Health Update

Lacrimal Gland Surgery: Follow-Up #1

I’m looking less beat up. Here is me today:

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For the first post about this surgery, go here.

The doctor who performed the surgery (Dr. A) is not only an Oculoplastic Surgeon, his research interest is the lacrimal gland. He has always listened to me carefully (as have all other doctors at UIC) and I trust him. Today I was given biopsy results. The results show bilateral inflammation (expected based on Gallium Scan) and scarring. Lacrimal gland inflammation is relatively rare in the general population. There is one more result on the way (not sure what for) but thus far, the biopsy didn’t show a specific disease, so we don’t know why it is so inflamed and, most likely, will not know from this biopsy. It could mean in the future, if they were to biopsy again they’d find something and this is early stages of some disease. It could mean in the future I will develop additional symptoms, pointing to some disease, and we will think “Ah-ha! That’s what the inflammation and scarring was all about.” It could mean at the moment, whatever is causing the inflammation wasn’t present since the biopsy is just a snapshot in time. Glands don’t just inflame for no reason. We know that much.

Nothing comes to his mind in terms of my throat/armpit lymph nodes and lacrimal gland inflammation, but he also said it isn’t impossible they are related. Without a reason for the inflammation, we can’t do much, so I guess my eyes shall just hurt from the inflammation and I will use eye drops to assist with my slight dry eye. That’s being pessimistic. I am sure when I see the Neuro-Ophthalmologist (Dr M) at UIC again in June, we will come up with more of a game plan. I am sure if I requested it I could get some ongoing steroids, but that comes with its own set of problems. It is not a decision I would make lightly or just to avoid pain.

What I wanted most from this biopsy was an answer for my unexplained symptoms. When I went in today, I expected one of two things to happen. One, the doctor would have the name of a disease for me and he would know all sorts of things about it as it pertains to the lacrimal gland, but not much about its systemic effects. I would then need to find my own specialist for and figure out how the disease fits together with POTS, EDS, and my unexplained symptoms. That is just how it goes when you have rare systemic diseases. I’m used to it, and it isn’t ideal, but it is fine and thankfully, I am a good researcher. The other possibility in my mind was the doctor would say the biopsy showed nothing. I didn’t consider the third possibility which is the biopsy shows inflammation, but there is no explanation at this time. So, I guess my point is, I didn’t go in there expecting to walk out with my puzzle solved and a clear solution of how everything fits together. So, I’m not as disappointed as you may expect. I’m mostly feeling really grumpy.

The stitches will stay in for 1-2 more weeks. They are being left in longer than they would be on a “normal” person because I have Ehlers Danlos Syndrome which can cause poor wound healing and widening of incisions/scars even when they initially look okay. This is definitely true of me. I constantly have cuts pop open after they appear to be healed. The drooping is expected at this point and it is quite normal for the eyes to have different amounts of swelling. It should go back to normal. At this point it looks how he’d expect it to, but as he must say, there’s always a very small chance it won’t. He also warned me to always wear sunglasses outside (prevent bad scarring) and not to be surprised if I develop bruising underneath my eyes in the next few days.

I had questions about areas on my Gallium Scan other than my eye. I knew it was not Dr. A’s area, but I thought I’d give asking him a shot. My Infectious Disease Doctor (who ordered the Gallium Scan) flat out said she couldn’t help me and my case is too complicated. This doctor suggested I consider seeing a nuclear medicine doctor since I have questions about abnormalities and the doctor who ordered the test is unable to help me. He’d help me, but his area of expertise is the eye, so anything he said would be guessing. Before I go to a nuclear medicine doctor, maybe I will see i I can talk to the radiologist who read the scan, explaining how the doctor who ordered it has no idea how to use it (credit for this idea goes to Mom).

Everyone has been asking how my eyes feel and if they hurt. Mostly I say, “I’m fine,” or “It’s not too bad.” Unless someone asks a specific question, those are my two built in responses I give on how my health is. Those responses are much more honest than what I used to say which was, “I’m doing good!” which was a lie. So, I suppose I should address how I actually am feeling! It hurts where the gland was biopsied, but the incisions themselves aren’t too painful most of the time. As the steroids were tapered off, I noticed more pressure in the lacrimal gland area and quite a headache. My vision is a bit blurry and it hurts to move my eyes too much. The font on my phone and Kindle is set to giant. I pretty much move my head to change where I am looking. If I bump my eyes it hurts (duh) and if I move my eyebrows or flinch it hurts (duh) or if I smile too long (problem). However, as long as I keep up with the pain meds, I am fairly comfortable, so in terms of surgeries, it is a pretty good deal.

It isn’t pain I mind. What I mind is the loss of my ability to function on the most basic levels. As you can probably guess if you know about my health (and from the tone of my post), the past week of recovery has been very rough on me. All of my POTS and autoimmune-type symptoms are exasperated and I have my surgery symptoms on top of it. At first, my throat and armpit lymph nodes were actually doing really well because I was giving a Midrol (steroid) taper pack. Now I am completely tapered off and they hurt quite a bit! I am so tired that is is almost unbelievable. I don’t have enough energy to think or care about anything. Just existing is using up the energy I have available to me, and even then, some crucial things (digestion, orthostatic tolerance, proper circulation), get put on the back burner. I knew it was severe this morning when I found myself thinking how good putting on my thigh high compression stockings was going to feel. Traveling a little over an hour and a half each way to UIC was really tiring today and I already felt pretty awful (nausea, dizziness, palpitations, blood pooling, throat pain). Tomorrow I have to travel an hour and a half again for another doctor for my other health issues. Friday is my birthday, but I doubt I will have much energy for it. Luckily, it is the one holiday a year I feel no guilt for not feeling like celebrating. Hopefully I’m not too unpleasant to be around — I’m really trying to contain all of this and not be grumpy/unappreciative toward anyone! Whining aside, this isn’t that bad. I’d definitely take this surgery over tonsil removal surgery. My doctors are doing their best and are trustworthy and I feel loved to have so many people worrying about me and willing to drive me to all of these appointments.

