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Temporal lobe tumor surgery questions

When I was in high school, I thought I was loosing my mind. I started having reoccuring instances when I
would feel an intense deja vu and experience hallucinations, hear voices, but wouldn't remember
anything afterwards. My heart would beat in my ears, I would move my right arm strangely because it would
feel like it has fallen asleep. My face and chest would turn bright red. I would be unable to speak and
if I did - it would be gibberish. I would get nauseous and get a massive migraine after this was done. These
"attacks" were frequent and there was nothing specific that brought them on - eventually my family noticed.
I was afraid to tell them because I thought they'd think I was crazy.

After I was taken to a general doctor, she told me I was having "anxiety attacks" and sent me to a variety
of specialists. A cardiologist diagnosed me with mild mitral valve prolapse. An MRI found an arachnoid cyst
in my temporal lobe, and i was told both were harmless conditions that I could live with and were not causing
my "panic attacks". I was also sent to a psychologist for cognitive therapy, but I only lasted one visit - I
couldn't see how that could help me.

Currently, I'm 26 and I have been recently hospitalized a few times from fainting (all over the
city) and not being able to remember anything for about an hour. I was never admitted, and released each
time from Emergency being told that I was "fine" and should see a psychologist. The fourth time it happened
at work (at a meeting) and the on-lookers told me that I looked like I was having a seizure.

I was finally sent to a neurologist and was diagnosed with temporal lobe epilepsy. I found out that I was
having grand mal seizures. I also found out that the frequent "anxiety attacks" I was having over the past
decade (diagnosed as such by the many doctors I saw) were actually partial complex seizures and not anxiety
attacks at all. I also found out that the anachroid cyst was misdiagnosed as well and is actually a
slow-growing benign tumor, currently the size of a golf ball, in my temporal lobe.

After an EEG proved that the seizures were coming from my temporal lobe, I was put on Keppra and have not had
any seizures in the past month.

I now have the option of removing the tumor and seeing whether the epilleptic seizures stop or waiting a few
more years and to see if it will get worse as the tumor grows larger. Another option is to have the
surgery now and additional tests/surgery while I'm at it, where electrodes are implanted in my brain and the
exact spot where the seizures are coming from is pinpointed (or so I was told), so that can be removed
as well. I was told by more than one doctor that most likely the seizures will not go away after surgery.

I don't know what to do. This has had a HUGE impact on my life, personal and professional, in the past ten
years and now. Needless to say, I'm scared. Very few people know about this. If anyone has any
suggestions/information, I would very much appreciate them.

Has anyone had temporal lobe/tumor surgery? Where does one go from here?

Thank you!

Comments

Hi Alexis,

I came across your post - it is now 2012 and not sure where you are at with your surgery decision. I just wanted to let you know that last November my 16 year old son had surgery to remove a benign tumour in his left temporal lobe - he was having seizures and a MRI discovered the tumour. His post-surgery recovery has been excellent - he still has to be on dilantin for a year post-op but he is back to "normal" - no more seizures and feeling great. God-willing, after his 1 year postop checkup, he will get off the dilantin and carry on with his life as if this was just a small blip. My point of writing, is you need to investigate whether the removal of the tumour will bring you back to "normal" and improve your quality of life. I'm sorry to hear you have had so much confusion with all the doctors. If you have any questions for me please do not hesitate to ask.

I had a tumor removed my left temporal lobe 7 years ago.  A very rare tumor, a gangliocytoma. I was 37 years old when I had the surgery.  The left side of my face was numb which made me go to the Dr.  Luckily, I have family in the medical field and my mother-in-law personally knew the best neurosurgeon in Hershey Med Center.   I was the 2nd rarest case he had in 40 yrs.  I should have been having seizures, but I wasn't.  The only significant problem I have now is short term memory problems.  Amy   Acslanoue@aol.com

Hi Alexis,

I'm Dany, 38 years old. I underwent a Left temporal Lobectomy 2 months ago. I suffered from seizures since I was 2 years old but it was misdiagnosed till 4 years ago. Its main cause was the left Hippocampus Sclerosis. I've been on a cocktail of medications, including Keppra. However, I was drug resistant and the worst was that I developped a very severe allergic reaction (Carbamazepine) and the only and last option was the surgery.

I was terrified about the outcome, especially as I am a specialist nurse and aware about all the benefits and disadvantages of such a major surgery. In the end I said to myself that I need to fight the good fight to win it!!! The neurosurgeon and his team is the best ever... and the surgery has been such a huge victory. I am still recovered slowly but surely. So far no seizures at all!!! which is a massive freedom for me!!!

I would encourage you to go for it and you will be free like the dove!!

