My Turn as the Patient
I don't have very many true fears, but I can tell you two of them. One is the feeling of being trapped. I don't have to be in an enclosed space, I just have to feel like I can't escape. I have to feel unsafe and unable to get away. Dad says it's a form of claustrophobia. The other is new doctors. New doctors make my blood pressure go up, they tongue tie me and they, in general, turn me into an idiot. This really only happens when I'm the patient. It's a new problem. One that has only really starting happening in the last five years or so.
Why am I anxious, fearful really, of new doctors? Because they hold the power to me getting answers and treatments and they typically don't believe me. I leave there feeling powerless and the size of an ant. So when I have to meet a new doctor my delightful brain starts prepping me the second I walk in the door. I've worked on dealing with this by bringing someone with me to new appointments. I took my dad with me to my geneticist appointment in 2016. I took my mom with me to my first sleep specialist appointment in 2018. And on Friday, when I went to the ER, I had my husband take me.
Why did I go to the ER? I went to the ER because for the last three weeks I've been dealing with nerve issues in my neck, upper back and down my left arm into my hand. I haven't set up primary care in Indiana yet. I made an appointment a week or so ago, but it isn't until August 14. I figured I would just tolerate this until then. But on Thursday it got bad. The burning and tingling and numbness was no longer just in my neck and across my shoulders, but further down my spine. And I started getting vertigo. While sitting down. I was so fatigued by Thursday night that I heated up leftovers after getting home from work and immediately went to bed.
By Friday the burning, tingling and numbness were still there, from midway down my spine up to the back of my head, across my shoulders and down my left arm into my pinkie and ring fingers. I kept dropping anything I had in my left hand if I wasn't paying close attention. I had to concentrate on holding on to things or my hand just wasn't actually doing what I told it to do. My arm was weak and basically becoming useless. And the dizzy spells were not going away. They weren't constant, but they were more than a bit disconcerting. Then my right hand started tingling.
Now this is not the first time I've had nerve issues. I've been to the doctors and urgent care many times over the years for sciatica, and even had some of these same issues in my left arm and in my neck and thoracic spine last year. Last year the issue slowly got bad and lasted constantly over 5 months. I had x-rays done and an EMG and everything came back normal. And most of the doctors I saw told me that my symptoms were probably not anything to worry about. Basically take an advil and get over it. For the record, advil doesn't work on this. Neither does traditional pain meds. I know because we've tried those.
So when the nerve issues led to numbness, then I started getting dizzy and then all of a sudden I found myself not being able to talk very well? Like word choice issues, not physically not being able to speak, I kinda freaked out. So I drove home from work and told my husband I was going to the ER because at least there they have an MRI and I didn't think there was any chance I was going to make it through this for another multiple months now that both hands were acting up and I kept getting dizzy. So he drove me to the ER.
I hate the ER with a passion. It was not a pleasant experience. But I'm going to choose not to dwell overly much on that. The doctor was a bit of an ass to me. Made sure to tell me that this wasn't an emergency and my symptoms had no correlation and it sounded like anxiety was likely causing a lot of it and he could do an MRI, but that it would mean we would be there for hours, was I sure I really wanted to do that? At this point the blood pressure cuff turned on again and I glanced up and my blood pressure was significantly up. Mostly because I wanted to jump off of the bed and throat punch him. Thankfully my husband was there to very reasonably say, "An MRI is the only test that hasn't been done." so I looked at the doctor and said we are already here, do the MRI. So they did.
I was in that stupid machine for 80 minutes. Thankfully the techs put a washcloth over my eyes so I couldn't see that I was caged in, and in a giant tube and didn't feel trapped. Otherwise I would be facing both of my fears all in one night. Then the stupid doctor made me get a chest x-ray. When I came back from all of this, they informed me that they had never had me do a urine test before they sent me to MRI, so I was not allowed to have a drink of water. And I would not be allowed to have anything until ALL of my test results came back. Great. Then they popped back in later to tell me there was a delay in radiology and it would be longer to get my results back to us.
