# I am so scared...



## LoriS (Jan 7, 2011)

I posted before about having a seizure, since then I have had three grand mal seizures (right now I have a bruise on my forehead in the shape of the corner of my stove and one on my cheek the shape of the oven handle). I had to go to my neurologist today. He upped all my meds and added Klonopin, but he has now classified my epilepsy as "life threatening" and refractory (which means it is resistant to drugs). So now he wants me to go to Emory Hospital to have brain surgery to remove the damaged areas of my right temporal lobe. 

I am so scared. The doctor wants to set me up to talk with a lady who also has epilepsy, she had the surgery in early November and has not had a seizure since. I would love to stop the seizures, but to shave my head, remove a flap of my skull, WAKE ME UP to test the area to see what does what and if they have to remove the whole area or just sever the neuron connections so I don't seize anymore. 

My husband wasn't there when I seized, ironically he was at the lawyer's office seeing about my disability case. I woke up alone on the kitchen floor with a bleeding arm (I was washing dishes and fell holding a knife) and a bloody nose, and two huge goose eggs on my forehead and one on my cheek.
I don't remember it but apparently I got the phone and hit redial, which called my mom, and she called the lawyer's office, he came home and took me to the ER. Another concussion. My fifth one in two months. They want me to wear a helmet, which I absolutely refuse. Once I am on disability I will have Medicaid to pay for an MRI and the brain surgery, but I am terrified!!! 

I don't want to have brain surgery. This is a nightmare...


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## penguin (Jan 7, 2011)

That is terrifying! From what I understand, the surgery can help a lot, but still, it's brain surgery! I hope it goes well for you.


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## HottiMegan (Jan 7, 2011)

I'm so sorry you're going through this! I hope that you get your disability and all the medical help you need. I hope what ever happens you can get your seizures taken care of.


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## graphicsgal (Jan 7, 2011)

I am so sorry you are going through this, sweetie. I hope that all the stars align and you will come out of this the other side safe and sound. ((hugs))


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## LoriS (Jan 7, 2011)

Thank you so much... those that pray, please pray for me. I am so frightened.


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## Fat Brian (Jan 7, 2011)

Honestly, you really need the surgery. If your seizures have become that bad and frequent something drastic needs to be done. I know it won't be pleasant but its definitely more pleasant than what your going through now.


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## CastingPearls (Jan 7, 2011)

LoriS said:


> Thank you so much... those that pray, please pray for me. I am so frightened.


Will do. You're in my thoughts and prayers.


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## Cynthia (Jan 7, 2011)

Lori, I'm sending lots of warm wishes your way. Probably many of us on these boards live around Emory and would be glad to tell you more about the area. It's a fantastic hospital.


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## Paul (Jan 7, 2011)

LoriS said:


> I posted before about having a seizure, since then I have had three grand mal seizures (right now I have a bruise on my forehead in the shape of the corner of my stove and one on my cheek the shape of the oven handle). I had to go to my neurologist today. He upped all my meds and added Klonopin, but he has now classified my epilepsy as "life threatening" and refractory (which means it is resistant to drugs). So now he wants me to go to Emory Hospital to have brain surgery to remove the damaged areas of my right temporal lobe.
> 
> I am so scared. The doctor wants to set me up to talk with a lady who also has epilepsy, she had the surgery in early November and has not had a seizure since. I would love to stop the seizures, but to shave my head, remove a flap of my skull, WAKE ME UP to test the area to see what does what and if they have to remove the whole area or just sever the neuron connections so I don't seize anymore.
> 
> ...



Lori,

If you have to have surgery ask you Doctor if it is possible to have the procedure done with a Gamma Knife. The Gamma Knife is a non-invasive method for brain surgery. Here is a useful link I found: 

http://professionals.epilepsy.com/page/surgery_radiosurgery.html

Google gamma knife for more useful links. Our local hospital has within the last year installed a gamma knife and reports of the surgical results are amazingly positive. The skull does not have to be opened up as with traditional brain surgery. The gamma knife is the way of the future.

Please keep us updated.


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## Isa (Jan 7, 2011)

Lori,

I know this is terrifying but it sounds like you really need the procedure. My cousin suffered for years with seizures and ended up having a something similar. She was terrified and tried everything offered by the doctors before finally consenting to going under the knife. To this day she says the surgery was the best thing she ever did because it returned her life to normal. Try thinking of the benefits to come and the healthy life you can lead after.


