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?surgery,,is it worth the trama

hi everyone, i've reached the point of trying 7 drugs to control my seizures which are auras to simple to complex partial..my activity is in the left temporal lobe. can anyone shed light on the recovery of surgery.. i am looking into that now and fear losing my whole life over a knife.. mind you i have been able to work, raise kids,attend college,and function as anyone would but with seizures every month some being more severe than others.. i dont drive because of them but have lead a pretty good life. maybe i adjusted because i had no option but to deal with seizures. my epileptologist is agressive and believes noone should be having seizures. she made me a little optimistic aboutthe future but i am not sure if surgery is the best way to deal with the seizures. would surgery take away my quality of life more> how long would ittake to get back to work. does this surgery like any pose a threat to my future like any surgery? should i go forthe surgery or should i just continue to deal with the seizures.. thanks for any insight into this tough issue. i am going in for testing next week.

Comments

Re: ?surgery,,is it worth the trama

If your seizures are out of control, medications won't help, your doctor cannot help you anymore because s/he has tried everything, then, yes, it is worth it.  I was dying from my epilepsy and though I have extreme emotional difficulties and severe migraines, I don't seizure.  I live on my own with the support of mental health supports.  If it means that you are dying, like I was, from the epilepsy, I'd say go for it.  I'd still do it over again if I had to, even knowing the outcome of the emotional turmoil.

Jesus Is My Rock, Music Is My Sanity. Sheri L. Adams

my perspective

Surgery wasn't easy at all-physically or emotionally. While I dislike being the dark cloud, you should hear about the other side to make an informed decision for yourself.

The surgery had it's immediate typical effects: weight loss (I couldn't keep anything down under my necessary pain meds) I was just under 100 lbs; my left eye got lazy (and I had to keep my right eye closed at all times to strengthen the left again (for 3 months!); headaches were *incredibly* painful-- I was in the 33%ile where nothing worked, just needed time; and the jawpain was much more intense than expected. After a few months, the pain eased considerably. But it took 5 months for it to be lost completely.

The emotional effects began kicking in about 1 month following the surgery. At first, I was very up and down within minutes. Thankfully, I had ups! I would cry out of sheer joy and appreciation of a song or movie, then I cried out of emotional pain. Up and down day after day. It can be pretty tiring. By the time I reached my 3-month post-op appts, my mood had been stuck in the lows for a month or so. Thankfully, my epileptologist witnessed it for himself. I cried 3 times during that appt! I was extremely hesitant to be on another med, and the epi wasn't too eager to put me on one (as they lower the sz threshold), so we tried to wait & see if I could overcome the lows. Unfortunately, I wasn't able to pick myself up. I was able to lower my phenobarbital down to 90 mg's, without any breakthrough sz's for a few months.

We tried an anti-depressant, no luck. Upped the med, and still no luck. In 3/07, I slipped on the ice and got a pretty good concussion. The plate in my head moved and bled a little. I then had a neurosurgeon watching me closely, to make sure I didn't need another brain surgery. My depression went even lower, and sz's came back shortly after that slip. My phenobarbital is back now up to 180 mg's.

My family life is more than a challenge. It is incredibly depressing! I have been working in therapy for almost 2 years to get better--and things are worse now than they've ever been! I have 2 daughters, Kyra and Lena, ages 5 and 3 respectively. They have been emotionally impacted by all I've been through --> guilt. My marriage of 14 years is on thin ice --> guilt and anger. From my husband's perpective, my personality was different ever since the surgery. I am not the same person, in his opinion. Pretty tough to accept. I would have absolutely nothing without my immediate family, which contributes to my suicidal thoughts. And extreme anger that I brought this all on myself! I have a BA in psychology, and I can't possibly go further with necessary degrees--my memory sucks!

