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  #81  
Old 11-22-2010, 09:53 AM
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Hi Mike - Ireally do feel stuck between the Divil & the deep blue sea. There are days when I feel like a simple consultant's guines pig & I've just dragged him off the golf course for a consultation!
I've known my Doctor for over 20 yrs - as much as a friend & neighbour than anything else - & on that basis when he's dead against the op, it does make one think hard. He's said if I elect for the op. it will be without his advise - and when I look @ my wife & kids .......!
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  #82  
Old 11-24-2010, 03:06 PM
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Maybe they're doing a "coiling" or some other type of a radiology/surgical procedure with the cranial surgery as the "last alternative'. whatever the case, you need to ask as many questions and get the answers BEFORE the procedure--the best patient is the educatted patient.
Also-the statement regarding the minutes without oxygen--I believe they are talking about the flow fom the vessel to the particular section of brain and NOT to your entire self. Again--make sure you unserstand the entire procedure prior to signing anything.
keep in touch and Luck in your travels!!
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  #83  
Old 11-25-2010, 08:37 AM
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Thanx Connie - your'e a star! They talk of clipping the broken vessel from which the leak is coming but that, to do this, no blood has to be pumping out of that vessel (makes sense I suppose).
My GP is so against it because they only have three minutes to do it in. So, to stop the blood, my oxygen has to be stopped. Under 3 minutes is fine but the slightest bit over 3 minutes & they won't know what damage may be until I regain consciousness (or not as the case may be!).
I know thats a layman's description but after my last major "turn", dying twice in ICU & discovering that my wife had been called to bring the kids in to "say goodbye to Daddy", I tend to look at everything valuable I have in my life & think, maybe that's sufficient!

Col.
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  #84  
Old 11-25-2010, 09:17 AM
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That still doesn't answer if it is the whole brain or just that region. I think it would be possible to have an itty bitty part temporarily w/o oxygen, but too long and you can have a stroke.
Naturally, the whole brain w/o oxygen will be detrimental, but even a small part would be bad.
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  #85  
Old 11-25-2010, 10:38 AM
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There are times you really know how to cheer a fellah up, aren't there Shelley!!

Good job wer'e friends!!

Hugs
Col.
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  #86  
Old 11-25-2010, 09:41 PM
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coiling is much easier. My aunt just had it. She is back to normal. I mean she has her tired days. As with any surgery, but as long as you take care of yourself, I would recomend coiling over a lobectemy any day. I have had a craniotomy, lobectomy. Im telling you coiling is a lot less down time. And it can save your life.
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  #87  
Old 11-26-2010, 05:29 AM
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Hiya "SD" & thanx - I'll certainly look into what youv'e told me - as long as the coiling is done by a Neurologist & not a Gaenocologist!!!

Slante; Col
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  #88  
Old 11-26-2010, 09:33 PM
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LOL, I think you will be pleased. But don't feel shy about getting different doc's oppinions. She got a few. Looked at the least invasive and soforth and soforth. And I believe lol she got a very good gynecologist to to it. Joking.lol talk at ya later.
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  #89  
Old 12-01-2010, 04:53 PM
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Col-

The "clipping" or "coiling" is a quick, relatively painless procedure when compared to surgery. It's performed, usually, by a NeuroRadiologist in the Angio suite at the hospital. When I was involved with them, the patients were awake, but given meds so they wouldn't remember. As an EEG Tech, I know follow up on these patients after the procedure for any long lasting seizure affects and for possible medication decreases or stopage. Knowing what I know--that's the ticket. While 3 minutes sounds like a short time, it's NOT the length of the entire procedure, only the time of the coiling. Ask the Radiology Doc how many they've done..that should be made known to you. If I needed this done, this would be my first request!! Good Luck and keep us posted
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  #90  
Old 12-01-2010, 09:07 PM
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Yep, Yep, Yep.
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  #91  
Old 03-22-2012, 12:29 PM
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brain surgery


Hi,

I'm a newcomer to this site, but I had surgery september 2009, on the left temporal lobe removing the amedula and a sliver of the hippoccampus. After surgery when I woke up I felt much better than I felt prior to surgery. I went bak to work on march 31st and had a couple of seizures after but was seizure free until august 2011. I felt great,things were going back to normal and was getting my licence back and in august I had a seizure. September 2011 I began to have violent headaches ,scalp hurting to the touch and alot of shooting on and off. Pain level flucturates from 5-8 1/2. We are thinking about a second surgery because my surgeon had said a second might be a possibility because he wasn't able to take everything out all at once because how long I was under ans he didn't want to risk it. I have taken alll test recently in the past few months to proceed for surgery but I haven't heard anything yet. It is nice to have others who have gone through the similar things as I to talk to. Nice being a newcomer!
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  #92  
Old 03-25-2012, 06:23 PM
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Hi Believer.