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## LoriS (Jan 8, 2011)

Isa said:


> Lori,
> 
> I know this is terrifying but it sounds like you really need the procedure. My cousin suffered for years with seizures and ended up having a something similar. She was terrified and tried everything offered by the doctors before finally consenting to going under the knife. To this day she says the surgery was the best thing she ever did because it returned her life to normal. Try thinking of the benefits to come and the healthy life you can lead after.




Thank you so much for the hope... the doctor wants to set me up to meet a chick who went thru it and has not had seizures since. The new meds have made me a bit loopy so I apologize for not responding sooner. I feel like I am floating. Whee. 

I just can't imagine them raking out the dead scar tissue along with part of my brain... what if I'm not me anymore afterwards? I hate this fear, but today I had three bad myoclonic seizures, and I don't want to die!

Oh, I am just so scared! The worst part is I have a choice... live with the seizures or lose part of my brain. I don't know what  to do...

The surgery would be a big deal, I'd be in ICU after and the side effects could be disastrous.


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## LoriS (Jan 8, 2011)

Paul said:


> Lori,
> 
> If you have to have surgery ask you Doctor if it is possible to have the procedure done with a Gamma Knife. The Gamma Knife is a non-invasive method for brain surgery. Here is a useful link I found:
> 
> ...



Thank you so much! I bookmarked that page for my husband, I am too loopy right now to get it. Thank you!!


Thank you much! I am too loopy to read it but I bookmarked it fir my husband.


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## Donna (Jan 8, 2011)

LoriS said:


> Thank you so much for the hope... the doctor wants to set me up to meet a chick who went thru it and has not had seizures since. The new meds have made me a bit loopy so I apologize for not responding sooner. I feel like I am floating. Whee.
> 
> I just can't imagine them raking out the dead scar tissue along with part of my brain... what if I'm not me anymore afterwards? I hate this fear, but today I had three bad myoclonic seizures, and I don't want to die!
> 
> ...



It's a scary situation and I am sorry you are facing it. Fear is a normal response when faced with such an overwhelming unknown. And while the side effects of the surgery could be disastrous, can you truly live with the seizures? Like Isa, I also have a family member who has had this kind of surgery and he often wishes he had allowed the doctors to do it sooner. 

Whatever you decide to do, just know that someone out there is praying for a smooth and bump-free road to recovery. All my best.


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## LoriS (Jan 8, 2011)

Donna said:


> It's a scary situation and I am sorry you are facing it. Fear is a normal response when faced with such an overwhelming unknown. And while the side effects of the surgery could be disastrous, can you truly live with the seizures? Like Isa, I also have a family member who has had this kind of surgery and he often wishes he had allowed the doctors to do it sooner.
> 
> Whatever you decide to do, just know that someone out there is praying for a smooth and bump-free road to recovery. All my best.





Thank you... the prayers mean a lot to me. I have the type of epilepsy that is prone to status epilepticus and sudden death. That's why I'm labeled as "life-threatening" and they want me to have surgery. Logically, I know that I should have the surgery, but emotionally I'm terrified . Maybe I;m just being a baby about this...


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## toni (Jan 9, 2011)

OMG, I am so sorry you have to endure such a horrible surgery. My thoughts and prayers will be with you.


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## LoriS (Jan 9, 2011)

toni said:


> OMG, I am so sorry you have to endure such a horrible surgery. My thoughts and prayers will be with you.




Thank you so much! The increase in my meds has been difficult. I am so dizzy... usually I can type 100+ words a minute but now I have to hunt and peck. I am so dizzy right now,

My husband is my rock, though. I thank God for him. We are struggling because his unemployment ran out and he really could not leave me alone to go to a job, so we have zero income until the disability comes through... I'm scared and I feel so guilty being a burden on him. I love him so much and he has been right there with me. I don't know what I would do without him...


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## Jes (Jan 9, 2011)

Lori---I am so sorry to hear this, and I am sending you all good thoughts. It is normal to be scared--that means you're taking the situation seriously and that's really important! And it sounds like your doctor is, too, and that he feels he has the right solution to help you with your problem. I can imagine that facing brain surgery doesn't seem like a positive, but try to believe that there's something good about having a medical answer to your illness. You will get through this and be able to enjoy the benefits it brings you! Good luck.


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## LoriS (Jan 9, 2011)

Jes said:


> Lori---I am so sorry to hear this, and I am sending you all good thoughts. It is normal to be scared--that means you're taking the situation seriously and that's really important! And it sounds like your doctor is, too, and that he feels he has the right solution to help you with your problem. I can imagine that facing brain surgery doesn't seem like a positive, but try to believe that there's something good about having a medical answer to your illness. You will get through this and be able to enjoy the benefits it brings you! Good luck.