So, what do I have? A psychologist, psychiatrist, epileptologist, internal medicine doctor, and an occupational therapist (who works with me on techniques to avoid memory troubles), and BIG bills to pay. We aren't wealthy. We live paycheck to paycheck like so many people. Me seeing all of these docs, and taking this and that med, certainly contributes to financial stressor in my marriage. And all of that's separate from the co-pays of surgery!

My seizures have been brought under control (knock on wood), but is it really worth it? I don't know. I frequently fight impulses to end my life, so I don't have to deal with any more. The one thing that stops me from actually killing myself is not wanting to impact my girls lives even more.

That's been my experience. I hope that I haven't scared the bejeezers out of you! I couldn't have possibly forseen these troubles when I was in your position, and it is worth thinking about. Lord knows I didn't look too deeply into the negative side of things, I was more concerned about the effectiveness of surgery and it's physical effects.

Heather

*refractory seizure surgery on left temporal lobe 03/06*

surgery, worth the trauma?

 I'm  42 yrs. old. had siezures since 10.   Partial complex, right temporal lobe is my problem. The surgery I had was done in 2 procedures, Sunday, they removed part of the skull and put in the grid pad, to try to map exactly where the activity was coming from.  Tuesday they did the right temporal resection. On Friday, they sent me home. That was 7/5/2007. I won't sugar-coat it. It was the hardest thing I've ever gone through, and I'm still not 100%.  Everyone heals differently. Doc said 3 months. Maybe internally, but for me the anxiety issues, headache and optic nerve dammage continue, although most of these seem to be improving. It's tough, but yes it'sworth it. For me, I'd rather go through the after surgery trauma , than to hurt my family, or someone elses family, because of something that  had happened while I was having a spell. Good luck, Keep your chin up

Re: ?surgery,,is it worth the trama

Hi babzy,

I had LTL 7/7/06 as of this date I am seizure free. What I can tell you I hope will help in your decision.

I am from Oklahoma and am now 52. I began having seizures at about 18 mon. I had a high fever then seizures. I tried every type of medication available. I was offered VNS device deep brain stimulation. I chose surgery. With the devices this wasn't full control or even the freedom that surgery could give me. After almost a years worth of tests I had the surgery. My surgeon removed 4cm of the LTL. My recovery was a little scarey because I lost use of my right leg and had to learn to walk again. This sounds really scarey but depending on how much of the brain they remove and the area that it is removed from everyone is different. I spent 17 days in rehab. My speech was affected. Just think of all your office files spilling onto the floor and getting them back into place! Some names are very easy others are just as if this is the first time you ever saw or heard it. Myself I still have problems with a name eventhough I know it, pulling it from the registery is a little hard. Sometimes with colors I will be looking at it know it is green think green befor I say anything but when I do it comes out blue! Just laugh it off and go on because I know what is going on.  I am driving and feeling wonderful. This summer I hope I will begin to remove some of my medications if I get a neg. EEG

Good luck

Cheryl

heather, thank you so

heather, thank you so much.it sounds like you have been through what i am expecting to go through.its odd one would think it would be the easiest choice to make but it is the toughest choice or decision to make. i still dont know what to do. considering i have acheived more than i thought i would with monthly seizures on old meds, why am i taking the chance at other risk factors that go with surgery? sometimes i thihnk its best to leave nature alone.
may i ask how noticable your incision is? will your hair be able to grow over it, or should i get into that GI Jane look.
also did the dr. allow you to talk with others that had the surgery prior to you going in for it? i wish you well and good luck thank you barbara

Surgery input

Hello Babzy. My Name is Scott and I just went thru the surgery.

I had Epilepsy from 18 months old to 4 yrs old. It went into remission until I was 17 years old then returned. Ive now had it for 20 straight years. About 1 to 2 seizures a day.

My Epitologist also sugested surgery for me. I had it done on November 12th 2007, approximately 6 weeks ago now.

To be perfectly honest with you the first 2 to 3 weeks were really rough but since then I've felt better every day.

