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. 

[greenamw]

I had a similar rough patch a few months after my own head surgery, especially the random breathlessness and chest tingling. It freaked me out at first because every test came back fine, which just made things more confusing. For me, it seemed like the nerves just needed time to settle and I noticed that stress or even small physical activity sometimes made the symptoms show up more. It really did help just talking with others who’d been through something similar because it’s not exactly stuff your doctor always warns you about. When my breathing felt off, I started looking into ways to strengthen my breathing and calm my nerves at the same time. I found it useful to mix gentle breathing exercises into my daily routine. Tips and devices focused on respiratory health can make a difference. I stumbled across something about respiratory wellbeing at https://omhale.com/ if you're interested in more on that.

[mwatto]

I have had very bad stabbing ear pain AN right side for over 6 years. Was in fact the only symptom I presented with and I still get it. It also wakes me up during the night. The only thing that helps me is medical CBD/CBN (Humacology brand). Nothing else makes any difference. My specialists (I have a radiation oncologist and a neurosurgeon as a second opinion) say stick with this then. It was also suggested I have TMJ teeth clenching maybe caused by the AN so I do sometimes wear a mouth guard at night which I hate but it does help. Its very distressing as the pain comes out the blue and often when I am sleeping. I do work on inflammation, vagus nerve stimulation, some targetted supps like magnesium, and I do neck and eye exercises, gentle face and neck massage with a roller. A gold gel pack on neck before bed. All these help somewhat. I can tell you that it has not got worse but it also has not improved over the years. If I lie on that side it def aggravates it so maybe its pressure or circulatory like a blood vessel impinging. I have had the trigeminal and facial nerve examined in my MRIs but there was nothing going on and my AN continues to shrink. The pain is real and I empathise with you!