Nervous about upcoming surgery

[MartyVK]

Hi there. I'm brand new to this forum and I have to say I am really impressed with all the fantastic information and support I'm finding on this site. I'm hoping that someone can help me out with a few questions. First a little bit about myself. I was diagnosed with epilepsy about 6 years ago(MTS) but until 14 months ago it never went beyond SPS so it didn't impact my ability to drive. That all changed 14 months ago when I experienced my first grand mal. Since then I've been having grand mal or complex seizures about once every 6 - 12 weeks. I was able to get into a clinic which confirmed that I'm a good candidate for surgery since all of the seizures seem to be focused out of the scar tissue in my right temporal lobe. I have a tentative date set for April. Now some questions. Can someone provide me with some information and/or sites as to what to expect after the surgery. Specifically with regards to depression. My SP seizures are very cyclical and they always seem to be accompanied by depression. The fact that the surgery could actually make this worse really concerns me. Second, my surgeon tells me that they are removing about 10 cm from my right temporal lobe I didn't think much about this at the time but doesn't this seem like a lot? Finally, I unfortunately fall into the small percentage of people who are right handed but still seen to have language dominance on the right side. Because of this they are going to keep me awake for most of the surgery to make sure they navigate safely to the scar. My surgeon tells me there is no concern that language exists in the scar tissue that is being removed. It is more of an issue of safely navigating to the point itself. How concerned should I be? Are there other questions I should be asking?

onder:

Thanks.

 

[hawke86]

I wouldn't do it cause it could end up being a mistake. I would look for other options. I had similar surgery to my left front temporal lobe. It was the biggest mistake that I ever made. I'm one of the few people that has seizures on both sides of the brain. I would ask your doctor about other options to take. The second surgery was one of the best ones that I had. During the second surgery I had the Vagus Nerve Stimulator put in. About two weeks ago I had my second put in. The V.N.S surgery was the best decision that I made. Talk it over with your family and loved ones. I hope you make the right decision.

 

[MartyVK]

Thanks for the input but I made the decision awhile ago. My life is at a point where the quality just isn't there. I'm a husband and a father and in my current condition I don't feel that I'm doing a very good job at either. I'm a numbers person so I'm going with the stats which give me a 60 - 90 chance of cure. I went for my surgery last Wednesday March 25th and it wait really well. Because I showed some languague dominance in my right lobe they kept me awake for a big chunk of the surgery so that the could continually probe as they worked their way to the scar tissue that needed to be removed. I've got to tell you that that is an experience I will never foget. No pain and really no fear. Just a very different feeling. Anyway I'm home now and taking it easy as my brain recovers. I know it is too soon too tell but so far I'm feeling really good. I have some swelling and and some pretty bad headaches but so far I've had zero activity in either aura's or seizures. Please keep me in your prayers. I'm hoping that I will be one of the many cured by this procedure and that by next fall I'll have my lisences and freedom back.

 

[epileric]

I'm a numbers person so I'm going with the stats which give me a 60 - 90 chance of cure.

I would question those numbers. I've heard that quite often surgery helps but after a year or 2 the seizures are back to what they were beforehand so I'd like to know how long was the follow-up in the study that got those statistics.

Hang around & see what others have to say & if you got those numbers from your doctor look around for others. Check out this thread that deals with surgery.
http://www.coping-with-epilepsy.com/forums/f41/lets-talk-about-brain-surgery-3989/

My neuros were pretty aggressive about trying to get me to go for surgery so I'm very suspicious since it's like a tattoo, it can't be undone once it's done. Good luck though whatever you do.

 

[MartyVK]

My epilepsy is one of the rare forms of inherited. My father has the same scar tissue on his right temporal lobe but it has never caused him to have a seizure. My sister also inherited this same scar tissue and she did have seizures. She had the same operation 17 years ago and has been seizure free ever since. I'm hoping for the same success.

 

[epileric]

Wow

It sounds from what you're telling me that you really have nothing to be nervous about. With me they had no clue what was causing the seizures but wanted to either separate the right & left lobes or just cut a part out (I forget which) & hope it works.

Your docs seem to know exactly what they're cutting at & why, that alone gives me more confidence in your surgeon than mine. Hopefully someone that's had surgery will reply to this thread.

 

[flinnigan]

Great news. I'm one of those people too who knows why and where my seizures are coming from. My father and Grandfather both had epilepsy and died from seizures. My Grandfather at least made it to 70, but my dad was not so fortunate he passed at 50. My youngest child would only be 15 when I turn 50. Medication is not working and I'm contemplating my next move. I too feel this is no quality of life, I stink as a parent and wife right now. I've had the Video EEG and WADA and should be hearing the results from the surgical board soon. I'm going to try a holistic approach next as it would be some time before they would do surgery anyway so why not try it all. I'll pray for your continued health. God Bless. :e:

 

[MartyVK]

Flinnigan, my thoughts and my praryers our with you. I can truly relate to your struggle. I'm still suffering a bit of swelling and headaches but it has now been almost 1 week since the surgery and I continue to have zero indications of upcoming aura's or seizures. Despites some of the sad stories that I've seen on the board I'm still hoping and praying for the best. God Bless.

 

[Cint]

Brain surgery

I had a left temporal lobectomy and was seizure free for 14 months. Before the surgery, I was experiencing CP seizures, after surgery they came back as CP and secondary TC. I tried 11 medications, to no avail, and finally had the VNS, which was a godsend for me. I feel like Hawke, I wish I had never had my head cut open. I came out worse then when I went in!!!
I still have headaches, too and suffer from depression ever since the surgery. But I hear that there is a better success rate for surgery on the right side than the left side.

Just thought I'd leave my :twocents:!