Its baby steps theres no dought, however you really do begin to feel a tiny bit better each and every day. I used to have about 2 seizures a day. Since surgery I only had four tiny seizures (all in one night). They only lasted about 5 seconds a peice and it was exactly 1 week after surgery, so my brain was still healing from surgery plus I was so loopy from the pain medications that I forgot to take my aed's the previous day. ( oops )  My bad.

Im not sure where you live, however my neurosurgeon has performed over 750 brain surgeries, has a staff that has ben working with him for over 20 years, is extremely professional, patient oriented, and has an extremely high success rate.

His Name is Dr. Webster Pilcher. He is the head of neorosurgery at Strong Memorial Hospital in Rochester N.Y.

I hope that this is helpfull. Please feel free to contact me thru my contact information or chat with me online. They say that this surgery is a life changing experience. I have to agree with that. Good luck and take care.   Scott(:

Re: Surgery input

I am so very happy that so many people have had success with surgery.  But you do need to remember that there are a very few people that don't have success and the outcome can often be worse.  I had the elctrodes put in my brain for mapping and ended up having 2 bleeds as well as two strokes which have changed my life alot.  Of course I'm lucky enough to still have the seizures too!!!(ha, ha)  My only comment on this is just be sure you ask your doctor every question possible - things can happen that you wouldn't expect.  I have no desire to have surgery ever again in my life - after what I have gone through and then also seen while in rehab.  But I know everyone is different and if you deide to do this just please ask questions!!!!!!!!!  Mary

Re: Surgery input

hi mary, did the bleeds have anything to do with the kind of med you were on?  were the electrodes a necessary part of surgery and is that where the risk of stroke falls..i hope your well and doing better.sometimes i think i ask tooooo manny questions. if i could only remember the answers.. babzy

Re: Surgery input

Hi!  I feel bad saying all that happened to me, I would hate someone not to have surgeryy done if it will work for them.  Yes I had to have the electrodes put in so they could better locate the area for the second surgery.  I think you could have a bleed from any type of surgery.  Actually I was told that one could happen but most likely would not!!   My surgeon didn't explain the final surgery, saying let's get through this one first.  There was much more for him to explain to me later.  I wouldn't go through any surgery but then I have experienced the down side and after rehab have seen the very worst case possible.  I just don't care to be in a wheelchair all my life with alot of other problems too.  I would rather deal with the sizures than not have any and not know too much about life around me.  I truely believe that you need to do what your heart says to do.  I quess I'm being a big chicken about the whole thing.  Best of luck in your decision.

Re: Surgery input

I'm sorry that things haven't gone well for you. (((hugs)))

Heather

*refractory seizure surgery on left temporal lobe 03/06*

temporal lobe resection answers

Hi Barbara,

Sorry this response has come so late.

My incision isn't noticeable at all. They made a very thin line, in a C-shape. As soon as my staples & tape were removed (around day 10, I think?), the area was easily covered by the rest of my hair. I can now see that I won't ever have hair grow from that C line, but that's okay...because it isn't noticeable to anyone other than myself.

I never asked the doctor if I could speak with others, but I'm sure they would have encouraged it. I wish you the best of luck with obtaining seizure control and feeling good. Take care!

Heather 

*refractory seizure surgery on left temporal lobe 03/06*

My Successfully Surgery last Year

Hi babzy,

My name is Miriad and I from Ireland. I had a left temporal lobectomy on the 4th January 2007. I am now 13 months seizure free. I would also go through surgery again if I was in the exact same position. I started having seizures at 11 months old. I am  now 27 yrs old and learning to drive. I got the all clear from my Neurologist 3 weeks ago to start learning. My Medications are being reduced. I have been told that in August I will be totally taken off one of my medications Gabitril and will be kept on Trileptal.  I also have my own website if you would like to read my story.