After about another hour the doctor came back in. He was suddenly no longer telling me I had anxiety. He said nothing about my symptoms no longer fitting together. Now he's telling me I have no immediate surgery concerns, but I have a syringomyelia, which is cyst in my spinal cord that will need to be closely monitored by a neurosurgeon, and he needs me to call this one guy, because he's sending my scans to him and he can get me in pretty much immediately. Make sure I call him first thing Monday morning. Oh and I also have a herniated disc at C5-C6 and a protruding disc at T8-T9. If I have a sudden worsening of symptoms, extreme pain, my arm suddenly goes completely numb, I need to IMMEDIATELY get to the ER. He's giving me steroids because that should help with the discs. He pats me on the leg, tells me again to make sure I call the neurosurgeon first thing Monday morning, apologizes for the delay and leaves.
I'm not going to lie, I was a little shocked. And I was feeling more than a little triumphant and validated because I have been telling all of these people that I am NOT MAKING THIS UP. But it apparently takes over a year in our healthcare system to find out this shit? It takes being treated like a crazy person over and over and over again to find out that yes, you have a legitimate problem. Because you can't even get the testing done to show what's going on most of the time. Not without someone actually listening to you without immediately trying to label you as having "generalized anxiety." Now I'm not faulting ALL doctors. I have, and have had, some truly amazing doctors.
When I left the ER they did give me discharge instructions, but not a whole lot of information, so I did some google sleuthing and found links to the patient portal and got signed up for that. Because no one ever told me if any of the other blood work or urine tests or anything else ever came back or what the results were. And I also wanted the radiologist report on my MRI scans. Because I know that there is always some information that gets muddled, whether it's something I forgot, or they didn't mention, etc. So I find out that the syrinx, the actual cyst, is extending from T3-T4 down to T11 in my thoracic spine and measures up to 2mm. And that gave me a little pause. He said cyst, I thought like it's this little thing next to one of my disc issues. Somehow I never imagined it running down most of the length of my thoracic spine...
So now I have to call the neurosurgeon on Monday and make an appointment and then talk to work to somehow get approved some hours off to go said neurosurgeon to find out more information about a cerebrospinal fluid filled cyst inside of my spinal cord. For the record CSF shouldn't be inside your spinal cord. So while I'm here taking my steroids like a good girl, and doing my best not to imagine worst case scenarios, I'll be resting and trying to not lift anything over 10 lbs or do anything that strains my back per my discharge instructions. Basically I get to order my husband around, which honestly is one of the benefits. I even got him to do dishes! He's a keeper. And lucky him, he's about to experience his wife on a dosepak of steroids (it's not pretty.)
Why am I anxious, fearful really, of new doctors? Because they hold the power to me getting answers and treatments and they typically don't believe me. I leave there feeling powerless and the size of an ant. So when I have to meet a new doctor my delightful brain starts prepping me the second I walk in the door. I've worked on dealing with this by bringing someone with me to new appointments. I took my dad with me to my geneticist appointment in 2016. I took my mom with me to my first sleep specialist appointment in 2018. And on Friday, when I went to the ER, I had my husband take me.
Why did I go to the ER? I went to the ER because for the last three weeks I've been dealing with nerve issues in my neck, upper back and down my left arm into my hand. I haven't set up primary care in Indiana yet. I made an appointment a week or so ago, but it isn't until August 14. I figured I would just tolerate this until then. But on Thursday it got bad. The burning and tingling and numbness was no longer just in my neck and across my shoulders, but further down my spine. And I started getting vertigo. While sitting down. I was so fatigued by Thursday night that I heated up leftovers after getting home from work and immediately went to bed.
By Friday the burning, tingling and numbness were still there, from midway down my spine up to the back of my head, across my shoulders and down my left arm into my pinkie and ring fingers. I kept dropping anything I had in my left hand if I wasn't paying close attention. I had to concentrate on holding on to things or my hand just wasn't actually doing what I told it to do. My arm was weak and basically becoming useless. And the dizzy spells were not going away. They weren't constant, but they were more than a bit disconcerting. Then my right hand started tingling.
Now this is not the first time I've had nerve issues. I've been to the doctors and urgent care many times over the years for sciatica, and even had some of these same issues in my left arm and in my neck and thoracic spine last year. Last year the issue slowly got bad and lasted constantly over 5 months. I had x-rays done and an EMG and everything came back normal. And most of the doctors I saw told me that my symptoms were probably not anything to worry about. Basically take an advil and get over it. For the record, advil doesn't work on this. Neither does traditional pain meds. I know because we've tried those.