Thank you, I am trying to focus on the one bright spot- the seizures could be gone forever after the brain surgery. Before this, I had been told they would be forever and I would be on the medications the rest of my life. But if I have the surgery and it is successful then they would taper me off my seizure meds over the course of a year to make sure I won't seize, then after a year they would stop the meds for good. This would be great for me because I am taking eight pills of Dilantin, three Klonopin, two Lyrica every day. It's just such a tough choice, there are awful risks involved... but if I can stop all meds then maybe in the future I could have a baby, I am 34 and never have had a child because of my health. I just am having a hard time thinking about brain surgery, it is such a huge thing- and they would remove part of my brain. That is terrifying- what if I am not me anymore after?


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## paperman921 (Jan 9, 2011)

I will be praying best of wishes on your journey


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## LoriS (Jan 9, 2011)

Thank you for your prayers... I need to get approved for disability so I can have a new MRI and get the presurgical options... right now I can't even afford the sleep medications the doctor wants me to take. The thought of having my head cut open and part of my brain removed is just not real to me. Would I still be me? Would my thoughts, my memories, my instincts be different? I hate this anxiety...


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## Fat Brian (Jan 9, 2011)

I think thats why they want you to meet someone who's had the procedure, so you can ask those questions of a person who has been through it. Also, the area they want to remove is damaged and not functioning correctly already, the risk of removing something thats already broken is lower than some other surgeries they do.


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## Jes (Jan 11, 2011)

LoriS said:


> That is terrifying- what if I am not me anymore after?



I don't think the surgery would be considered a reasonable treatment for this problem if it changed people's personalities forever. Know what I mean? I know it's scary, but try to think logically about this--if it damaged people more than it helped them, it wouldn't be an option.

Have you thought more about contacting the patient that your dr. wants to set you up with?


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## LoriS (Jan 11, 2011)

Hi everyone... and many hugs. Yes, I have thought about contacting her for a meeting, but somehow that makes it all real in my mind... is that silly?

The Klonopin has really taken the edge off of the anxiety, thank goodness. I was crying nonstop before. They want to try me on one more medication for the surgery but I cannot afford it, and right now I am at serious risk of what they call "status epilepticus" which I think basically means that you go into seizure and it does not stop intil you are dead. i don't want to die, but at the same time I am a huge burden on all of those I love- my husband cannot get a job for fear of leaving me alone (this last seizure I was alone and was very fortunate that all I received were some cuts and a concussion), my family can't afford to keep supporting me, I've pawned all of my jewelry (and on January 24 I lose it) and I just feel hopeless. I was thinking last night- they say suicide is so selfish, but when your life is a burden on absolutely everyone you love, isn't it selfish to not consider suicide? I'm not saying that I will, I'm just trying to say where my mind and my heart are at right now. We have seven dollars left. My husband should be able to be out earning a paycheck, and he would if it were not for me. I've brought everyone down with me. OK now I am crying again. I'm going to sign off for now. (p.s. the only reason we have internet is because his parents' service allows for an extra connection, so we aren't spending money on it, and we have no cable or cell phones either.) I just feel so sad...I love my husband and family and they shouldn't have to be brought down with me...


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## Jes (Jan 11, 2011)

LoriS said:


> Hi everyone... and many hugs. Yes, I have thought about contacting her for a meeting, but somehow that makes it all real in my mind... is that silly?
> 
> The Klonopin has really taken the edge off of the anxiety, thank goodness. I was crying nonstop before. They want to try me on one more medication for the surgery but I cannot afford it, and right now I am at serious risk of what they call "status epilepticus" which I think basically means that you go into seizure and it does not stop intil you are dead. i don't want to die, but at the same time I am a huge burden on all of those I love- my husband cannot get a job for fear of leaving me alone (this last seizure I was alone and was very fortunate that all I received were some cuts and a concussion), my family can't afford to keep supporting me, I've pawned all of my jewelry (and on January 24 I lose it) and I just feel hopeless. I was thinking last night- they say suicide is so selfish, but when your life is a burden on absolutely everyone you love, isn't it selfish to not consider suicide? I'm not saying that I will, I'm just trying to say where my mind and my heart are at right now. We have seven dollars left. My husband should be able to be out earning a paycheck, and he would if it were not for me. I've brought everyone down with me. OK now I am crying again. I'm going to sign off for now. (p.s. the only reason we have internet is because his parents' service allows for an extra connection, so we aren't spending money on it, and we have no cable or cell phones either.) I just feel so sad...I love my husband and family and they shouldn't have to be brought down with me...



