Question for those who have had Surgery....

Diseases & Conditions Epilepsy
1
I have noticed not many on this board has , had surgery, But some have... Phobe... I read you recently had Surgery... I would Love to hear about it... I been researching Surgery for about a year now, and I am going in for my video eeg in about a month to see if I am a candidate.... I will almost guarantee I am, I have an angioma on my temp lobe... that  I have been aware of for 15 years now...and it needs to be taken away !!! devil ...I am a 38 year old, that is tired of being treated like a 15 year old.....
 
I also have IBS... Which is caused from the medications I have been on for 15 years.... So after having 3 children while being on Seizure medication, Very low dosages I must add, I was lucky..... my seizures were not bad most of my life... Now at my age... I feel it is time to rid this problem !!!!!
 
I am looking to hear whatever experiences others have had with Surgery.... I have learned alot on other sites... But it is always good to hear another nice story, or even an experience that is not expected....
 
My mother in law tells me " Why fix it if it isnt Broken " Well mind you ... She is 70 years old, She is not on Seizure medication for 15 years, She does not have the rest of her life to lead, and has no outlook !!
I  Have a long way to go, and I am going to enjoy my life to the fullest..... I am not going to let these seizures whip me !!!! nono   I am not 70 years old.... even if I was... I wouldnt have that additude ..... cool .
 
Thanks In advance... I can always be emailed at Dazy1989@yahoo.com... If anyone doesnt want to get too personal on this site, I know sometimes it is hard !!!!
 
 

diagnosed seizure disorder 1989
reason, angioma in L temp lobe
seeking surgery options
Keppra 750mg
Zonegran 200 mg

2
Hello, yes I did have surgery 6 years ago but not the procedure you are going to have. I am assuming that they plan to remove your angioma. I had the Anterior Temporal Lobectomy. I am a bit surprised that they are doing a VEEG when they know the angioma is there and causing your seizures. Are they thinking that you have another focus too? A VEEG is very expensive. I am really surprised that it hasn't been removed before now. Seems like they would have, especially since it is causing seizures. I didn't have surgery until I was 47 and was diagnosed at age 14. That's a long time to go through life with seizures and on meds. Having surgery has increased the Quality of my life, and I would do it again if needed provided I had the same team to do it. that is important. It is important to know the skill of the neurosurgeon and how may successful cases he has logged that were just like yours. I definitely made the right decision. I am in college again and had a final exam last night. No regrets at all re surgery, but I did have to do my research and find the right Comprehensive Epilepsy Center. The first one was not a good choice. They let me stay in Status for "a day" per my doc. For your case, you may not need a Comprehensive Center. I don't know since it is Vascular in origin. I hope this helps. Have you been to other boards with your story? There are many others out there who have had surger, but the ones whose stories I have read had the type of surgery I had. This is not a regular haunt for me. Keep us posted. Phoebe
3
Hi... Thanks for the info :-) .....
 
You seem to know your stuff !!! Yes a VEEG is very expensive !!! I had one done last year at this time, in Feb... and I had one Complex partial, and 2 absense.. So why do another right !!  I dont understand.. Well... I am with a different group of doctors... Funny how you said to pick the right doctors... Well the first choice of mine was the wrong choice !!  I went for this group now and for some reason, they want me to go to their center for the VEEG... personally I think it is a money thing... But if my insurance pays it... I wont fight... Yes we know why I have the activity... We know exactly where it is coming from.. Why waste 5 of my days... But what am I going to do ???  I have to go in for the Nueropsych test anyway... So I look at as a few days on vacation..... :-) .. No cooking... No laundry !!!
 
I was told 15 years ago to get it removed.... But I had a newborn baby at home... Was scared out of my mind, I was only 22 years old, the doctors could not give me any guarantees that it would not give me any after affects, It was too risky for me at that time..... From then on, I only had very mild  " space outs " as I always called them... I never had gran mals.... nothing extreme... I had 2 more kids.... I was OK...  But again.... My brain was brewing.... things started slowly getting worse and worse in the past couple of years.... and now I feel it is time, My kids are old enough to help themselves, no more diapers, So if I am in the hospital a couple of days, they will be OK.....
 
