A Little History
My seizures are not the type that most people think of when you say "seizure". Most people conjure up images of a convulsion where a person falls to the ground shaking and their eyes roll back, swallowing their tongues. Perhaps television or gossip is responsible for that image.

There are many kinds of seizures. But, for those of you that are unfamiliar: There are basically two kinds. (Forgive me for this simpification for those of you knowledgable in clinical neurology). Seizures where the body stiffens, and the muscles jerk intensely often cause unconsciousness, and an inability to respond for many minutes (or even hours in some cases). These are called "grand mal" or "generalized". Generalized - due to the fact that the cause of the seizure has to do with an abnormal spead of electrical activity in the brain over the entire brain. The second kind of seizures are called "partial" due to the limited spread of electrical activity in one part of the brain. Seizures of this nature usually cause symptoms related to an alteration of consciousness (sometimes awareness by the individual, sometimes not), and unusual or bizarre sensations or experiences. My seizures are of the "partial" type.

The "spot" in my brain that is reponsible for the origin of my seizures has probably been there since I was born. I was 22 when my symptoms began and had many CAT scans after my diagnosis when I was 27. The CAT scans never showed what was causing my seizures. I finally underwent an MRI 7 years later as part of my routine workup that showed an abnormal blood vessel which had bled in the left side of my brain in the temporal lobe (just above the left ear). I finally knew after 12 years what had been causing my symptoms. It is unknown when the bleeding had occurred.
The "spot" of mine is called a cavernous hemangioma, or just "angioma". It is located in the left temporal lobe, an area that is primarily responsible for language function - the ability to speak and understand language and short-term memory.

My seizures consist of intense feelings of deja vu - the feeling I have done or been to a place before, a rising feeling in my stomach and nausea, out of body experiences as if I am floating in space, moving in time and space as if in fast motion and intense fear as if I will die and never come back again.

My perception of these feelings happen in an just a few seconds in time for me, and are hard to explain. I have been told that the episodes often last many minutes, but I am not often aware of the passage time. Sometimes I try to run to a safe place when it happens, especially in front of other people. These symptoms are why my neurologist cannot let me drive or allow me to do activities which may endanger my or anyone elses life.

As my symptoms are not completely controlled on the medications after several years of treatment, I am now moving to the next stage of my treatment... surgery to remove the angioma.

glenda

About the Operation
My surgery is scheduled to take place in Burlington, Massachusetts at the Lahey Clinic on June 20, 2005. The neurosurgeon that will perform my procedure is Dr. Rees Cosgrove, the one I consider to be the most highly qualified surgeon in the Boston area to perform this procedure. He routinely performs this type of surgery at least once or twice a week.
The procedure itself is expected to take many hours - probably 6-8 or more. In order to visualize the area, a flap of skin above the left ear will be pulled back and an incision will be made into the left side of the brain thru the skull above the left ear. A special saw creates a window in the skull to gain access to the temporal lobe. This is where the skill of the surgeon will determine the extent of tissue that is removed. The plan at the moment is to remove the angioma itself and the surrounding rim of old blood. As there is some scarring of the brain tissue next to the angioma, this will probably be removed. The angioma is located deep in temporal lobe, adjacent to the memory center of the brain. The memory center will be spared. In so doing, hopefully this will also preserve all of my memory abilities. Although there are no guarantees, my surgery is expected to have an excellent outcome due to the relatively small size of the lesion (about the size of an M&M). My chances of getting rid of my seizures are greater than 70% with this surgery. This is in contrast to the dismal 5% chance with medication alone. So, things are looking in my favor.

glenda

Medication Side Effects

Currently, I am taking two drugs that are standard antiseizure medications for the treatment of "partial" seizure disorders. All together, I have been on 9 different drugs, in various combinations, in the effort to control my seizures over the last 20 years. I suspect many people do just fine taking these types of medications, with little or no side effects, but I don't happen to be one of them. Even though my current medications, Lamictal and Zonegran, are known for their tolerability, I still have many undesirable side effects.

Physical symptoms such as muscle weakness, headache, incoordination, tremors, fatigue and numbness of my legs and feet along with the cognitive problems of memory loss and drowsiness plague me as much as the seizures. Sometimes I wonder if the treatment is really worth it. This is especially true when I have just started a new medication or just had a medication dosage change. Usually I have an exacerbation of one or more of the side effects I have just gotten used to and then I have to get used to things all over again. My latest side effects are headaches, which I have nearly every day and anorexia.

