So, a couple of weeks ago, I was admitted, once again, to the hospital in Chicago for migraine treatment. This was admission number 16. All since 2002. This visit was horrible from the very beginning. At about day 5, it hit me. I finally reached the spot Chris got to about 4 years ago. We keep doing the same things over & over, & I'm not getting any better. What are we missing? Why isn't something different being done? Then, I got mad.
Let's start with the tale of the hospital stay. Right from the start, the bad omens appeared. My PA had written my admission orders the day before. All I had to do was stop into the clinic for the obligatory visit & pick them up. I saw the new PA, she said everything was ready to go & signed off on it. 15 minutes later, I asked about my orders. They couldn't find them. Then I was told that it took an hour for the insurance company to get back to them with the pre-approval number. Yeah, whatever. At least I was off to the hospital, where everything should be smooth sailing. Nope.
At admissions, they couldn't get the websites for either of my insurances to work to confirm coverage. Um...don't we already have a pre-approval number? Why do we need to call again? Finally, 25 minutes later, I got to my room. Ironically, it was the same room I was in during my March admission. However, because it took me so long to get to the floor, I was too far down the list to get my PICC line ( think super IV -- starts in the upper arm & goes all the way into the heart) that day; they stopped with the patient admitted 10 minutes before me. So a regular IV was started. It lasted all of 10 hours before it infiltrated. Amazingly enough, PICC line placement the next day was fast (8:15am; took 10 minutes, most of that was prep), & I thought I was on the way to no headache & home. It was Tuesday. I could see going home Sunday. Nope.
The main medication they use up there is called DHE-45. It is a vaso-constrictor & really harsh on your body. The normal course of treatment for people is 9 doses over 3 days. I always start with 18 doses. 9 doses, 24 hours, 9 more doses. But I was scheduled for a Facet block. That's where they take me to the OR & inject things in my neck; it's coming up. The DHE started to make my headache worse, not to mention my hot flashes, so we had to cut the doses in half, & they ran them for a longer infusion time, which I don't tolerate well. There were a couple of times I made use of all 3 anti-nausea drugs at my disposal instead of my usual 2. In between doses of DHE, I would get IV Benadryl. I hate the fuzzy-headed feeling I get with IV Benadryl.
On Wednesday, I was scheduled for my facet block consult. Now, I will admit, I LOVE my physiatrist up there, Dr. Daniel Hurley. He's super-nice, & has a hidden, very dry sense of humor. I like to describe him as a smart-ass. We get along great. And, he looks like a combo of Jim Les & Anderson Cooper (Google him, you'll see what I mean). Things like that always help. ;-) I found out that I was his only patient on the floor at that time. Which, to my benefit, meant that we had more chat time; although, I can honestly say I've never felt rushed by him. I think he was there for half an hour. At 7pm. He decided (kind-of) what he was going to do -- he's a game-day decision maker with me, & I was made NPO (nothing to eat or drink) after midnight.
Thursday was facet day. Bright & early, they brought me the oh-so-fashionable hospital gown to put on, & I asked if I could take a shower now since I wouldn't be allowed to after the blocks. I was told no because they didn't know when the OR would call for me. This was at 8:30am. I went down to the OR at 12:05. They OR may have gotten me a little early, because I'm usually take down about the time Dr. H finishes the case before me. Nope; I had a good 45 minutes to look at the nurses' station. Then doc & the anesthesia guy came to talk to me to make sure we were all on the same page. I was almost right on the anesthesia drugs they were going to use -- I got 2 out of 3. Dr. H decided that he would do the blocks at C2-C3 (upper neck) & he would be injecting lidocaine & dexamethazone (a steroid). Then he's put Botox down around my shoulders. Sounded routine. This part was, except they gave me extra pain meds in recovery. Good thing I didn't have to move on my own! It was 3:30 before I was back into my room. Still no shower, it had to wait until the next day, but food did arrive at my door 5 minutes after me.
Then the pharmacy started it's campaign against me. I take estrogen because of a hysterectomy. This hospital doesn't stock my brand, but that's okay because I do fine with the name brand they do stock. Except they ran out. I didn't get the correct dose for 4 days. And did I mention that DHE gives me hot flashes? And that the AC in my room didn't work (my room was stuck at about 80), & maintenance never came to look at it?
Monday, we made a med change. We changed muscle relaxers that I take. I didn't learn until it was time to take it that they don't stock that particular med, either. Then the pharmacist on duty got mad because I made my nurse call to double check for interactions with the meds I already take after he (my RN) got the new drug orders. I had reached my breaking point.
The rest of the stay passed much the same way, except for when food services suddenly decided to start changing what I ordered, & give me random things. The true highlight, really, was getting to catch up with my friend Lindsey, who is now living in Chi-Town.
So, finally 10 days later, I got to come home. The house doctor came up to remove my PICC line. Looking at all the scars on my arm, he asked me how many I've had. 12 or 13, I answered. Why? Because he told me, repeated PICC lines can cause the vena cava to narrow, causing stenosis, which will lead to swelling in your neck & head. Why hasn't anyone else told me this? And it stormed hard the entire drive back to Dunlap. Chris & I decided that it was time to do something; we just didn't know what that would be.
Now for the promising parts. The first change I made was to my diet. For the next 30 days (at least), I have cut out all kinds of things, just to see if it helps.
Yesterday, I met a new chiropractor. And I have stumped him. Dr. Jay told me that he has never met anyone who has suffered for as long as I have without finding some kind of relief. The best part about the visit, & what told me that this would be a good dr/pt relationship was when he said that he honestly didn't know what to suggest to do, & suggested the plan we are going to follow. It is this: he gave me his cell # & told me that when I need to see him, call the cell & tell him what I need. He will make sure it's done that very same day.
Then, I learned that my favorite physical therapist is back to work after a really rough second round of chemo, & even though she's not really supposed to treat patients, she would be available for me. Makes me love her more.
Today, I went to see a dentist about possible TMD (used to be called TMJ). I can't believe that in 11 years of trying to solve the migraine problem, no one has ever suggested to me that we look into this. Dr. Wiley at Maple Shade Dental has moved into focusing solely on TMD & sleep apnea. Never, anymore, am I surprised by a doctor. This man amazed me. Before he ever laid a hand on me. He described the exact pain I have & the way my shoulders always "scrunch" up to try to relieve the tight muscles in my neck. Still before an exam -- all just from the forms I had filled out -- he told me that he has no doubt that I have TMD, & probably have had for quite a while. And, while he wouldn't bet the farm, he's 90% certain that we will discover sleep apnea. He thinks that once we start treatment, I will notice improvements within a month, & within 6 months, be backing off of the meds. I wanted to cry. In relief. Somebody actually has a solid reason for why I'm not getting any better. And he thinks he can fix the problem.
Of course, my husband is still sceptical, but I feel hope for the first time in 9 years.
Tomorrow, I start trying to rush the insurance pre-approval I need. Everyone cross your fingers...
