Today was MRI day. Because I got a copy of the script I was able to come home and google why I had to have another MRI. When I was meeting with Dr. Neuro B and I asked him, he told me that their machine is super duper powerful (not a direct quote) which I didn’t understand because the MRI I had in February was on a 3 Tesla and the MRI he ordered would also be on a 3 Tesla.
What I learned today is that what is different is the test itself. This was an “Epilepsy Protocol” MRI which shoots different/additional angles and also has a tighter tolerance for gaps in the slices. So all that makes sense. I wish Dr. Neuro B had explained that to me at the time because I’ve been wondering. BUT he doesn’t know me so he doesn’t know what I need from him. I’ll bring this up when we talk next and see if he and I can get a good communication pipeline.
As for the quality. Houston has a gazillion hospitals. Most of them are part of a chain. Memorial Hermann Healthcare System is a big local chain. It has consolidated and eaten hospitals all across the region. At its heart is Hermann Hospital. They’re the folks who saved me and my legs and hand and everything else after the accident. They’re top of the line. If you work for MHHS and you work at Hermann? You’re the cream of the crop. This was proven again today.
From the (ok maybe a little too PERKY that early in the morning) admissions guy to the patient MRI guy who, when I went from fine and laying on the MRI table to crying and scared, was kind. And the nurse? The one who came in to help me go into that machine? Wow.
First she asked if I wanted drugs and I said yes and told her I had already taken a Xanex to help me not freak out but that it obviously wasn’t helping a lot.
She said ok, and then she talked to me. She quietly and calmly talked me into that machine. We talked about why I was scared, and I told her that I’m pretty sure that being stuffed inside a big metal machine that makes loud crashing and banging sound which I can’t get myself out of has sort of being a touchy thing for me the last couple of years and I told her why.
She was patient and understanding. She talked about how I was NOT in that Miata, that I was safe. We talked about how I knew I was safe especially at Hermann because of my past experience with the great people there. When she asked me where my “happy place” was we all had to laugh because I said “In my new Miata, driving!”
We settled on a safe rather than happy place and talked a lot about being curled up in bed with my husband and my dog. She got me into that machine and she was so good that by the time I was ready I had forgotten all about wanting drugs. That’s quality you can see and feel.
I got home from work Friday and pulled into the garage. I killed the engine, but stayed sitting in the car, listening to the end of a story on NPR. After the story, I took out my keys and sat for another moment. I was very relaxed, and glad for the weekend.
I was thinking about the accident, as I often do when I’m driving. Not obsessing on it, but it’s always a little stream of thought in the back of my head on some level. Especially at intersections. Ha.
So sitting there in my Miata, I thought about my many broken bones. I found myself pressing my legs out, toward the edges of the foot-well. Where they touched the car, on each side, is exactly where they were hurt in the wreck. I leaned a little to the left and felt how my shoulder had been broken and torn. I looked down at my hand resting on the middle console, my fingers lightly curved around the shifter boot. Where it normally rests when I’m driving. I imagined how the impact of the stick shift had snapped my wrist and crushed my hand so it folded in on itself, like a book. I felt the door against my side and could see how my hip broke there. Then I leaned a little more to the left, and felt the exact place where my head hit the frame of the rag-top
There is this hinge up there. It has two attachment points. The rear one is perfectly situated to slap into your skull on your left temple if you get hit so hard your car is shoved across four lanes of traffic while executing a 135 degree spin, all with a pickup truck turned over on top of it.
So I guess the moral of this story is that it’s true what they’ve said all along. It’s not the heat, it’s the humidity. The accident was on a humid day, and that’s why I had the lid closed. If it had just been hot, I would have dropped it and tried out my brand new sunglasses. It was overcast, so I would have dropped it. So it’s the humidity that truly screwed me up. Without the brain injury, I’d be fine today, two years later.
Or…with nothing for my head to impact, maybe my head would have snapped back from the impact so violently it would have broken my neck. Or…if I had dropped the lid, maybe I would have heard the truck coming and been able to get out of the way. Or…if I had dropped the lid I would have without question had a wider field of vision, been able to see him out of the corner of my eye, and gotten out of the way.
I HATE multiple choice questions.
I just looked over the last week or so on the Toteboard and I told myself not to get excited, but I did allow myself a little bit of a smile. It’s not a bad trend, if it is a trend.
The dosage for Lamictal is still veryveryvery low, but last time it kicked in quickly with a small but noticable lessening of burping, and gradually increased to a few days of none at all. I haven’t noticed any increase in cognitive problems yet, though I did forget that I made both lunch and evening plans with a friend tomorrow. BUT I hadn’t written them in my calendar so I can’t be help responsible. HA!
We’ll see.
I have noticed a little appetite change and that’s good. Now let’s see if that other side effect comes back, too. I swear if I get the Triple Crown I’ll buy this stuff from Mexico if I have to in order to stay on it.
Big weekend in the country news: a month from now I’ll be joining about 12 good friends at a hunting lodge over in East Texas. We did it last year, and it was super. I’m looking forward to it!
