Am I Experiencing Common Side Effects?

[tammywatson]

I am 5 months post-SRS surgery (one treatment) and I am seeking information regarding the various side effects I am experiencing.  Two weeks ago I  and began having headaches (never had them for the five years while I was W&W).  I frequently have pain in my right ear that I can only describe as having a knitting needle plunged in my ear. By the way, the tumor is on the right side.  I also started experiencing facial spasms whereby the entire right side of my face pulls to the right.  Sometimes the intensity is so strong that I can feel the pull in my neck.  The frequency is increasing also.  Initially, it occurred every few days.  Now, it's multiple times per day.  I am tracking and documenting these occurrences to determine if there is a rhyme or reason to the onset.  So far, I do not see a pattern.  I lost my sense of taste (I first thought I contracted COVID but I tested negative); however, it has now returned.

Strangely, I also have tingling in my chest, feelings of breathlessness, and difficulty breathing.  I had several tests to check my heart and lungs and I'm all good there; so I'm left to assume that the latter symptoms are also related to the AN.  While in the hospital for the chest symptoms, I received an MRI of the brain and I was told that the tumor is swollen and is irritating the facial nerve.  I was placed on a 5-day steroid (Dexamethasone) treatment to reduce the swelling of the tumor. 

Has anyone experienced these side effects?  If so, can you share any information or advice?  The ANA organization has provided me with the best information and support so I thank you all in advance for your feedback. 

[Callie08]

Hi there,

I am 4 months post Stereo tactic and have many of the same symptoms you have: pain in right ear (my AN ear), breathlessness, and difficulty breathing. My numbness us in the brain,however. I have been going through the gamut of testing assuming that my issues are colored with me acoustic neuroma,though I've never had any of these issues prior. It is an odd sort of relief to know that I am not the only one experiencing these strange side effects. Unfortunately, because I am only a few months post-op,I have no pearls of wisdom.

Has your neuro said anything about your chest tightness or breathlessness?

J

[tammywatson]

I apologize for the delayed response.  No, my neuro recommended that I see a cardiologist.  Although I may do so, I am hesitant due to the favorable results of all of the chest-related tests.  As an update, on some days, the symptoms are milder than others.  I'm noting my diet and activities to see if it makes a difference.  So far, I do not see a pattern. 

I hope that we both will have relief soon.   Thanks for responding.