Whether it could be worse or not, I want to stomp my feet, scream, shout, and for it to all go away.
….or at least to time travel to last Tuesday and pluck my eyebrows.

16 thoughts on “Lacrimal Gland Surgery: Follow-Up #1

  1. Ouch. You look beat up and you even sound beat up. Sounds like all your symptoms have decided to culminate this week or so. Not much to say besides thinking of you. Wishing you some energy and less pain. And wishing there was an “ah-ha” diagnosis. Terri

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    1. Thank you. 🙂 I just got warm fuzzies; your thinking of me worked!

      Since a minor cold can cause a flare up, I was expecting some POTS/lymph node backlash, but the severity surprises me! I don’t know why I should be surprised — I did have my eyes carved open. 😛

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  2. Oh you poor baby! I know you don’t want people to feel sorry for you, and I don’t.–well maybe just a little–but I can’t help it. You look like somebody beat you up. But I am so proud of you for trying so hard to get answers. I am sure that soon someone will have answers for you. You still look beautiful to me. Wish there was something I could do to help you, but it know you are in good hands with your mom and Jake. Love you bunches.

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    1. I want a shirt that says, “My fiance didn’t beat me up” from the looks I’ve been getting. I suppose you’re allowed to feel bad for me since you’re a grandma. You are right about me being in great hands. 🙂 I love you!!

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  3. You are brave! You tirelessly search for answers and I’m sorry it’s taking its toll. I hope you get some respite soon.
    My eye problems are some of my most annoying symptoms, so I would probably do the biopsies, too, but it’s so frustrating not to have definitive answers. Please keep us posted on your other appts! XO

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    1. Thank you! I will never give up so long as there continues to be possible answers to look into. Never ever, ever. Some people say that will drive someone crazy (continually searching for answers and rarely getting any) but what would drive me crazy is accepting I am going to be like this until I get better on my own or until I die. I give myself breathers where I focus 99% on self-care and only 1% on pursuing answers, but no permanent breathers in sight for this girl.

      My eyes really hurt before and still will unfortunately. The funny thing is, when the surgeon explained the lack of a definitive diagnosis, I didn’t even think to ask what we were going to do about my eye pain. My main objective with this was to identify the infectious or autoimmune disease, not to alleviate my eye pain (although that would be nice). I had just written off eye pain as another symptom to add to my list until this is all figured out.

      Next appointment when I get these stitches out I will ask more about my options. I’m guessing moisturizing eye drops for the dry eye and possibly steroids to if I want them — it is difficult to treat something you don’t know the cause of — pretty much the story of our lives.

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  4. Happy Birthday!
    I hope that you are feeling a lot better, and you have a quick recovery. I have POTS and I love reading your blog. You are such a fighter!:) Keep going.

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      1. Hi Jackie,

        I wish you a speedy recovery.This is the first post from a patient i m seeing on lacrimal gland.

        My name is Vikrant and from New Delhi India.I have a similar case as yours and my lacrimal gland is inflamed 1.5 cm as per MRI contrast.Symptoms include eye pain going to head and heaviness on left side of eye going onto head.My MRI was performed 3 months back.Though my inflammation is not visible looking at my eyes.Though we don’t have super specialization in India for lacrimal gland but i have got to know that this is indeed a rare diagnosis world over.My treating doctor has put me on steroids (prednisolone) 60 mg.I am on tapering doses (20 mg now and symptoms are coming back i.e pain).

        I have been given clearance on any bacterial infections and autoimmune disease.Now my doctor has advised me two options either biopsy or immunosuppressives.Just want to have an update on your case and diagnosis.Please update if my doctor is on right track and if it is advisable to go on gym and exercises during this inflammation.

        I wish there were more patients like us or any forum on net where in we can share our treatment options and updates.

        Wishing you very best and speedy recovery.

        Warm Regards,
        Vikrant
        vikrant@vangof.com

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            1. Hmm… I am not sure because mine was bilateral inflammation. My best tip would be to search PubMed and read journal articles there. The search term “unilateral lacrimal gland inflammation” would probably bring up helpful results. Sorry that I am not of more help!

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              1. Thanks for response Jackie. I understand you are not doing well and on IVIG.I am sure you’l feel better soon. My best wishes are with you.

                Il do a search on PubMed and unilateral lacrimal gland inflammation. Please share your updates on lacrimal gland recovery and if any diagnosis is made post biopsy ? During this inflammation as I have a lot of weight gain during steroid course. Will exercise in any manner increase my gland inflammation ? Please share your precious advise.

                Wishing you very best and speedy recovery.

                Warm Regards,
                Vikrant
                vikrant@vangof.com

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