Undiagnosed: A Story of Purgatory (Part 2)

Check out Part 1!

So far in 2017, it has been an extremely painful “hurry up & wait” game, and my patience has thinned with each moment. Complications of Crohn's? Arthritis? What is the cause of all these issues to make everything else inflamed?

Between my Neurologist, my Gastroenterologist, my OB-GYN, my Rheumatologist, my Opthamologist, my Primary physician, my Endocrinologist, my Proctologist… one thing is consistent. None of them agree with one another.

Here is a wall ||||. (here is me). Here is a rock O.

In January, I had to undergo some routine tests & procedures; one of these procedures included a spinal tap. To be honest, I don’t think I experienced any pain. maybe a 1/10 & I think this is mostly because of the way science has advances. It was smooth & easy and only took about 1/2 hour – normally they are very short, but my site would not stop bleeding. After they got it to clot, I was back in my room & had to stay a few hours, per hospital instructions. When I left radiology after my spinal tap, I did have a little headache, but it was mostly because of the lights. After waiting, the headache got better and I got to go home. I had to lay flat for about 12 boring hours.

Overall, a quick and painless procedure. Until about 2 days later.

I began puking & couldn’t see a thing unless I was in the dark. I couldn’t sleep, but when I did, I woke up with a worse migraine. Around 1am, I decided I needed to be seen. I was told by the on-call Neurologist that he will put in orders to get a blood patch done. He quickly explained that it was a simple procedure from taking blood from a vein & injecting that blood into my spine where the spinal tap was done.

When I got to the ER, I was given pain meds, a lot of anti nausea meds & many bags of fluids. Then the anesthesiologist came in & explained the process to me. “Shouldn’t take more than 5-10 minutes, then you have to lay flat again.” Okay, I thought, since the spinal tap was a breeze compared to scary stories you hear!

There were 6 people in the room, including my anesthesiologist & 5 nurses. With this many people in the room, I was a little overwhelmed but they were very kind. He explained the process that he would be giving me an epidural and then injecting blood straight from a source that has not been used by another IV. Since they had a hard time getting access to my veins already, they were smart enough to ask which vein is strongest when I need it. I told them, and they inserted my IV for meds in a different location so they could save the good vein for access to take blood directly from the good vein & hand it over to the Anesthesiologist. Here was the tricky part… Every time the nurse(s) went to grab something, they would contaminate the source, contaminate the vial or contaminate a key piece of equipment that needed to be 100% sterile.

What should have been a short procedure became painful.

The Anesthesiologist went over the procedure 3-4 times before we started, to make sure everyone understood what to do. Each nurse had a task to complete & everything had to be sterile. One of the nurses kept taking off a pair of gloves and contaminating things, because she forgot/didn’t realize how to de-glove. All the while, two needles are in my back & I’m sitting over the ledge of the bed against one nurse that was responsible for keeping me as still as possible when the needles went in. It wasn’t easy, but about 45 minutes later, we were done.

If you aren’t familiar with a blood patch, it is often used in patients that develop “spinal headaches” after spinal taps. Not everyone gets them, but some people get them immediately following their tap. It’s caused when spinal fluid finds a way to leak out, causing the pressure in your spine to change drastically. They took a lot of fluid out, and that’s why you lie flat after the procedure.

A little later, the doctor came back in my room and asked how I was doing. I wasn’t great. Usually, the blood patch immediately “cures” spinal headaches, but there are very slim chances you can develop a spinal headache from getting the blood patch done. I did. They believed in addition to the spinal headache, I developed a migraine mid way through my procedures, especially the epidural, so I was in for a long few days. I spent the next week in & out of the hospital trying to get my vomiting, nausea & pain in control. The epidural caused awful pain in my hips the morning after I had the epidural and I cried every step I took. I loathe going to the emergency room, but I had no choice.

Fast forward a few weeks & enter Botox – the answer to my prayers that I had been waiting for my insurance to approve since June. I thought this was my end-all answer to finding relief. I was given a piece of paper regarding the shots at one of my many Neuro appts, but after we were done with my first set, he realized after looking through me chart… that hey! this is my first one! Ugh.

The next day, I woke up in unreal pain in my neck. Though the injections themselves were a bit painful, the unreal pain in my neck lasted for 2 weeks. It wasn’t fun.

When I went back to the doctor to find out my spinal tap results, I found very few answers.

I haven’t had my follow up MRI yet, but just before I went back to the procedure room, I had a CT scan, and from what I was told, that appeared normal! That meant no meningitis, no blood infections that they were able to see.

During my follow up, I was sweating. I had a headache at the time, so it was hard to focus. I asked him to please walk me through my scans, since they hadn’t been discussed with me in at least a month. He explained that it takes so long to see things & grow things out in the lab, I may not have any answers any time soon. But I was so relieved it wasn’t anything systemic, like meningitis or something else. When I asked him straight forward if this means that I don’t have any type of Neurologic disorder, he was quick to say, “I don’t know. These things take a lot of time; in the lab, in testing & especially letting them grow out.” Gee, that’s reassuring.

Then came more hip pain, the foggy disorientation. I’m finally in the last 1/4 of bumping my med for tremors up. The end is near.. but the pain & tremors have also increased. Also, I’ve lost bladder control 2 times in the past 2 weeks – I mean, 30 & flirty, right? More like almost 30 & I should be in a Depends commercial.

My hips have had more episodes & each one gets worse.

My neurologist has a lot to try & fit in my appointment on Monday. While most of my results (lab grown) have not finalized, I’m trying to breathe & think I’ve done pretty damn good. I have supportive people around me. And after my last fall, I gave my neighbor a key to my house if she hears something or has a bad feeling… it’s made me laugh because one day I was hanging a picture & was hammering into her side of the wall & she snuck in & I laughed so hard. I’m so thankful for her to be willing to help with things when they go wrong. I’m blessed that her background is similar to mine.

An answer..? Unknown. As known as ICD 10 Code: Purgatory.