you in any way. Try to break yourself out of them and make sure you are doing what is in your power to help your body.