This is the second part of my 2 part series discussing the not so straightforward health issues that I have faced this year, as well as the beginning of my search for my answers. This post will only make sense if you have read part 1.
As I am awaiting the MRI of my neck, I wonder if Dr. W is missing something? Could a disc in my neck really be causing my feet to go numb? My neck was bothering me, but the pain wasn’t horrible anymore. I wonder if it has something to do with the pain I was experiencing in my lower back. I once again call Dr. W’s office and explain what’s going on. They tell me to make an appointment with his physician’s assistant to discuss if another MRI is warranted. I figure if it’s not necessary, I can always cancel it. Unlike Pokémon, I am not trying to collect them all!
I meet with the PA after work one day. She coldly says, “I have read through the copious notes from ALL of your phone calls, your visit here and from your physical therapist.” She examines me and says there is no reason to order another scan. I assure her I looked differently a week ago when I was very symptomatic. In a manner that appears condescending, she asks me if I’m capable of working. She offers to write a letter to my employer if I need time off while sorting this out. I find this question odd. I wonder why she thinks I may not be able to work. The last thing I needed was to be home obsessing about all of this. I enjoy the company of my coworkers and the students that I counsel. I also had so much work to do before the school year ended. I tell her “no thank you. I have no problem working.” The whole appointment leaves me baffled, but I am happy that I at least tried to advocate for myself.
The following week, I finally get the long, awaited upright MRI for my neck. I get to see this wondrous machine that people from all over the southeast are vying to get into. My appointment is at 9pm on a Tuesday night. (They really do run this thing day and night). The great thing about it is that you can watch tv during the scan. The volume isn’t on because you wouldn’t be able to hear it over the noisy machine. I had to take my glasses off, so there was a television on with what resembled to be an HGTV show that I couldn’t really see or hear. Lucky me!
Three days later, I have my appointment with Dr. W. He tells me very sternly, “your scans are clear, but that doesn’t mean you are in the clear.” I question him just to make sure I fully understand, “so you are saying that based on my scans, there aren’t any issues?” Dr. W. retorts back, “you are not listening to me! That’s not what I said at all!”
As Dr. W starts the nerve testing, he brings up my appointment with his physician’s assistant. I tell him I was trying to be proactive seeing how long it was taking to schedule these MRIs. I figured the scan could be cancelled if all of the answers needed were received from the other tests. I then say jokingly, “I was hoping to get an appointment before July.” (The date of this appointment was May 18.). As he sticks a needle into my arm, he says caustically, “I don’t appreciate your snarky comments!” with a look of disgust on his face. I try to appease him due to the vulnerable position I’m in. I say, “I didn’t mean anything by this. I’m often sarcastic when I’m nervous.” He goes on to say that we were so kind to answer all of my phone calls and to “squeeze” me in with his PA. Squeeze me in?? They literally offered me a dozen appointment options with her. I was also polite with every single person I spoke with. When I talked earlier about freaking out about various things- that was more of an internal feeling or something shared with my husband & some close friends. I never was rude or acted in a hysterical manner to anyone at this practice. He acted like he was doing me a favor by addressing my concerns. I wasn’t there because I stubbed my toe, for goodness sakes.
The nerve testing goes on and he sticks a needle in my lower back (ouch!), indicating some level of nerve irritation. Dr. W. now says dryly, “I’m going to order the MRI of your lower back. I assure you it will be before July. Your insurance company probably wouldn’t have approved 3 scans at once any way, so it makes sense that we are splitting them up like this.” I have no clue if this is true or not. I’m guessing there are instances where it is medically indicated to have multiple scans at a time, like accidents or more serious illnesses that impact multiple systems of the body. I really don’t know. I am a psychologist, not a physician. I firmly believe he is making excuses for not listening to me.
Dr. W goes on to discuss my week where I was barely functioning- where I was stuttering, had difficulty walking, etc. He says, “since this happened only once let’s just chalk this episode up as a fluke. I could give you a referral to a neurologist, but I really don’t think it’s necessary.” I tell him I’ll take that referral and think about my next step.
I leave the appointment baffled about this interaction, but relieved that there was nothing really wrong with me. I learned that the damaged nerve in my shoulder was improving, which was great news & there was nothing wrong with my neck or brain. Maybe this was some weird depressive episode after all!
Immediately after the appointment, I take my car to Jiffy Lube for an oil change. I decide to read the radiology reports while I wait. The report on my brain reads as follows, “there is a downward ectopia of the cerebellar tonsils 7 mm below the foramen magnum. Impression: Chiari 1 Malformation.” This shouldn’t be! I just came from Dr. W’s office- he said the scans were clear. Saying I’m feeling perplexed is an understatement!