Wishing you good luck. You'll be in my prayers and thoughts.
Dany xx

Hi all,

My husband (Antony) was diagnosed with a benign tumor in his left temporal lobe on 6 Nov. 2008. We were told it was inoperable as it is 4cm x 6cm and is in the language area of his brain.

We have had many ups and downs with controlling his seizures - he has only had 1 grand mal seizure (after which we discovered he had a tumor), but many partial complex seizures (what we call "auras") - he had around 4 to 5 auras per day without his medication. Antony has also been diagnosed with Steven Johnson's Syndrome, which basically means that he is badly allergic to most anti-convulsant drugs as well as all asprin-based drugs. This has posed a major problem for us, as it's been very difficult to find the right drugs. He is now on Attivan (a relaxant) and Urbanol which seems to be working.

We have been monitoring his tumor for 2 years now and MRI scans tell us that it has been growing - in 2 years it has grown 1 cm all round. This news has forced us to take action and he is now going for brain surgery in 3 weeks time. We shopped around for the right neurosurgeons. We got opinions of about 5 neurologists & neurosurgeons as well as around 3 epileptologists and now have found the best in South Africa - Dr Melvill (neurosurgeon) and Dr Butler (epileptologist) in Cape Town.

I'm extremely worried about his surgery as the risks (i'm told by the doctors) are very high. Apparently Antony may have to re-learn his speech and there is a possibility that he may lose his eyesight in his right eye.

Antony is a computer programmer. He may lose his language ability. maybe i'm panicking a bit too much, but I cannot stand the thought of him not being able to do what he loves most.

Whilst looking for the right neurosurgeon, we came across some real looney's who said that Antony had a cyst - not a tumor -- even though 3 other doctors had confirmed that it was a tumor! Some of the neurosurgeons just wanted to cut him up and have him for breakfast (not really, but it seemd like it!).. We were told that his tumor was inoperable and that he had to go for radiation therapy -- turns out that radiation therapy would have damaged him more than do any good!

It's hard to say who knows more about these things - especially when all the neurosurgeons sing a different tune!

Hopefully things will turn out okay though. Good luck to you all and let's keep things updated so that we can compare circumstances!

Lauren Carthy

7 weeks ago I had a DNET removed from my left temporal lobe. Over these weeks I've been tired and struggling to get back to myself.
I did have simple partials and upto now they have stayed away. I've tried getting back to being me running and being relaxed. Recently I've been very tired when I've done stuff physically and mentally and my emotions are all over the place, but my language and speech and memory is more or less normal.
I'm just wondering if anyone else has had this and how long it took them to recover, I've been told 6-8 weeks and i'll be back to work yet on other things I've read it's 3 months. I know I can't play soccer at least until I see the surgeon in oct to get the ok.
Last night my sleep was bad and all day today I was light headed and dizzy, I'm just really confused and feel lost

I just saw your post about your son and it couldn't have come at a more perfect time! My son just had this same exact surgery just one week ago and while I have a great neurosurgeon, I am having a hard time getting any concrete answers to what his basic recovery should be like. He answers everything in general terms, ie: he will feel better in time, he will have headaches for awhile, etc. My son actually had to endure 2 surgeries in 2 days as the Dr. didn't find all of the tumor the first time around. While I expect he should have headaches, I'm wondering about his confusion that he has been having. He seems to keep asking the same questions about things, and just a general short term memory issue. Also, his left eye is somewhat "droopy" and he says it hurts. Also, vision is blurry/fuzzy in that eye. From what the Dr. said about this, it is "normal" and "temporary"...I guess it would just be nice to know from someone who has been there, what their experience is with this. Thank you in advance for any advice you can offer! --Shannon

Alexis,

I had temporal lobe surgery several years ago, although not for a tumor, so I can't comment on that angle of it. As far as the surgery itself, I've detailed the process I went through in the hope of providing some general info for others who are considering that angle of treatment:

http://www3.ns.sympatico.ca/kkehoe/epilepsy/main.html

I'm curious, is there any consideration being given to removing the tumor just because it's a tumor and might cause other problems, or is it all about how it might affect the seizures? If it all revolves around the seizures, you might want to give the meds a chance, but ultimately it's up to you.

Kevin

Thank you for your response; the link was very insiteful. I'm still in some sort of shock that there are other people that go through this - and so many!

As for the tumor, yes there is that angle of it. However, being that it's benign - the advice I got from the few doctors that I was able to visit (insurance limitations) was that I could have surgery asap or I could wait a few years - it's slow growing. Plus, there's the cost of the surgery.

So far, I am hoping for surgery, just have to find the right doctor and figure out exactly what to do and what to expect - which is why I am here.

Again, thanks!

Hi Alexis,

Here is info I read on arachnoid cysts: http://en.wikipedia.org/wiki/Arachnoid_cyst

As you will note, it suggests removal ,asap, and those cysts are known to possibly cause seizures.

