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Category Archives: schwannoma

Test results update

I’ve completed recent tests and received all the results.

Neurology
Neurology tells me my blood work is completely normal, which tested for myasthenia gravis and muscular distrophy. My EMG was “long and thorough” and normal. My first and follow-up physical exams were normal. In our follow-up appointment last night, the doctor finally admitted that he was looking for signs of MS–which he says he didn’t mention prior because he doesn’t like to frighten patients–but found none. After he said that, he said he could suggest a brain MRI, but found no symptoms to support getting one. I told him I’d had a brain MRI five years ago at an ER visit and that they found no signs of any issues (other than a schwannoma that was then “not found” at a follow-up appointment). He said if it was five years ago, and I was 40, that if I had MS, they would have seen signs of it already in the MRI. So that was even more reason to skip the MRI. His final words? Wait it out, see if any other symptoms come up, and go out about my life. He said I could try seeing a rheumatologist, but it seemed like a half-hearted suggestion.

Allergy
I saw the allergist on Tuesday. He was very nice, listened to everything I had to say and asked questions. He told me up front he didn’t think the fatigue/exhaustion was related to allergies, but said it was worth finding out what kind of allergies I had going on. He didn’t seem to understand my wheat “allergy” and asked a lot of questions…including when I told him that I’d been gluten free for at least twelve years, he said “and you’ve never eaten just a bite of anything? not even cake or cookies?”

W.T.F.

Would he say that to someone who had a reaction to peanuts in the past and thought they might have peanut allergies? “Not even a peanut butter cup? Not even half of one?” It was a little frustrating. I’m not sure if it was because I’m fat, or because he didn’t think the “allergy” I had was important enough? Either way, I just said, “No, it makes me feel incredibly horrible and I saw no reason to do that to myself on purpose when I knew what the cause was and it could be avoided.” He accepted that and moved on, but I suspect he didn’t really believe me. He tested me with the skin test, both a needle and a “scratch” test (not at the same time or in the same spot), including tests for wheat, rye, and barley. I had no reaction to any of the needle test–including zippo response on the wheat–but the scratch test (which is more “invasive”) popped “mildly” on dust mites. He did not test me for wheat on the scratch test… However, I will note, that when they did the scratch test version, within five minutes of them doing it, their “histamine” scratch area gave me the same response as what I get to eating wheat. My face started to get red and hot, as did my ear. When we went back so the nurse could read my results on my arm, we told the doctor, and all he said was “interesting.” But for me, it shows me that THAT response IS my histamine response, and points back to the wheat giving me a histamine reaction. In the end, he noted it as an “adverse reaction” to wheat reported by the patient. WhatEVER. I read that both skin and blood tests for allergies are only 60% accurate anyway.

Gyn/Oncology
I had my CT scan last Thursday. For the first time, I had terrible stomach issues after drinking the barium, which sucked. I made it to the radiology office, had more stomach issues, then had to stand and talk to the check-in person while she figured out what needed to be done. Then I had to go wait because they wanted to call my doctor’s office to confirm they didn’t REALLY need without contrast as that causes unneeded radiation in my particular case. When they finally got through to the doctor and recalled me to the check-in station, I was then informed that I had to pay for the CT Scan because I hadn’t met my deductible and that I had been notified ahead of time that I would put down a couple of hundred dollars in advance and follow-up the remainder payment later. I had been told no such thing…and I was PISSED and tired and felt like shit and I paid the advance because I needed the test and so what was I supposed to do? The woman doing the CT was SO NICE y’all. She really took care of me, was kind, and helped me work with my impinged shoulder. When we were done, I went back out to where my father was waiting for me in the car because I haven’t been driving myself due to my leg weakness and my imbalance and fatigue. The radiologist said my doctor would have my results by the next afternoon, but I heard nothing. I spent the weekend feeling mild terror, because when I was diagnosed with the cancer, my oncologist actually called me on a Sunday  night during dinner. It was like a little bit of PTSD to get through dinner Sunday night, but no phone call came. I finally found the results online at my oncologist’s portal on Tuesday, which said the scan was clean. Oddly, I never got any notification or update directly from the doctor, which was unusual for him.

Insurance bullshit
As it turns out, apparently the radiology center was correct and I had to pay my entire deductible for the scan because I have SHITTY-ASS INSURANCE (this is new insurance for us since May b/c Hub changed jobs). I’ve never had to pay anything for CT’s or x-rays or blood work when I go to a lab/radiology center. And I also see now having inspected the insurance more deeply that they don’t even cover 3D mammograms. And not only do I pay deductibles for all this shit, but I also have to pay 10% co-insurance. Let’s not forget that I have a huge deductible for out-of-network which means they aren’t even close to covering any of my sessions with T. I seriously thought that we had the most obnoxioiusly horrendous insurance until Hub got a job offer from someplace new and we found that they were offering something called an EPO, which would cost us $50 more a month than we’re paying now and offer us waaaaaay  less coverage. Apparently EPOs are the “new” thing that are essentially HMOs without needing referrals to see specialists, plus they have higher deductibles and cover fewer things. And insurance companies are suckering people in because they think the EPO is more like a PPO (higher level of coverage and out-of-network coverage) when in fact they are more like HMOs. So insurance companies are yet again screwing customers with lies and deceptions. Woo-hoo. Hub, in fact, turned down the job because of the health insurance and was then told the next day that he was the second “high profile” candidate in recent weeks to turn down positions because of the health insurance.