I feel the same as you Phobe, I need to change the quality of my life...I am only 38 years old, I have 3 very healthy, and smart children, I am so lucky, yet my mind is slowly deteriorating being on these meds, they are killing my memory, making me a moody , unhappy person.... I know there is no guarantee surgery will get me off meds, but what do I have to lose at this point... The worst they could tell me is NO.. you cant have surgery, or NO... your memory area would be affected... How much worse can my memory get... not much worse ....
 
I have been on other sites researching since last Feb... the Angioma Alliance site has alot of Surgery talk.... there are many others also.... I am just absorbing all I can....When I first thought about surgery I thought It was the wrong thing, but hearing stories like yours , really makes me think, Why have I waited so long !!! confused
Sorry for the long story.... Just wanted to thank you :-)
 
Can I ask... What State did you have the Surgery in... Or what doctors....I am going to Manhattan for my Surgery....
 
Thank you again.... You have inspired me  :-)

diagnosed seizure disorder 1989
reason, angioma in L temp lobe
seeking surgery options
Keppra 750mg
Zonegran 200 mg

4

Hi Minnie.  I've actually had two surgeries.  The first was a partial right temporal lobectomy in 2001 and when the sz's returned I had a complete right temporal lobectomy in 2003.  I had alot of swelling on the right side of my face both times and the headache afterwards rivals the pain of having your head hit with a hammer.  They do  give you morphine for the pain and steroids to reduce the swelling and it helps somewhat.  About a month after surgery I experienced alot of anxiety that was post-op related.  It's a normal occurance and it usually subsides within a month or so.  Some people go on anti-depressants but I chose not to.  I also have a blind spot in my left eye that is surgery related and it's also something that they told me to expect accept that I didn't get it until the second surgery.  For anyone that's a candidate I highly recommend surgery.  I was only in the hospital for two days for both surgeries because most of the recovery is done at home.  Brain surgery isn't what it used to be.  I also have 3 children and i've been on meds for over 15 years as well and anything that can improve your quality of life and get you off meds is a plus.  I'm still on meds but my sz's have dramatically improved since surgery.  Before my surgeries I was averaging about 15 complex partial sz's a month.  Hope this helps.  If I left anything out feel free to as me.

Christine

5
I really understand about the memory problems and decreased cognitive abilty on the meds. Trust me! The seizures and the meds can cause impairment of cognition and memory. If seizures continue over time, they can progress and the misfiing cells very basically teach the healthy cells how to misfire. That is called Kindling. Mine sure did. That process reminds me of your mouse's ability to "remember" the colors and fonts once it is back in contact with those colors etc. My memory was getting bad, and I was beginning to injure myself during seizures, the seizures were worsening. Re the second VEEG, my second facility wanted their own too. I don't blame them. If something occurred to cause a person to change facilities, why trust the test results from that place. I wouldn't want brain surgery done based on the results of the place I left. In all honesty, if I were the new Epileptologist or neurosurgeon. I would want my own tests and would not operate on anyone's brain based on some other facilities results. I have only needed the one surgery and do not anticipate needing another. I have heard that the surgery I had is expected to last only 5-10 years, but I do hope the quality, the skill, and the experience of the neurosurgeon has a bearing on that. I think it does. It was six years 9/04. My surgery was a piece of cake compared to what I had thought. While in the hospital, I was gotten out of bed 2 days after surgery, made to walk to the shower, and washed my hair. Good way to clean an incision site after surgery. Very easy time. The Neurosurgeon thought I had a vascular problem once he got in there but the Vascular Surgeon said it was more Epileptogenic tissue and not a vascular abnormality or AVM. I had my surgery at the Medical College of Georgia in Augsta, Ga and I got great care. the EMU staff have been there a long time and know their stuff too. They also like what they do. MCG needs a program to incorporate the issues of older person who had had epilepsy for a long time and who is going to have surgery. There are issues specific to that that need to be addressed. Other than not having a program like that in place, I would choose them again in a minute. Phoebe
6
Thank you both for your Support :-)
 
