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Surgery -- experiences?

Hi everyone,
I am going to be evaluated for resection/laser ablation or RNS implantation. The first step will be the intracranial EEG. From the MEG test that was done, there seems to be activity coming from the temporal lobe, and from the EEG, there was activity in the parietal lobe.

I was wondering if you could share your experiences with any of these procedures, and any short or long term effects you experienced as a result, both positive and negative?

Thanks so much!

Comments

It's great that they were

It's great that they were able to gather some information via the MEG. The MEG is more effective than and MRI and EEG combined. So any result via an MEG is a good start.About the intracranial EEG? That was the approach my neurosurgeon took prior to surgery. They have to put you to sleep to get those points in place, in essence sort of like surgery because they are reaching more within. As a result, you will feel some pain/discomfort when you are awaking. Make sure you ask for that powerful pain meds they usually put in place via your IV.My surgery wasn't laser so I can't say much about that. That said, make sure you have a thorough conversation with your neurologist about the ups and downs to factor in with the laser surgery.In my case, given the surgery was close to language and speech and memory, I had to gear myself for setbacks in my speech and memory. And that's in part because of the proximity to those functions. I am not sure, in your case, what other functions might be nearby. My approach to surgery was simple. First, make sure you don't guess what the results will be. Guessing is not that good of a game. Make sure they outline what to expect post surgery, as in the ups and downs, so that nothing surprises you.Because my neurosurgeon told me about the setbacks in speech, I wasn't surprised that immediately I had some difficulties reading. Put it this way, I had a problem calling out scripted words that had more than two syllables. Luckily this was explained to me prior to surgery so I didn't get anxious about it. Surgery comes down to you being realistic about the ups and downs. This is where the conversation with your surgeon comes in. Find out about the mapping, as in what other features are nearby. In some cases many don't have to factor in language and speech and memory as I had to. So it comes down to your specifics.Also, neurosurgery requires a good relationship with your surgeon. By that I mean he or she keeps you updated on the findings and what the surgical approach will be. The more you know the less you'll be surprised by any setbacks, be it minor or more significant. Again, great that they were able to gather information via that MEG. Best Regards

I had a resection of part of

I had a resection of part of my right temporal lobe way back in 1993.  The seizures did not stop.  I tried many new medications since then as well as VNS with no complete control.   So I've been waiting for RNS.  When they finished my intracranial EEG this past March the surgeon recommended resection of more tissue from my right temporal lobe.  A date was already scheduled for this operation.  But I was aware there was activity coming from my left temporal lobe so I was not afraid to ask what resection on right would do for those.  I also asked if it would be possible to implant the RNS system first and try to make it work.  If after several years of treatment would it be possible to do a resection?  My surgeon was very nice and agreed, "Yes; we can try to go that route."  The resection was cancelled and I have had the RNS system in place for just over one month.  I certainly do not know how effective RNS has been yet since they only turned on the unit for stimulation of my left temporal lobe on June 19.  But what has been incredible to learn is that the device has been recording seizures that I did not know about!  RNS is a long-term treatment, while resection or laser ablation would be more apt to show quicker results.  I hope you have a good neurosurgeon and other doctors on your epilepsy treatment team with whom you also can have good and meaningful discussions.Mike

Hi sooihm, Thanks so much for

Hi sooihm, Thanks so much for posting. It’s important that you continue to express any concerns you may have and talk with your epilepsy team about your personal goals and expectations for epilepsy surgery, so they are realistic. To help prepare for your visit with your doctor visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgeryhtt... &  print our treatment fact-sheet  here: https://www.epilepsy.com/living-epilepsy/toolbox/treatment-factsheetsand take it to your next healthcare appointment. Then discuss with your provider the pros and cons of this option for treating your seizures.Learn more about testing before surgery, here:https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/te... more information regarding RNS: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/re... more information about Resection: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/ty... more information regarding laser interstitial thermal therapy or LITT procedure: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/ty... of the most important things to help you live with epilepsy is to find a support network.Learn more about your community support, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns . You may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org ,  epilepsy.com/helpline , where a trained information specialist can connect you to resources,  provide referrals and additional support.It is also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important:  https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health   The Wellness Institute:  epilepsy.com/wellness   ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family.  For practical & effective strategies to enhance your well-being, learn more here:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools  

Thank you for all this

Thank you for all this information! I will surely take a look at it.

Thank you for all this

Thank you for all this information! I will surely take a look at it.

Thank you for sharing your

Thank you for sharing your experience, Mike.

Thank you for all this

Thank you for all this information! I will surely take a look at it.

Thank you for sharing your

Thank you for sharing your experience, Mike.

Thank you Nigel, for sharing

Thank you Nigel, for sharing your experience and all your wisdom. I really appreciate it!