Primary care doctor
My last appointment with my PCP left me with the suggestion to go see a sleep doctor and/or the infectious disease doctor for chronic fatigue syndrome. She also told me she won’t write a note to the insurance company that indicates I have myofascial pain syndrome without me coming back in for yet another appointment–which will cost me even more money–so that insurance might consider covering some small portion of my trigger point therapy. (Neither would the neurologist, despite the fact that MPS is supposedly a neurology classified syndrome AND I was IN HIS OFFICE when I asked him.)

And so, here I am, in the same place with no plan forward. I am pushing myself to do more to see if I can just IGNORE the symptoms away. My imbalance is bad and I’m struggling to keep myself upright. I DID drive myself to PT on Monday, but it is literally five minutes from my house, on two roads that see minimal traffic. When I talked to my PT person, she said she had a client who was diagnosed with a virus who had horrible fatigue for over a year…but that after that she was fine.

I am burned out on doctors. I don’t know what I’m going to do now. Wake up, step forward, keep going. Try not to let my anxiety get the better of me as much as it has. Accomplish things when I can and celebrate when I do. Rest as needed.

 

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A year ago

A year ago at this time, I was on the down-slide of my “Prilosec-fever.” I was at the beginning stages of lethargy, I had already cut out all carbs and sugar–cold turkey–and I was falling deeply into depression. I ate very little and was barely leaving my bed. I was paranoid and having panic attacks. I had no idea what was happening to me, but it was both physical and psychological. I thought I was going crazy…I thought my brain was broken, along with my body.

Today, I’m driving and taking care of a lot of things due to my husband’s ankle problem (poor boy is in a walking cast now). I’m cooking for a get-together on Saturday, I’m grocery shopping without Hub (something I hadn’t done in years), and running errands on my own. I’m going to PT twice a week and seeing T every other week…driving myself to nearly all appointments. I’m doing laundry and taking care of the dogs, traveling out of state with family, and a few weekends ago I helped my parents setup for, run, and breakdown a yard sale.

And I’m still afraid. I’m afraid that this is all temporary and any day I will fall backwards into the pit I was in a year ago. I’m SO much more mindful of things today, of where I am physically and mentally, but I’m still afraid. I let these thoughts drift through my consciousness, but I don’t linger on them. I don’t want to dwell, I want to live in the moment and move forward in the state I am in now. I try very hard. I often wonder if other people have to try this hard to be “normal.” (whatever “normal”  means.)

I still struggle with fatigue and anxiety, don’t get me wrong. But when I look back to where I was a year ago this time, I am grateful for the progress I’ve made. Last year on Christmas eve I was in the ER, in tears, sure I was about to be committed. No one knew what was going on with me, even there. They sent me home saying I was dehydrated and needed to eat more. They sent me home thinking I had a horrible tumor growing in my brain that they would do nothing for unless it began to impact me significantly (a diagnosis that was later redacted…after I spent weeks and weeks freaking out). I still struggle with pain from my chronic illnesses, and I still get down more than I’d like.

And Hub has pointed out–and I see it myself now–that I do get short with people sometimes. I feel like I have reasons for getting exasperated with people, but Hub disagrees with me. He says I get that way without any reason he can see, but a lot of times I don’t tell him why I’m annoyed because it’s him or something he has done. But I am at the point where I pick my battles and the rest of the time I don’t want to start anything with him. It isn’t worth the energy or the aggravation, but apparently I’m still letting my annoyance show. I’m trying to work on that. I know I have this issue with my mom sometimes, too, but with the same explanation. I really really dislike (see “hate”) when she asks me three or four times in one conversation if I’m OK. Just because I’m not ebullient (fucking cheerful) all the time, she worries…and so she asks repeatedly if I’m okay. If I say YES the first time, don’t ask me again. It really aggravates me to no end. And I have told her this, but she doesn’t seem to get it. I don’t want to fight with her, but again the annoyance comes through, and i hear it, too. It is something I will continue to work through.

So I’m a work in progress. No shock there. But I am far forward from where I was last year. Thankfully.

 

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My ER experience

I went into the emergency room of a local and well-known hospital  because of the symptoms I had been dealing with for several weeks. On top of an onslaught of depression and grief, I had been suffering from extreme lethargy, lack of interest, paranoia (mostly over food), body pains, weakness, severe panic and anxiety, lack of concentration, heart palpitations, and more. I had no idea where all this was coming from, and I was unable to continue the way I was. I scheduled with my husband and parents to go to the ER on a Monday morning, so that we knew who would take care of our dog and how my in-laws (in from out of town) would be dealt with. I had packed my bags for a multi-day stay, just in case. Even though I knew I was doing the right thing by seeking help, I was scared shit-less. I was terrified the hospital would find me mentally unstable and would have me committed. I begged my husband to never let me out of his sight, to not let them take me away. I was so sure I would not be coming home that I left my husband a note telling him goodbye, telling him how much I loved him and how sorry I was that I had done this to him. There was more in the letter, very personal and private emotions that spilled out, because I knew in my heart that I was going to be taken away from my family.