I immediately go to Google and look up Chiari Malformation. There are a multitude of symptoms for this disorder- many that overlap with what I have been experiencing- including: numbness, neck pain, muscle weakness, difficulty with speaking, headaches, difficulty with motor coordination and so forth. Apparently, this is a congenital condition that can often give individuals issues later in life. Having a Chiari Malformation means that my cerebellum is protruding from my skull. I cannot figure out why this wasn’t mentioned to me, especially when it seems to describe what’s going on.
I call Dr. W.’s office yet again and politely ask what this means. His nurse calls me back and reads the report to me. She then says “Dr. W gave you a referral to a neurologist. You can discuss this there.” This is the same referral to the neurologist that he tried to convince me was unnecessary. I am so confused.
Before I move forward, I want to discuss the interaction with Dr. W. Why was I treated this way? Why were my symptoms not taken seriously? Why didn’t he tell me that there was something going on with my brain?
I physically present as younger than I actually am. Recently, while taking my son to a birthday party at Chuck-E-Cheese, I was mistaken as my friend’s daughter when checking in for the party. I am actually older than this friend, whose teenage daughter I was assumed to be. My friends and I had a good laugh with this one. However, looking youthful is not a valid reason to discount someone’s medical issues.
I also realize that I don’t present as someone who is in a great deal of pain or who is suffering immensely. Basically, because most of the time I’m not. The way I describe myself is functional, yet often uncomfortable. Either my hands or feet are numb (or both) and I have had constant headaches for the last few months, with various other intermittent symptoms. Some days are better than others. There are times, I feel like someone shoved my head into a vice and set it on fire. I did not show up in his office moaning in pain. Maybe, I didn’t seem sick enough to be taken seriously. That’s not my style anyway. I have had 3 drug free childbirths, which included delivering my middle child in a moving vehicle. When I went to the hospital to deliver my 3rd child, the staff weren’t sure if it was me or my friend, who was my doula, that was in labor. I wasn’t acting like the typical person that was about to deliver a baby. I’m typically low key about this kind of stuff & do believe I have a fairly high threshold for pain. I’m guessing most people seeking help from a spine and neurosurgery practice appear worse off than me.
Did Dr. W not like that I tried to get a step ahead of him? Does gender play a role? My youthful appearance? My odd array of symptoms? Did he think this was a psychiatric issue? I certainly wasn’t malingering and this isn’t a case of Munchausen’s Syndrome. I am not a hypochondriac by any account and pretty much avoid going to the doctor like the plague. For example, I went for my first physical in 15 years in April when I started feeling off. Who knows what the reason was? Regardless, Dr. W did not take me seriously and was not interested in helping me sort this out.
Several weeks after the bizarre encounter with Dr. W., I go for my 4th MRI of the year. I plan to have a party once this is all figured out. I will print out all my scans and we can play “pin the tail on the Lauren.” At this point, I’m becoming a regular at the imaging center. This shouldn’t be like Cheers, “where everybody knows your name.” I chat with the receptionist and she allows me to bring my file back to the MRI waiting room myself, since I know where to go. I read through it before dropping it in the technician’s mailbox as instructed. The file is riddled with mistakes and inaccuracies. The technician greets me warmly as she remembers me from my last visit. Sadly, it wasn’t the technician who was a butt implant aficionado. I chat with the receptionist once I finish. She tells me to “get better” upon leaving. If only it would be that simple…
A few days later, I have the follow up appointment with Dr. W to review my last MRI. This time, I bring my husband, Mike with me. Dr. W’s demeanor appears different with Mike in the room. He warmly says to him, with a look of concern on his face, “We still don’t know why Lauren had that episode in April, which is why I gave her the referral to a neurologist.” The anger in me is welling up. He didn’t want to give me that referral! He said the week where I could barely function was probably a fluke! Now, with my husband in the room, he all of sudden cares!
