Health Update

Surprise: I Had Surgery!

So, I’m going to start off by telling you there are some icky pictures on this page of incisions and bruising around my eyes. You’ve been warned!

Now you’re like hold on a second… incisions around your eyes!? What did I miss? I have been keeping a secret. I am not sure why other than I didn’t want everyone worrying about my little surgery. I also had a superstitious feeling about telling the masses somehow leading to a different outcome (I know, crazy). You may remember how I kept referring to trying to stay in a flare for some testing (this was starting back in March)? The testing included a Gallium Scan which showed lacrimal gland inflammation. My eyes had been hurting quite a bit for awhile, but the local ophthalmologist back in January had said they were fine and I was probably mistaking a headache as eye pressure and pain. I asked how come it hurts to touch my eyes through the lid if it is a headache (headache, not ocular migraine) and he said headaches do strange things. Yeah, I know. Anyways, I decided since I was not about to go blind, I wouldn’t worry and just added it to my list of daily symptoms unexplained by POTS and EDS. I never do that, but this time I did. A month or two later, I had a Gallium Scan ordered by an Infectious Disease doctor in hopes of identifying the source of my low-grade fevers and the lacrimal gland showed up. One thing lead to another and I ended up at The University of Illinois at Chicago Eye and Ear Infirmary (I am told one of the top five eye centers in the country) getting a biopsy this past Wednesday.

click on picture for image credit
click on picture for image credit

Our hopes are that whatever has gotten into my lacrimal glands is the same autoimmune type issue that is causing my fevers, lymph node swelling, and abnormal amount of fatigue even for my known conditions. There is no guarantee they biopsied the exact area of the gland experiencing issues or I will get any sort of answer, but we can hope! When you hear biopsy, you may think of a needle aspiration or a tiny little slit. The unfortunate part about my lacrimal gland biopsy is it required them slitting my entire eyelid open, but oh well! (Note to self: Moms like to know the length of the entire eyelid is being cut open before rather than after the procedure.) If this is what it takes to get some answers, it really is nothing compared to what I’ve been through. Biopsy results will take about a week to get back. The person who did the surgery is called an Oculoplastic Surgeon (Dr A) and all he does all day is surgery on/around the eyes which was comforting. The incision pretty much runs along the crease of each eye, so I’m hopeful the scar will not be too noticeable and EDS will not prevent it from healing nicely.

My parents took great care of me while Jake worked the day of and part of the day after surgery, then they passed the baton to him. As always, he has been wonderful. I have been scolded for doing any sort of bending or lifting. He has taken the couch because when he rolled around while sleeping, it was causing me to roll onto my eye. Ouch for my eye and ouch for his back!

That’s all for now because my vision is pretty blurry, I’m quite tired, I have to hold my head weird to look at the screen, and my eyes hurt inside and outside, so the computer is not my friend right now. I am being kept quite comfortable and this is not even 1% as bad as getting my tonsils out was. I can sleep in few hour stretches. I’ve got good oral pain killers, oral steroids, oral antibiotics, topical antibiotics for the incision, and antibiotics to put into my eye.

The lead up -- Gallium Scan, MRI, Multiple Exams (neuro-opthalmologist, oculoplastics dr), and an anesthesiologist consult
The lead up — Gallium Scan, 1 hour and 45 minute MRI, Multiple Exams (neuro-opthalmologist, oculoplastics surgeon), and an anesthesiologist consult

 

Last chance to turn around.

 

iPhone May 17 2014

 

Emma said my eyes are purple like Elsa's, except hers comes off and mine doesn't.
Emma said my eyes are purple like Elsa’s, except hers comes off and mine doesn’t. 🙂

Update: I didn’t post this after writing it Saturday. I decided to wait until today when I had at least partial biopsy results to share. The next post can be found here and is about the results.

 

26 thoughts on “Surprise: I Had Surgery!

  1. Well, it looks pretty brutal. I had to chuckle when you mentioned being superstitious and telling the masses could change the outcome. I am very superstitious that way, too! But it seems like the actual surgery went okay? Lacrimal duct inflammation can’t be too common–is it? Any differential?

    Speedy recovery wished to your eyes.

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    1. Just to clarify, it is the actual gland that is inflamed and the ducts are normal. It isn’t common and there aren’t many possible causes, but of the possible causes known, my biopsy shows none of them. I’ve had the blood testing and x-rays that can indicate autoimmune issues like Sjogrens and Sarcoidosis (two suspects for lacrimal gland), but they were negative. My body just cannot be easy can it?