I was told by my doctor that the headaches could be from the medications or maybe the angioma or both. For whatever reason, I had a worsening when I had to increase my Zonegran dosage about 6 months ago, and this resulted in a nearly continuous pounding headache that feels like someone wacked me in the back of the head with a baseball bat. I can feel a pulsation between my eyes and even in the roof of my mouth. When my alarm clock goes off in the morning, as soon as I open my eyes, I am immediately aware of the pounding in the back of my head. Based on the severity of the pounding, I can tell if it's going to be a bad day or a REALLY bad day. And about once a week, for no particular reason, I wake up with NO headache. My repeated analysis cannot figure out the pattern for this phenomenon.

The anorexia is a curious problem that feels odd to me and defies my previous eating habits. I believe the Zonegran I take is responsible for that. A large percentage of people on this medication will lose their appetites and as a result lose weight as well. For me, food smells and tastes good, but after the first few minutes of eating, I'm pretty much done and ready to leave the table. As strange as it sounds, even watching other people eat makes me feel full. As a result, I have lost about 15 pounds. I've learned over time that if I drink too many liquids before I eat, I just don't feel I have much room left in my stomach for the food.

My sister tells me to eat small quantities with really big calories. That means no diet foods or skimming calories for me! I have to really be conscious of how much I've eaten and then eat a little more on top of that. The crazy thing is, I'm thinking, "I'm so full I'm going to burst!"

But that's all an illusion that the Zonegran has created. When a "normal" plate of food for me consists of no more than a quarter of the plate, I look at a regular-sized meal on a plate as being a mountain of food. I just can't figure how I was able to fit all that food inside me before!

My goal until surgery is to try to gain a little weight if I am able to do so, as I am anticipating some weight loss from the procedure and early recovery. Time for some meal planning...

glenda

The Importance Of Family and Friends

A few years ago, when my seizures became uncontrolled to the point that I had to leave work, I felt it was the darkest time of my life. The depression and anger I felt had no name- there was noone to blame. I felt saddened and for some reason this caused me to feel somewhat frozen to do anything else. Partly due to the sedative effects of the medications and my general melancholy, I had really no desire to pursue any activities. Life seemed to have little purpose. But, through the support of my family and friends, I have discovered there are more people than I realized that care about me and have been sending "positive energy" my way.

To my friends- THANK YOU for giving me rides to the store, and other places, and the encouragement that I needed to get out of the house. Your friendship means so much to me. You will never know how much I appreciate you.
To my family- YOU HAVE STOOD BY ME over the years and shared my triumphs as well as the challenging times of my life. Your faith in me never waivered- you always believed in me, even in times when I doubted my own future. And now, once again, you are there for me. You have never failed me. I haven't said it enough, but I love and cherish you with all my heart.
To my Husband- THANK YOU for always being by my side. You have always loved me and given me the courage to go forward. I have always struggled to find the meaning of happiness for me, and you have shown me that to be happy isn't difficult, I just have to make up my mind to do so. I LOVE YOU FOREVER.

glenda

12 Days to Go
Well, now it's close enough that I'm starting to count the days.

THANKS so much to the people special in my life sending me messages of encouragement. You don't know how much it means to me. I know it sounds corny, but I wish I could give you a great big hug in person and tell you I promise to do my best to get better really fast.


At least every day or so I experience an episode of what is called a simple partial seizure. As I have described in an earlier entry, a partial seizure is electrical activity that occurs in one part of the brain. This activity is like a wildfire- it is uncontrolled electrical activity that spreads throughout the brain very quickly, unlike in a normal brain where normal electrical activity travels along defined pathways. There are two kinds of partial seizures- simple and complex. While both involve one part of the brain, simple partials are less severe in their symptoms.

Last night, as in all the simple partial episodes I have had in the last 6 months, I have a feeling that washes over me over in a period of several minutes. As I sit in my chair, I feel a heavy ball, at first the size of a beach ball, growing in my hands. I feel the urge to place my hands in my lap to hold to ball up as it gets heavier in my lap! It gets larger to the point it begins to push up under my chin and my jaw,gigantic and heavy, in fact, the ball pushes so hard I have to clinch my jaw to prevent it from pushing my head up and back. I feel it is hard to breath and I am swallowing hard at this point due to the pressure. My hands feel very large and sometimes the feeling gets to the point that I can't even feel my arms past the elbows-they feel that they have disappeared. I feel trapped in this positon for several minutes. My tongue doesn't work right, I don't feel I can talk normally. Everything else around me is normal. In previous episodes, if there are other people present, they go on doing what they are doing. Sometimes they don't notice anything is unusual. And then, after several minutes, I am able to move again and the episode is over...

