This post contains neurological and gynecological subject matter. Read only if this does not offend you.
*This post will be in two parts. At this time, I would like to state that these experiences are my own. This post, and any other post on this site, are for educational purposes only and are not a substitute for medical care.*
As readers of this blog know, last month I had my Mirena UID removed with the full-intent on having another one put in at the same appointment. The removal was uneventful, but problems with my dysautonomia halted the insertion of a new coil. After experiencing life with an active menstrual cycle again, I was determined to make the second attempt be a successful one.
Thankfully, today’s insertion was successful. Unfortunately, it hurt like labor, was complicated, and I’m still in pain!
The first time I had a Mirena inserted, I had absolutely no problems. It went smoothly and painlessly. It’s possible that this was due to having a cervix which vaguely remembered what labor and delivery felt like. Now, being some years from the last time I pushed a melon through a keyhole, my cervix prefers to remain nice and tightly closed.
This doesn’t translate well, though, for a Mirena insertion. The midwife was able to sound the uterus and cervix (using an medical device to determine uterine dimension prior to the placement of a UID), but when she would go to place the Mirena, the uterus would contract and she would have to abort. After three tries, she fetched a male midwife (he was EXCELLENT!) who was finally able to get it in. It still took him two more tries, though, and they had to pry my cervix open and clamp it in a way to keep it that way. If you think this sounds remotely painful, let me assure you that it was!
I am still cramping and had to resort to prescription strength pain medication within 30 minutes of the visit. They are seeing me back in office in one month just to make sure things are okay. Seeing as this was second time with a Mirena, I had envisioned things would go a lot smoother.
On my way to the office last week, I noticed an odd sharp pain when I blinked my eye. It was only in one eye and I thought something had gotten in there. When I got to work, I looked in the mirror, saw nothing, washed my eye out, and went along with my day trying to ignore it.
As the day progressed, the twinging sting progressed into a pain when I moved my eyes. I left work early, went home, and, thinking it was allergy or sinus related, took some antihistamines and went to bad with a rag on my eyes. The next morning, the pain was still there but now it encompassed my entire orbital area.
Decided to see the doctor and get antibiotics for the sinus infection I was 99% sure I had. Well, the doctor found no evidence of sinus or allergies, looked for a corneal abrasion, and, finding none, sent me straight to ophthalmology. There I was subjected to bizarre torture tests. One of which was to test my color saturation. The doctor held up a red cap and I quickly discovered the affected eye saw the cap three shades darker than it was. Now I was concerned.
We performed a Visual Field Test , in which I stared into a dimly lit dome and clicked a button whenever I saw the light shine. I didn’t think much of this test when they were testing the affected eye, but when they switched to my “good eye”, I realized the other side had been darker. And the lights had been elongated and oddly colored. The test revealed some blind spot(s)s near the left side of my vision.
We then moved on to Visual Evoked Potential (VEP) test, in which electrodes were placed on my scalp, the room lights were dimmed, and I watched a television screen as a checkerboard pattern flashed and rotated while I focused on a circle that moved in the center of the screen. Frankly, this test was enough to give me a headache, but it showed the connection between my eyes and my brain was fine.
So what was going on?
The eye doctor said he suspected the beginning stages of retrobulbar optic neuritis. Test results were faxed to my neurologist, and I was told to expect a prompt call from his office. They would know how best to proceed, but I was warned that this could be the beginning stages of multiple sclerosis. This is enough to just mess with you week, isn’t it? Since speaking with my neurologist, I was assured that we don’t know if it will in fact turn into MS, but seeing the VEP looked good, the odds are in my favor. My neurologist stressed that this can be caused by other thing, so thank you Eye Doctor for trying to ruffle my feathers.
Well, I waited for the doctor to call. It was late, I told myself, and he’s only in office on Thursdays. So when he didn’t call, I didn’t stress. Then on Friday, I phoned his office and the receptionist told me that if he was concerned, he would call me.
I didn’t hear anything, so that afternoon I phoned back and asked to just have the nurse call me. She returned my call 30 minutes before the office closed and was alarmed when I told her my concern. She immediately paged the doctor, who then called me at 5:20 p.m. (if you’ve ever had a doctor personally call you after hours, you know how I was just a bit freaked out). Apparently, the receptionist filed the paperwork in my file since I had an upcoming appointment anyway. She never alerted the nurse or the doctor, despite the seriousness!
My doctor has apologized over and over for this. And he is the best doctor I could ask for.
He instructed me to try some cold beverage or a cold shower and then told me to expect to have the visual field rerun on Monday. Also, expect an MRI of the optic nerve. When he called me back 10 minutes later, I was a surprised. He said we may try steroids, but with my other conditions, this could make things worse. And the oral doses are really high, so I would have to go into hospital. But since the vision wasn’t getting worse, as far as I could tell, he was fine waiting until Monday.
While out shopping with the family Saturday morning, I get a voice mail from my doctor… and he left his personal cell phone number. Can you imagine my concern now?!?! Yep, I didn’t even want to call him back. I was freaked out beyond belief.
I did call him back, though, and, since the cold drink approach didn’t help the pain, he wanted me to go straight to hospital for an MRI. Now, the MRI is not my friend. I’m severely claustrophobic and the noise irritates my tinnitus. But I don’t have a choice. He doesn’t want to pursue high dose IV steroids if he doesn’t need to. In this situation, the MRI is the less of the two evils.
I make it to hospital only to find out that the reaction I had to the last MRI with contrast (headache, dizziness, nausea) is an allergic reaction. They are unable to do the MRI without me completing the allergy preparation that takes a day to do. After speaking with my doctor, we decide to send me home and repeated the visual field test on Monday. It is decided that I will get an MRI, but if the visual field has worsened, I will need to be admitted and given the IV steroid. None of this sounds fun to me.
So this morning, after getting the Mirena inserted, I endured the labor-pain-like cramps and retook the visual field test. The results were no better but no worse. No IV today, but lets get an MRI. This is an MRI he would like as soon a possible. Because I am allergic to contrast and claustrophobic, this has to be done in special circumstances. And we can’t get an appointment scheduled until later in the summer. I see him on Thursday for what was supposed to be a routine follow-up. I am fearful that he will want to pursue the IV steroids and not wait on the MRI.
Personally, I would like the pain to stop. Over all, it’s not severe. But when I get hot, it increases and can become really bad. Lukewarm baths for me.
I am now left to wait and see if it the vision or pain get worse. If either happens, I have to go in and get the IV – MRI or not.