DBG... WoW... 2 Surgeries...3 kids also... It isnt easy is it.. But some how we do it !! It isnt easy if you have no kids or 10 !!!  I have a friend that I have been chatting with for the past year or so, from another site, she also had 2 or 3 surgeries, she gets tumors... She told me the same thing.. She got terrible headaches.. devil ... That I would imagine you cant run away from... But.. I live on Tylenol anyway.. I think I am used to everyday headaches.. I will have to deal with getting hit with a brick I guess !!!  Hey ... I just thought about it,... maybe it is the kids giving me the headaches !!!!  yeah  I told her I wanted to know all the gross details .. So I wouldnt be shocked, If I went through with this...
 
I think I am more nervous about going for the Wada test... I hate Angiograms... I had one... 15 years ago, and all I remember is the pain !!!!  That was when I found out about my problem, and I was first diagnosed, the first time the docs told me I had an AVM... they changed the diagnosis after the angiogram...
 
So ... I wonder why, others have to go on anti depressants after the surgery ?? My goal is to get off as much med as possible.... maybe just the trauma from surgery ??/  I guess this is all questions I have to ask....
I am glad to hear you are doing much better....I am scheduled to go for my video the end of March.. Cant wait to hear the results of the Wada, I am actually looking forward ... hopefully.. to getting BRAIN SURGER Y...  I must sound like a real wack !!!
 
Phobe....YES !!!  Your explaination was perfect !!! Misfires !! that is the same explaination the neurologist gave me !!!  Why he thinks I should go and see if I am a candidate !!!  The way you explained it was perfect !!!  He said the same thing... how the bad cells train the good cells ... nono ...And you know what I believe him... and you .... I went 10 years on only 200mg tegretol a day... not too many problems... and every year it got worse and worse !!!!  Are you sure you arent in the medical field... You explain things very well...For someone that doesnt have a memory you seem VERY smart to me :-)
I also agree.... I wasnt going to fight the issue about the video eeg, when I was so unhappy with the other doctors.... I am looking into Brain Surgery ... not toe surgery... If thats what the doc wants.. I gotta do it ....
Thank you again.... You were both a help.....You see... I am learning more everyday !!! :-)

diagnosed seizure disorder 1989
reason, angioma in L temp lobe
seeking surgery options
Keppra 750mg
Zonegran 200 mg

7

The Wada test wasn't painful for me.  It was just such a weird feeling really.  When they inject the barbituate into the hemisphere of the brain that they are going to operate on it literally shuts down and will induce a stroke like effect on the body.  It was such a weird feeling to look at the left side of my body and not be able to move it.  Then ironically, 2 years later, I actually suffered a real stroke that was unrelated to the surgery!  As far as the video monitoring goes I always tell people to buy a sleeping mask.  They keep the lights on 24 hrs because the camera always stays on but towards the end they may let you sleep and with the lights on it's hard.  So the second time I went in my husband bought me this eye mask and it really blocked out alot of light so that I could get a little sleep.  If I think of anything else i'll let you know.  And the part about the brick and your head pretty much sums up the pain!

Christine

8
Good to know about the Wada.... Yeah, I could imagine it is going to be wierd !!  Are you out of it, for a long time afterwards ?  I was told I would have to be in by 730 in the morning and problably wont be leaving til about 3...  I guess it takes time for the meds to wear off....
 
That is scary a stroke... are you ok now ?? was it caused by any reasons from your seizure disorder ??
 