The song, "He's got the Whole World in His Hands" takes on a whole new meaning...

Is this coincidence?
Two days ago, as we were driving to my daughter's softball game, the song, "Somewhere Over the Rainbow" was playing on the radio. And then, on the way home after the game, among the thunder clouds, we could see a beautiful rainbow in the distance.....(you know the name of the Good Witch...)

glenda

Only one more day until we leave for Boston. I will be accompanying my sister and her family on the trip.

As I sit and look out my window, I see a small patch of dirt where I sowed some marigold seeds. I'm not much of a gardener, but marigolds never fail me. The seeds have sprouted and are poking up now through the soil and I see the beginnings of new life reaching for the blue sky.

I am reminded of how God's love and mercy are renewed each morning.

I won't be here to see my seedlings progress each day for almost a month - I will look forward to seeing them upon my return.

melody

Preparing for Surgery
Yesterday night, with a chilly breeze in the air, we arrived in Boston. It was nice to finally come to my aunt and uncle's warm and comfortable home. I remember going to their house as a child and through the years have always returned for many family gatherings and celebrations. Although the house has undergone many changes and renovations over the years, it still contains the warmth and love of my aunt and uncle who have been so close to me. How fitting that, once again, I should return to their care. We will all be staying there through the coming days and during my recuperation.

Today I finally met Dr. Rees Cosgrove, the neurosurgeon that will operate to remove my angioma. He is an articulate, elegant man with the kind of gentle voice you would want a surgeon to have that is about to handle your brain. I immediately felt at ease when we talked together and he described the operation to me. This gentleman has obviously been through this routine many times before - a fact that is very reassuring to me. In fact, he told me he has done about 1200 of this particular kind of surgery before. Perhaps more than anyone else in the entire Boston area. Very Reassuring.

Over the years, the surgery to remove angiomas has been refined and improved to the point that a smaller incision is now made with less trauma and thus, a faster recovery. Dr. Cosgrove estimates that the surgery and associated preparations is to last approximately 5 hours. After I am put to sleep, the surgery is performed after the skull is stabilized in a specialized "vise" that holds the skull perfectly still. He plans on going into the skull just above the left ear, just behind the hairline. The skin incision will be just 3 inches or so in length. He has refined the technique to creating an opening in the bone about the size of a silver dollar using a special bone saw. The tedious job of entering the left temporal lobe and navigating to the angioma will be accomplished with the use of microinstruments and microscopes. On the way down to the angioma, some normal brain tissue is sacrificed to reach the purplish hemorrhaged area and rim of scarred tissue. Luckily, the abnormal tissue is only the size of a peanut - hard to believe all this work for something so small.
When the procedure is over, I will go to the recovery room where I will be allowed a short visit with my family when I am awake enough to respond to them. If all goes well, I will be moved to a regular room after an overnight stay in the recovery room.
Today's visit has my mind swimming about thoughts of what life might be like after surgery. After meeting with Dr. Cosgrove, for the first time in 3 years, I feel at ease about the surgical procedure that might very well correct my epilepsy.

glenda

Show Me the Calories

Our goal for the next few days is to fatten Glenda up. I made her eat an entire steak bomb for lunch (for those of you who are not from the east coast, a steak bomb is an amazing concoction of thinly sliced grilled steak, onions, green peppers, mushrooms and provolone cheese in an italian sub roll - it is always most deftly prepared by a guy who looks like he's consumed a lot of these himself). Aunt Lisa made us a yummy chinese dinner. After that, we went to do a little shopping at the mall and decided to go to Dunkin' Donuts and consume some tasty treats there. Then we stopped at the market to get some ice cream. We didn't get home until 11pm! I don't think I've laughed about food this much in years.

I sure hope she's gaining weight, because if nothing more, I am gaining weight!

melody

Day Before Surgery

I had a dream last night that I was wheeled down the corridor that led down to the operating room into surgery. I was feeling relief that it was finally happening and I didn't have to think about it any more. The nurses were getting everything ready and it was all very routine, orderly and cheerful, like they had done this a million times before...