It doesn't sound like the lives of anyone in your family are a picnic right now, you're right. But what if it were your husband with a life threatening illness? You seem very worried, concerned and sad for him right now and he's ok, health-wise. If he were very ill, you'd do anything to make him better, right? And I suspect he feels the same about you. Would your emotional life be better if he were dead? I don't think so. Nor would HIS be if YOU were dead. Right? You are all making the effort to keep yourself alive right now, and that's a good direction to be going!
Tell your Dr. you can't afford the medication, ask for help in getting it for free (sometimes Dr's have access to that and many companies are willing to help users get pills at reduced prices or free. Get in contact with this woman and tell her your concerns and listen to her story. We at Dims can give you lots of support, but we can't get you drugs and we can't tell you how the surgery will be. Pursue those other options; don't let your fear paralyze you!


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## Fat Brian (Jan 11, 2011)

When some of Crystals bipolar meds were name brand and expensive we made arrangements with her doctor and he would get us free samples from the drug reps that came around. I know that probably won't work for all your meds but its worth a shot. Also, drug companies do give drugs away for free in certain cases, contact the manufacturer directly, they all have outreach organizations can assist you.


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## LoriS (Jan 12, 2011)

The Klonopin they added to my daily regime has helped with this new anxiety0- I feel pretty chilled out, which is good because I have run out of my Prozac and we cannot afford to have it refilled. Anyway, I am more able to deal with this and you all have made me feel like I am sharing this terror among friends. I want to thank all of you for your support. I don't feel alone. :wubu:


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## LoriS (Jan 12, 2011)

Fat Brian said:


> When some of Crystals bipolar meds were name brand and expensive we made arrangements with her doctor and he would get us free samples from the drug reps that came around. I know that probably won't work for all your meds but its worth a shot. Also, drug companies do give drugs away for free in certain cases, contact the manufacturer directly, they all have outreach organizations can assist you.





Thank you! I have done that with my Lyrica, it would be like a thousand dollars a month but Pfizer is sending it to me free. Unfortunately I have not found another way around the other m,eds. I'm sorry I sounded so pitiful before. I guess sometimes you just need to feel sorry dor yourself for a bit, right?


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## Fat Brian (Jan 13, 2011)

I'm glad you were able to get at least some help, just keep at it and more should come.


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## Miss Vickie (Jan 13, 2011)

Lori, I'm glad you're feeling better and that the Klonipin can help you. I hope you're able to get help with your medical bills ASAP. It's just unconscionable to me that people can't get care because they don't have insurance.  It makes me so sad.

Best of luck with everything, and please keep us informed on how you're doing.


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## LoriS (Jan 13, 2011)

Miss Vickie said:


> Lori, I'm glad you're feeling better and that the Klonipin can help you. I hope you're able to get help with your medical bills ASAP. It's just unconscionable to me that people can't get care because they don't have insurance.  It makes me so sad.
> 
> Best of luck with everything, and please keep us informed on how you're doing.



Your post made me tear up_. and I agree on the health care. My last MRI was three years ago when I had insurance, and showed four dead spots then, who knows about now? I am glad to not have the anxiety but I feel like a zombie. No seizures though for last four days! Again, all that pray, in whichever way you pray, please pray for me. Even with the Klonopin I am still so scared...


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## LoriS (Jan 13, 2011)

LoriS said:


> Your post made me tear up_. and I agree on the health care. My last MRI was three years ago when I had insurance, and showed four dead spots then, who knows about now? I am glad to not have the anxiety but I feel like a zombie. No seizures though for last four days! Again, all that pray, in whichever way you pray, please pray for me. Even with the Klonopin I am still so scared...



*the dead spots were in the right side of my brain.


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## Elfcat (Jan 26, 2011)

You are definitely not alone. It is hard to know what to say to someone who is facing such monumental challenges. I'm trying to write anything that isn't trite or pompous or cliche or in other ways the hallmark of someone who will never truly understand fear quite the way you do. I could say this is exactly why I think a society as wealthy as ours shouldn't be leaving a family on the rocks because someone had some alternate genetic luck. But for now I will just say stay with us, keep posting when you can, and know we all hope for better days for you.


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## Paul (Feb 7, 2011)

How are you doing Lori? Any updates you can share? I hope and pray you are well.


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