Thanks again :-)

diagnosed seizure disorder 1989
reason, angioma in L temp lobe
seeking surgery options
Keppra 750mg
Zonegran 200 mg

9
They haven't found any reason for the stroke and they did a ton of tests including tests on my heart. I recovered in a remarkable amount of time. It took me about 6 months and I had full use of my left side. Afterwards I had continued to have mild strokes but when they put me on blood thinners I had no more problems. I continue to take the blood thinner and probably always will but i'm used to them now and at this point i'm not anemic. The bad part is that because i've had sz's since childhood, when my husband took me to the ER and they found out about my history of sz's, they immediately assumed that the stroke was a sz and the weakness on my left side was "Todd's Paralysis". Todd's Paralysis is a type of sz where you'll lose feeling in a part of the body because of the sz. My husband was with me and argued with their assessment until they did further testing and concluded that it was a stroke and not a sz. The WADA test actually moves quickly. I remember that once the barbituate went in they immediately started the testing. You feel almost like you're in a fog but you're able to see the items they are holding up to you. Afterwards they'll show you a group of items and ask you which ones they had shown you. This will show them the level at which the hemisphere of the brain that's not being operated on, is able to retain short term memory without the help of the other hemisphere that isn't functioning during the test because of the barbituate. Basically can you function with only one hemisphere. Hope this helps.
10
All info helps... Any experiences that I hear is a help... I like to hear the experiences directly from the patient..What the doc tells you and what we go through sometimes differs, this is why I want to hear it all !!  I know we all have different reactions, different experiences... but I just dont want to be under the wrong impression.... So far, I think I am on the right path !!!
Thanks again !!
Feel good :-)

diagnosed seizure disorder 1989
reason, angioma in L temp lobe
seeking surgery options
Keppra 750mg
Zonegran 200 mg

11
Hi there. I am not in the Medical field although I am in healthcare. I also have experienced all I have described here. I also can teach well although I am not a teacher as such. I have done this for others who are considering surgery too on other sites. I am happy it is helpful for you. Brain surgery can be a very frightening things unless you talk to others who have gone before to have the fear replaced by knowledge. I do have memory. My memory center is on the opposite side from my surgery, so it was not disturbed. It really is much better now that I am not on the Tegretol any more. Tegretol really did afect my memory and ablity to think. The portion of memory that is most affected by seizures and meds is Short Term memory. My long term memory was less affected. I still know all the presidents of the US I learned in the 8th grade. The WADA is interetting. There is not any stroke during a WADA typically. It basically puts each side of your brain to sleep so they can determine which side has your Speech and your Memory. The only way to say for sure where they are  is to do the WADA. I think I remember your saying that you were to have this done while doing the grid placement. Is that the case? Very interesting test. Glad to help. Please do your research on the facility so that you are fully satistied. Phoebe
12
Maybe we can get a chat going with people who have been threw surgery and their results.

As well as the regular chats we are going to try to organize for the epilepsy folks here at HW.
Take care, Tracy

 

13
I can see how experiencing all of this, could make you so educated...I know I have learned so much in the past year, or so than I ever knew in 15 years...I take a list to the doctors office with me now !!
 
TEGRETOL !!! YES !! I was on that for 10 years... and I swear it killed my brain cells !!! Like you said though ... I remember stuff from when I was working in the city, silly stuff, useless stuff, things that are so silly, yet, I cant remember what happened last month !!!  My Seizures come from my Left temp lobe which is the memory and comprehension area, which I was just told this in the past year also....
 
I was also told, for the Wada, both sides would be put to sleep...Grid placement ?? Is that mapping out ???
I know the docs want to do a MEG test... which is a very new test... which is basiclly a mapping out of your brain... is that what you mean ???
I have been trying to find out as much info as possible about this group of docs !!! Actually ..I have a friend that has a 15 year old neice, that had just had an angioma removed by this doctor in October... and they were very happy with the outcome.... The girl is back in school, everything turned out excellent.... I know that doesnt mean, it will be a guarantee for me... but it felt good to hear it....
 
I am hoping after all of this is over... I can return to work, or go to school and do something in the hospitals, or some kind of healthcare.... I enjoy working with others....I worked in the hospital, in Pre admission testing, before we moved, and I enjoyed it.... It was part time, and enough to get out, I would love to be a nurse... But the problem is I cant stomach BLOOD !!! sad ... Or anything else gorey for that matter !!!  I cant even handle chop meat !!! :-)
One step at a time ... Lets just hope ... I am a candidate first !!!!  Thank s !!!!
 