Two years ago, at this same time of day, I was sitting in my first Miata, blocking traffic. There was a pick-up truck turned upside down and laying on top of me. Firemen were cutting me out of my dear car with loud, heavy power tools and a helicopter was waiting to fly me to what I thank God is one of the best trauma departments in the country. Or so they tell me. My memory stops well before that moment and doesn’t start again until much later.
TWO YEARS? And it’s still this living, breathing thing in my life. Until about five months ago, really we thought it was going to be over with. We thought: one more surgery and we can look at long term good.
If the last surgery went well, we were going to look at camping again. And the wildest maybe? M-a-y-b-e I could sail again. Maybe we could buy another boat. Because this will all be behind us. The doctors, the drugs, the pain and stress, the lawyers would be gone, no more wasted vacation days in hospitals and MRI machines.
And then that all changed. Then it wasn’t about my bones anymore. Suddenly, shockingly, stunningly, it became about my brain. Just when I though it was going to become about life again, not more of the same burt actually worse because it will now NEVER I said n-e-v-er be over.
Two years. I was thinking two years wasn’t a bad trade off for what they cut me out of that day. For what they flew to the hospital, for what they did to save me. Two years? I could do two years. But forever? How am I supposed to deal with that? Forever??
Filed under: Dr. PCP
Because that’s the ground I took. Yeah, of course she was there. My sister has been there once and my husband twice since I was last there but she wasn’t there for any of those. For me? She was there.
Did the weigh in, didn’t talk to her, could do it without being outright rude. In the exam room. Did the blood pressure, temp thing. Didn’t need to talk. Then she picks up the chart, “So you’re here for a sore throat?”
I don’t respond, I just look at her. This is where it all went bad the last time. She gives me a “well?” shrug? I say: “I’d just like to speak with Dr. PCP.”
She says ok, racks the chart, and leaves. Not bad but it would have been nice for her to not have been there. Yeah I’m being unreasonable, I know. But I don’t have to like her.
Filed under: Dr. PCP
No there is no change. No I didn’t expect one this early. I’m ok with all that.
I am pretty freaked out about 815am tomorrow morning. I have to go see Dr. PCP because The Husband and The Boss both think a mild sore throat for 2.5 weeks warrants a doctors visit.
Freaked out because the last time I was there was a major meltdown, a real break from civilized, and I don’t know how to deal with his nurse. I am hoping that they will have the sense to have a different nurse deal with me. One that I haven’t cussed out in the parking garage, one that isn’t so bereft of the concept of patient care, instead of cattle moving.
But if she is the one, I have to decide how to deal with her. I have two choices. I can completely ignore any words she says, like she is a gnat in the room, until she leaves and tells Dr. PCP “YOU deal with her.” Or I can make my only utterance to her “I prefer to speak directly with my physician.” Which is much more rational, mature, and classy. I hope I take the high ground.
And a little freaked out because I have to see him for something stupid like a sore throat.
I was just updating my Toteboard over there on the left. Today was an 80% day. As a short desciptor I wrote “not a horrible day”.
My first thought was “it’s been worse before” but then I went back and read descriptors from 80% days a few weeks ago. I felt a lot worse before than I do today.
Now, that could be from a lot of things. What’s different between now and then?
First, I’m about five weeks away from Keppra. From abject terror, from losing my ability to think or reason or remember or function. That can only be good, right?
Next, I’m about five days into Lamictal. Again. I know that it takes weeks to get to a dosage that will hopefully have some kind of positive effect on my seizures, but. While I’m a techno-ludite, chemically I am an early adaptor. I get sick fast and I heal fast. I react quickly to medications. Since Lamictal has a slight seratonin action, I could just be experiencing a little bit of emotional Better Living Through Chemicals. That’s OK. I could use it.
Finally, it’s true that humans can get used to anything. We adjust to physical, mental, and emotional discomforts and deprivations pretty well considering what incredibly fragile creatures we are biologically. Sure, stress will kill us all and HEY I have a little recent experience with overwhelming stress. But I wonder if I’m just adjusting and that’s pretty sad and scary. THIS has become my “normal”???
I’m going to supper with a girlfriend tomorrow night, a close friend who knows why I burp like a drunk. We’re trying to decide where to go and I’m trying to think – what it big and won’t be crowded so we can sit away from other people?
Really, really, really, please. Don’t let this be my normal.
Mine is in there – in the bedroom. I tried to sleep for an hour but the burping wouldn’t stop. It has never not stopped after a while so I could sleep. It’s not real heavy, it just won’t stop. I gave up about an hour ago and came in here to the living room.
Have to get t work early tomorrow – big meeting. I’m going to be dead meat.
I wish I could remember how long it took the the Lamictal to start working the last time I took it. I think it was only a couple of weeks before improvement started. But that could be wishful thinking.
Sleep? Yooo hoooo…..
Filed under: Dr. Neuro A, Dr. Neuro B, Husband, Neuro, RX, Seizure, Texas Comprehensive Epilepsy Program
Hello Lamictal, my old friend,
I’ve come to swallow you again,
Because a pressure softly creeping,
Left its burps while I was sleeping,
And the damage that was planted in my brain
Still remains
And makes the sound of burping.
