Seizure Tissue

[Afriend]

Hello All,

I'm new and I did post in the Foyer. Then I read the Kitchen is most active. Since my friend is running out of time to decide on surgery, I'm going to ask this here too. I read somewhere that sometimes once the surgeon has the brain exposed that he has to use his skill and knowledge to identify the brain tissue that causes the seizures. Based on all the tests, he may know the seizures come from the temporal lobe. I then wonder, which part of the temporal lobe? I think those lobes are big. I think if the entire temporal lobe is removed there will be some definite unwanted side effects.

So is it true that tissue that causes seizures looks different to the naked eye? If so, this is news to me.

I know brain surgery is always a trade off. Or am I wrong? I don't think my friend realized this until yesterday. She thought they could stop her seizures without her losing any functions. That's not true, is it?

I'm sure the surgeon wants to know what tissue he's removing based on tests. But how common is it that he has to use his judgement?

I'll have more questions in a few days. Btw, my friend is 61. She takes Tegretol 200 mg 4 times a day. She has taken it about 30 years. We no longer know if it helps or if she's just physically dependent on it.

I have another question. My friend got a new neurologist 6 months ago. This Doc is into trying to help people with long term intractable epilepsy, especially women. The 1st test was a MRI and they saw something called a Gliosis. I tried to research that word and I didn't find information linking it directly to epilepsy. I even read most people over 60 probably have at least 1 gliosis. Nevertheless, it was a gliosis that started my friend on this road to possible brain surgery.
In the past she was always told she wasn't a surgical candidate because either the seizures originated in multi points of the brain and/or they couldn't pin down where the seizures started. Does anyone know if a gliosis is epilepsy related?

 

[Zolt]

Hello to Afriend,

I would truly believe that there is something different for them to take out that is not part of the brain, or smooth a leason of some sort that may cause seizures.

I've had brain surgery for a baseball size tumor taken out and the lady that did the surgery said that it was a different color than the rest of the brain. But unfortunately it was so big, and there were areas where the tumor didn't want to come out or was more difficult to get out. This left me with seizures. Out of one frying pan and into another. At least the heat isn't on as much in this pan.

My tumor was based on the left parietal lobe, which is on the top of the head area.

I'm suspecting they did an mri on your friend, so that is probably where they are basing their decision off of. I would definitely ask the doc who said surgery was an option why and how he came to that conclusion. You can also get a copy of the mri from the hospital. Fun stuff to look at, i think, since i've had at least 20 mri done in the last 8 yrs. I like to look at the mri before the doc even tells me her analysis of it.

iano: op:

 

[Tez_20]

Hello Afriend,

Zolt is right concerning lesions of the brain.
I asked for brain surgery in 97 but being as my right temporal lobe is brain damaged the surgeon refused saying it was a 50/50% operation and while he could speak with me, he wouldn't take the risk...so instead i'm highly drugged with meds to help the left side.

I'll add some info below on brain operations for you to view further for you friend plus it's what operation they will do if you friend agrees

 

[Tez_20]

Surgery for Seizures & Epilepsy

Many people consider surgery – especially brain surgery – as the last alternative if all other treatment methods are not effective. In reality, surgery should be among the first options considered if early trials with anticonvulsant medications are ineffective.

If seizures occur in one area of the brain, and that area can be removed easily and without causing other problems, surgery should be considered. If epilepsy is caused by a tumor, cyst, lesion or other growth that won’t respond well to medication, your physician can help patients decide if surgery is an appropriate option. Take a look at the following four questions:

Is the child or adult having seizures?
Are these seizures often and difficult to control?
Are the seizures beginning in one location?
Can the source of the seizures be easily removed?
If you answer yes to these four questions, you should obtain more information. It is important to note that except in the rare instance of a rapidly growing brain tumor, epilepsy surgery is not usually an emergency – it should only be done after careful consideration of the risks and benefits of the surgery.

Types of surgery for epilepsy

Focal resection
Hemispherectomy
Corpus Colostomy

http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/epilepsy/treatment/surgery/

 

[Afriend]

Thanks for responding Zolt and Tez. We don't know yet what kind of surgery it would be yet, but I'm guessing a Focal resection of some sort. I have to hand it to you Zolt if you can read MRI's. I've only seen 2 or 3 and other than what the Doc pointed out, I didn't know what I was looking at.