Well, that's how I woke up this morning - my last day before surgery. So, today I called Lahey and the Surgery Office confirmed the start time of surgery is at 10:00am tomorrow. Today, I'm going to have a great big ice cream sundae. Maybe go out for some seafood. Tonight, I prepare for the surgery by washing my hair with a special soap to "sanitize the surgical area". Then, nothing to eat after midnight. So, I'm going to enjoy eating tonight!

In the morning, I report to the ambulatory surgery center, where I will meet with Dr. Cosgrove briefly. Then I will say my goodbyes to my loved ones and be wheeled into the surgical suite. Various lines and tubes to administer medications, monitor blood pressure, regulate oxygenation, monitor urine output, etc. will then be placed as soon as I arrive. When I am asleep with the anesthetic (this is the part where people often count backward from a hundred), a ventilator is utilized to control breathing, as the anesthetic causes paralysis of all muscles, including muscles of breathing. Then, the surgery begins.
The next thing I should be aware of is waking up in the recovery room, (I suspect with a terrific headache!), the procedure done and over with. Dr. Cosgrove told me I probably won't remember much about the recovery room or even much about the rest of the day, but what matters most is getting over it and waking up to someone's voice.

I always have to remind myself that I am lucky. Not only to be given a second chance, but to have the love and support of my family and friends. I have recieved phone calls from my family and friends, words of encouragement and united prayers. I am fortunate.

So, tomorrow's the big day. I'll meet you guys over the other side of the Rainbow.

glenda

Surgery Day

7:30am Glenda says "see you later" to her children. She gives them a big hug and says everything will be fine. We leave the house and head off to the hospital.

8:43am She's all checked in. We gave her over to a guy in a green scrub suit. We're told her OR is "booked" until 2:15pm. Paul and I are in the family surgery waiting room. It even has this computer with Internet access so I can write you all this note. It is very nice here, very comfortable, but I imagine nobody really wants to be here.

11:45am Paul asks the nurse for a status. She looks on the computer and says the surgery started at 11:21am - there was an emergency case that came in that had to be taken care of. But now we know things are underway in in OR.

1:42pm Dr. Cosgrove comes into the waiting area - he says he is all done! Everything went exactly as planned. He has to go to take care of some other things while the assisting surgeon finishes up but promises he will return in a little while to give us more details.

3:15pm We are allowed to go into the recovery room to see Glenda. She is a little sleepy from the anesthesia, but opens her eyes when she hears our voices. Paul gives her a kiss and asks her how she feels. She says "my head hurts", then asks when will the surgery be? We all say "it's all done! you're going to be fine!" Her voice is sleepy sounding, but she answers all of our questions. One of the things she was concerned about was remembering, so we ask her what she did yesterday. She smiles and says she had ice cream at Kimball's, ate a sandwich and some baklava that Katie and Aunt Lisa made, then immediately closes her eyes and drifts off to sleep again. She is talking and remembering!

Aunt Lisa and I head home while Paul stays. He will probably hang out in the waiting room area overnight and pop into the recovery room periodically to keep an eye on her.

I feel so happy and relieved, I could burst! So thankful, so thankful...

melody

The Day After

9:30am I arrive at Lahey and a nurse escorts me to the recovery area. Paul is there with Glenda. She is talking to the recovery room nurse about the iv in her arm - the nurse is not aware that Glenda is a doctor. Paul says "did you know she's a doctor?" After a few minutes of discussion, the line is removed and her arm feels better. Now only a catheter remains. She sees me and smiles and says "good morning". Wow, she seems like herself except with a bandage on her head. She says "how does my head look?". I remind her that I saw her yesterday after surgery and she says she does not remember much from yesterday after the surgery. She then says she is seeing funny horizontal lines in her vision, "like a TV that needs adjusting". The nurse contacts services to have a PA come check this out.

11:00am Paul and I are waiting for the PA to come talk to us about the lines in her vision. We are also waiting to hear when she will be able to be moved to a regular room. Then she'll be able to have visitors.

