I AM NO LONGER THE SAME PERSON

This IS Happening

Age: 63

Diagnosis: Vestibular Schwannoma

I am not a writer and typing this will be difficult. Please excuse bad punctuation, thank God for Spellcheck. I do not wish to bore anyone with my unleashing of feelings.

I was always a hardworking, very active, multitasking, and outwardly social person. My career was as a Human Resources Executive. Now I do not know who I am or what I am capable of doing.

Out of all my family and friends, I was the healthiest; great blood pressure levels, no cholesterol issues, no heart problems, no arthritis, no diabetes, all my tests came back in normal levels, I rarely got sick. Then when I turned 60, I started saying I wasn’t feeling ‘right’, most responses were “that’s what happens when you get older”. All my wellness exams came back good as always but I knew something was off. Then I started getting what I thought was ongoing sinus issues. I bought every OTC sinus or allergy medication I could find in the drug store, when my symptoms were really bad, I went to a walk-in clinic for stronger medication. Time progressed. The pain was concentrated behind my left eye, down into my cheek, into my jaw, and then into my throat. I saw both an optometrist and dentist looking for answers, their expertise saw nothing for them to be concerned about. My PCP tried to schedule me for a CT scan but because she is an Internist my insurance company denied the request. She then referred me to an ENT. By the time I got in to see him, I described the pain as intense, predominately in my head but now radiating down my neck and back into my extremities. He conducted the CT scan and it came back CLEAR, so his next recommendation was allergy testing. As with, I believe, most people, they found I had minor allergies. I began allergy shots. Still, the pain intensified in my head and throughout my body. My PCP sent me to a Pain Management Doctor who after more tests prescribed a series of medications. The pain became manageable but I was ‘loopy’. Now I was referred to a Rheumatologist, after more tests I was finally referred to a Neurologist. Out of all of the tests that had been performed over the year the one part of my body never checked was my brain. This neurologist ordered an MRI of my brain. The MRI was done on a Friday, by the next Monday I was told I had an Acoustic Neuroma. I was sent back to the ENT for hearing tests, I had significant hearing loss. Even though I had described my pain thoroughly to this Doctor he scolded me for not telling him in the first visit I had ringing in my ear and hearing loss. My response was “the pain is so intense I cannot distinguish those particular symptoms”. I was now referred to a Neurological Surgeon.

On 10/5/2020, late into my 62nd year, I had surgery, using the retrosigmoid approach, to remove the small dime-sized tumor. The entire tumor was removed. I lost more but not all my hearing. There is no noticeable facial change. Within the first 10 days I noticed the pain in my body, below my neck, was no longer present. I stopped all medication. The surgeon said that pain was not related to my tumor, he had no explanation. My PCP had no medical explanation either. We decided it was sympathy pain. All I know is that it was that pain that kept me looking for answers. However, now I was having severe headaches, some were crippling, like an icepick being jabbed from the bottom of my skull up out the top of my head. I had what can I can only describe as electrical impulses going through my head. I joked I was communicating with ET. There was a horrible metallic, sour bitter taste in my mouth. I was dizzy, unbalanced, uncoordinated, and unfocused. The surgeon, when discussing these symptoms, asked if I thought I lost IQ. Without hesitation, I told him that is what I felt. I could not think straight, everything took longer to do, being on the computer was impossible as were lengthy phone conversations, watching TV or reading. He said these symptoms were a normal part of the healing process. I began Vestibular Therapy on 11/6/2020. At this time and through December I could not ride in a car without getting motion sick or go to a grocery store or restaurant without getting sick.

It is now February 2021. I have shown improvement. In verbal questioning of how I feel my ‘disability’ score has improved from a 78 to a 60. I no longer hold my neck and shoulders stiffly; I can now rotate my head looking from side to side. I move to 40-50 beats on a metronome depending on how I feel. I have stopped communicating with ET. My coordination is still not what it was, I walk OK with a cane. I practice my eye movements; it is not easy keeping my head still just using my eyes. It is not easy following objects in various movements for any length of time. I can now watch TV for an hour or two as long as it isn’t fast moving or loud action scenes. I can read a chapter or two. Moving my head up and backward will bring on imbalance, bending over will bring on imbalance. Getting up too fast or moving too swiftly (what had been normal) will bring on imbalance. I feel as if my brain is like a rolling wave. Typing on the computer is daunting. I am still ‘cloudy’ in my head, at times I feel like I have the onset of Alzheimer’s. I go out to eat with friends but now at quiet times around 3-4pm. Thinking of returning to my job as an executive scares me, I could not perform as I had, I would be demoted or fired. I really believe I am managing these symptoms well, not TOO depressed or anxious.

The pain below my neck has never returned. All of my wellness exams continue to show good results. the only medication I take is Lunesta to help me sleep and Omeprazole for my acid reflux.
What are hard to deal with and at times unbearable are the headaches. I have them every day, only the severity changes. I keep a journal tracking the pain level, activity and weather. I will now, after reading this site, track food consumption. My coffee and wine intake decreased since the surgery and stopping work. I would say a good day is at a pain level of 4-5, a normal end of day after basic hygiene, home chores and walking the dog comes in around a 6, after therapy I am at a 7, on really bad days my head pain is off the charts. I am not overdramatic; I always had a high tolerance for pain. I think this is why I can function at a level 6 or 7; I have learned I must rest in-between each task I do. Multitasking as I used to do is out of the question. The ringing in my ear has become more noticeable.

But at least 2-3 days a week I am immobilized. No aspirin, Tylenol, Motrin, etc… helps, all I can do is rest quietly. The pain goes down into my neck. I get nauseous, I do not throw up. I cannot walk my dog because of my imbalance, her 11lbs of pulling will bring me to the ground. Most noise is intolerable, light hurts, I can actually pinpoint 2 moles on my head under my hair because they feel like they are on fire. The ringing and pressure in my ear increase to a point that makes me think the side of my head will explode. During some of these times I think the ringing is now happening in my right ear. The metallic taste returns as does the original pressure behind my left eye and pain in my cheek and jaw. I told the Surgeon of the headaches in my December appointment, he said it was normal healing. Last week I wrote to his office again through his portal describing all of the above, the response was to utilize warm compresses. A very recent new feeling is the quick onset and quickly over cold sweats.

The Vestibular Therapist believes she has done all she can and that I should be further along in my recovery. The last test she performed; goggles on, laying down, turning my head to the right side then left side, came back normal. She is the one who gave me the information to this website.

This IS happening to me. I have definitely written too much and too long. I have used this forum to unburden myself, sort of like a silent scream. If anyone has suggestions I am all ears (no pun intended). I will join a support group. Thank you.