In the past I was able to help this friend more than now. We no longer live nearby, and I no longer have a car. But I think you all helped me figure one thing out. The gliosis on the 1st MRI gave the hospital the financial justification to proceed with more tests. One worry is we're in an area where 2 major University Medical centers are competing with epilepsy surgery. This hospital seems to be using the older methods. The other is using a new form or surgical treatment. Until my friend joined a new HMO and was sent to a neurologist, she was a case they gave up on.

But besides that, I guess we have better machines than even 20 years ago. In the past, they could never find anything on any images they did to give them a reason to look deeper. This year they did. But I worry about side effects from the surgery. Her seizures are not in control. Stress can cause her to have almost 1 a day. But in low stress she has 2 or 3 a month. She does have a poor memory, but surgery isn't going to help and may make it worse. She never has headaches, and the few posts I read so far indicate headaches after surgery is common.

Thanks again.

 

[Belinda5000]

I had a right temporal lobectomy in 1982 and it ended up my seizures were on both sides.
I got the VNS in 2001 and it stopped after awhile for controlling my seizures.
I''ve been on all the meds for my types of seizure between21-23.I have refractory epilepsy and have had it since I was diagnosed 50 years ago.

 

[Cint]

Surgery for Seizures & Epilepsy

Many people consider surgery – especially brain surgery – as the last alternative if all other treatment methods are not effective. In reality, surgery should be among the first options considered if early trials with anticonvulsant medications are ineffective.

If seizures occur in one area of the brain, and that area can be removed easily and without causing other problems, surgery should be considered. If epilepsy is caused by a tumor, cyst, lesion or other growth that won’t respond well to medication, your physician can help patients decide if surgery is an appropriate option. Take a look at the following four questions:

Is the child or adult having seizures?
Are these seizures often and difficult to control?
Are the seizures beginning in one location?
Can the source of the seizures be easily removed?
If you answer yes to these four questions, you should obtain more information. It is important to note that except in the rare instance of a rapidly growing brain tumor, epilepsy surgery is not usually an emergency – it should only be done after careful consideration of the risks and benefits of the surgery.

Types of surgery for epilepsy

Focal resection
Hemispherectomy
Corpus Colostomy

http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/epilepsy/treatment/surgery/

According to the American Epilepsy Foundation, here are the types of surgery for E:

http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/types-surgeries

What are the main types of epilepsy surgery?

The first, and by far the most common, is called resection or resective surgery. In this type, the surgeon removes the area of the brain that causes the patient's seizures. (The name of the specific procedure generally ends with "ectomy," which means removal by cutting.)

The most common type is called a temporal lobectomy, in which part of the temporal lobe of the brain is removed.

The goal of resective surgery for epilepsy is most often cure of the seizure disorder.

The second, less common type of epilepsy surgery interrupts nerve pathways that allow seizures to spread. The term disconnection is sometimes used to describe it.

One example of this kind of procedure is called a corpus callosotomy. (When you see "otomy" at the end of a word, it means that that thing is being cut.)

A procedure called multiple subpial transections is another example of this type of surgery. This procedure may be helpful when seizures begin in areas that are too important to remove.
Disconnection procedures are generally thought of as providing relief, but not a cure.

I had a left temporal lobectomy back in 1990 and was seizure free for 14 months. Before surgery, my TC's were controlled by meds and I was only having CPs. After surgery the TCs were more intense and more frequent. So was the depression. We went thru many meds, trying to find something that worked for seizures and depression. Nothing seemed to work for me. We tried 12-14 different meds over the years and finally tried the VNS. That helped, but isn't a cure all. My memory is out the window. And yes, headaches are a common thing for me now.

 

[Afriend]

Thank you for replying Belinda. I'm sorry you've had such bad results. But this is exactly what I'm worried about.

Maybe you can tell me if you experienced unwanted effects from the surgery? Especially effects the Doc's didn't even warn you about.