Hope. That’s what I left the TxCompEpiProg with yesterday. Oh, and a really complicated prescription for ramping up on Lamictal again. And a secret satisfaction that my NEW neurologist, Dr. Neuro B, thinks that my OLD neurologist, Dr. Neuro A, done did me wrong. Because that’s what I thought, too. And it’s nice to be considered right by an expert.
It went sort of like this:
From the smiling, organized, competent clerk at the front desk to the happy, smiling, competent nurse, to the friendly, kind, competent resident, to the smarter than is probably legal, experienced, competent doctor, I felt like I was in the hands of people who not only COULD help me, but seriously wanted to.
I went there expecting to be put off AGAIN, to be a zebra AGAIN, to be sent off with more orders for more tests and no real hope. I left there with a definitive diagnosis, not a differential, a prescription for a drug that helped me tremendously in the past, a request for a new MRI, an offer of continuing care, and a some confidence that maybe maybe maybe I can and will get better, and certainly can and will stop getting worse.
First, the diagnosis. Dr. Neuro B, after reviewing all my prior test results, my seizure toteboard, my meds lists, and symptoms, was saying things like “Usually, with epilepsy, blah blah” and “Epilepsy often blah blah”. I interrupt and say, “Are you telling me I have epilepsy?” His reply was “Yes, you definately have epilepsy. No question. Your EEG is textbook.” (Remember, Dr. Neuro A’s response to this EXACT question was, “No, I’m not telling you that. I’m telling you I don’t know what you have.”) I shook Dr. Neuro B’s hand and thanked him. Finally.
Next, the prescription. Dr. Neuro B reviewed my meds list and said, “So if the Lamictal helped you so much, when it quit working, why did you get taken off of it? Why didn’t you dose get increased?” My answer was, “I asked that, too, and was told that when an AED quits working that you just have to stop it, that it will never work for you again.” His response was a look that said “What the fuck???” and he said “Your dose should have been doubled when it stopped working. You should not have been taken off Lamictal.” I told him that I agreed, and that I wanted to go back on Lamictal if only for the great side effects (spontaneous weight loss and randy like a teenager). He laughed, commiserated with my husband about the things husbands have to do for their wives, and confirmed that yes he intention is to take me up to double the dose I was on when I stopped. I almost kissed the man.
Next, the MRI. I imagine one of the reasons doctors become niche specialists is because of the cool toys they get. I had my MRI films with me and he reviewed them but ordered another brain MRI. He apparently has the biggest, baddest magnet in the south at his disposal and is very proud of that. He said he wants a better resolution and contrast. I don’t mind this at all, and am happy to cooperate willingly with a doctor who is willing to not disregard what I tell him about my experiences, to give me a lot of information without me having to drag it out of him, and to have the guts to tell me when he thinks something has been done wrong. Five big stars for Dr. Neuro B. Minus 6 for Dr. Neuro A.
He also volunteered that while my particular symptomolgy is “rare”, that it isn’t unheard of, that there are reported cases, and that he’s had experience with intractable belching as a manifestation of seizures. Remember, Dr. Neuro A at first said that mine was the first ever recorded case and later said that yes there had been ONE case reported, and that that patient had been put in a mental hospital for 20 years.
When I asked Dr. Neuro B about the video EEG, which is what Dr. Neuro A had originally wanted me to go to the TxCompEpiProg for, he said there is no need for that sort of thing. He said my regular EEG clearly showed all that was needed to make a definitive diagnosis, and that we would only consider a video EEG is the meds didn’t work and we had to consider surgery as an option. He said that was “way down the road”.
So – this is the point where my life has come to. The best day I’ve had in months was the day I got diagnosed as an Epileptic.
And I would be remiss if I didn’t express my deep appreciation and love for my husband and his support. He is totally committed to seeing me through this entire ordeal. He took the day off from work yesterday to go to this appointment with me. He calmed me when I was so nervous in the car on the way over that I almost puked. He held my hand through it all, made sure all the right questions got asked, reinforced my impressions and opinions about how everything was handled, and has just flat out loved me like crazy for 15 years. Thank you, dear husband. Thank you.
Lamictal???? WORK YOUR MAGIC!!
Filed under: Texas Comprehensive Epilepsy Program
Yes, I’m feeling very show-tuney today. My next selection will be from Mutiny on The Bounty.
This is what it felt like to wait for Christmas when I was a kid. You started thinking about it on Halloween, then by Thanksgiving you were snooping in the attic and the Forbidden Top Shelf of Mother’s Closet for the white pleather knee high go-go boots that you were gonna DIE if they didn’t get you for Christmas.*
MRI films? Check.
Referral form? Check.
EEG report? Check.
Meds list? Check.
Printout of Seizure Toteboard? Check.
Irrational hope that Something Good Will Happen at TxCompEpiProg? Check.
*I did indeed snoop out the go-go boots. Then I got caught. And they held them for punishment until February. That’s a looooong time to go without go-go boots when you KNOW they’re there, being held hostage.