So when the nerve issues led to numbness, then I started getting dizzy and then all of a sudden I found myself not being able to talk very well? Like word choice issues, not physically not being able to speak, I kinda freaked out. So I drove home from work and told my husband I was going to the ER because at least there they have an MRI and I didn't think there was any chance I was going to make it through this for another multiple months now that both hands were acting up and I kept getting dizzy. So he drove me to the ER.
I hate the ER with a passion. It was not a pleasant experience. But I'm going to choose not to dwell overly much on that. The doctor was a bit of an ass to me. Made sure to tell me that this wasn't an emergency and my symptoms had no correlation and it sounded like anxiety was likely causing a lot of it and he could do an MRI, but that it would mean we would be there for hours, was I sure I really wanted to do that? At this point the blood pressure cuff turned on again and I glanced up and my blood pressure was significantly up. Mostly because I wanted to jump off of the bed and throat punch him. Thankfully my husband was there to very reasonably say, "An MRI is the only test that hasn't been done." so I looked at the doctor and said we are already here, do the MRI. So they did.
I was in that stupid machine for 80 minutes. Thankfully the techs put a washcloth over my eyes so I couldn't see that I was caged in, and in a giant tube and didn't feel trapped. Otherwise I would be facing both of my fears all in one night. Then the stupid doctor made me get a chest x-ray. When I came back from all of this, they informed me that they had never had me do a urine test before they sent me to MRI, so I was not allowed to have a drink of water. And I would not be allowed to have anything until ALL of my test results came back. Great. Then they popped back in later to tell me there was a delay in radiology and it would be longer to get my results back to us.
After about another hour the doctor came back in. He was suddenly no longer telling me I had anxiety. He said nothing about my symptoms no longer fitting together. Now he's telling me I have no immediate surgery concerns, but I have a syringomyelia, which is cyst in my spinal cord that will need to be closely monitored by a neurosurgeon, and he needs me to call this one guy, because he's sending my scans to him and he can get me in pretty much immediately. Make sure I call him first thing Monday morning. Oh and I also have a herniated disc at C5-C6 and a protruding disc at T8-T9. If I have a sudden worsening of symptoms, extreme pain, my arm suddenly goes completely numb, I need to IMMEDIATELY get to the ER. He's giving me steroids because that should help with the discs. He pats me on the leg, tells me again to make sure I call the neurosurgeon first thing Monday morning, apologizes for the delay and leaves.
I'm not going to lie, I was a little shocked. And I was feeling more than a little triumphant and validated because I have been telling all of these people that I am NOT MAKING THIS UP. But it apparently takes over a year in our healthcare system to find out this shit? It takes being treated like a crazy person over and over and over again to find out that yes, you have a legitimate problem. Because you can't even get the testing done to show what's going on most of the time. Not without someone actually listening to you without immediately trying to label you as having "generalized anxiety." Now I'm not faulting ALL doctors. I have, and have had, some truly amazing doctors.
When I left the ER they did give me discharge instructions, but not a whole lot of information, so I did some google sleuthing and found links to the patient portal and got signed up for that. Because no one ever told me if any of the other blood work or urine tests or anything else ever came back or what the results were. And I also wanted the radiologist report on my MRI scans. Because I know that there is always some information that gets muddled, whether it's something I forgot, or they didn't mention, etc. So I find out that the syrinx, the actual cyst, is extending from T3-T4 down to T11 in my thoracic spine and measures up to 2mm. And that gave me a little pause. He said cyst, I thought like it's this little thing next to one of my disc issues. Somehow I never imagined it running down most of the length of my thoracic spine...
So now I have to call the neurosurgeon on Monday and make an appointment and then talk to work to somehow get approved some hours off to go said neurosurgeon to find out more information about a cerebrospinal fluid filled cyst inside of my spinal cord. For the record CSF shouldn't be inside your spinal cord. So while I'm here taking my steroids like a good girl, and doing my best not to imagine worst case scenarios, I'll be resting and trying to not lift anything over 10 lbs or do anything that strains my back per my discharge instructions. Basically I get to order my husband around, which honestly is one of the benefits. I even got him to do dishes! He's a keeper. And lucky him, he's about to experience his wife on a dosepak of steroids (it's not pretty.)
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