New info – big decisions

I think I’ve mentioned here at some point that I planned on pulling all of my medical records from the hospitals and my family doc…just to get it all together and in front of me.  I wanted to sort it all out and make a package of some sort to send to another physician…someone outside this organization for an unbiased second (third…fourth) opinion.

So, I paid the amount they asked for ($60 for time spent copying and reviewing documents to be sure I had the legal right to see the info) and sat down to start reading the other night.  The films are on CD and they just came my way yesterday so I’ve not had the time to review those yet. … that’s on for this evening.

What I discovered has left me very unsettled and in a tough spot and I need some help to figure out what to do…that said, I can’t really offer much detail.  My problem is that I work here…for the organization who did the tests and houses all the specialists that I’ve seen.  Any issues raised will go directly to my boss (the one who doesn’t like me so much)  I need this job not only for the pay cheque and pension, but the benefits are what allow me to take the meds I do.  Without my 90% paid, what I take is too expensive for me to maintain.  It’s a bit of a catch 22.

Then this happened.  I read through my psych notes (my psychiatrist works here, of course) and was pleased to find that not only did they mark them private, they locked the notes so no one else could access them.  This means that my worries about being dismissed by so many specialists based on my mental health issues are not valid.  Plus, the notes are very clear in diagnosis – Axis 1 – Post Traumatic Distress Disorder with a major depressive EPISODE.  Not disorder…episode.  The notes actually make me appear better off than I actually am so…those worries are settled.  The surprising bit was the clinic notes from neurology.

Without spilling too much info, here’s basically what happened:  I was seen by neurology for my bilateral sciatica and drop foot in 2008.  Before seeing them my family doc ordered a CT and MRI of my lumbar spine so, when I saw the neurologist it was with brand new test results.  They did an EMG in clinic but the neurologist decided he’d do some more testing, just to be sure I wasn’t looking at MS.  He did my head to check for lesions (marker of MS, clear) and got a scan of my entire spine while he was at it.  When I went back to his office to get the test results I was told of the trouble at C5-C6 with the C6 nerve root damage and that was that.  He discharged me from care then as there was nothing he could do to help.

I read his note.  He was almost flippant in tone and remarked several times that my issues were mild in nature.  He noted the C6 with some concern but then said, and I swear, by blood boiled when I saw these words, “Although this patient does not have fibromyalgia, she is certainly heading in that direction…..”  so THAT is where all the fibro talk came from.  Not from rheumatology like I suspected (that doc just fucking stood up and walked out on my appointment, didn’t bother to come back…left me and her resident in an awkward silence as tears slid down my cheeks and the resident sweetly tried to convince me that the doc would come back).

Okay.  So…snotty doctor’s notes really won’t get me anywhere, I know.  The issues I have is with the MRI report itself.  Not only was the C5-C6 issue noted, several other things were discovered as well.  The report showed degenerative changes from C1-C7 (the neurosurgeon I saw mentioned these issues but seems confused because I didn’t’ know what he was talking about).  Then the report goes on to highlight degenerative changes through my thoracic spine, lumbar spine and coccyx.  Then there were the disc herniations and bulges.  There are several herniations in my Cervical, Thoracic and Lumbar spine (don’t know why I capitalized those) … I think the total was 8 but I’m not sure…my tears were blurring the words too much last night.

All that now known, I started looking into why no one had told me of all of this.  The neurologist ordered and reviewed the report but did not cc my family doctor.  He also didn’t mention most of this in his flippant, snotty clinic notes.  I wasn’t in there  for him to look at my entire spine, it’s true, but still….I work in health care and I know the ropes.  Someone was responsible for delivering those test results to me and, by law, it’s the physician who ordered them.

And now here’s my trouble.  I work for the organization in question and the neurologist who saw me holds a very high and prestigious position here.  The Chief of Staff who would be responsible for the investigation, were I to raise my concerns is my asshole boss who doesn’t really like me much.  I just don’t think I’d get very far…plus, I’m sure they’d find a reason to let me go.  I dont’ think you can successfully sue your employer and retain your job.

So really, I’m just sitting on this info.  Letting it sink in?  I guess.  I’m going to have a look at the images tonight and pair them up with the notes I have…let it come together on its own.  I don’t want to tell anyone but I need to seek out some advice.  I might try the risk management folks…we have a good relationship and I think they’d respect my privacy request.

The pain i’m in is clearly explained by the herniations, degeneration throughout my spine and root nerve damage.  I would not have seen so many specialists nor would I have had so many diagnostic tests done had I known in 2008 when the fucking MRI was done.  I’ve gone through all of this stress and worry…and the damn answers were RIGHT THERE in my chart.  It’s stressful beyond stressful.

So yeah.  I’m going to let this evolve through the week and over the weekend and will decide what to do next week.  The pain is up (yay stress) and I’m not feeling well thanks to my malfunctioning liver although the stomach meds are a godsend.  I can eat again without throwing up as long as I balance solids and liquids well.  … I’m just wavering in and out here…I’m dissociating for short blips every time I start to get overwhelmed, then I come back to numb, then anger, then numb.  I have no one to talk to about this because I cannot trust my colleagues and D is just so stressed…he really can’t take anymore until he settles his work routine.

