I cried a lot yesterday. I never used to – it was a bragging point for me, that I would shed tears once a year, tops. But yesterday I started by spending an hour on my counselor’s couch recounting my dehumanizing neurologist’s appointment on Tuesday with big, fat tears rolling down my cheeks the entire time. It actually took me days to process what happened in the visit, and is the reason why I still have to write part two now.
I barely got five words out before the tears started. They were angry tears. I’m pissed. It’s not just that the doctor was a dick – because he was – but it’s that his actions could affect my life for the next few years to come. It’s not an exaggeration. I’ve been through this before too. When I had my very first shunt placed and experienced abdominal pains from day one, the neurosurgeon and general surgeon passed me back and forth for a couple of months and blamed each other for causing me pain before finally throwing up their hands and telling me that it was my imagination and there was nothing wrong with me before they had to do a large cut on me two and a half years later and discovered my abdomen was grossly inflamed from an allergic reaction to the shunt. Two and a half years before they admitted there was a problem.
The problem with this neurologist now is that he is saying that I have spasms in my face, and that I just need to stretch my muscles. He’s going to put that on my records too – and the records are going to the NIH and Vanderbilt. Vanderbilt will either take his word as gospel or dismiss his diagnosis and study me, and I have no idea which way they will tilt, but if they decide not to accept my case, it could mean YEARS of more testing before they will consider my case again.
The most insulting part of the visit with this douchebag is that he spent more time demanding to know why I wasn’t on antipsychotic meds. I am having some issues with word recall, which apparently he views as a clear sign of being psychotic. Well, that and I have this condition that no one can seem to name up to this point. He performed physical tests including forcing me to fall, all the while holding onto my hips to assist me to the next starting point because my legs shudder and I list to the right during any physical activity and I wasn’t allowed to use my cane. Then he had the balls to tell me that I was just having facial spasms. I couldn’t believe it. I said, “But you were holding me up because I couldn’t stand!” He acted as if I didn’t say anything.
This neurologist gave me the standard statement on my discharge papers saying basically “don’t come back.” I don’t make this up, people – it was there in writing. The list of doctors who will let me through their doors is tiny at this point. I would have to go through the effort of finding all new doctors to try this all over again if I wanted to get another referral to the rare diseases unit if Vanderbilt denies me this time.
I’m not crazy. I just need doctors to set aside their preconceived notions and overinflated egos and listen to me, because I have had six years of this, compared to their one hour with me and my pages of documentation that they won’t read anyway.
I sat down on Thursday night and wrote this to the doctor and his nurse. I don’t think it will change what goes in my chart but I wanted to say it anyway:
“Regarding Dx of Facial Spasm:
Just to be clear, my primary dx should NOT be functional facial spasm. I am preparing documentation to submit to the NIH through Vanderbilt and I would like it to be accurate. My symptoms have always followed the same pattern, in this order: vertigo, fatigue, slurred speech, uncoordinated walking and then ptosis. Every shunt revision has been performed after all of the symptoms have presented indicating that the shunt has clogged or broken. My shunt has been clogged since it was placed on May 11, 2015. The symptoms resolve when I lie flat, which is why I don’t have permanent damage on an EMG (and why the test was unnecessary). When I lie flat, I can feel the fluid move away from the area that it’s pressing on, as if an orange peel is slowly being removed, and the pressure is relieved from my brain. That is why my eyes open and all of the other symptoms resolve. When I am upright, the fluid pools and the symptoms return. I demonstrated this in person on Tuesday, including laying flat as well as turning my head to the far left to open the shunt to drain off fluid so I could open my eyes fully.
The printout regarding functional facial spasm does not address CSF pooling in the brain or how doing stretching of facial muscles is going to help pooling of CSF in the brain. Since I have to travel hundreds of miles in the near future to continue research on my medical mystery, it would be helpful if my records were as accurate as possible and did not contain information that does not apply to me.
Thank you.”
Next week I’ll see my primary doc and will find out if I stirred up any shit or if I have been completely ignored.
What a difference having someone who loves me and who is in my corner makes in my life, though! The Saint Paul is like my hallelujah clouds during a shit storm. I promised not to spill all of our personal details, but there are things that I feel are safe to share. The Saint Paul has a big brain and is humble, which makes me weak in the knees. He’s also a good listener. I mean this in a very specific context: If I say that I need to be touched in a certain way, he doesn’t try to correct me and say that “every woman likes” what he’s doing and he’s not going to change it. Instead, he listens and makes the adjustment, and the reward is that I don’t have to fake anything and do the crab crawl backward.
I don’t know if he noticed last night but my eyes were leaking. It was for a much different reason than 12 hours prior when I was parked on my counselor’s couch, but it felt infinitely better.
The Sick and the Dating 
In my experience neurologists only come in 2 forms: life saving geniuses who don’t realise that’s what they are or utterly self absorbed and moronic dickheads. Sorry yours is the later. If they ignore you just keep writing and demanding new information in your file or a new assessment and ask that your letters are kept on record. That’s what i did when I had a similar problem (the neurologist claimed to have not know I’d had brain surgery in the past because I didn’t tell him – I did tell him and also he had all my notes.)
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This was doctor #49 in just under 6 years, and I forget what number he falls under in the strictly neurologist category. But yes, moronic dickhead seems the norm, and it appears I have another fight on my hands. Thank you for your advice, and for saying “me too!” It’s a lonely situation sometimes.
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It can feel lonely sometimes but there are others (and a large number of us keep blogs it seems). let us know how it goes.
