Do I really need surgery or should I put up with meds?

[qtowngirl]

That is what happened to me. I was/still am P/O'd about the outcome of my left temporal lobectomy. As I said before, my seizures came back with vengeance 14 months AFTER my lobectomy. I take the max dosage of Keppra now and a lower dosage of Topomax plus have the VNS to control my seizures............. :bigmouth: Plus meds for the depression and other issues....... memory loss, side effects of meds, diabetes from a medication for depression, the list goes on and on and on..........

Meds for depression... then diabetes from a medication for the depression? WOW. I am depressed and cry on a fairly regular basis for my issues... but how the hell do you cope with all that? Shaking my head, I can't imagine. I am so scared to have surgery, and have so many pros/cons to weigh, but holy - my dear do you ever carry a big load for one person. Kudos and (((HUGS))) today!!

 

[Cint]

For a long time, I did cry ever day and then when the psych prescribed the med that caused Type 1 diabetes, I jsut about went overboard with my depression!!!!! That was it, I told myself, enough is enough. But then I thought of my two wonderful children and what they had already witnessed with their mother and thought "OMG! How could I even think about suicide when I have two precious beings on this earth?!" They are basically what has kept me going all these years. There were times when they were young they witnessed bad seizures and they thought I was going to die because of the seizure. Now they are grown, my daughter is married, my son is in law school. :woot:

 

[CQ:)]

I am so scared to have surgery, and have so many pros/cons to weigh

Hi Qtown,

The idea of having brain surgery is very scary & I'm sure you will agree that is why it's so good to talk to other people who have already had the surgery.

When my local neurologist suggested to me to think about the surgery & referred me to an epitiologist I had a 7 month wait before I could even see the epitiologist. While waiting to see the epitiologist I did as much research as I could which included information on the epitiologist, the hospital where I was to have my surgery & anything I could find on brain surgery.
I also spoke to people both in person & on forums who had the surgery, some people had success with their surgery but some still had seizures which were either the same as before they had the surgery or were just auras & not as often.

I also go on an Australian epilepsy forum & have met a couple of people who have also had the surgery. A couple of the people had their surgery after me but 1 lady had the surgery 12 months before me at the same hospital that I went through so she was extremely helpful & gave me some fantastic tips.
I have became good friends with one lady who had her Video EEG monitoring the same time as me but she went through a different hospital & didn't have her surgery until 4 months after me. This lady lives not to far away from where the hospital I go to is & she came to visit me in hospital after I had my surgery. When she 1st saw me both my eyes were swollen from the swelling & I did look like I'd been in a boxing match but she said she was glad to see how I was as it made it easier for her & she knew what to expect.

The hospital where I had my surgery gives patients who have been accepted for surgery to speak to other patients who have had surgery to hear their stories & how their recovery went. I have already told my neuropsych that if she ever has any patient that she would like me to talk to she just needs to et me know .

 

[qtowngirl]

CQ, sounds pretty similar for the stage I'm at. Took 5.5 months to get in to the epileptologist, will continue to go for follow-ups for meds, etc., and during those appts. she decides how soon I should be going into the unit based on seizure control; the waiting list however is pretty long, could be a year or two. In the meantime, yep, research research research, which I have been doing since 2009 (after another grand mal) when we found out my PTSD was actually simple partials.
The problem for me is there is already a cyst on the left middle cranial and they also figure possible mesial sclerosis at the left hippocampal which is likely caused by the partials so what is really going on here? IT SUCKS because I hope it's not the sclerosis, but then again I hope not the cyst because from my understanding the reocurrence after removal can be fairly high. I've been told for years that the lesion is incidental, but you know how opinions change from one neuro to the next. The epileptologist doesn't agree at all with the last two and wants to check it all out.
So, amid the research and appointments I'm worrying and crying about having to make the decision once it comes. Scared to bloody death.

 

[ranet_jeno]

Wow I didnt know that the process could be so long... fortunately I live in Boston which is medically resourceful. I was referred by my neurologist to a reputable epileptologist at Beth Israel Deaconess Medical Center in late December and have since done an MRI, a week long VEEG and a PET scan most recently. I have already met with my Epileptologist twice, once for the initial consultation, second to go over the VEEG results. She wants to continue with the testing because she thinks I am a strong candidate.

I have taken all of your thoughts strongly into consideration. I can understand why some of you may feel offended because my condition is relatively benign compared to others in this forum, but I want to weigh my options and make the decision when everything is on the table and its a yay or nay

Here is the thing. I obviously want to be seizure free. HOWEVER my attitude is this: If I go through with the surgery, but continue to have seizures and must stay on my current dosage of Lamictal, than I will be OK WITH THAT!!!!

atleast I gave it a shot! I dont mean to sound casual about it but thats the way I feel.

