Guest guest Posted October 26, 2004 Report Share Posted October 26, 2004 Hu? I am very new to all of this what are they going to operate on? D. Quintana Sierra Oaks Senior Living ________________________________ From: swebar@... Sent: Mon 10/25/2004 5:20 PM To: polymicrogyria Subject: VNS or surgery Has anyone experienced VNS or surgery for their child with PMG? We were told that those were our options at this point, but no one wants to tell us one way is better than the other. I would appreciate any of your experiences. Thank you, Joanne (mom to Larry, 8 yrs. old) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2004 Report Share Posted October 26, 2004 Joanne, Max had VNS surgery in June. The surgery itself is not too bad - sore for a few days but thats it. The VNS did not stop Max's seizures BUT one positive aspect is that it did stop the post-ictal blahs after the seizures. He remained alert much quicker after the seizures. The VNS helps about 1/3 of people with seizures. The good thing is that there are no side effects. We just started increasing Max's Lamictal and so far (knocking on all wood everywhere) we have been seizure free for 3 weeks!!! This is amazing as we had tried many drugs and the VNS and he was still having between 10-40 seizures a day! Thanks be to God! We just keep praying it works. Good Luck in your decision. Joanie & Max (4yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2004 Report Share Posted October 26, 2004 JOanie & Max, Thank you very much for your response. I will knock on some wood for you too!!!! Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2004 Report Share Posted October 26, 2004 Hi , They would remove the part of his brain that is the focal point for his seizures. One of the biggest problems though is that with PMG finding that focal point is very difficult. Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2004 Report Share Posted October 26, 2004 Hi Joanne! My daughter Carson has actually had 2 surgeries for her PMG/seizures. Carson is 2 1/2 now. Her first surgery was at 7 months old (she was having between 50 & 100 a day). This was a partial/focal resection on the left side. She was seizure free for about 4 or 5 months. Then, slowly she started twitching again.....it just got worse and worse (Grand Mal's & tons of partial clusters). She had 2 more EEG's and they concluded it would be impossible to pin-point it (but it was left side only). Then on September 20th (this year) she had a left side Hemispherectomy. So far she has been doing great. She is still on her meds, but I haven't seen any twitches at all. Her language has improved already in the last 4 weeks. Hopefully we can get her walking before her 3rd birthday in May. Her right side is weak, but her right hand was only a helper hand before. Hopefully, she will only improve from here. Hope this helps! SAHM to Carson Jayne 5-9-02 > Has anyone experienced VNS or surgery for their child with PMG? We were told that those were our options at this point, but no one wants to tell us one way is better than the other. I would appreciate any of your experiences. > Thank you, > Joanne (mom to Larry, 8 yrs. old) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2004 Report Share Posted November 1, 2004 Thank you Jenn for writing. We met with the neurosurgeon today who does not suggest surgery due to the multiple focal points and the possiblility of one re-emerging. It seems that VNS is probably our only option. We are still deciding what to do. Meds don't seem to do much good and I don't think any of us would survive the Keto diet. Let me know how you do it. Joanne Quote Link to comment Share on other sites More sharing options...
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