When this all started my friend asked the neurologist "will there be side effects from the surgery?" The answer was "Yes you won't have seizures anymore". That was all my friend needed to hear. And I do understand. My friend is D. I've known D since we were kids. I've been with D when many seizures occurred. Her life long dream has been to get rid of the seizures. This neurologist s a big shot. She's also the 1st Doc that ever said that to D.

I spoke to D Wed and asked her if they gave her the names and phone #'s of other people they worked on? They were supposed to. D said no, and it's too late now. So I thought maybe I could find some people online willing to share their stories. So I do appreciate anything you can tell me.

 

[Tez_20]

Thanks for responding Zolt and Tez. We don't know yet what kind of surgery it would be yet, but I'm guessing a Focal resection of some sort. I have to hand it to you Zolt if you can read MRI's. I've only seen 2 or 3 and other than what the Doc pointed out, I didn't know what I was looking at.

In the past I was able to help this friend more than now. We no longer live nearby, and I no longer have a car. But I think you all helped me figure one thing out. The gliosis on the 1st MRI gave the hospital the financial justification to proceed with more tests. One worry is we're in an area where 2 major University Medical centers are competing with epilepsy surgery. This hospital seems to be using the older methods. The other is using a new form or surgical treatment. Until my friend joined a new HMO and was sent to a neurologist, she was a case they gave up on.

But besides that, I guess we have better machines than even 20 years ago. In the past, they could never find anything on any images they did to give them a reason to look deeper. This year they did. But I worry about side effects from the surgery. Her seizures are not in control. Stress can cause her to have almost 1 a day. But in low stress she has 2 or 3 a month. She does have a poor memory, but surgery isn't going to help and may make it worse. She never has headaches, and the few posts I read so far indicate headaches after surgery is common.

Thanks again.

Afriend your welcome...here in the UK no way do that let you see your MRI results..i found out about my brain damage and the extent of taking the right side through the surgeon after fully diagnosing after quite a few tests, did a diagram of my brain and damage and it was a proffesser who then told me.

:agree: about 20yrs ago and not having the correct machinery for testing like today, as my temporal-lobe epilepsy was diagnosed as schizophrenia.

I just hope you friend gets the best care possible on which ever root is taken

 

[Dolores]

I haven't had brain surgery (my seizures are controlled by medication) so I don't know any details but, that being said, I am wondering why "time is running out". With something as drastic as brain surgery (any invasive surgery is drastic) why is there some time limit unless your friend drastically needs it? That would be my first question. Can't she put it off until she knows more about all that will happen as a result?

I know some people here have had great success and others had great disappointment with brain surgery. If it were me, I'd want another or 3 opinions and I'd want up front and honest answers about the potential side effects. As Cint points out, it may not work like they expect it to. So why do they have such expectations?

Just my :twocents:

 

[Bidwell]

I just want to second what Dolores says. Get a second and even a third opinion, if possible -- I know that it may be impossible given all the strings involved with health care for older people. God bless you both.

 

[qtowngirl]

hi again afriend,

in Canada we're allowed to see all our test results, where do you live? Tez20 sorry to hear you're not allowed there, that's bollocks!
I attached this link to show some of the pics I got from my surgeon (top pic is a damaged hippocampus, bottom is post-surg, hole is about halfway down on right side).

maybe she can get real pissy and demand to see them, in this day and age they can simply email them to her with quick explanation of what she's looking at.

http://www.coping-with-epilepsy.com/forums/f41/hole-big-but-life-good-22931/

 

[Cint]

:agree: about 20yrs ago and not having the correct machinery for testing like today, as my temporal-lobe epilepsy was diagnosed as schizophrenia.

I just hope you friend gets the best care possible on which ever root is taken

I was diagnosed with epilepsy 34 years ago. True, we didn't have all the modern day MRI equipment, but we did have CT scans and EEG equipment for diagnosis. And I was initially diagnosed as having hypoglycemia, until I was in an accident.

And after I had my 1st unsuccessful temporal lobectomy, my neurologist suggested I have a 2nd surgery. We did another MRI and the neurosurgeon said he would not go there because the damage in my brain was too deep in my hippocampus. I could end up like an end state Alzheimer patient, unable to remember anyone, including my own name. Forget that, I already have enough trouble remembering names. And that is what the hippocampus area of the brain is good for- Memory. When it is messed with, memory will be effected.