MY ONLY FEAR WITH SURGERY IS LOSS OF COGNITIVE ABILITY. By this I mean a decrease in mental functioning. I have a highly analytical job in finance and could not function without being able to analyze!

This is excluding significant memory loss or speech impairment. I would be able to handle these side effects if worse comes to worse.

I currently do not have the best memory in the world, but that is something I have had to live with and adapt to and could continue to do so if worse came to worse.

I feel like my memory has been getting worse on its own anyways, and have read that surgery can actually have positive effects on this. It is not always the case, but nice to know..

SO with all things considered above, do you still think it is a slap in the face that I am considering this?

 

[epileric]

I feel like my memory has been getting worse on its own anyways, and have read that surgery can actually have positive effects on this.

If the literature you're reading tells you that chopping off a part of your brain can have a positive effect on your memory then I'd question the literature you're reading.

Again ask for specific statistics & have them define "positive effect".

 

[Cint]

It depends on where you're considering having your brain sliced. If you're considering the hippocampus, then yes, the cognitive outcome could be much worse.

http://en.wikipedia.org/wiki/Spatial_memory#Hippocampus
The hippocampus provides animals with a spatial map of their environment.[22] It stores information regarding non-egocentric space (egocentric means in reference to one's body position in space) and therefore supports viewpoint independence in spatial memory.[23] This means that it allows for viewpoint manipulation from memory. It is however, important for long-term spatial memory of allocentric space (reference to external cues in space).[24] Maintenance and retrieval of memories are thus relational or context dependent.[25] The hippocampus makes use of reference and working memory and has the important role of processing information about spatial locations.[26]

 

[CQ:)]

Nick,

It depends on where the damage is in your brain as to whether your memory will differ after surgery as the damage may well be near the part that affects your memory. Even if you do have the surgery there is no saying that your memory will be any better or any worse, I don't think you'd even know how your memory will be affected until after the surgery.

As part of my pre surgery testing I had to have an assessment with a neuropsycholgist which took a couple of hours. During this assessment they went through my history of epilepsy & how I cope living with epilepsy (they needed to make sure that I was mentally able to cope with having the surgery as it is such a major operation). I also had to do memory tests & concentration tests.

When I was 3 months after my surgery I had to have more testing done which including another MRI, follow up appt with the surgeon, another memory test with the neuropsych & an eye test (which I had also had prior to the surgery).
I used to think my memory was bad but when I had my memory test at the 3 month stage I found out my memory was in the normal range.

I think the memory problems I used to have were more to the fact that at one time I was on a lot of medication - 3 Anti Epilepsy meds, all with high dosages. I am now only on 2 medications but I still do forget things every now & again but I don't think anyone has a perfect memory.

 

[CQ:)]

Nick,

I don't want to come across as someone who is judging you because you want to have surgery. None of us can tell you to have the surgery or not to have the surgery because in the end it is your decision. I just want to make sure you do realise that if you do choose to have brain surgery there is NO going back after the surgery.

I'm sure you realise that brain surgery is a very major operation & anyone considering having brain surgery shouldn't just jump into it. As we have already said there are risks involved with the surgery & it doesn't work for everyone.

So please if you do decide to go through with the surgery MAKE SURE you do as much research as you can into brain surgery. Also look at the negative points involved with brain surgery & not just the positive.

I don't regret that I did choose to have the surgery because I am one of the lucky ones who did have a good recovery & it has helped with my seizures.

 

[seizuregirl]

I had brain surgery done, a part of my hippo campus and right front temporal lobe were removed, and yes, I do regret having it done.

My short term memory is basically gone.

I can't even explain what I've been through since the surgery, depression, stress, frustration, and loneliness.

And if I could go back in time to tell myself NOT to have the surgery done, show myself the neuropsychologist's review of my lack of memory, tell/show myself that I'm STILL having my "normal" seizures and now Grand-Mals too, and had to fight with Social Security, I would in a heartbeat.

 

[CQ:)]

I had brain surgery done, a part of my hippo campus and right front temporal lobe were removed, and yes, I do regret having it done.

My short term memory is basically gone.

I can't even explain what I've been through since the surgery, depression, stress, frustration, and loneliness.

And if I could go back in time to tell myself NOT to have the surgery done, show myself the neuropsychologist's review of my lack of memory, and the fight I had with Social Security, I would in a heartbeat.

Hi Seizure girl,

I'm sorry to see the surgery didn't work for you .

May I ask how long ago you had it done?

 

[seizuregirl]

It was done last January, but feels like it was done, no joke honest lol, last month.