Again, I’m stuck between a rock and a hard place.  Apparently the universe hasn’t had its fill of messing with me yet.
As for my boy…he seems to be getting more and more distant as the stimming behaviours increase.  When I called his name last night he’d look at me with zero focus in his eyes.  He wouldn’t answer questions and whenever I talked he made his little noises over my voice.  He seemed taxed and withdrawn.  It’s killing me to watch him slip.  Many kids at his functioning level on the Spectrum seem to halt in development just shy of puberty and I’ve been praying that he didn’t stop…didn’t start to settle.  He was learning and growing so well…connecting with others, engaging.  Ever since school started again he’s regressed back to Thomas the Tank Engine and sits in silence making noises now, rather than playing with toys or singing his stories.  It’s killing me…this.  I don’t think I can take it…losing him now.  *tears*

Such a shitty week.  It’s only Tuesday yet.  Such a shitty month/year then.  I’m planning on a turnaround for 2014.  If there’s a way I can make it happen…I will.


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About Grainne

My name is Grainne. This blog has been with me for years now and has served as a journal, a confessional, an outlet and a place for me to create and express my love of life. Thank you for stopping by and for becoming a part of this life long journey of mine. I appreciate every single one of you who takes the time to do so. :)

10 responses to “New info – big decisions”

  1. Mental Mama says :

    I don’t know a whole hell of a lot about medical stuff – not that kind anyway – but if you just need someone to bounce ideas off of you’re always welcome to get in touch. I know that sometimes just having a neutral party to talk to helps us get our ideas straight. And you know I don’t judge.

    The whole deal about not feeling like you can bring the oversights to light because of your position at the hospital is just killer. I’m guessing there’s a ton of ego going on there and no one likes to be called out for neglect – particularly someone in a position like they are. I’m not sure how things work where you are, but in the US we have states that are what’s called “right to work” states. What that means is you have the right to walk away from a job with no notice at all – and your employer can fire you for no reason at all. Kind of sucks, actually. The state I live in is like that. There are some employers who opt to be nicer to their people, but by law that isn’t required.

    I’m really sorry to hear about Colt. I apologize for showing my ignorance here, but does he have a special doc that he sees for the Autism that can evaluate him again and see if there’s something more that can be done?

    • Grainne says :

      Thank you Mama. I would definitely turn to you as a sounding board. You and I work in similar environments and I know you get the political aspect of things. As I get my thoughts together I’ll shoot you an email…maybe you’ll see things that I’m missing. I appreciate the offer…xo

      Colt has a psychiatrist at the Children’s Psychiatric Regional Institution (the in-patient kids there break my heart into little tiny pieces) and he seems him several times a year. We are just starting to move into a time where we should be able to leave Colt and the doc together in the room to see if they can chat about things without our help or interference. Up until now, Colt wasn’t communicative enough for that style of therapy to be very useful.

      I’ve already called and made an appointment with them for after Christmas. Hopefully there will be some testing or some way to measure his regression (if it is a true regression). I’m not sure the stimming will settle through therapy but it’s not the worst way to cope with stress. I love that kid so much. I just have such a hard time when he struggles and I can do nothing to help.

      Thanks for being there. xo G.

  2. rootstoblossom says :

    I don’t how to comfort you, other than maybe my day seems so easy now. Seriously though, F the snotty doctors that don’t care about patients, F the system that allows patients to be in the dark, like privacy laws are meant for our own selves somehow, and F autism keeping your boy away from you. I’ve got a few more F’s in me today, so if you need them just let me know. Hang in there. The universe seriously likes messing with strong, intelligent people. Sometimes my greatest wish is to be a dumb ignorant A-hole like the rest of the world appears to be at times, it’d be so peaceful not to know what I know.

    • Grainne says :

      The fact that you are there, you read, you wanted to make me feel better….all of that brings much more comfort than I ever knew before. Just being here is enough xox So thank you from the bottom of my heart. ❤

      F them all…I'm with you on that. I wish I could just throw up my hands and call a do over.

      Thank you for being my friend. Much love to you … I know you're struggling too. xoxox

  3. idena says :

    Having all this information is so important … and will be extremely helpful as you go forward. Looking back isn’t going to help, unfortunately, so I’m thinking an investigation might not be the best thing to do, because it would only add more stress to you. I’m so sorry you’ve got all this crap to deal with.

    Thinking of you and your son.

    • Grainne says :

      Hmm good point about the stress…really, going back won’t help much will it? I think I’d like to know if knowing all of this then would have changed the course of things for me just for the vindication alone…I’ve spent a lot of years trying to combat several opinions that I was not really suffering like I said I was. Then again…bringing more stress into things will only leave me more stressed out!

      Thanks for thinking of my sweet guy. He’s such a good person…good soul. He just needs some time to settle, I hope. I’m afraid he’ll slip away and I’ll lose the connection we share. It seems so terrible for him to have then lose that….but then, he likely won’t suffer for it. As long as he’s happy….it’s all I really want for him anyway.

      Thanks so much for the encouragement. xx

  4. KittyHere says :

    Oh how I wish you were near. I know a couple docs that I think could be of help…if only…

    • Grainne says :

      Really Kitty? Connect me with by email if you have a sec …I’m quite willing to cross boarders and pay upfront for a second opinion even just based on the paperwork I have now. I’ve got all my films..MR head and entire spine…

      Thanks for thinking of me. You’ve been on my mind too. ❤

  5. Cat says :

    I have similar spinal issues, much of that was like reading my own reports. I suffer a lot of pain in my legs, arms and hands. I used to visit docs for months, all shrugging their shoulders, none of them thinking to do an MRI scan. I lost count of the number of times my GP said, “it’s your depression”. I hope it works out for you

    • Grainne says :

      Thanks for this. I heard that many times as well…I even went to see my psychiatrist and asked for an assessment to see if this could possibly all be in my head. *sigh* I’m sorry for your troubles too. You’re not alone, at least. *hugs*

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