Grid Surgery

fifi74

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Hi All,

I haven't been on here for a while, but am wondering if anyone can share their experiences with me regarding grid implant surgery, followed by a temporal lobectomy.

I was diagnosed with left temporal epilepsy about 2.5 years ago. Since diagnosis (following a couple of tonic clonics), I have generally had approx. 5 - 8 complex partials per day (I usually speak gibberish with no memory of the episode. Occasionally, I also experience other 'funny' seizures like crying spontaneously for a few seconds, thinking I hear a 'special' word after which the sensation disappears). I have been on multiple AEDs, and am currently on three at fairly high doses. However, I still have no control.

I have had the pre-surgery work-ups but they have been unable to find the focal point. The doctors know it is in the left temporal region and possibly in my hippocampus.

Anyway, they are proposing that I have grids surgically implanted for a week. During that time they will conduct tests to find the focal point and if safe to do so conduct a left temporal lobectomy and possibly resection of one of my hippocampus. They can admit me in the next 2 - 3 months once I give them the go ahead.

I am pretty terrified by all of this (I've never had stitches, a broken bone, let alone surgery!!) and am wondering if anyone can tell me their experiences of having the grids inserted followed by surgery? Not only am I scared of the surgery itself, I am scared about the week whilst I have the grids - ie. potentially having a tonic clonic and hitting my head with the wires poking out etc.

I'll be having it done at the Royal Melbourne Hospital (in Australia) - so if anyone has any experiences of that hospital I'd be interested also.

Thanks so much!
 

alivenwell

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I often read the term, but what exactly is a 'resection'? Is the hippocampus cut into separate sections?
 

qtowngirl

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I often read the term, but what exactly is a 'resection'? Is the hippocampus cut into separate sections?
Resection is removal through excision. To have a temporal lobe resection simply means to have part of it removed (cut out).
 

pfincher

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Have you had the MEG test? My Doctor is having me do that test to hopefully avoid having to do the Level 2 (intracranial EEG) surgery to pinpoint the focal point and to also keep from damaging any tissue that is normal/being used. They know the general area in my Left temporal Lobe that is causing my seizures but are trying to narrow it down. If they can't with that test I will also have the same surgery. Good Luck!
 
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Been there, done that. I had the MEG, Wada grid implant and temporal lobe resection all within ten days in 2004. I was pretty scared too because had never even had a broken bone. I talked to my doctor and two of the surgeons that would be there. That helped a lot, I went in knowing who they were and trusted them and there were no problems. The only downside was that my seizures came back ten months later but I have no regrets, they are not as severe as they were prior to the surgery. The last time I saw my neuro she suggested another surgery.
 

fifi74

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Thanks so much everyone! I've just spent another week in hospital having video EEG. I had some tonic-clonics and regular ictal activity, so the doctors have a great deal more data pre-surgery. This has made me a little less frightened, but I'm still nervous about the surgery now scheduled for mid-July.

Thanks for sharing your story LMReggcellent - it's good to hear from someone who's been through it all before. pfincher, I'm not sure if I've had a MEG test?

Best wishes to you all...
 

suebear

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I had a resection done. Now with me it was specific because I needed to have a removal of a scar that was caused due to high fever.

I am unsure as to why they would be doing that type of surgery on you. What I can answer is the reason for the grid is that is used for testing purposes. The grid is placed onto the brain and the patient is tested to find out the most safest way to remove the area that is causing the seizures.

For example, in my case, they discovered the scar was causing blockages of brain waves to move and the hippocampus had a lot to do with these blockages as the brain waves could not stream through as they were supposed to. So the grid did a few things.

I went through a test which was done in the hospital and it showed them the safest route that could be taken for removal. Now, the reasons for doing this test are because where your memory is placed is very important. You have short term and you have long term memory. They do not want to remove your long term memory and they do not want to impact your short term memory.

The doctors your neurologist and the neurosurgeon should explain all of this to you and how the surgery will take place including the testing itself as what was done to my may not be how your surgery will take place. I highly suggest you ask both doctors what will be done instead of asking here. You have the right to know what they will be doing to you during the surgery and the doctors will discuss the matter with you and be open and honest so you are aware with what will take place.

The best thing I can suggest is to write down all questions the night before your visit so you are prepared. Another thought would be to have a family member go in with you so you have support and they can hear information which you may not.
 
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I had the grid with a temporal lobectomy. And a mapping of the brain to see where everything was.This was in Seattle at Haborview Medical center and UW. Long time ago. Mapping was easy but wierd. The grid was a pain because they take your skull off stick in the fridge (as my doctor jokingly put it)put the grid on with your skin. Lovely thought huh? Then they monitor your brain with that lovely grid for about 3 to 5 days. Then they usually do the lobectomy right there. The grid is the hardest thing to get through. But if it helps I say go for it.
 

suebear

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I had the grid with a temporal lobectomy. And a mapping of the brain to see where everything was.This was in Seattle at Haborview Medical center and UW. Long time ago. Mapping was easy but wierd. The grid was a pain because they take your skull off stick in the fridge (as my doctor jokingly put it)put the grid on with your skin. Lovely thought huh? Then they monitor your brain with that lovely grid for about 3 to 5 days. Then they usually do the lobectomy right there. The grid is the hardest thing to get through. But if it helps I say go for it.
I did not have to go through that much pain with the grid, I was actually knocked out during it and was under a pain drip to resolve headaches. I had this done at Univ of MD. Furthermore, my neurologist was quite professional with me and did not use the unethical tone of explaining the procedure. It was actually quite simply put to me, how the procedure is done, the skull bone is cut and replaced easily... it is not placed anywhere but back onto your your head -- not into the fridge as you put it.