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Seeing specialists can be so frustrating. Sorry you’re been through this crap yet again. When I used to see specialists (gave up a few years ago now) I’m either told; “It’s a terrible condition, and not something we can help you with at this stage. Sorry” or – “Just get up and exercise. You’ll be fine if you do that” (ignoring the fact that I do ‘get up’ and do stuff. In fact, I do this to my own detriment. Have ADHD traits in my genetics and lying around is not something I enjoy). It can be a bit of a mind **** receiving night & day responses, depending on the doc (and in some cases, depending on the particular mood of a particular doc on a particular day!). Hoping that Vanderbilt decides to ‘study’ you Chelsea 🙂 It is good to read that you can let yourself feel your emotions now. That’s a big deal – and will undoubtedly help with your wonderful new relationship. I’m so happy for you Chelsea! St Paul sounds really cool 🙂 xx
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Thanks so much, Ro! I wonder if head butting the docs who say “Just get up and exercise” would be considered exercise?? 🙂
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My dear, you are not alone.
I haven’t been to as many doctors as you have. After a few doozies I started going to Duke. Well I felt I was in really good hands with my otologist (ear doc) then when I needed help the most he said he couldn’t do anything else. I asked for certain treatments and he said no.
When I went to John Hopkins they recommended the exact treatments I suggested.
I didn’t have a problem getting into JH. It took a bit of time, not as long as I thought it would, and I only saw one doctor, but he gave me hope.
I have complained that he didn’t spend enough time with me, but he planned on collaborating with my local doctors. Unfortunately, most of them have no idea with the word collaborate means.
However, if I get bad again and can’t find anyone to do the procedure he recommended, he said I can come back and he’ll do it. Yes I’ll be traveling a few hundred miles, but he will help me. When I left there he told me it was an honor to meet me and to never give up hope.
That is what doctors should do. They shouldn’t ignore us when they don’t know.
I have a neurologist here who is very good with migraines, her specialty. She told me straight out that she thinks there is more going on with me but they just don’t have the tests to prove it yet. That medical science isn’t all that.
I’m lucky I’ve had a couple of doctors who treat because of empirical evidence. Not because my numbers fall outside of normal. Because I had “normal” CSF, but that was wrong.
I went through a lot of doctors to find the good ones and there are some times I have thought I had great doctors who later turned out to be so so, at best. That’s very hard when I invested so many years with that doctor to find out it was a waste.
Keep your letters, ask for copies of your records every time you go to the doctor. Know exactly what is said and challenge it when needed. Write a challenge for Vanderbilt to see.
(I once loved a doctor and he treated me so well then I got my records and found out he was writing that all my problems were in my head. Now I get copies of my records, that way I know what they say, and I always have copies if doctors need to see something. It is almost a full time job to be an advocate for yourself.)
Thank you Saint Paul for taking care of our girl.
Never give up hope my sister friend.
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As always, I appreciate your words of wisdom, and you lighting a fire under my ass! The petition to be seen at JH comes in because I’m on medical assistance now and so the state of MN has to approve me being seen at facilities outside of MN after “all other avenues have been exhausted.” It helps in the most morbid way that Mayo has already turned me down five times. I do have the majority of my records up to July of 2015 – after that it gets spotty just because I was jumping around so much again trying to get established in a new state with an entirely new set of doctors, plus I had the whole bedsore thing to deal with and now physical therapy too. Seriously, your “nice” doctor talking smack about you in your records makes me see red. I want to clothesline him on your behalf.
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Hey. I recently stumbled across your blog and only just started reading. But when i saw this post i just had to speak up and leave a comment. It struck such a cord with me. Ive been having on going health problems since this time last year (may 2015) and ended up hospitalized for about a month in june 2015 in a neurology department. The neurologists i met (save for one) were some od the most awful, arrogant, judgmental and prejudiced assholes i have ever met. Its the dicks who cant bare to hurt their ego by saying “i dont know whats happening” or “i dont yave an explanation right now but we will find them” (usually men, i find) that are the problem. Because they couldnt find the answer in a handful of tests and in 2 minute visits per day, they completely brushed me off and declared that i was either faking my symptoms or that thy were completely in my head. One evem went so far as to say i will only get better if i want to get better and another said nothing could possibly be wrong because he saw me walk into the hospital (i was completely unable to walk and was pushed in a wheelchair by paramedics. He DID NOT see me walk). By the time of my discharge i still had no answers however i now have a psychological diagnosis (somatic or conversion) on my permanent record that (try as i might) i cannot expunge. And due to utter prejudice and arrogence in the health care system here (and im sure everywhere, unfortunately) any time i see a doctor for on going and new symptoms they see the psych diagnosis on my file and completely shut their ears to what i say. I, just like you and every other patient out there, deserve respect, deserve to be heard, and deserved to be investigated, diagnosed and treated. I am not crazy. These symptoms are not in my head. I am not imagining or making things up. And now this is a complete uphill battle i must face to find the cause of my ailments and get a formal diagnosis other than “shes crazy”. It has caused me such anxiety over the last year dealing with doctors who refuse to believe me that i actually sought out counselling. So i stand with you in your fight. I know exactly where you are and how your being treated because its happening to me as well.
You are not crazy. You are not making things up r imagining them. Your symptoms are real and i believe you. Stay strong. And keep fighting. I will too.
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Thank you. I hate that we are part of this club – I would much rather we be sisters in the spirit for much different reasons than having to convince doctors we’re not making this stuff up, nor would we wish this upon anyone in our wildest dreams. My letter to Vanderbilt when I send off my medical records to try to be accepted into the rare disease study, I’ve decided, is going to start with, “I’m not crazy.”
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