I’ve been up almost 24 hours, so a little ranting seems justified.  Just to be safe, I’ll hold this post till tomorrow just to make sure I haven’t allowed my exhaustion to color the facts.

I went to Boston today.  Going to Boston means a minimum of 5 1/2 hours one way.  I just love getting up at 4 AM and not getting home till nearly midnight.  I am the one who usually sees the sunrise because I stayed up all night.  Getting up to see the sunrise is just wrong!  See?  I told you this was going to be a rant.

I travel to Boston to see my psychiatrist and my epileptologist.  The latter is just a neurologist with a passion for EEGs.  Ok, to be fair, he researches and treats patients who have rather rare types of epilepsy with emotional aspects.  The emotional aspects necessitate the psychiatrist who prescribes the pills that help with the depression that comes from the epileptic stuff.  So yeah.  It’s definitely a checkup from the neck up…TWICE!  Props to Kinky Friedman for that phrase.  With all that’s been going on with my brain, I find I use it a lot these days.

The EEG-lover gets quite animated when he talks about my background epileptiform bursts.  Apparently, I have them pretty much constantly.  He got a real treat when I had an actual seizure during the consultation.  There was a gleam in his eye and I knew what was coming.  In the past, he’s had suggestions that have scared the hell out of me.

I always get a little nervous when he starts suggesting things because he’s as much a research scientist as he is a clinician and he’s cutting edge (no pun intended) as far as neurologists go.  It’s no coincidence that we drive 5 1/2 hours for a consultation that lasts less than one hour.  After my seizure was over, I was ready.   I went into “look sideways mode” and waited, but he hit me with something new.

He told me about this thing called vagus nerve stimulation.  That sounded interesting till he explained that they implant a battery pack in your shoulder or armpit.  This powers wires that they loop up through your neck and wrap around the vagus nerve.  This was sounding less appealing, but I continued to listen.  At least it wasn’t what he typically talks about.  Apparently, this nerve shocking thing helps about 50% of patients.  Of the patients it helps, there is only a 50% reduction in seizures.  At least that’s what I think I heard.  I was still a little queasy from the whole nerve wrapping idea so my listening skills were a bit impaired.

Then comes the deal breaker.  If it isn’t effective, or it ceases to work, you can’t remove it.  You can get rid of the battery pack, but you are stuck with wires wrapped around your nerve…for life!  I don’t particularly care for my petit mal seizures that I have almost every day, but wrapping wires around my vagus nerve and electrifying it went just a little too far. Being stuck with it for life whether it worked or not was WAY too far.

Then he went there.  I knew he would. He knows my fears and my “absolutely won’t happen ever” stand.  He gave his little half smile that I’m sure he thought was reassuring and potentially swayful.   He looked me in the eye and said: “This isn’t brain surgery.”

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56 thoughts on “This Isn’t Brain Surgery

  1. Omg that sounds terrible. It would be a deal breaker for me too! But I’m sorry, kudos to your doctor for making a cheesy joke. Hope it made you smile a tiny bit?!

    Liked by 3 people

  2. The sad thing is that it wasn’t a joke. He doesn’t joke…ever. The thing that has scared me is that he’s suggested brain surgery and I am adamant that I won’t do it. He was merely stating the fact that this wasn’t as invasive as brain surgery. Afterward, I thought it was kind of funny given the fact that everyone always uses that phrase.

    Liked by 1 person

  3. I have a very dear friend that has had epilepsy since childhood. Her case was so bad that only 1% of the population has it to that degree. I spent many years with her having seizures several times a week. She struggled trying to find the best medication to control them. Every time the doctor’s changed the medication, there were more seizures. She spent much of her time in and out of the ER, she couldn’t drive and the quality of her life suffered. She also suffered many side effects from all of these nasty drugs. Fast forward to a doctor that puts her on a medication which has the main component of marijuana (THC) in it and her entire life changes. No more seizures…in fact no seizures at all for the past two years. She got her drivers license and her life back. It is an amazing story and I am so joyous for her. I really hope that you will check into this option and if it will work for the kind of epilepsy you have. I pray that the answer that you’re looking for is out there. Much love, Erin

    Liked by 4 people

    1. Thanks so much for this information, Erin. I’ve talked to all three of my neurologists (I’ve had seven over the last three years!) and none of them want me to go in that direction yet. I guess I don’t blame them for wanting to try more mainstream stuff first. I’m tempted to do it anyway, but that might put my insurance in jeopardy. It’s a real mess. Hey, it beats brain surgery, though. I don’t have epilepsy anywhere near the extent that your friend does. However, the meds are still being changed and I haven’t driven in 3/12 years. It sucks. I wish your friend well and I am so happy for her!