 

[CQ:)]

It isn't unusual to still have seizures not long after you have surgery as your brain is still settling down.

Depression is also a known side effect from the surgery which is why a neuropsych is great. I was introduced to my neuropsych when I had my Video EEG monitoring in Nov 2010 & she has been fantastic. Although I don't get as stressed as I used to, if I have any problems or any questions (some of them are stupid questions) I can just email my neuropsych & she'll help me out.

 

[ranet_jeno]

hmmm

This whole surgery thing is starting to sound terrible! I read all of these success stories on the web and talking to my epileptologist before coming to this forum and finding out it is a nightmare!

But you know what.... No offense to anyone.... I think there might be a higher population of disgruntled people on these forums that did not have the highest success rates.. and are here (and rightfully so) to gain strength and support from others in the same situation. So the answers that someone like me will receive about the merits of brain surgery will be biased. I think it is good to hear from the percentage of people that did not have things go their way... it makes the decision that much more difficult and should because it is such a major one to make. especially difficult to make for someone like me whose condition is borderline bad enough to go through with it all... I am not sure the auras and medication side effects alone are enough to go through with something that could change me for the worse... however, my doctors seem to think things will be fine so I am sort of torn!!!

 

[epileric]

however, my doctors seem to think things will be fine so I am sort of torn!!!

First of all, I'm sure many doctors say things will be fine. My neurologist tried to convince me to have an operation & have a part of my brain cut off when they didn't even know what caused the seizures or where they originated yet he was rather insistent.

Secondly, if the doctors are thinking things will be fine it is partially based on what you told them. Have you not been exaggerating things so that they'd give you this operation?

 

[ranet_jeno]

First of all, I'm sure many doctors say things will be fine. My neurologist tried to convince me to have an operation & have a part of my brain cut off when they didn't even know what caused the seizures or where they originated yet he was rather insistent.

Secondly, if the doctors are thinking things will be fine it is partially based on what you told them. Have you not been exaggerating things so that they'd give you this operation?

I have exaggerated things a little bit to get my foot in the door and explore my options with surgery. But I am going to let the test results speak for themselves when the time comes. At that point the fibs wont matter. Its either I am perfect for surgery or I am not. And if I am perfect for surgery, and there is a very small risk of complication, than I would HAVE to say yes!!! no more auras WITH the meds and grand mals-when I miss a dose? no more fear of seizures? and no more meds? HELL YES I would say yes!

I do not think I would go through with it unless they have a very good idea of where they are coming from. That is absolutely horrible that your doctor was pushy... I am going to keep my doctors in check and ask the tough questions... the ones where I hear the negative aspects instead of the positive.

 

[qtowngirl]

First of all, I'm sure many doctors say things will be fine. My neurologist tried to convince me to have an operation & have a part of my brain cut off when they didn't even know what caused the seizures or where they originated yet he was rather insistent.

Secondly, if the doctors are thinking things will be fine it is partially based on what you told them. Have you not been exaggerating things so that they'd give you this operation?

EXACTLY. They want to help you feel positive about the decision you're making as it is a chance for a better life... only because they believe you have it pretty rough now. If you actually told the truth, the real, real truth about it not being so bad there is no doubt you would get a different opinion.
And they 'seem to think things will be fine.' ??? Nick pls realize doctors can only go by numbers and be hopeful, same as the rest of us. You're basically diving over a cliff and taking the biggest risk in your life here, and will either land in a pile of rose petals or a pile of thorns... and NO ONE knows ahead of time which that will be. The brain makes up its own mind (lol thank you) what happens; does now and will after surgery too.

 

[epileric]

I have exaggerated things a little bit to get my foot in the door and explore my options with surgery. But I am going to let the test results speak for themselves when the time comes. At that point the fibs wont matter.

Actually that's not true. A tests results can mean different things depending on what the patient has said so remember that the more you exaggerate the more likely they are to do something wrong.

 

[qtowngirl]

Nick we've already said though that most people pro-surgery have to stay on the meds, sometimes even two of them (CQ), and a lot of the time for life.
Like Epileric said really consider what you're reading and where you're getting it from.

 

[ranet_jeno]

Actually that's not true. A tests results can mean different things depending on what the patient has said so remember that the more you exaggerate the more likely they are to do something wrong.

And by exaggeration I do not mean I have been making the seizures sound worse than they are!!!

I have been on over 4 AEDs that did not work. I had complex partials all the TIME. NOW I am on lamictal and it has been pretty good. If I came off the meds right now I would have a string of grand mals neverending.

So I am lying about the severity of the seizures or where they are coming from... just how the drug lamictal is working....