 

[Belinda5000]

Hello,

I'll answer the questions you ask me.my seizures got worse as I got older I was 21 when I had surgery in Montreal,canada.

I'm med resistant to drugs in the Tegretol family except the original tegretol.

I'm allergic to 5 drugs and also iodine contrast and a soap used for surgery I can't use obviously.

I found out that Ialso had a heart problem when I was in the E/R for a seizure.I also have bradycardia/afib

I've had the same neuro for 25 years.I've been to a lot of specialist and they don't seem to know squat.

my memory got better when I was taken off Dilantin things started flooding back.

 

[Afriend]

Thanks everyone. We're in NYS. These new Docs are part of a large University hospital. D would never been seen by them because we're poor. Have you heard of the Obamacare medical plans. Due to this Obamacare, D came to see these neurologists doing research to help epilepsy. I guess the time thing is because if D refuses this now, she will go into an inactive file, and the Docs will move on to whoever is next. That's why time is short.

D's seizures are complicated. They aren't sure they all come from the temporal lobes. And some may come from both sides of the brain. I think this is all happening too fast.

 

[SlimBlue]

Hi Afriend. I understand about the 'inactive' file, and I realise D must want to be finally rid of the seizures.

But this is brain surgery we're talking about. I realise she may lose her chance at it by taking time to weigh up the details, but just what will she lose exactly? A chance at a procedure based on test results they're not sure of, trying to stop a condition they don't even know is left or right based, invasive no-return work just using the 'specialist's' best guess?

To be honest, I'd just stay on the meds. The statistics regarding various brain surgeries were enough to make me turn my back on it and never look back.

It seems the best way to help her is reducing her stress levels, and keeping those seizures down to a couple a month- is that frequency really so hard to live with that it's worth letting them experiment on her brain?

When I first met my last neurologist, within a few minutes of meeting me, she told me that they can cure epilepsy. She was beaming like a loon, and I still can't understand why she would say that- not having even read my notes.

I soon found out she's spent most of her life writing papers and doing research, not treating patients. She was so obsessed with work she'd been doing on MRI analysis of the deep brain, she wanted to be able to try out those experimental procedures on as many of her patients as she could.

Not to help them, mind you. Just to see if her research was any good.

 

[Afriend]

Hi SlimBlue,

I am totally on the same page as you. I just spoke to D over an hour, and she too is coming to this conclusion.

Ever since this started I've been asking, no begging, D to send me copies of reports that she has. She hasn't. I'm not sure she wants my help. I'm not a Doc nor a genius. But I know more about medical things than anyone else she knows.

Here is an example of an unanswered question. After she had a few seizures with the EEG connected to her scalp, her neurologist came in. The Doc said D's seizures are very complicated. What exactly does that mean? D never found out. This is because D soon forgot the Doc said that. That's why I always was with her. I don't forget as easily. Let me tell you what I think that word "complicated" meant coming from a neurologist that just read D's EEG's. I think it means the seizures don't always start in the same place. What's worse, they don't always spread the same. Sometimes they go 1 way, other times another. This makes sense because she has different kinds of seizures. So if I'm right, cutting out sections of brain is super dangerous.

I think she's going to decide against it. But she will always wonder if this would have worked.

If D was rich, there is a place in Colorado state where they grow a special type of Cannabis known as Charlottes Web. They have a lab out there that refines the plant into an oil called CBD Oil. You drink it. There is no THC in this oil. It stops seizures as well as the shaking in Parkinsons disease. It helps almost any brain illness. So far, only the 1 farm in Colorado can grow this plant, and only their chemists can turn it into CBD Oil. Our government won't allow Docs to use. How foolish. Almost all drugs came from plants or natural substances. Penicillin came from the crusty mold on old bread.

I think CBD Oil has worked for everyone who tried it. But we can't get it in NY.