      Liked by 2 people

          1. The box that world creates. The box that holds all of the processes and procedures…the guidelines and the you have tos…outside of that box is freedom of choice, shear will and intuition. The part of you that says my input matters and I have an idea that I want to act on.

            Liked by 3 people

            1. When I was nursing my first child, I took him to the pediatrician because the inside of his mouth and cheeks were white. They told me that he had thrush, I was a bartender at the time and on an unpaid maternity leave at that. They gave me a $100 prescription to treat the thrush. I paid for it, applied it to my sons mouth and it didn’t work. I went back. They refilled the prescription. Two hundred dollars later, my son had the same problem. I asked the doctor, “What else can I try? this isn’t working.” The doctor told me to go to the pharmacy and pick up a $3.00, over the counter bottle, of Gentian Violet. It was purple. It was messy and my baby looked like the joker from batman…but it cured the thrush.

              On the follow up visit, I told the doctor that in the future,t I wanted to know ALL of my options, holistic or otherwise every time. I learned something that day that stuck with me for a lifetime. I also feel that the days where the doctors call all the shots are in the past. We are in control of our own healthcare.

              You said in your post, “My doctors don’t want me to try that yet.” in regards to a pill that contains HTC. It seems to me that invasive surgery would be a last resort…a “My doctors don’t want me to try that yet.” kind of statement, not one about a pill while you have tried many.

              Look I do not smoke pot. I am not being argumentative here or trying to be right. This treatment may not work for you. All I know is that I care about you and I have spent years loving a friend that suffered so severely. I can not believe that she is free from epilepsy. Not only that, she has met a wonderful man and is living on an island down south. She is in love, boating, traveling and living the life of her dreams. I have tears in my eyes writing this.

              In what world do we leave the most noninvasive option for last, after a box wrapped around a nerve or brain surgery. Those are the things that your doctor shouldn’t want to try yet.

              Seek out all of your options and exhaust every possibility.

              I am saying all of this from a place of love and maybe the doctors are right. I’m not a doctor, just a caring friend.

              Erin

              Liked by 1 person

                    1. Love you, my talented writer friend and I want the best for you! Follow your instincts and stand your ground for what you believe. Life is short and precious. That being said, don’t compromise.

                      Liked by 1 person

                    2. I promise I’ll do what I think is best for me. You know it is really helpful just to talk about this stuff with friends who have different perspectives. Sometimes being in the middle of it clouds mine.

                      I put my foot down about the Depakote and I knew I’d gotten my bitch back. I will stand my ground on other things, too. I promise!
                      Hugs to you, my friend!

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                    3. Hugs! I have my friend that i told you about that was epileptic. My fiance John’s ex-wife is epileptic and one of my favorite cousin’s, David’s wife. I have run the gamut. Sorry, if I said too much or became too emotionally involved, but I have lived epilepsy on many levels so I do not think that I am speaking out of turn. I would loved to see you post that you are on the noninvasive upside of this. Nevertheless, I think that you have a lot of people in your corner that love you no matter what and just want the best for you. that is all.

                      Liked by 1 person

                    4. Never feel that you are speaking out of turn. I am open to any and all thoughts on any and all topics. Never, EVER feel like you have to hold anything back for propriety’s sake. You’ve struck a chord with me in a very positive way. Plus, you can be as involved as you like. I am just so happy to have friends who are so supportive.

                      Liked by 1 person

                    5. It doesn’t matter the severity of the case but the people who suffer. You obviously have a lot of people that love and care about you. Imagine that!?! Screw depression. You are an awesome, intelligent, witty, human being that is touching people’s lives everyday. Think of that. ❤

                      Liked by 1 person

                    6. Oh my goodness, you are making me tear up here. I can’t believe how sweet you are. Sweet and strong…a perfect combination!

                      Depression, at least for me, seems to be more than just being sad about things. I used to think that depression due to chemical imbalances was an odd notion, but now I think it has merit.

                      However, what you just said made my day…made my week! So there is definitely something more to all of this than just chemicals. I’m tearing up and smiling and thanking my stars I’ve found you. 💕 ❤️ 💕

                      Liked by 1 person

                    7. You make my heart smile! LOVED the Penny story…touched my heart. My Fiance John, who has a genius IQ, read your geese story out loud to me…he loved it. Said , She’s smart, and funny. Girl, you have something to say! We want you around for a long time!