I had my surgery a year ago. The areas slated for removal were the amgadalia & the hippocampus of the LTL.
However, despite having all pre-surgery tests, it wasn't until they opened me up that the physician discovered a benign, slow-growing cystic tumor which existed since before I was born.
It was also removed.
http://www.childrenshospital.org/az/Site938/mainpageS938P0.html

Given that the tumor was located in the exact area of the brain where my seizures originated, plus the fact I've had no seizures since surgery, makes it very convincing that the tumor is what caused my decades of epilepsy.

Your tumor may be benign, but it is may also not benign when it comes to causing your seizures. I'd recommend you see an epileptologist (a neurologist that specializes in E).

Some surgery info: http://www.epilepsy.com/epilepsy/surgery.html

best wishes
~sol

If you don't mind me asking, were you on medication before and/of after surgery? If yes, how long after? Thanks!

I'm not sure of the meds you are taking, but I have been taking Dilantin. It doesn't make me so sleepy that I fall asleep at work, or too tired to exercise.  I play on a ladies hockey team and love it. 

I have a 3.5 x 5 cm brain tumor, in the frontal lobe. I had a seizure, at work, and went through many tests. They diagnosed me with having a stroke to finally a brain tumor.  After the first seizure I was put on Dilantin, and never had another one for 2.5 years. Last December I was having hot flashes and weird dizzy spells, one everyday for three days. Finally I was out for lunch, I fell face first into my food. Thank God for husbands sitting close. I awake quickly and went for more tests.

They say it has not grown any larger and changing to a different med wouldn't make a differnce. But I have had a few more spells but never pass right out like I did at lunch.  Sress was probaly a huge factor. I have the option to get it taken out, Love our Alberta health care, but worry about the side affects that may come with it.

Can anyone share any after surgery affects with me?

Hi alexis,

I was on AEDs for decades before surgery and one year afterwards.
The daily medicine dose is now being slowly lowered.
I'll be completely off both AEDs in a few months.

Should you want to ask any further questions, feel free to e-mail me.

Best wishes :)
~sol

Dear Alexis-

I started having complex and simple partial seizures when I was 19- had them for about a year before I even saw a dr because I thought I was going nuts! When I eventually did go they found a 2cm benign brain tumor in my right temporal lobe. I had surgery to remove the tumor at that time- unfortunatly a little bit of the tumor was unable to be removed so I was always possibly going to need more surgery- I have gone back for an MRI once a year every year since that surgery and then had an appointment with my original neurosurgeon to check up on the tumor's status. The seizures continued as well- I've been on Keppra and Zonegran for years- I am now 25 and 3 weeks ago I bit the bullet and had a right temporal lobectomy to try to clean up the remaining tumor tissue and get rid of these damn seizures for good! So far so good but time will tell- I wouldn't have had a seizure by now anyways so it will be a few months before I will really know whether or not it was a success- but I feel perfectly normal and that's whats important to me! If ya know what I mean!

For YOU- to PREVENT you from having more than one surgery like I myself had to do- shop around for surgeons- some will only want to get your tumor and some will want to try to address your seizures at the same time- what do you want to do? It might take a few more months for the tests but if they can narrow down where your seizures are coming from- probably somewhere right around where your tumor is if not the tumor itself it might behoove you to have them do it all at once then to wait around a few more years(like I did) and then have them cut you open again. Just my advice because doing it once sucks ass and then doing it again is just like wait- now I'm having my second brain surgery? Who does that? hehe (oops me!)

feel free to ask anything you want- your situation sounds the most similar to mine than anyone on here except I've already been cut apart! ;P It's definitly not an easy decision for the RTL- I thought about having the temporal lobectomy for a year after the test results were in before I decided to have it done because I was so paranoid to have my brains cut out! But the tumor needs to be delt with- it's only adding to the problem at this point- there is more evidence though that these surgeries are more successful for people that have lesions which is super awesome for us! (because the lesions cause the seizures to begin with- ask your drs- that's where I heard it from)

Good luck and let me know if you have any questions-

Amanda

Hey Amanda,

 I have a benign brain tumor that is suspected to be congenital and it is 2 cm as well, and located in the posterior temporal lobe. The neurosurgeon doesn't feel its necessary to operate on it, but I do have epilepsy and take tegretol in order to control my seizures. I've been considering surgery, but when I brought the subject up to my neurosurgeon, he said it wasn't necessary to do it at this point.

I was wondering whether your neurologist and neurosurgeon said the same thing? That you didn't need to have it operated and advised you against it due to chances of infections, etc? Well, I'm from Ontario so under OHIP, I get to have surgery for free, and maybe they advised me against it because of the fact that surgeries cost a lot and is a burden on the health care system.