Its www.freewebs.com/miriadkav

I was also interviewed by this website so you should find my story on here also. 

http://www.epilepsy.com/articles/ar_1180120232.html

Hope I was of some help

Take care

Raid. 

Re: ?surgery,,is it worth the trama

I had surgery done in 1990. If I had to go back I would have it done again. It has helped me a lot. Granted I was 14 at the time, so healing was no problem. The tests you will have done will rule it out if it will not be an option. I still take meds now, but they do a better job of controlling the seizures than ever before. I was out of the hospital in a week when I had it done. At one point I was off meds for over 1 year. I am hoping to reach that point again. It would be nice, but I don't know if it is possible. I guess that if I can be seizure free with the medicine, that is better too. The testing and surgery is better today than it was when I had it over 15 years ago. Talk to your family, and your doctor. Sit down and weigh the pros and cons out. Don't worry about it over the weekend. Everything will work itself out. I live on the theory that things happen for a reason. :) Best of luck to you.

Dawn

Re: ?surgery,,is it worth the trama

My experience wasn't too bad, and I'd do it again. You can read about it.....

My Surgery Experience

Kevin

Re: Re: ?surgery,,is it worth the trama

hi kevin, thanks for your indepth story.it has helped shed some lite on what to expect. i am 46. have had focal seizures since 11months of age. i've adapted to life with seizures(partial, complex) and old meds til recently.i have tried 7 drugs over the course of my life and not once have i been seizure free.i just deal with them every month
my new epileptologist is pushing all these newer drugs on me but i find they only work til my body gets immuned to them, then they fail.
iread the temporal lobe epilepsy is the hardest to control through medication but the easiest to control with surgery. Is that like saying 'your brain is damamged but there isnt enough damage for drug therapy to work'so let the knife finish the damage
have you heard of any negative effects of surgery
in your perspective do you think surgery took away any of your goals or dreams or ideas about life? good to hear you are doing well
babzy

Re: Re: Re: ?surgery,,is it worth the trama

Hi babzy:
Sounds as if you and I share very similar stories with regards to E. I had my first seizure at the age of 9 weeks and am 46 now. I had a left temporal lobectomy on July 17th of this year, and to this point I remain
seizure free (touch wood). I will admit that it took me a long time to agree to the surgery. I was a mom with two young kids when it was first proposed to me and I just wasn't ready for it then I guess. I finally agreed to meet with the doctors who did this type of surgery and was very impressed, therefore decided to go forward with the testing, and ultimately the surgery. It's great to not deal with seizures (again, touch wood), now I just have to get my memory back and I'll be thrilled.
I really don't think that surgery took away any of my goals, dreams or ideas about life, but rather gave me the opportunity to improve my life.
Hope all goes well for you. Feel free to contact me if you want any more details.
Lorraine :)

re

hi lorraine,
sorry havent been around. but the med changes are getting the best of me financially emotionally and physically.

after your surgery and recovery, did you find you were able to stay focused on readings.
have you had any trouble retaining information?
i ask as i am leaning closer to surgery finding myself bouncing around the mental benefits. will this surgery pose a threat to the remainder of life by taking away my abilities to understand?
In your exp. did you find it difficult to go back to work, i work in a hospital as a cna and i was going to school for radiology interests.. as of now i feel completely incompetent and im not sure how i will be after surgery..will i be looking more toward disability? will my brain be that bad..
thanks for any info babzy

surgery is it worth the trauma

hi lorraine,

              i guess we do sound like a broken record.    i had the ct. done and the veeg done. i am going for neuro consult next week. the results show scarring in the LTL.   few questions i hope you can answer:  when you met with drs. was it a 1-1.type of meeting or was it like a confrence room of dr.s??  what made you chose the surgery instead of the vns or was the vns not an option? did you get to choose the neuro surgeon or did you have to go with whomever was in that  particular hospital? how many opinions did you get from neuro surgeons and dr.s in general? were you awake during the surgery or did they put you out. my fear of that is my brain wont know when to wake. how much swelling was there and did you need a unit of blood? my dr. is telling me i wont need a unit of blood as the bloodloss in this proceedure is minimal>>?

        hope you remain well and free ..thanks babzy

2nd Surgery

 

I can relate to both of you very well.  I had my Right Temporal Lobectomy done at the age of 27... I recovered from it and now back at work.  Sad to say.... I am still experiencing some, so the DOCS want to do trhe grid/mapping. Where did you get your procedures done at? Any insight? I would love to talk to you about this one day if you don't mind....