2:20pm Finally a room is ready and Glenda is transferred. She is in 7 West 04

melody

The day after surgery

I am now typing on the hospital room`s internet access in my room. It is connected directly through the bedside tv system, how cool is that

glenda

Getting back to normal
I have a little groggyness and a headache, but, am so glad it`s finally over.

glenda

Today the dressing came off and we got to see the surgeon's handiwork. She looks better than yesterday, alert and asking and answering questions. Still a little tired, but up to a walk down the hallway with the help of Paul, Katie and Ben at her side. She doesn't have any IV or catheters to restrict her. She says her head still hurts, but it doesn't look like it's stopping her from eating small portions during mealtime. She says "the food is better here than in the Denver hospital". She views her email and all of the love and warm wishes for recovery. She smiles and says "Wow, a lot of people have written me! Even people I don't know!" Auntie Lisa brings some special chinese soup.

melody

I thought you might want to see something a little more interesting. I smuggled a video camera into the recovery room the morning after the surgery. I got yelled at by one of the nurses right after I took this short video. I guess I should have mentioned I also had a still digital camera with the power to take thousands of high resolution pictures under my jacket - but I didn't want to get kicked out.

If you have Windows XP, you'll be able to see this video - just click on it. If you've got something else, you'll have to install the Windows Media Player.

  Video of Glenda 20 hrs after surgery.

melody

9:30am Paul calls over to the hospital - it looks like Glenda already has had an MRI a few hours ago and she'll be able to go "home" to Aunt Lisa's house today! We are getting ready to go over to the hospital now.

11:30am We bring Glenda home to Aunt Lisa's house. She's smiling, eating, watching tv. Pretty much acting normal, but tired and a little sleepy. You wouldn't know something major happened only days ago.

melody

6:30pm I've had a chance to be back at Aunt Lisa's house now for the afternoon. What an experience it's been.

When I woke up after the surgery, I started noticing a series of white horizontal lines in my upper right visual field. They would come down, like windshield wipers, to the center part of my vision and disappear. At first I thought it was the flourescent lights in the recovery room, but then I noticed it didn't correspond to the pattern on the ceiling. This has persisted since the surgery, but doesn't prevent me from doing anything. Just my own little light show I guess. Dr. Cosgrove said it was common in up to 25% of patients, and would probably fade away in a week or so.

As far as my cognitive abilities, I haven't really assessed that yet. It's probably still too early to tell. I still have some sketchy memories of what happened the few days before the surgery, but at least everything that is important is still all there. I mixed up a few details while I was in the hospital, when the nurse asked me some questions, but I think I was still recovering from the anesthetic. When I tried doing a crossword puzzle today I decided to try again tomorrow when I am a little more alert. All in all, I don't feel there has been a great loss, if any.
I'm not quite steady on my feet yet and my appetite isn't quite normal, but I do feel that will be coming along better soon.

The incision looks pretty much like Dr. Cosgrove described. About 3 inches, down to just above my left ear. I have a shave job, but nothing that my hair can't cover with my stylish hat. The parts that seem to hurt the most are the three places where the vise was placed to hold my skull. I have a hole in the middle of my forehead, one in the posterior upper midline of the skull and one in the posterior lower midline. These holes correspond to the pins that are screwed into the bone to fix the skull to the vise. Doesn't that sound comfy!!! But, these are doing well and will be healed in no time.

So far, so good, as far as the seizures. I haven't had any since the surgery. I know there are no guarantees, but I'm feeling hopeful and positive!

glenda

We're seeing each day bring about improvement. Glenda's still feeling tired and the after-effects of the surgery, but says she has not felt any seizure activity since she woke up from the surgery. So that is indeed a blessing.

She had the sutures removed this morning, and Dr. Cosgrove said he thought she was doing very well, everything looked good. He brought up the scans on the computer and a quick glance at the after-surgery MRI showed a void in the skull - the piece of the temporal lobe that was removed is now filled with fluid. "You don't need that part anyway," he remarks.

She is even feeling up to walking a few minutes outside. Hard to believe this is a person that had brain surgery one week ago.

melody

Today we decided it was about time to venture out of the house to see what the rest of the world was doing while I was having brain surgery. We went out for lunch and I had a fish sandwich and french fries. Better than hospital food!!

The MRI scan that was done after the surgery showed that the angioma was removed along with most of the left anterior temporal lobe. And now YOU, the reader, get to see MY BRAIN! The view of the MRI is as if you were looking up through the bottom of my brain, my nose pointed up. Notice the dark area - this is where my left temporal lobe used to be. Now, it is just filled with fluid.

My sister asked me, "How do you feel about your lobe, now that you don't have it any more?" And I think, "Wow, I never felt so personal about my lobe like that before. I kind of miss it. Well,....maybe not now.....I think I'm glad it's gone." My sister says, "It's like an annoying relative that comes to stay with you and doesn't want to leave. You're just glad when they're gone. And you hope they NEVER come back."

glenda

It's been over a week since the surgery and I am continuing to see some improvement each day. I feel some headache all the time but that seems better each day. I noticed I have a blackeye and the left side of my neck has a bruised look from the surgery, but at the least the suture line where the stitchs were removed is healing.

