It's been a while. In December, I made a video, thinking I would take that approach... but it was near 20 minutes. And I ended up getting really emotional. So I chickened out and I didn't post it. And I've been sitting here, keeping my thoughts to myself. But now I'm finally posting and it's going to probably be a long one...
November was Epilepsy Awareness Month. I had great intentions of posting things every day to help raise awareness. And I did post. Not every day. But I did manage to, I think, send out informative posts. I had several people actually approach me and say things about whatever I posted that day, which made me feel like I was doing something. I was spreading awareness. And I am still trying to spread awareness. Just because Epilepsy Awareness Month is over doesn't mean I am done.
There are so many people out there that have taken time to ask me questions about my seizures and about epilepsy and what to do... and that means so much to me. Thank you.
A lot of people think it's something you're born with, it's something that is hereditary... but it's not. And it's not always brought on by something you're doing, either. I was in my 30s when I had my first seizure. I wasn't out partying, I wasn't doing anything crazy, I was sitting on the floor, petting a dog... but that's not what I wanted to talk about.
I have been to the doctor so many times since my last post- it's crazy. And I have had a lot of information thrown at me.
I went for a visit to my endocrinologist. I've been seeing this guy since I was 15 and I found a lump on my thyroid. I have to see him every year to make sure things are normal. A few years ago, the biopsies started coming back "suspicious" but were never cancerous and it was just getting way too scary for comfort and I have two kids and there were like eight lumps, and it was out of control, so I made the decision to have my thyroid removed. It was the only way to get all of the lumps removed. So I go to see my doctor to make sure my artificial thyroid hormone levels are where they need to be and that everything else is functioning as it should be and that the parathyroid is doing OK and all of that business. The last few visits, my thyroid level has been low. Which could be playing a part in the weight gain, hair loss, feeling miserable situation I have going on.... but those are also side effects of my seizure drugs, so it's hard to tell.
They upped my thyroid last time... it didn't work. So they are upping it again.
The problem is, there is a chance that one of my seizure medications is preventing my thyroid medication from working properly.
ROCK|Katie'sBody|HARDPLACE
I need both of these medications. I have hit the max dose of the seizure medication, so hopefully, upping the thyroid will help and they won't be battling it out anymore, but we shall see.
After I saw my endocrinologist, I had a pretty huge appointment up at Stanford. I met with my neurologist as well as the head of the neurosurgery and we discussed my options.
My epilepsy is not responding to medications... Right now, I am on a pretty high dose of a medication that I can't pronounce or spell. And if I go on a higher dose, then my lips swell and my tongue goes numb. I am on a second medication- one I was on in my teens for my migraines, called Topamax. I am on the max dose for that. However, I am still having "breakthrough seizures". And it's the complex partial seizures- thank God. But I will go a week... 10 days.. I will be doing GREAT. And I will be thinking "YES! I'm finally doing it!" and then I'll have a seizure. And I get them in clusters, which means I have them every other day. Or sometimes, I have 3 in one day. And all I can do is sit in bed.
Different things will lower my threshold and cause clustering, we still haven't found a trigger. I had an ear infection, that lowered my threshold and I had what is classified as a grandmal seizure. If I had been standing up, I would have been seriously injured. If I had been anywhere but where I was, I would have been seriously injured. Luckily, I was in bed because I had an ear infection, so I was already surrounded by pillows and soft things. Severe PMS, lack of sleep, not eating enough, crowds, too much caffeine, not enough caffeine, WHO KNOWS- so many things and also nothing at all seems to lower my threshold. It seems like my biggest seizure free stretch lately is about 3-4 days. It's been rough.
So my doctors called me in. And knowing all of this with the clusters and the medicines and the thyroid and the everything... I am a candidate for surgery. Which we had discussed before but now it's real. Now I'm talking to the head of neurosurgery. We rule out, almost immediately, implant options because neither of those are going to work for me. (If you want info on the RNS or VNS: https://www.medscape.com/viewarticle/818699_2 that has some info)
And we start talking about the different surgery options. My choices are a temporal lobectomy (https://www.webmd.com/epilepsy/guide/temporal-lobe-resection-epilepsy#1) which is the "traditional" way and a laser ablation ( https://www.youtube.com/watch?v=MMENvNN_Nt8&feature=youtu.be ) which is newer and terrifies me a little bit more even though it's less invasive and doesn't involve removing a chunk of my skull.
So I talk it over with them. My parents and Randy are also in the room and we are all asking our questions... it's just such a weird decision- "Which way do you want us to cut into your brain? If we do it this way and it doesn't work like we want it to, then we can still do the other one, but it we do it the other way and it doesn't work, then we can't do anything else..." Yes. That's basically what they said.
The laser is safer. The laser has less bad things that can happen. The laser also has less data because it's newer... so MAYBE it won't work. And if it doesn't work, they will have to go back and do the other one anyway. But if they do the other one right off the bat, and it doesn't work, then oh well, we tried? And that's where my hang up was. I just kept going back to that.
And the head of neurosurgery looked right at me and very confidently said to me "If it were my family member, I would do the laser ablation. No question." So... laser ablation, it is. I think that's what I needed. I needed someone to tell me something like that. I needed facts and confidence. Before, I was just getting a lot of overwhelming information.
He told me he would send his surgery scheduler down and we should be able to get something on the books for Februaryish.... She came down and said because we have to use the MRI suite for that surgery, there weren't any openings until May. (MAY?!) And she would call me once she heard for sure from the MRI people.
The next day, she called me. She had a date for me. May 23rd.... I said thank you and I hung up. And I cried. A lot. For some reason, May 5th would have been OK, but May 23rd was the END OF MAY and just so far away. When you're told February, and you get May, and then you get the end of May... All I want is some kind of normal back. I can't wait to wake up without the inside of cheek chewed up because I had a seizure in my sleep. I can't wait to shower with the door locked. I can't wait for everyone to feel OK leaving me alone with my kids.
And after I cried and moped and was miserable for almost a week all the while trying to be grateful that I was going to be fixed, but hoping it was going to be sooner... She called again. There was an cancellation and an opening and I got moved up the line. March 28th. And I cried all over again. For a whole different reason.
My head hurts today. A lot. It does that. The right side, where the "electrical storms" happen. And I keep telling myself "84 more days... I can do this." And then maybe, FINALLY, I can say I am seizure free and the count will grow and keep growing and I won't go back to zero anymore. And that will be so amazing.