                      Liked by 1 person

                    8. Awww, thanks. It’s weirdly wonderful that people read my stuff out loud to their loved ones. You are the fifth or sixth person to tell me that. mainepaperpusher: bringing family members together one silly story at a time! hahaha! Glad you liked the Penny story. I still can’t believe that all happened. I really have had some weird stuff happen over the years.

                      By the way, I don’t intend to go anywhere soon. You are stuck with me. I was telling my psychiatrist yesterday that was having a very positive impact on my depression and he was thrilled! He’s usually very quiet but he burst out into a grin and told me how pleased he was with my progress. Truly, hanging out with all of my bloggerbuds has made a world of difference. Writing is such a great outlet, too.

                      Liked by 1 person

                1. Wow, it’s like she’s in my head! If she’s on 800mg of Lamictal I’m surprised she can stand upright. That’s my best drug for me, and the one we’re playing around with now dosage-wise. Thank you so much for this.

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              1. You are a very good friend, indeed. I am not surprised by your story of gentian root. I’m really surprised he/she told you about it at all.

                I have not closed the door on that option, believe me. I told the doc that I would try one more dosage change on my current anticonvulsant. At least this one doesn’t make me have crazy side effects unless I take too much. We’ll see if this new dosage is too much.

                One of the reasons that I’m loathe to go against doctor’s orders is because of my insurance. I want to be darned sure that they can’t come back on me and tell me that they won’t pay because I didn’t exhaust all of my doctor’s options. I can’t believe they would do that about surgery, but medication? Who knows? Anyhow, I’m just about there.

                One of the other reasons I never pushed the issue, and this is probably crazy, but pot never did anything for me. Not that medical marijuana and the the “get high” kind are synonymous, but in the back of my mind I wondered if it would be helpful. Maybe I’m immune! It makes no sense, but I’ve wondered.

                Then there’s my third neurologist. She’s local and just the opposite of “stick up his butt Boston guy.” I mentioned it to her and she wasn’t opposed, but she was concerned because she read a study that showed the positive effects on epilepsy were there, but that there were drawbacks, too.

                If I were in the dire straits that your friend was in, I’d knock some heads together till I got what I wanted. Luckily, I’m not as debilitated as she was. However, I threatened to get rid of the Boston doc once because of what he was giving me, maybe I should do the same for what he’s not giving me.

                For the record, I love you, too. 2 1/2 months ago, when I first set foot in this blogging world, I never would have thought I would meet such good friends so quickly. I want to hug you and thank you for your support. It means a lot. 💕💕💕

                Liked by 1 person

            2. I was actually half-heartedly joking with the “what box?” comment, but what you’ve written here is the best explanation of our societal boxes that I have ever read. I love your passion and I love the passion you have in support of me. I’m very lucky to have you as my friend.

              Liked by 1 person

  4. Well, I don’t know if the doctor would have received a slap on the face, right hook, stunted look or a verbal tongue lashing. I know the patient is their best interest, I know they are trying to find the best solution for the situation and I understand the concept of it not being brain surgery but damn it where’s your couth man! I mean really? Your patient is trying to recover from a seizure you had the opportunity of observing and now, right now you think is the correct moment to start offering options that has a permanent non removal not 100% guarantee it will work outcome?! You the “professional” should NEVER bring this up directly after your patient is somewhat incapacitated from an illness. OOOOHHHHH this burns me up!

    Ok breathing, calm, inhale – exhale.

    “Penny” I hope that you find the right “something” that works for you. I hope you find peace and freedom of getting your life back at whatever medical or non medical means available. I am fortunate to be living a healthy life and could not imagine living with what you go through.

    I love you and wish you only the best in finding your cure.
    Robin

    Liked by 3 people

    1. I love you, too! Isn’t it funny how we can become so close to our friends here? As for the doc, I know how he is so it didn’t really surprise me. He researches and I’m as much a subject as I am a patient. That can sometimes be a good thing.

      I appreciate that this burns you up, but I will tell you something fun to help you calm down a bit. 😉 About a year ago he decided to put me on an anticonvulsant that was awful. This was in addition to my primary anticonvulsant. I told him it made me vomit, he prescribed anti-nausea drugs. I told him it made me fuzzy-headed, he said that might clear after I got used to the drug. I told him it was making me gain a lot of weight, he told me to eat less. Finally, after six months of this, I was still having seizures and I was fed up. For the first 2 years of this mess, I was pretty docile because I didn’t have any fight in me. This, however, put me over the edge. I sat down with him and told him I wanted be off the med that was making my life so miserable. He started to encourage me to stay with it. I cut him off and said: “It’s either the med or you, you can decide.” His only response was “Thank you for making that clear, I will set up a schedule to wean you off of it.