Today, I feel like going out today! I don't know how long I'll last, but it seems like my energy is returning. Emotionally, I was warned by the nurse practioner that works with Dr. Cosgrove that I might suffer from some depression as part of the neuropsychological effects after surgery, and I now notice that I feel a little angry/sad inbetween the moments of happiness/recovery. That seems strange to me. That's why I want to go out and do something today.

Yesterday, I had a while where I thought I forgot something I was trying to remember. I'm not sure what was going on. There was no specific memory that came to mind. Just a flood of thoughts that came and went. Maybe my brain was trying to reconnect some neural pathways or something. I just kept thinking I forgot something. Things seem ok now, so I guess it's part of the healing process.

I feel good about my progress, each day I wake up so glad the surgery has given me something I so desperately wanted. Although I am a little anxious about my recovery in the coming months, it seems like nothing compared to the previous 24 years. The love of my family and friends kept me going. I would never trade that in a million years. I think I now have a second chance to make the most of my life. It can't get any better than that!

glenda

Around Town
I feel each day I am slowly beginning to see the light at the end of the tunnel. I always think about how many people like me are out there,.. waiting, ..looking, ..hoping that there will some solution that will give them relief from a life of seizures. My wounds are healing and each day I look at myself in the mirror and I just see the same person as I did before the surgery, other than my new hairdo. Today, I felt the left side of my head and although I couldn't feel the place where the bone incision was made, I did feel the places where I think the titanium clips and screws are located to secure the circular-shaped bone that the surgeon put back. I'm always going to have titanium in my skull as a reminder of the surgery, so I'm thinking it sort of qualifies me as a bionic woman, right? ha! ha!

Anyway, I felt good enough today to take a walk around the mall for awhile. That was really fun and reminded me of how much more I'll be able to do later on. I had to have a nap when I got back, but it was worth it.

So far, no seizures. Every day I continue to have some little experiences of forgetting things. Nothing that seems to be important, but I'm just aware that it's happening. I'm not too worried. Just one day at a time! Just not having the seizures is so fantastic - I'm in no hurry to make any judgement about my little forgetting problem. Also, the funny little white lines up in the right upper quadrant of my vision seem a lot less in the last couple of days. So, I'm going to keep plugging away!

glenda

Back Home

Well, today's the day I fly back home to Colorado. The surgeon has said it is ok for me to be up in a plane, so I guess now I'm going to find exactly how I do! I miss my home and can't wait to get back to my family.

My incision is pretty well-healed and the hair is growing back in, just a little itchy where the edges are healing. I actually think it's looking pretty good. My jaw is a little sore and I have a little headache still but, it doesn't seem to bother me too much. I seem to tire by the afternoon each day, but a nap and rest does wonders, so I suspect that will be my routine when I go home. I'm ready for a little exercise too, not having much for the last few weeks.

I think about the obstacles in my life that have come and gone, and now that I can see some resolution coming with the healing process of this ordeal, I can really appreciate this simple message:
NEVER GIVE UP. ALWAYS BELIEVE IN YOURSELF. AND ALWAYS, ALWAYS, LOVE YOUR FAMILY AND TRUE FRIENDS. THERE ARE PLENTY OF LITTLE THINGS THAT SEEM IMPORTANT, BUT DON'T LET THEM RULE YOUR LIFE. IN THE LONG RUN, THEY DON'T MATTER AT ALL. IF YOU GET A SECOND CHANCE, TAKE IT, AND RUN!!!

glenda

Almost A Month Since Surgery

Well, I can't believe it, but it's been almost a month since surgery. So far, I am seizure-free!! I'm back home again and now I'm able to look back and think about everything that's happened in the last couple of months.

Physically, I'm healing well, my incision looks better each day and I'm getting around pretty well. I still feel somewhat tired and take naps, but at least now I have the energy to want to go out and do something every day! As far as my vision is concerned, I continue to experience seeing some funny curly lines in my upper right visual field, but it's high enough that it's not obstructing my vision. I've read that a significant number of people have visual disturbances like this after epilepsy surgery, so I guess it's just something that comes with the territory. I consider it a small price to pay for the relief of freedom from seizures.