We went into the ER and as expected, had to wait. Because of some of my symptoms, they did take me in briefly for an EKG to check my heart, but I guess it must have been normal because they then sent me back to the waiting room for quite some time. While I was out there, I struggled with my panic and anxiety. I struggled to sit still, but failed. I shifted in the wheelchair I’d come in on (I had no strength to walk in from the car, let alone walk through the ER), constantly moving my body around. My heart raced continuously and my fear over what was going to happen in the ER escalated minute by minute.

When they finally brought me back to a tiny room, they re-checked vitals and took a urine sample. Pretty quickly they realized I was dehydrated, so they set me up with an IV before I even saw a doctor. I don’t remember everything about the experience, but I know at some point they moved us from this one room that had a private attached bathroom, to another room that was just as small but did not have an attached bathroom. It was here I was seen by doctors, including a neurologist. They were concerned that I was neurologically impaired due to something called Guillain Barre syndrome, but the best way to test was by spinal tap. Since the neurology resident wasn’t feeling confident about the diagnosis, we requested she speak with her supervisor before we went for such a painful and (terrifying!) invasive test. Instead I went for a CT Scan of my head and neck. My husband, G-d bless him, insisted he go with me to the CT scan, even though he had to wait in the hall outside. It was a quick trip, and the neurologist came back in shortly thereafter to do her physical exam. I’ve been through these before, stand, sit, walk, scrape the foot, test the eyes, strength, balance… the majority of these results were normal for me, a few slightly abnormal, but nothing alarming. She felt my hearing was compromised in one ear from one area, but it wasn’t something I’d ever noticed.

Then the CT scan came back with an abnormality in the hearing and balance area of my brain, so they immediately scheduled me for an MRI. I’ve had an MRI before…once. I hated it. And even then I’d been concerned about the dye used because people can have anaphylatic reactions to it. But I was told this was a different kind of dye, and that if I was nervous I could have an Ativan before the MRI. I told the nurses that yes, I have anxiety, and yes, I am severely anxious about the MRI and how enclosed it is, and how I can’t keep my head still when asked to do so. But that I was too scared to even take the Ativan. They assured me the Ativan would be short-lived, and that it was unlikely that I would have a reaction. I was actually surprised at how compassionate the nurse was with me, and the resident doctor as well. And considering I was in the emergency room and could be seen right away if I had a reaction, I finally relented. They gave me a small pill and I took it. And I sat and counted the clock, waiting to feel something…good or bad. Instead I started feeling mildly sleepy…and numb. When they came to prep me an hour after the pill for the MRI, they gave me more Ativan intravenously, then took me away. They wouldn’t let my husband come this time, as they said it would be a long wait and no place for him to sit.

Although I remember going to the MRI, and how nice the techs there were, I had no real sense of time. I knew I was in there a while, no question, and I was bored out of my gourd, I was mostly just…bored. The noises were annoying, and staring up at the stupid mirror showing me my feet was … boring and aggravating and kind of confusing. It was like, what the hell were my feet doing over my head? After some time, the tech came out and gave me the dye in my IV, then rolled me back into the MRI, telling me it would only be another hour! And no, even though my ass hurt like a mother-fucker, I could not adjust on the table because I had to be in the exact same position. I think there was music playing, which they’d asked about initially (top 40 or pop, please), but I don’t remember much of it.

When I came back, my husband was waiting in the hall for me, like a caged animal. He told me I’d been gone for 3 hours. I had no idea…again I knew it had taken a while, but not that long! Ativan, interesting creature.

The neurologist came back saying I had something called a schwannoma in my brain. Benign, she told us, and smaller than they had originally thought. Centered on the balance and hearing part of my brain on one side (I think it was the right, which would affect the left side). She scared the hell out of me and my family. Schwannoma is a collection of extra cells that grows extremely slowly. They apparently don’t do anything unless it is causing problems. I’ve had balance problems for 13 years, attributed to migraine associated vertigo. Now we were left wondering if it was the schwannoma instead.

The neurologist talked to her supervisor about the guillain barre syndrome, and they decided it didn’t really match what was happening, and so the lumbar puncture was canceled. And I was told I was dehydrated and undernourished, and that my inactivity had led me to the pains I was having, as well as the lethargy and stiffness. I was told to go home, stay hydrated, eat more, and move.

(and not so incidentally, after weeks of no update from the neurologist, I made an appointment with their out-patient clinic, went out with my supportive family, only to be told by the resident and senior neurologist that there was nothing showing up on my MRI at all — well, except my brain…so the whole scare was a false reading! ARG!)

After the ER visit, the next day, I had that horrible panic attack and eventual realization about Prilosec.

 

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