 

[Tez_20]

hi again afriend,

in Canada we're allowed to see all our test results, where do you live? Tez20 sorry to hear you're not allowed there, that's bollocks!
I attached this link to show some of the pics I got from my surgeon (top pic is a damaged hippocampus, bottom is post-surg, hole is about halfway down on right side).

maybe she can get real pissy and demand to see them, in this day and age they can simply email them to her with quick explanation of what she's looking at.

http://www.coping-with-epilepsy.com/forums/f41/hole-big-but-life-good-22931/

Hi qtowngirl,

Someone to my liking :roflmao: swearing :tup:...you made my night.

Just to get access to your files from hospitals you have to wright to the administrater of the hospital first for confirmation and if they agree its £10 a sheet and in all the years I've had tests ive only viewed the state of my spine and back from the orthapedic doc.

Things aren't that easy here to access because I took action on doctor's with solicitors and they refused the solicitors at one degree and then they had to serve papers from the court...you'd really be surprised.

 

[Tez_20]

Hi SlimBlue,

I am totally on the same page as you. I just spoke to D over an hour, and she too is coming to this conclusion.

Ever since this started I've been asking, no begging, D to send me copies of reports that she has. She hasn't. I'm not sure she wants my help. I'm not a Doc nor a genius. But I know more about medical things than anyone else she knows.

Here is an example of an unanswered question. After she had a few seizures with the EEG connected to her scalp, her neurologist came in. The Doc said D's seizures are very complicated. What exactly does that mean? D never found out. This is because D soon forgot the Doc said that. That's why I always was with her. I don't forget as easily. Let me tell you what I think that word "complicated" meant coming from a neurologist that just read D's EEG's. I think it means the seizures don't always start in the same place. What's worse, they don't always spread the same. Sometimes they go 1 way, other times another. This makes sense because she has different kinds of seizures. So if I'm right, cutting out sections of brain is super dangerous.

I think she's going to decide against it. But she will always wonder if this would have worked.

If D was rich, there is a place in Colorado state where they grow a special type of Cannabis known as Charlottes Web. They have a lab out there that refines the plant into an oil called CBD Oil. You drink it. There is no THC in this oil. It stops seizures as well as the shaking in Parkinsons disease. It helps almost any brain illness. So far, only the 1 farm in Colorado can grow this plant, and only their chemists can turn it into CBD Oil. Our government won't allow Docs to use. How foolish. Almost all drugs came from plants or natural substances. Penicillin came from the crusty mold on old bread.

I think CBD Oil has worked for everyone who tried it. But we can't get it in NY.

Hi Afriend,

By what I've just read I find it abit concerning and if it was me no operation would be performed because if you have one lot of seizures or a dozen...when triggered in the brain the circuit cells do trigger different....mines like a bonfire going off all over the left side and that's why the surgeon wouldn't take that further risk.

They could disturb parts of the brain which maybe totally ok and cause more damage....this does need serious thought, although D hasn't got long in which to decide.

 

[Tez_20]

Hi Afriend. I understand about the 'inactive' file, and I realise D must want to be finally rid of the seizures.

But this is brain surgery we're talking about. I realise she may lose her chance at it by taking time to weigh up the details, but just what will she lose exactly? A chance at a procedure based on test results they're not sure of, trying to stop a condition they don't even know is left or right based, invasive no-return work just using the 'specialist's' best guess?

To be honest, I'd just stay on the meds. The statistics regarding various brain surgeries were enough to make me turn my back on it and never look back.

It seems the best way to help her is reducing her stress levels, and keeping those seizures down to a couple a month- is that frequency really so hard to live with that it's worth letting them experiment on her brain?

When I first met my last neurologist, within a few minutes of meeting me, she told me that they can cure epilepsy. She was beaming like a loon, and I still can't understand why she would say that- not having even read my notes.

I soon found out she's spent most of her life writing papers and doing research, not treating patients. She was so obsessed with work she'd been doing on MRI analysis of the deep brain, she wanted to be able to try out those experimental procedures on as many of her patients as she could.

Not to help them, mind you. Just to see if her research was any good.

I have to agree with Slimline on this....I asked for the operation when I found out because I felt lonely and desperate years back and thinking why me but as the years have progressed and my seizures still aren't controlled...i'm just glad i'm popping meds where I could have ended up a veg.