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Surgery -- experiences?

Sun, 07/07/2019 - 01:15
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

Submitted by Jazz101 on Sun, 2019-07-07 - 17:54
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

Submitted by birdman on Sun, 2019-07-07 - 22:03
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

Submitted by Anonymous on Mon, 2019-07-08 - 09:16
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/surgeryhttps://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/epilepsy-surgery-fast-factsDownload &  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/tests-surgeryFor more information regarding RNS: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/responsive-neurostimulation-rnshttps://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/responsive-neurostimulation/placement-programming-safetyFor more information about Resection: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/types-epilepsy-surgery#TemporalFor more information regarding laser interstitial thermal therapy or LITT procedure: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/types-epilepsy-surgery/litt-thermal-ablationOne 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  

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