David

Surgery - Is It Worth the Trauma?

Hi Babzy:

Came across your questions today, so here goes. There were several doctors in the room when I had my meeting. When I initially went to the hospital I was, quite frankly, planning to go, listen to them and then say thanks but no thanks. However, the doctor who started me on this journey told me he really thought he could help me, and that I could stop at any point along the way if I was uncomfortable with the direction it was taking. I was specifically targetted for surgery, at no time was a VNS even mentioned to me so I'm assuming they felt it wouldn't have been in my best interest to go that route. My neurosurgeon was one of only a couple in our province, however he's absolutely wonderful -- as a surgeon, as a doctor, as a person period. Absolutely nothing bad to say about him. I only pursued this originally to get my neuro off my case, but once the ball was in place I strictly went with the people at the the hospital who did my surgery -- it's a well renowned hospital in Canada and I always felt as if I was in a good place. Awake during the surgery -- you are kidding!! As someone who's a huge chicken, I certainly don't think I could have done it awake -- not so much the "pain" aspect, as the workings of the operating room itself. Just as your doctor is telling you, mine told me that blood was not an issue as there is very little blood lost during this procedure. After surgery they don't let you sleep for too long -- they wake you just to ensure that all is okay and then monitor you closely. Yes, there is pain and discomfort, but with the help of Tylenol 3 I got through it. It's now six months later for me, and everything is pretty much back to normal (touch wood). Hope this helps. If I can give you any more info, please let me know. Take care,

Lorraine :)

Re: Surgery - Is It Worth the Trauma?

hi lorraine, glad to hear all is going well, continue on and touch wood.. are you thinking of driving soon? thanks so much for answering my questions. it did shed some lite on the out come of this proceedure. not sure if and when this will be done, i havent had a wada test or neuro psych test yet. it seems like the dr. is waiting for xmas again..take care babzy

Re: Re: Re: Re: ?surgery,,is it worth the trama

I had Left Temporal Lobectomy July 5, 2005 and would do it again in a heartbeat.
Recovery isn't the easiest thing, but it was soooooo worth it.
I'm 48, have had epilepsy since the age of 2, now I have been without seizures for over 2 years now. IT IS AWESOME !!!!!!!!!! At my age I have to deal with memory issues from the surgery, but i already had memory issues due to perimenopause, so my sense of humor has already learned how to deal with that and it really isn't that much worse, and in my mind, it is truly worth it.
My memory is even improving slowly, but that is fine with me.
To be honest with you, I would do it again in a heartbeat !

Re: Re: Re: Re: Re: ?surgery,,is it worth the trama

Hi, I had left temporal lobe lobectomy on March 1st 2006, and do not regret it for one minute-no seizures for 20 months, and I am reducing medications which is good. I had epilepsy for 45 years ( since I was 6 months old), and would do it again if I had to. I too had some memory problems at first but it is improving. Recovery can be slow, but with help and the right attitude you come through all the problems in the end.
Yes if you are a suitable candidate I would reccomend surgery.

aussie thanks for your

aussie
thanks for your input. yours along with others has made the picture a tad brighter
as i come closer to surgery.part of me wants it while the other is wishing to leave well enough alone in the mist of trying different drugs as well.
would you say it takes about a year to recover fully from the surgery?
did you encounter any infection? how long did it take you to get tback to work?
wish you well babzy

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