In the past 6 months, where I have been pretty miserable, I have told off more people than I have in my life. I decide to add Dr. W to that list. I call him out on not sharing the Chiari Malformation diagnosis with me. He retorts back, “I don’t have time to go over with you every single thing that is on the radiologist’s reports.” The anger in me is overwhelming at this point. I say, “I think it would be important to share it with me, when the information in the reports describes my symptoms.” He rolls his eyes and says caustically, “what symptoms of yours does the Chiari Malformation describe?” I begin to share pretty much all of my symptoms with him- numbness, muscle weakness, coordination difficulties, neck pain, headaches in the back of my head, etc. He says, “Chiari does not cause all of that! What are your sources?” I name several websites from medical centers that specialize in Chiari Malformations. I realize I may sound like an idiot saying that my internet research trumps your medical degree. Due to this situation I have been thrown into, I have done a great deal of research on Chiari Malformations. I learned they are controversial in medicine. Neurologists and neurosurgeons who specialize in them understand the ramifications of the malformation, whereas most doctors don’t & are often quick to dismiss them. Dr. W appears to fall in the second category. Dr. W. then says, “I’m done with you! You can see Dr. H, our Chiari guy, and work this out with him.” I agree that we are more than done. Before leaving, he says, “I really am a nice guy.” Typically, when you have to make a statement like that- it means you aren’t.
After the debacle with Dr. W, I am awaiting getting an appointment with a neurologist. Somehow, in true Lauren fashion, the referral gets lost. Once it is resent, I am given an appointment for mid July. The referral was initially made in mid May. Really?! 2 months to get an appointment! Later, I find out that the neurologist’s office is LITERALLY across the hall from Dr. W’s practice. I would have hand delivered the referral. My life is a comedy of errors!
Due to the advice of some doctor savvy friends, I was able to get myself in for a cancellation sooner than July with a neurologist. I won’t go into details about that appointment, but it did not yield any helpful information. However, I was taken seriously and treated respectfully. The appointment with Dr. H (the practice’s “Chiari guy”) fortunately did yield some helpful information. I did feel validated when he said the Chiari Malformation could likely be the source of my issues. He saw some things on my scans that the other doctors missed. Dr. H ordered some more tests to hopefully start getting to the bottom of this, including another MRI to add to my growing collection. I am resigned to accept that this may take awhile. In the words of the late, great Tom Petty, “the waiting is the hardest part.”
This has definitely been a year that I have had no choice but to grow up. Yes, I’m pushing 40. Despite, having 3 kids, a dog, a career, a house, and loads of responsibilities (as well as laundry), I’m still a kid in many respects. Up until this year, I spent all my free time hanging upside down and working out. I have never had to deal with health issues like this- nothing beyond the scrapes, sunburns & fevers of my children. This year, I have been forced to learn lessons in patience, restraint, and most of all perspective. My shoulder being injured seemed like the end of the world to me. However, now I have a bigger issue to confront, far greater than an injured shoulder. I am thankful for those who have reminded me that strength goes beyond the physical. As someone, who has prided herself on physical strength, I have needed this reminder & will most likely need it again as I figure out how to best address this issue with my brain. This certainly has been a questioning year for me. Hopefully, the answers will make their appearance when I need them.
17 thoughts on “A Year with Questions – part 2”
My goodness you’ve been through a lot! I am impressed how well you kept your composure with that Dr. W. I’m not so sure I could have done so myself but I’m far from low key. I hope your next MRI yields more answers than questions!
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Thank you! It’s been one hell of a year!
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My dear friend I am so sorry you have been going through so much. It sounds like this doctor is a jerk and a disgrace to the medical profession. I pray you will soon find some answers to your concerning symptoms. I could not imagine what you have been through. Prayers for you.
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Thanks, my friend! You have been through a lot as well. Miss you!!
I don’t even know what to say. That is beyond ridiculous. Mary Kait went through something similar during pregnancy and ended up switching doctors. I wish something could be done about these uncaring and unprofessional people. I’m praying you continue to get answers. Hope to see you soon!
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It’s been quite a road & this is just the start. Sorry to hear Mary Kait dealt with this as well. I have a letter of complaint that I’ll send when I’m sure I’m done with the practice. I hope we can connect in person soon!!!
Lauren, your story is mine as well. Every. Single. Word. Thank you for your perspective, and for giving me the validation to continue advocating for my health and understanding of my Chiari.
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Wow! So many of the stories I have come across are so similar- it’s crazy! We all deserve better! I will try to do the same. It’s not easy as I am learning.
I’m sorry you are going through all this, but it’s great that you are opening a forum for others who have similar issues
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You go to AerialCLT as well! I just moved away and totally miss it!
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Yes! I love it there! It’s my happy place
The egg photo is very helpful for understanding the condition! What would have happened if you didn’t look over those scans Dr. W gave you?! I am furious for you and it is unacceptable how he wrote you off. I am proud of you for keeping your throat chakra (HA!) open and speaking your truth in these circumstances. The Alpaca pic to lighten the mood is great. 🙂