You are more than welcome Soo

You are more than welcome Soo. By the way, I used the term "setbacks" without being more specific; should have said "temporary setbacks". The surgeon may tell you that post surgery the brain has to re-wire. I say may because again, your surgery is laser so I am not too familiar with it.   That said, the fact that the team pushed for the MEG, which I also underwent, tells me you are in good hands. Best Regards

Hi Justin:So the aphasia you

Hi Justin:So the aphasia you spoke about was also my experience; still happens every now and then but rare. Ironically, my speech therapist is the one who told me about it. I had never heard of it. By the way, I think your strategy is great, that is to say if you can't recall the word, don't push yourself to find it. After all, as my speech therapist told me, that just creates more confusion. Just rephrase that which you are trying to say. Nice to see you don't try to hold tight to the word. It eventually shows up, at times. :)Best Regards

You are more than welcome Soo

You are more than welcome Soo. By the way, I used the term "setbacks" without being more specific; should have said "temporary setbacks". The surgeon may tell you that post surgery the brain has to re-wire. I say may because again, your surgery is laser so I am not too familiar with it.   That said, the fact that the team pushed for the MEG, which I also underwent, tells me you are in good hands. Best Regards

I am curious about the MEG

I am curious about the MEG scan - would you mind telling me where you had it done?

Hello Sherrod:I had it done

Hello Sherrod:I had it done at "Overlook Medical Center" in New Jersey. Here is the link to their Epilepsy Center outlining the tests. As you scroll down you'll see the mention of the "magnetoencephalography (MEG)" in the second paragraph. Just click on that and it should tell you more. It's in bold letters, if that's the term. :) You can also see their contact information on the right side of the screen as you slowly scroll down. If you are on the East Coast, preferably the North East, speak with your doctor about it. My surgery was in New York City but the MEG was a train ride away across the Hudson River at Overlook Medical Center in New Jersey. The train puts you off pretty close to Overlook Medical Center--visible from the stop. Best Regards

Hello Sherrod:I had it done

Hello Sherrod:I had it done at "Overlook Medical Center" in New Jersey. Here is the link to their Epilepsy Center outlining the tests. As you scroll down you'll see the mention of the "magnetoencephalography (MEG)" in the second paragraph. Just click on that and it should tell you more. It's in bold letters, if that's the term. :) You can also see their contact information on the right side of the screen as you slowly scroll down. If you are on the East Coast, preferably the North East, speak with your doctor about it. My surgery was in New York City but the MEG was a train ride away across the Hudson River at Overlook Medical Center in New Jersey. The train puts you off pretty close to Overlook Medical Center--visible from the stop. Best Regards

Whoops. Forgot to attach the

Whoops. Forgot to attach the link. Here it is.https://www.atlantichealth.org/conditions-treatments/neuroscience/epilep... Regards

Got the email with the link

Got the email with the link and THANK YOU so much!  We're in the Southeast so I am hoping we can talk his neurologist into at least considering the MEG scan done.  I saved the link so I can go back and communicate with them.  Again, thanks!

You are welcome Sherrod. Who

You are welcome Sherrod. Who knows, maybe there is a hospital in another neighboring state in the Southeast that might have the MEG. Be like me. Make sure you ask a lot of questions. As I like to say; "It doesn't hurt." :)Best Regards

Well apparently my case was

Well apparently my case was unique in itself.Worst is it was drug resistant. Started 13 years ago, Dr got in under control after a few months. Then all of a sudden it started acting up about 3 years ago so she tweaked the dosage because the body can get used to the meds. Slipped again so she added another med. Kept getting better and then worse. Eventually it got bad so I told the neurologist I would like to see someone that focuses on epilepsy so she gave me a referral to Barnes.After video monitoring EEG, Hogan talked about charts and said I have a drug resistant variation so my options were lifetime med rotation or surgery. I started seeing different departments for pre-surgery evaluation.During that the occupational therapist said what she couldn't understand was my one of my symptoms-numb right hand, moved up towards shoulder, after that I start to have a jamais vu feeling, occasional nausea. If it goes beyond that I don't remember anything-had some friends tell me I talk but what I say doesn't always make sense,- smacking lips, sweating, high BP (when the boss called a code at work the nurse said it was 200/122, a few minutes after is dropped to 150/86-still a bit high for me.) I've been told I get temperamental (I remember wanting to scream at the nurse and ask her if she knows how to check BP because there's no way its that high but I was with it enough to reign it in)What had the therapist stumped is she said I shouldn't be able to talk during temporal seizures What she thinks happened was I probably did something to hurt that area when I was younger so my body shuffled it around and moved the speech area somewhere else.

Hi Sherrod,I had mine done at

Hi Sherrod,I had mine done at Univ. of California-San Diego. It wasn't too bad of a test, not like the MRI, where you are stuck inside and can feel claustrophobic. Being a combo EEG and MRI, you have electrodes pasted on your head. You only go halfway inside the machine, mainly your head. And technology has improved a lot, so the EEG electrodes are not nearly as messy as they used to be in the olden days.Cheers,Soo

Hi Justin,Thank you for

Hi Justin,Thank you for sharing your experience.Which kind of resection did you have? What area?Thanks so much!

Hi Sherrod,I had mine done at

Hi Sherrod,I had mine done at Univ. of California-San Diego. It wasn't too bad of a test, not like the MRI, where you are stuck inside and can feel claustrophobic. Being a combo EEG and MRI, you have electrodes pasted on your head. You only go halfway inside the machine, mainly your head. And technology has improved a lot, so the EEG electrodes are not nearly as messy as they used to be in the olden days.Cheers,Soo

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