      I told my psychologist that “I got my bitch back” and from that moment on I haven’t gone along with anything that I didn’t want to. I might be his guinea pig, but this pig bites if provoked!

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      1. Yes it is funny and wonderful. I know and understand you are a research (and lack of a better word) project and someday will help find the right treatment for you and those to come. I have absolutely no doubt that you could, would, or will put up a fight.

        I worked at a teaching / research hospital for 12 years. I wasn’t part of the hands treatment but was the one recording data/transcribing medical notes for reasearch patients. It would break my heart with yet another no go or a certain treatment wasn’t successful. And I know really, really know that these patients are everyone’s best interest. I just that I don’t like a physician that has no bedside manner no matter the circumstances. And believe me I’ve worked with some total a#@holes! You trust your doc and the two of you I’m sure, have a very good relationship. I sometimes turn into a bear when it comes to insensitivity. Growl! You should see me with my husband, kids, grand kids, siblings and parent.

        Liked by 1 person

        1. I think it would be fascinating to visit Jordan. But would I have to wear a hijab? I think getting used to the Jordanian culture might be a bit of a shock. I think Jordan is a little more progressive than other countries in your region. Now I want to know a lot more about Jordan. It would be great if you write a post about your area, culture, religion and cuisine. I would love that!

          Liked by 1 person

          1. I am pleased to know that you are interested on knowing about Jordan’s culture, of course i will post some posts talk about culture. However, Hijab is engaged to Muslims’ religion who wear it only. It is not obligatory either wear or not. You can not imagine, that we have a lot of tourists come to Jordan from all over the world, even they don’t wear Hijab. Therefore, they act positively in Jordan’s environment and its people. In addition, tourists feel comfortable while Visiting our country. As i am ready to provide some links about visitors feedback to Jordan. I have made a lot of friends from US, Germany, Swiss, and so on. However, their feedback about Jordan, it is safe country👍,as they interacted well with our people here. As well as their feedback about food is something else, you discover here such a unique and delicious food😋, you gunna like it surely😉. In brief, further explanations are coming on the way for fulfilling your needs about the country. Kindly, wait until i am done of it. Thanks to share your care about my country, mainpaperpusher. I am sure you will love, it will be something unforgettable to you. 🙂

            Liked by 2 people

            1. I absolutely love getting to know more about other cultures. I can’t wait to hear more. No hijab is good, I’d get sweaty. A sweaty mainepaperpusher would not be a good thing. I truly don’t know how Muslim women wear hijab and burka. I envy their devotion. Sending hugs!

              Liked by 1 person

              1. If it is about sweating 😂, that’s fine, you will not be sweaty mainpaperpusher, as it may not fit your style prestige. Don’t think about Hijab a lot, we respect other people’s faith when they come to country, other thing want share you here, even there are some Jordanians don’t wear Hijab respecting to their religion here. One more things about religion we have two religion ” Islam & Christian” however, I believe that Muslims wear it in simple way, as Muslims covers their head and body by wearing so called ” Abaya” it is just simple process. It is not that much complicated issue.

                Liked by 2 people

                1. It would be interesting to wear the traditional Muslim garb for a day or two just to see how it feels. There is more than one type of Islam, right. Oh wait, don’t answer that, I need to wait for your post! Patience is not my strong suit, but I will practice it for you!

                  Liked by 1 person

                  1. Yeah, you hit the nail on the head, 😂😂just have a patience, as I am gunna include everything in a deep details. Remember that practice alwyas makes easy,😂 have a nice day, mainpaperpusher. 🙂🌹❤️

                    Liked by 1 person

  5. Linda Lou who, my nephew has that same stimulator. His brain is constantly seizing, so he has a magnet he swipes across his chest.. It does seem to help with the small seizures, but he still has big ones. His seizures are so powerful they throw him across the room. Let me know if you have questions. I’ll put you in touch with my sister. 💕 Sanduiy

    Liked by 2 people

    1. I feel so badly for him! At least most of my seizures are the small ones. They are inconvenient and take away my independence, but I can live with them rather than have surgery. Do you know if your nephew has focal seizures or generalized? Mine seem to be somewhere in the middle and that’s why the doc likes to call me “atypical” As if there was any question of that! Thanks so much for letting me know. It’s nice to hear from my Sandui! 💕 💞 💕

      Like

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