I'm planning on going out more and getting exercise, as I have been so sedentary for the last month. I'm looking forward to being more active. I'm hoping the forgetful episodes improve with time!

glenda

Two Months and Counting

It has been just over 2 months since my surgery. As far as the physical healing process, I am doing as well as the surgeon had predicted, with tenderness of my incision improving with time and my energy level gradually returning.

I still see funny lines in my upper right visual field. It has changed somewhat to look like an S-shaped cone of alternating light and dark bands of fuzzy stripes. At nighttime, I always think I left the nightlight on - with my eyes closed! Luckily, I kind of like having a nightlight on anyway.

My headaches never really cleared up after the surgery. It's just like they were before I had the surgery. I'm just hoping that getting off some of the medications I have to take now will resolve the headaches.

The Good News is: I haven't had any seizures in over two months. The longest I've gone without a seizure in the past 8 years is about 3-4 months. That anniversary is coming up really fast. I'm a little anxious, but I feel this is finally going to be the time I'll get past it.

I FEEL LOTS OF GOOD VIBES FROM EVERYONE. YOUR ENCOURAGEMENT MEANS SO MUCH!

glenda

Seeing My Neurologist Next Week

OK, ....so it's been nearly 4 months now since my surgery. NO SEIZURES. I have to consider myself one of the fortunate ones. I see my neurologist next week and I hope to find out when I can begin weaning myself off my antiseizure drugs. I also hope to find out when I am able to drive again.

For anyone that is seeking resolution of their seizures, I pray for you that an opportunity comes along like it did for me. Don't give up hope that things will work out. It's been a long time for me (23 years!), but I always thought somehow things would just work out.

I KNOW ONE THING FOR SURE,... LIKE MOST PEOPLE, I DON'T REALLY LIKE GOING TO THE DOCTOR,.... BUT, NEXT WEEK, I CAN'T WAIT TO GO!

glenda

Nearly 6 Months Since Surgery

After seeing my neurologist in October, I had blood levels drawn of my Lamictal and Zonegran, as well a follow-up MRI. Everything looked good and my doctor gave me the go ahead to begin to slowly taper one of my medications. It is a long process, taking well over a year to attempt to get me off the drugs. The risk of return of seizures has to be carefully weighed against a complete tapering off all medication.

Although I still have headaches, sometimes severe, I am feeling stronger all the time. I'm glad my hair is now growing in well and the incision doesn't hurt at all. I have to laugh a little now about the funny little lines in my right upper vision, as I think it simply inspires me to want to become an artist as I had always wanted to do when I was younger.

The best part of reaching my 6th month anniversary SEIZURE-FREE:

I WILL GET TO DRIVE AGAIN.

In the state of Colorado, a driver has to be seizure-free for 6 months in order to be released to drive. That day is December 20, 2005! Where will I drive to? I don't know. But that's all I can think about right now.

For me, DRIVING AGAIN is the only Christmas present I really want. How can anything else compare!

glenda

10 Months Since Surgery

It is now nearly 10 months since my left temporal cavernous angioma with partial anterior temporal lobectomy was performed. I have had no seizures in nearly 10 months. I am driving again. For the first time in 25 years I have hope that the seizures may never return. I feel like I have been reborn again.

Although my headaches still plague me, they are fewer and less severe. My fatigue seems to be improving slowly as well. I have started to slowly wean down on one of my medications and am hoping to eventually get off at least one of them.

Obviously, to be seizure-free and off medications is the goal. But I would settle for being seizure-free and on medications for the rest of my life if that's what it takes. We'll see what the future holds.

My 1 year anniversary from my surgery is coming up June 21th. I'm looking forward now to the future. The past is definitely behind me and doesn't plague me!

glenda

My 1 Year Anniversary

June 21, 2006 was one year since my surgery. This week we had a family get-together and my niece made me a cake in the shape of a brain that said, "Happy 1st Anniversary"! I almost cried for happiness. I have not had any seizures. My headaches are now half as often and my memory is normal.

Every day seems like a new day. There will be many challenges ahead, but I am feeling more confidence about the future. I think often about the past year and how my family and friends put a little of themselves inside me to help me get better.

Spiritually, I have a been on a journey to discover my own place in this world. More importantly, I have discovered the Hand of a great force in my life. It has been a comfort to me and although I did not know at first, I now feel that it was the Holy Spirit that help give me additional strength. I thank the Lord every day for His guidance and support!

glenda