I also have other health problems, such as social anxiety disorder, generalized anxiety, and urinary retention problems. I wonder whether its because of the tumor.

 

Lena

 

To ALL:
First of all, thank you SO MUCH for writing in here!!!! The more I talk to doctors, the more confused I get - and this helps so much. Since I first wrote here, I have seen 2 neurologists, and epilleptologist, and 3 neurosurgeons (two of them supposedly the best in NYC)..
This is where my questions/complaints start. The first neurosurgeon told me I do not have a harmless arachnoid cyst in my left temporal lobe (as was first diagnosed when I was in high school) - that it's a benign tumor (3.5 x 4cm) and that anyone can plainly see that. He said it's most likely causing my seizures, and may get worse. And, that I need to have it removed, although there is no rush.
The second neurosurgeon told me that it's an epidermoid and is probably causing the seizures (although not definitely), and is very slow growing. He said I will probably need to remove it at some point in my life, or I can wait and take my chances and see if it grows, and stay on the medication meanwhile.
The third neurosurgeon (at the top hospital in New york for neurosurgery, from what I was told) told me that it IS an arachnoid cyst and harmless. When I told him I was having seizures - he said that was strange but that it shouldn't get worse. He said surgery was unnecessary, anyone could see that (they seem to love saying that) and that if the medication works - why take the risk of surgery... He spent two hours talking me out of surgery.
The epilleptologist told me he doesn't know about surgery, but he can prescribe me more pills. Yeay! The neurologists say nothing is certain, but the final decision is up to me.
What are you supposed to do??? The more specialists I see, the more opinions I get..
And Keppra is great in that I have not had any seizures since January, but I am SO TIRED all the time. The fatigue varies but I can no longer do the same things I used to, and the gym is very, very difficult. I used to go 4-5 times a week for 45 minutes of cardio, now I can barely do 15 minutes walking on a treadmill. I'm hoping you get used to that.. Still, no seizures.
Needless to say, this is all I think about. My personal life has gone to shit and since my seizure at a client's office in madison square garden, there are rumors going around the office about what's wrong with me, since I always answer "I'm fine, thanks!" Fabulous. I'm sure some of you can relate...

Good day Alexis:

I'm a retire US Vet due to the similar medical condition as yours. I had a similar tumor, located at my Left Temporal Lobe. I have been using Dilantin 300mg every day since 2000 and it was working fine, until recently that I start to have the deja Vu sensations again.

Even when the yearly MRI at the VA hospital shows no change or growth, it does worry me that after all this years Seizure/Deja Vu free, I start to have the deja vu's again.

Excuse me for asking, What was your outcome?, Did you have surgery?, all the info and help you can give it will greatly appreciated.

Hope you are better

Jorge Luis Hernandez
Jorgehrndz70@gmail.com

Hey there- sounds like these freakin surgeons should talk to eachother before they even talk to you! Are they at the same hospital or several? And this is the FIRST time I've EVER heard a surgeon just make up what's in your head without them doing lab tests to prove it! Wierdos- if it's a cyst why wouldn't they at least want to drain it if it's that big? It has to be causing some pressure on your head if ya know what I mean- stupid Drs have no freakin common sense sometimes! Surgery is scary but that sounds like a lot of mass of some sort in there and god only knows what it is- the Drs can only speculate. I'm honestly surprised they wouldn't want to do a biopsy if they are in such disagreement just to make sure that it isn't something that should come out- because even if it's a grade I benign tumor- do you really want it in there slowly growing even bigger forever? And if it's a cyst why the heck can't they pop the freakin thing! Jerks!

Ahhhh Keppra- Keppra was great when I was in college and could sleep in every other day.... but when I started working full time I had to cut it down and start taking more of my second med to compensate- I was falling asleep at work! Try lots and lots of diet pepsi- it won't kill ya if you can get over the taste ;) I think I'm pepsi's best customer ever I drink so much diet pepsi to stay awake because of the medicine!

You'll get more used the Keppra over time but you'll know if you've missed a dose- you'll feel more awake ;P

As far as work goes- I know what you mean- but just remember- everyone has some wierd thing about them- so screw em! They wouldn't be able to handle it! The only person that knows my situation at work is 65 because I figure at that age- she's seen everything else!

And now I'm done babbling- Please though- ask these damn surgeons of yours to talk to eachother and have a conference- My drs had several surgical conferences about my situation and I'm sure they can do the same for you- I can't believe the douchebags didn't offer as it is well THEIR JOB!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

HAVE A GOOD WEEKEND- take a walk- (if it's not raining up there it is here in Philly)- see a movie- get your mind off of this crap for a day- it might not disappear but it will make you feel a hell of a lot better to forget about it for a moment or two.

Later dude-
Amanda

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