 
Tracy... Yes... It is a great help to hear others experiences... I know it took me soo many years to get info.... If I only had sites like these 15 years ago !!!!   Then again... I didnt have a computer  :-)
Feel good :-)

diagnosed seizure disorder 1989
reason, angioma in L temp lobe
seeking surgery options
Keppra 750mg
Zonegran 200 mg

14
Anybody else out there looking into surgery ???
Michelle some of this info, might be good for you :-)

diagnosed seizure disorder 1989
reason, angioma in L temp lobe
seeking surgery options
Keppra 750mg
Zonegran 200 mg

15

Minnie66-      This is my first post to this site.  I happen to be in the same boat as you.  I too have an angioma in my left temporal lobe.  I've already had a VEEG back in Sept 04 and now that the neurologist has fiddled around a little bit more with my meds I think I will be scheduled for a continuation of my workup.  I only had one documented seizure while I was being monitored, so my neurologist wants me to go back to document at least two more.  Due to the character of my seizures he feels there is a chance I may have more than one seizure focus and he doesn't want to miss an opportunity to document if I do.

Frankly, I'm getting really tired of being on medication.  Surgery was first discussed 8 years ago when I had an MRI that first showed the angioma.  Up until then CT scans showed nothing!  Rain check on the surgery at that time.   My meds were working back then, so everything was ok.  Well, like Medusa rearing her ugly head, 3 years ago I've been on a roller coaster ever since then with my seizure control.    Surgery is looking pretty good to me now.   With the side effects of these medications, not being able to drive and my cognitive problems and memory loss, I'm at my wit's end and ready to move ahead with the surgery work-up. 

I appreciate reading all the advise from those of you that have been thru the surgery.  For those of you that have been thru it - How did the scar look afterwards?  Could anyone tell you had surgery?  How long did it take to be able to drive again?

 

 

 

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

16
Good witch :-)
 
That stinks.. You have to go through all that again.. the video eeg, and all... Yeah I know, I was told last year, the docs wanted me to have 3 episodes before I left the hospital, and I happen to be so Lucky that I did !!!  I never thought I would be so happy to have an episode !!! Otherwise the docs told me... Oh you could be in their for up to 10 days.... Yeah right... Like I would ever stay in for that amount of time !!!
WoW... So you have an angioma, and they want to make sure they are coming from the same spot...HMMM interesting... I know I have read on the Angioma Alliance site, people having more than one angioma, so maybe that is what the docs want to be sure of... Have you had a recent MRI ?? The MRI's now are so much more advanced....
Too bad you werent on the east coat, we could of hung out together with wires on our head :-) .. I am going in in March.. the end of the month...
Do you mind me asking how old you are ?? I am 38... Curious, Just because, I feel if I am going for surgery, I better do it now, before I get too old !!!
Check out the Angioma Alliance site, there is so much info about others that had surgery, most of them have had brainstem though... but it still helps....
I have a friend that has a 15 year old that had an angioma removed in her L temp lobe recently , and they said you cant even tell she had surgery.... meaning her hair really was fine... I think that is one of my worst fears getting a hair cut !!!  I am told, it is not bad at all though !!!
Hope this helps !!!
Feel good :-)

diagnosed seizure disorder 1989
reason, angioma in L temp lobe
seeking surgery options
Keppra 750mg
Zonegran 200 mg

17

Minnie66-

Yes, I've had several MRIs and I only have one angioma in my L temperal lobe.  It apparently had hemorraged sometime in the past, who knows when, and now I have a ring of scar tissue around the hemorrage.  The neurologist tells me that is where my seizures are coming from.

I'm 46 and things aren't getting any better, so he's encouraged me to think about getting it done.  Luckily, my kids are age 14 and 9 and if I had the surgery they could take care of me in my recovery!  Yeah,  I'm feeling the pressure of getting too old... and the prospect of surgery, although a little scary, I'm mentally prepared to go thru with it.  I mean, I am scared  sad   but I just have to think beyond that :-) .. to what will be the end result  tongue   Right?