      I’m thankful at least it showed a reason for my pain (if not “the” reason) and that I’m not “hyper-sensitive” to normal sensations. It also proves I am definitely not confusing headaches for eye pain as the local ophthalmologist suggested.

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      1. Yeah, I cringed when I read that about what the ophthalmologist said. If all else fails to come together–maybe it’s the patient’s perception. 🙂 Thanks for the clarification on it being the gland. Just so strange that something so specific you don’t have what’s in the differential. No, definitely not easy.

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  2. You are one amazing girl Jackie! Please text me if you need ANYTHING! I would run out and grab you something in a jiffy! Feel better fast xoxo

    I am sorry you did not get definitive answers, but I know you and all the research you do will bring answers, even if it’s not today, tomorrow or the next; you will get them and you will find a way to feel better.

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  3. Ouch!! You have such a positive attitude and do blessed to have such a loving family. I have a question if you or anyone who comments here has received disability for the POTS condition? Mayo clinic diagnosed me with orthostatic intolerance in Dec. 2013 although I have or had all the postural cardiac events that make me convinced its POTs more specifically. Since then I lost my job due to this condition. After following the Mayo treatment plan I improved greatly most impart to the constant fluid and salt intake and its hard to see I have anything wrong. The issue is I’m still very ill and work around the clock to manage and keep myself from having a major event or back track. I have no income and still have two daughters depending on me soley. I need to get disability but now that I look ok because of improvements after the Mayo protocol ..a cardiologist said I’m not disabled, but after the onset of OI I’m left in a state of constant exhaustion..constant pain in legs..feeling of weakness, feeling off balance…memory issues and many other challengres to keep up with the protocal and avoid all the triggers. Having said that what job would ever accommodate these things not to mention I have to sleep sometimes twice the middles of the day just to keep going…and no I’m not depressed its just after all this started it has racked my system. Well any thoughts or advice would be helpful from anyone who has tried to get or received disability. Thank you and God bless!

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    1. I’m not well enough right now for a long response, but I wanted to let you know POTS can qualify as a disabling condition in some circumstances. I know what you mean about how hard you work just to stay balanced and how anything extra would throw you off track. You do need to find a doctor who agrees you are disabled (and your and his diagnoses need to agree with one another) in order to get disability for a condition like POTS. If you go to the forums on http://www.dinet.org, you should be able to search and find some threads about people who have successfully done so! 🙂

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    2. Also, start gathering ALL of your medical records and request not only lab results, but also doctor notes. Any time you went to the ER for symptoms, any time you went to the doctor (the records of my pulse and BP have been helpful), any time you missed work (if you did) because of your condition, any testing you’ve had done… all of that can help support your case.

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  4. I hope you feel better soon (and get some definitive answers). Keep up the positive attitude, it’s worth a world of good. I loved the bit about the purple in Elsa’s eyes! Sending positive thoughts your way 🙂

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    1. Thank you Christine! I’m doing much better this evening both mentally and physically. I had a productive appointment today although the doctor was a bit shocked to see my eyes and have me say, “I took your advice to reignite my search for the cause of my fevers VERY seriously.” LOL 😛

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  5. HOLY CRAP! I can’t ever seem to find your blog – it’s not connected to your gravatar profile. But I found something I had linked to you in a draft folder and HERE YOU ARE! 🙂 I can’t believe you had surgery. I don’t know how long ago this was but I hope you’re recovering well and I LOVE the Elsa connection!

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    1. I will have to link it up with my gravatar profile, thanks for letting me know. It was just 9 days ago, so you aren’t late to the party at all! The incision seems to be healing well, the rest of my body is kind of struggling.

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  6. I agree with E–you totally look like Elsa! At first my oxygen-less POTSy brain thought “why is she wearing cute purple eye shadow after lacrimal gland surgery?” And then I snapped back to reality 🙂 I’m glad to see you’re progressing and healing well, though! I really hope this is a step towards finding a diagnosis for your mystery illness so you can get some treatment finally. Fingers crossed on my end!

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  7. I am going through the same ordeal. Only my left gland is swelling in my eye area. My doctors call this a mystery. The swelling is kept down by taking prednisone tablets. Tomorrow i am going in for a biopsy. I’ve had an MRI, x-rays, over 30 labs. This is very frustrating.

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