 

[matchu]

I am sorry to hear of your troubles. Sounds extremely difficult to deal with. I am not sure I am ready to part with any of my body just yet. God bless you!

 

[Ruth]

Hi Marty, welcome to our forum.

My seizures are inherited as well. My father, sister and uncle had it.

None of us had surgery. It will probably work out for you. I know one person who had an operation on the brain and has been seizure free for over 2 years. He leads a normal life. He had a good surgeon.

Any operation of any kind or procedure makes me nervous. I think that is normal. You will be all right.

 

[ashmstng]

I had surgery in May of last year. It was on my left Temperol Lobe. I had partial seizures. So far I have been seizure free. Everyone is different and may have a different outcome. But it is up to you what to do. As I did is talk it through with my doctor and to the surgeron about every question I can think of. Like the outcome, the percentage of being seizure free. Since I havent had a seizure I feel great and looking forward to getting my license and going to school to help others with the same condition as us. I hope you the best on what you decide to do. Take care.

 

[Ruth]

I know someone from another support group who is now over 2 years seizure free from his surgery.

 

[MartyVK]

It has been 11 days now since my surgery and still no signs of any type of seizure activity so I continue to remain optimisitic. The one thing that is starting to trouble me a little bit is constant headaches. So far they have been pretty easy to control by taking a couple of tylenol 3 every 5 - 7 hours. Just wondering how long I should expect the headaches to continue and at what point I should bring it up with my doctor. I currently don't have a follow up booked with the surgeon until April 30th. If I' still dependent on the tylenol 3 by the end of next week I think I'm going to give him a call to see if this is normal or not

 

[webmnky]

Hi there, I am facing the same upcoming surgery and I am also very nervous! This will be the second time facing such surgery. During the last surgery I woke up with depth electrodes for an EEG and they in turn provoked a seizure that almost killed me! My seizure disorder is pretty bad so they state this is my only option. I have talked to a few patients who had the surgery and they all stated my personality is different! this is causing me more stress and causing me more seizures. I do not know what to do follow my gut instinct or listen to the doctors? If anyone has any advice please give it me. We are in the same boat so I will be thinking of you.

 

[MartyVK]

I am 2 days away from the 1 year anniversary of my surgery date. My family took me out last week to celebrate 1 year of seizure freedom. :woot: For me the surgery has so far been a success but I feel that my doctors really weren't as open with me as they should have been. I was told that recovery would be 3 - 6 months however based on what I've seen from other posts in this forum and my own experience I know that it really takes a lot longer then that. For me personally I've noticed a marked improvement in my memory in just the last month to the point where I can say that it is as good and maybe even better then it was before the surgery. I still battle bouts of depression but they too are occuring less frequently as time goes by. I continue to be optimistic for the future and I'm really looking forward to getting my license back. That being said my surgery was straight forward with a very clearly defined single focal point which happened to be in a location where the chances of long term damage due to surgery were low. Webmky, my advice to you is to ask lots of questions so that you can make as informed a decison as possible. Understand all of the risks and weigh them against the potential benefit that you could get from the surgery. If after this examination your gut is still saying no I would go with your gut.

 

[alivenwell]

Congratulations on your anniversary Marty! I hope the next anniversary goes just as smoothly. Everybody's different, so I suppose that recovery time is a guesstimate.

 

[Elaine H]

Hi Webmnky

Welcome to CWE. Please, if there is anything I can do to reassure you as you head towards your surgery, then I would be only too glad to help. Firstly,what sort of surgery are you having, which part of the brain is being operated on, and what type of seizures were you having?
I had a Temporal Lesionectomy on the right Temporal Lobe in Sept 2000 and in July 2008 following Hippocampal Sclerosis I had my Hippocampus removed. It is easy for anyone to say, oh don't worry, everything will be ok, of course you will be frightened and worried about what will happen, will your seizures stop, will there be side effects from the surgery, all I can say is, that you will be in excellent highly skilled hands, and once you are asleep, they will do all they can to help you, and, with the amazing pain management these days, you will be a bit sore and swollen, but no more than a heavyweight boxer at the end of a fight!! Just let them look after you and tend to your every need, hopefully, as with me after my second op, they won't ask which part of your body your stitches are in when they come to take them out!! I rang for the appointment, told her I'd had BRAIN surgery, needed to come and have my stitches out, and she asked me "whereabouts on the body are your stitches Miss Howell?" Where the Hell did she think they were, my big toe??!!
Anyway keep in touch with us on CWE won't you, the guys on here were fantastic with me during and after my second surgery, and will be with you, let us know how you are doing, and please try not to worry too much. Please let me know what sort of surgery you are having, and if you want to talk, please let me know, my computer is on most of the time ok? Will be thinking of you.

Best Wishes
Lainey x

 

[bella0809]

I'm seizure free and now med free

I had the surgery in 2005 and have been seizure free since then. As of March 1, 2010 I am now medication-free as well. I chose to have surgery because of the declining memory and I feel that the meds were much more responsible than the seizures.

Webmnky, where are you looking to have surgery? I had it at NYU and think it's the best place to go. The surgery is risky, but I had enough of the furstration of living with E and felt it was worth the risk. I am grateful that I've remained seizure-free since then.

Recovery has not stopped since I had the surgery. I think there are stages. The 3 months is when you can be back in a routine. 1 year seems to be an estimate of when you've reached the "max" recovery cognitively, however at that point, I started reducing meds, went back to school and have definitely become sharper. This month I'm off meds and I definitely find it easier to read.

If you are thinking about surgery, you have to do many tests to qualify, so take the tests. You don't have to get surgery if you do qualify, but why spend the time thinking about it if it might not be an option.