How are you feeling about it now?

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

18
Hi everyone...I am new to this site. I too have complex partial seizures in left temporal lobe. Just curious...when I was five I had crainiotomy to correct spinal fluid leak from tear duct surgery...I have scar from ear to ear....on cat scan mri etc they can see a clip tht was left in and resulting scar tissue has grown over. Is it possible I have angioma? Not even sure what it is? I am 36 yrs old just developed E about 9 months ago. Thanks for your help. Just curious?

TWILIGHT ....love generously...praise loudly...live fully!! (elias porter)\
CP TL Epilepsy, IBS, Obsessive Worrying/Anxiety Attacks/Migraines
 

19

SheenaGirl-

An angioma is an abnormal vascular structure in the brain.  It is something you are born with. Many people have more than one, or even several.  A lot of people have them, in fact, and never have any symptoms at all! (Lucky for them)  Because it is an abnormal "blood vessel", it can bleed into the surrounding tissue - this a hemorrhage and is usually small, but not always.  They can cause seizures, headache, other symptoms...

Wow, you've already had a big surgery at the tender age of 5.  If you had an MRI of your brain they probably would have seen an angioma.  I had numerous CT scans when I first had seizures and the angioma didn't show up because it was just small enough that they missed it every time I had a CT scan.  The MRI is very sensitive at detecting angiomas and wouldn't likely miss it.  But if there is any question of what's causing the seizures in the first place, you have to make sure you ask your neuro, " where ARE these coming from? and What is causing my seizures?"    

I went for almost 9 years not knowing I had an angioma causing my seizures after I was diagnosed.  When I finally did have an MRI, I was actually RELIEVED to find out that there was something there causing my problem!   So, the long and short of it is - never be afraid to ask lots of questions when you see the neurologist.  That's what they are there for... :-)

 

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

20
I have a question. I am reading that you are seeing a neurologist. I am not seeing Epileptologist. There is a difference in those two. Since your seizures are caused by the angioma and not an area of sclerotic tissue, maybe patients with that diagnosis do not need an Epileptolgist. The tests you are having usually has an Epileptologist involved. Again, since it is an angioma, which is vascular, maybe there is no need. I am more versed in sclerotic tissue as the focus. I was happy to read that one of you did talk to the mother of a child who was treated by the same doc as you. Was that doc the neurologist or the neurosurgeon? It would be great is you talked to the former surgical patients of the neurosurgeon who is to do yours. To me, the best way to really know the ability of anyone is to ask those who have gone before. Re my scar, you can't see it, and I never could. I did not have to have my entire head shaved. Really! The neurosurgeon said they realized they were taking much to much hair, so they modified their procedure. They shaved only the places where the incisions would be. Mine was like a question mark or three sides of a square. He cut the three sides of the square ( across where my part would be, down, and then across to the front )and pulled the skin flap with the center hair forward to the front. Next, they cut a square of skull and removed it. Once the surgery was done, they replaced the skull and skin flap and then stapled and stitched the skin. My hair covered it completely from day one! No one could ever tell I had had surgery once I was out of the hospital. There is some swelling and bruising immediately after, but that is to be expected as in any surgery. Expect a headache too. Could be a whopper. I had an artist of a neurosurgeon. Since you are having a different surgery, you may want to ask the neurosurgeon about the specifics re your type. Each doc has his/her own way of doing things. I wish I could have my years back! I didn't know any of this info until about 1996. I was diagnosed in 1965. I will continue to go forward though. They have been doing this surgery for about 30 years successfully too, but many general neuros will not inform their patients as they should even though the meds will never work and the meds ares decreasing the quality of life. I may have mentioned the woman who had hers done then at the same place I had mine done many years later. She takes no meds and has not lost consciousness since. Gonna get off my sopapbox now. lol Phoebe

Post Edited (Phoebe) : 2/19/2005 10:20:10 PM (GMT-7)