As for mapping I can tell you from experience; I have had it done in two different scenarios. The mapping that took place before the first surgery I was wide awake during it so they could see where the seizure activity was taking place. As for the second mapping, it took place at the University of Nebraska in Omaha and this particular type mapping used a high technology in comparison to the surgery done in 1995. This time, I had a seizure that lasted for five minutes and they were able to view an exact area where the seizures are coming from which gave better control when placing the lead for the DBS into the core of my brain via laser.

Neither surgeon nor neurologist spoke of the surgery in a joking matter; both were very straight forward and professional on this critical situation. I honestly think that medical professionals need to consider the patient first before speaking about this type of surgery. A patient is nervous enough the last thing a patient needs is a doctor who speaks in riddles instead of the honest truth. That makes me nervous just thinking about it. :twocents:
 
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Wow you had a seizure durring the mapping. That's interesting. No , I don't want to make light of it. I love my Dr. It was 2001. My skull was so thick that it was very painful. And I had blood transfusions. My Doc and I are very close.He is retiring this year. I am going to miss him. He's a good friend.
 

suebear

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Wow you had a seizure durring the mapping. That's interesting. No , I don't want to make light of it. I love my Dr. It was 2001. My skull was so thick that it was very painful. And I had blood transfusions. My Doc and I are very close.He is retiring this year. I am going to miss him. He's a good friend.
Yes, the second mapping that was performed in 2011 was performed before the DBS surgery and I was taken off my medication intentionally so I would have a seizure and the seizure activity could be seen.

The neuro team who was going to be working with the surgeon actually was able to map out the core area and get a better planning idea on where to place the DBS. I was informed it was the first seizure that actually helped the team to plan out the surgery on where to go. What made it interesting is where they had to place the lead of the DBS. It is in an area that is quite deep to meet the needs of seizure activity taking place. Something else that did take place during the DBS programming is instead of using quad setting it was placed on bilateral as it is safer for me.
 
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fifi74

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Hi All,

Apologies for not responding to all the valuable information you've shared. Well, I am very pleased to say that I am now returned from the surgery. It ended up taking a little long than was originally expected but succesful in the end!

I went in for the grids and depth electrodes in mid July. That surgery went well to begin with, but a day later I started to bleed (apparently a normal reaction often made by a 'healthy' body). So, a few days later they removed my bone flap, but kept the grids etc in place. Oddly, for someone who has 5 - 10 complex partials and the odd tonic-clonic, I did not have any seizures while the grids were in!!! I did have a lot of ictal data but just no typical seizures. So, the decision was made to leave the grids in for 3 weeks and I did eventually have a few tonic clonics at the very end. It was pretty boring being bed confined for that long - thank goodness for good family, friends and nurses!!

Anyway, the final surgery was held in mid August. It was an awake surgery, although I don't really remember being awake for a few hours. Shame as I'd really like to remember it now - what a fascinating experience. Because of the data they were able to capture even closer to the surgery they did not have to move with a full temporal lobectomy as they found a 'last minute' lesion etc in posterior area and only needed to remove a smaller brain section. Overall they are now really happy they have removed what was required. I will need a little bit of speech therapy, but that should correct itself within the next few months or so.

Overall I find my neurologist, neurosurgeon, neuropsych and others absolutely supportive, informative, down-to-earth people and my experience was made all the easier because of them.

Thanks also to all of you for your advice and input - it really helped me to prepare for the surgery I was terrifying about!!

I hope all is well with each of you ...
 

Cez

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Sorry to bump this thread but rather than starting a new on thought I'd post here. Since zonisamide and lacosamide didn't work for me. There aren't really any other option left apart from surgery.

My neuro would like me to undergo this procedure in the new year, I have epilepsy in the frontal lobe, has anyone had it on the frontal lobes? as I can only seem to find people who have had it on the temporal lobes, I have to be honest I've never been this terrified, just wondering if I could get some insight as I imagine the positioning and effects are quite different between the frontal and temporal lobes. Thanks everyone x
 

Nakamova

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Surgery's definitely a very serious step, so you're right togather a lot information before going forward. I don't know if any CWE members have had frontal lobe surgery -- if so, I hope they'll chime in. You can read about more about it here: http://www.epilepsy.com/EPILEPSY/FRONTAL_LOBECTOMY

Just out of curiosity, have you given neurofeedback a try?
 

Cez

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Thanks for the info Nakamova, I haven't tried neurofeedback, I don't know where I'd get it round these parts to be honest! I will definitely look into it though.

As I want to try as many things as I can before surgery, scares the poop out of me, but my neuro seems pretty determined that its for me.

I really hope someone else here has some info. Its scary as you may know all my personality and movement is stuffed in my Frontal Lobe, and I kinda like me so I'd like to know if anyone has experienced behaviour changes etc. Anyway, I always appreciate the info. Thanks again x
 

Nakamova

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Cez

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Wow!! You really are a font of knowledge!! What would we do without you Nakamova!! :D
 

suebear

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A thought on where to search - Have you checked Google Scholar to see what would appear for frontal lobe surgery as it is a large free search engine that can provide documents for download and viewing if they are available.
 
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