I had the left side as well. Left temporal lobe, amygdala and hippocampus. Keep us up to date.

Ann
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  #93  
Old 01-16-2014, 03:53 PM
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Originally Posted by bella0809 View Post:
Hi Believer.

I had the left side as well. Left temporal lobe, amygdala and hippocampus. Keep us up to date.

Ann
me too and MTS scarring and arachnoid cyst removal.
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  #94  
Old 01-17-2014, 10:27 PM
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Please be careful when driving. I have had the surgeries, I don't drive, but it sounds like to me if you get another surgery it might help. I know it sucks not driving, . I had VNS last year. I don't think it has helped me. Brain surgery has helped. And when I got out of the hospital I lost a lot of weight to! ta da! It should be brain and weight loss surgery. lol
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  #95  
Old 09-28-2014, 07:13 PM
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So I had my first vns placed in 2010 things had been going well, the next year I was able to start classes for nursing but that brought on stress which made seizures happen so I had to quit. Things went back to normal, but I wasn't completely seizure free. So here I was at the doctor June of this year, they say the battery of the vns has died & it's time to replace it, fast. My family & I can definitely start to tell it stopped working, my seizures were getting worse, I had one where I couldn't talk at all, even for an hour after my dad says. I was just off in wonderland & I don't remember anything! So 2-3 weeks later I had the surgery to get it replaced. I've been going back to the doctors office each month to update the vns. And now here we are, seizures are still the same, not controlled, I'll have atleast 3-4 each month before I go back to the doctor. So at the appt the other day they say they don't like that my medicine or vns isn't doing anything for me. It's time to see if I'm a candidate for brain surgery...temporal lobectomy. My mom & I were just shocked. Just something we weren't expecting to hear! So I've been doing some research & watching videos on YouTube & such. And this just happened Wednesday. I'm just in the beginning of the process so I still have to go through both phases. I'm kinda nervous. Afraid of getting my hopes up. Supposed to get a call today to schedule the video eeg this month but that didn't happen. Any advice? Books to read? Etc? Sorry about the rant! I had this appt about 3 days ago. I had a seizure today which makes me nervous I won't have seizures during my video EEG. The video EEG is in two weeks.
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  #96  
Old 09-29-2014, 10:10 AM
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hi lovetypething

i've added some links going from the day i went into the unit for my video EEG, to post-surgery a few months ago. it is one hell of a journey
if your meds and vns aren't working this is a great option to look at; i'll cross my fingers for you that you have many seizures while in the hospital and are a candidate.
the one titled 'natashas story' is a fundraising vid i did last month and shows pics of me in the unit with all the wires. doesn't hurt at all.
my only advice is to be as positive as you can, not everyone gets this opportunity so we have to be thankful of the possibilities. i had 2 grand mals 18 days apart before surg, and now i'm on day 448 grand mal free.
BIG HUGS girl, i hope it works out great for you! keep us posted and if you have any questions feel free to pm me.

http://www.coping-with-epilepsy.com/...d-today-18095/

http://www.coping-with-epilepsy.com/...7-weeks-21012/

http://www.coping-with-epilepsy.com/...fe-good-22931/

http://www.coping-with-epilepsy.com/...nge-you-23250/

http://www.coping-with-epilepsy.com/...days-go-23463/

http://www.coping-with-epilepsy.com/...s-story-24310/

http://www.coping-with-epilepsy.com/...surgery-22471/
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Last edited by qtowngirl; 09-29-2014 at 10:48 AM.
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  #97  
Old 09-29-2014, 10:13 AM
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oh and ps... no need to apologize about the rant, that is the exact reason we're here. rant, scream, laugh, cry, chitchat, ask advice, oh, and rant some more

those of us with e are much stronger than we realize sometimes, so pat yourself on the back girl...
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  #98  
Old 09-29-2014, 10:46 AM
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...another good vid to watch. this is my dearest epilepsy/brain surgery/everything else in between friend, who i met here when trying to decide if i could go ahead with the surgery. she is TOUGHER than nails and meeting her proved why cwe becomes home for many of us.

http://www.coping-with-epilepsy.com/...istance-18513/
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Old 09-29-2014, 11:09 PM
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Thank you so much for sharing all of this with me! I've been reading it all so much & watching the videos today! I will definitely keep you all posted!
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