Glenda's Surgery

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goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 11/21/2005 1:12 AM (GMT -7)   
Hi Everyone,
 
It really amazes me now how many people were like me just months ago, trying to make the decision about the epilepsy surgery and thinking about what to do. 
 
Everyone's experience with surgery is different and here is what happened to me: 
 
I discussed the option of the VNS seriously with my doctor first as I was convinced that, after 24 plus years of complex partial seizures it would be the fastest and least risky way to solve my problem. I did a lot of research and decided against it.   I have been on so many combinations of meds I lost track long ago.  I'm sure most of you can relate.  My doctor said, "I've never lost anyone due to the surgery, but I've had two people die directly related to their seizures.  Let me know when you're ready to have the surgery." 
 
When I was finally ready, mentally and due to the fact that the side effects of the drugs were intolerable, I was ready to begin the surgical workup.  I had a known lesion, a cavernous angioma, in the left temporal lobe.    I went into the hospital for a vidio EEG and after the 3rd day of no meds and no sleep, I had a seizure.  My doctor came in afterwards and said, " let me show you what you look like when you have a seizure."  So I got to see the video and the EEG.  It was an eye-opener.  I wanted to sign up for the surgery right then and there. 
 
I didn't however.  I did some careful research to find the right doctor.  I contacted what I found to be the best doctor for my condition.   I was in his office 6 months later discussing the surgery. I would have an incision just 4 inches long instead of the usual sickle-shape.  He explained more surgeons were doing this improve the cosmetic appearance and helped with healing.  He would remove the entire anterior temporal lobe as well as the angioma. 
 
The day of surgery I hugged my family and the last thing I remember was seeing the operating microscopes attached to the ceiling as I entered the operating room.  The next thing I remember was waking up with a terrific headache and my family looking at me saying, "Glenda!  You're OK!"  I immediately asked, "When are we going into surgery?"  I was confused from what I remember and I don't remember much of that first day. 
 
The second day was much better.  I still had a terrific headache, but someone had removed the bandage.  My memory was still patchy.  I got a language battery to make sure I understood what was being said and that I could answer questions.  Thank goodness that went fine.  It was then that I noticed a funny defect in the upper right part of my vision.  It was way high up and seemed to move a little, like a black and white American flag.
 
The third and fourth day were progressively better.  I felt relieved I didn't forget the most important things like the people I loved.  My doctor said I would't lose my long term memory, but I wasn't going to count on it until I saw my kids and husband. 
 
I went home on the fourth day a little wobbly, but I figured I could recuperate at home better than the hospital.  My incision looked pretty good for a person with a piece of their skull removed and titanium screws to hold it back together.
 
To make a long story short, my recovery has been gradual and progressively better.  I feel stronger all the time.  I feel my short-term memory is returning to normal.  I still have headaches, sometimes severe, and fatigue, but I accept this a part of the healing process.  The thing that has made it worth it is, I HAVEN'T HAD ANY SEIZURES.  I hope they don't return.  The surgeon says I have a greater that 70% chance.  It's way better than the less than 5% with just meds.
 
So, that's my story in a nutshell.  Hope it helps those that need it,
HUGS,  Glenda :-)
complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d


Kylee
New Member


Date Joined Oct 2005
Total Posts : 4
   Posted 11/23/2005 3:55 PM (GMT -7)   
Amazing story! Im excited to start the testing May 2nd!!! I will be blessed if everything goes as smoothly as yours!!!

Rynunez
New Member


Date Joined Nov 2005
Total Posts : 8
   Posted 11/23/2005 11:26 PM (GMT -7)   
Thank you for your info. I hope you don't mind that i ask more questions. How long did it take to recover? I mind how long did it take till you were able to work (if you do)? That's another one of fears. My family relies on my income. I can't see myself not working for a long period of time. I at least know that I can work in the condition i'm in. Not real happy about it, but I can work. Well, Thanks again!! I really need to hear this stuff.

goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 11/24/2005 12:37 AM (GMT -7)   

Hi Rynunez-

It's been 5 months since my surgery.  I would say that the first month I felt really exhausted and slept half the time.  Things have gradually gotten better but I still tire easily and my balance and strength are not back to normal yet.  I am not working now, but I am hoping to return sometime next year.  Before my surgery, I didn't feel good due to the meds I'm taking, and since I'm still taking them, I still don't feel good, in addition to the recovery process.  So, as far as recovery and returning to work, it could be completely different for you if you are tolerating your meds now.  My doctor is slowly tapering my meds over at least a year.  And if no seizures - then we try to discontinue the drugs.  If my seizures return while I'm being weaned, then I stay on my meds.

My doctor has given me the OK to drive again at Christmas time.  That is the turning point for me.  The ability to drive again.  It means the beginning of getting back to a normal life again.

Hugs,  Glenda :-)

 

 

 


complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d


Rynunez
New Member


Date Joined Nov 2005
Total Posts : 8
   Posted 11/26/2005 11:59 PM (GMT -7)   
Thank you for all your information. It has really helped me. I have never been able to drive so if, with surgery, I was able to do that, It would be great!! I do have another question...Has your short term memory improved over the last 5 months or has it stayed the same as post surgery?
Once again, thank you for your help. I really appreciate you!
Ryan

goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 11/27/2005 12:05 PM (GMT -7)   

Ryan-

My short-term memory is definitely better than right after the surgery.  Here is a good story (and somewhat funny)-

After I woke up from the surgery, I was groggy for the rest of the day due to my headache and the pain meds the nurses gave me.  I don't remember much of that day.  But on the second day the surgeon came in to see me.  He asked me how I was doing and looked at my incision. 

Then I remember he asked me a series of questions, one of which was, " Do you know what this is?"  He was holding his hand in the thumbs up position.  I laughed and said, "Yes, of course.  It's your thumb.  What if I had said it was a pink elephant?"  He laughed and said, "I always ask that question. I'm glad you got it right, now we can move on to the harder questions."

In the 2-3 weeks after the surgery, my short-term memory was sometimes normal, sometimes not.  On more than one occasion, I had lost a whole morning or afternoon.  Once, it was  a Sunday morning, and I had forgotten the whole day before that.  That was frustrating.  The thing that has helped me the most is repeating to myself what I have done and setting out reminders of some kind to jog my memory.  

The last 6 weeks I feel I've made the most progress. I am almost normal.  Everyone reassures me that "oh, I forget things all the time too."  I know they're trying to be helpful.  I normally have a very Good memory and I have to tell myself it just comes with the territory.  My neuro said it normally takes 6-12 months for people to feel like themselves again - the majority just compensate for the changes until they feel normal again. 

Hope that helps!       Glenda :-)


complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d

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